Topamax Lawsuits

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Published: April 1st, 2011

The epilepsy and migraine drug Topamax, which is also available as generic topiramate, has been associated with an increased risk of major birth defects. Research has found higher than expected rates of babies born with cleft lips, cleft palates, genital defects and other birth malformations when the drug is used during pregnancy.

TOPAMAX LAWSUIT STATUS: Children born with serious birth defects, such as a cleft lip or cleft palate, may be entitled to pursue compensation through a Topamax lawsuits.


MANUFACTURER: Topamax is manufactured by Ortho-McNeil Neurologics, a subsidiary of Johnson & Johnson. Generic Topamax versions have been available since 2006.

OVERVIEW: Topamax (generic topiramate) was first introduced as a medication to treat epilepsy, which is a neurological disorder characterized by recurrent, uncontrolled seizures. In 2004, the FDA approved Topamax for an additional use of treating migraines, and it has since become one of the most widely prescribed migraine medications in the United States. The drug is also often prescribed off-label to treat bipolar disorder.

TOPAMAX BIRTH DEFECT SIDE EFFECTS: In March 2011, the FDA issued a warning that Topamax side effects may increase the risk of oral cleft birth defects, such as cleft lip and cleft palate, among babies born to mothers who took the drug during the first trimester of pregnancy. As a result of inadequate warnings previously provided, many women were not aware they may be exposing their baby to a potential risk of Topamax birth defects.

The FDA has urged doctors to avoid giving Topamax to pregnant women or women who are of child-bearing age and at a high risk of pregnancy. Alternative epilepsy drugs may not carry the same risk for the unborn child.

In July 2008, a small study published in the medical journal Neurology identified a potential link between the use of Topamax during pregnancy to an increased risk of serious birth defects. Children born to women who used Topamax during pregnancy were found to develop a cleft lip or palate at a rate 11 times hirer than would be expected in the general population. The study also indicated that children exposed to Topamax developed genital defects at a rate 14 times higher than would be expected.

The FDA required new warnings in 2011 after data from the North American Antiepileptic Drug Pregnancy Registry found that children born to mothers who took Topamax during the first trimester of pregnancy experienced an oral cleft about 1.4% of the time, compared to a prevalence rate of between 0.33% and 0.55% associated with other epilepsy drugs.

TOPAMAX CLEFT LIP AND CLEFT PALATE LAWYERS: Potential lawsuits and class action claims are being reviewed by Topamax lawyers as a result of the drug makers’ failure to adequately research their medication or warn about the potential risk of cleft lip or cleft palate when Topamax is used during pregnancy.

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There Are 319 Comments So Far • (Add Your Comments)

  1. My wife had been recently taking a prescription of Topamax for her migraines. Well, she had tingling in her right arm with two numb fingers, vision impairment, short term memory loss, severe weight loss (she lost 35 lbs from an original 140), severe fatigue: constant physical malaise, OMG! Now that I am researching this after the doc has put her on something else, I am amazed at the problems this drug is associated with. This makes me mad that the drug company does not put out more significant warnings than the usual tiny print on the Walgreens sheet.

  2. My doctor had prescribed 800mg of Topamax beginning in 1999 for treatment of bipolar disorder and sleeping disorder. Cognitive problems were severe especially concerning language. Short term memory loss costed me my employment. I had an attack, of what was first thought to be MS, but later was proven not to be the case. I now have permanent neurological damage to the left side of my body.

    If this wasn’t bad enough, I developed osteomalasia (softening of the bones) leading to a catostrophic break of all the bones in my left left with my ankle snapping off. Almost two years later I suffer from chronic pain, tendonitis and difficulty walking. This condition was determined to be caused by severe acidosis (in my case renal tubular acidosis) a condition known to be induced by Topamax in almost 26% of patients, even the the lowest dose. My citrate levels were among the lowest seen in the country. I was on the brink of renal failure and possible death. It was then a nephrologist suggested I quit taking Topamax before it killed me. No other doctor was aware of this potentially lethal side effect.
    I quit Topamax and my condition improved immediately, although my kidneys have been damaged.

    There is vague references to this side effect and few doctors are warned that patients should have their citrate levels monitored while on this product. A class action suit should be considered.

  3. My wife still has not begun to regain her weight nor her strength. This has significantly prevented her from being able to return to work. And… since she was employed at a church, there is no unemployment.

  4. I used to take Topamax, but I started getting blurred vision, dizziness and my hair started falling out. I quit takingi it, my eyes are better but not like they used to be. My hair is still falling out.

  5. Severe reaction to Topamax, not monitored by Neurologist.
    Hospitalization twice. Questions regarding “Class Action Suit” I had seen noted on Web MD.

  6. I had a seizure during June 2007, and my neurologist prescribed 100mg of Topamax. I experience many symptoms. Some of which were immediate, and some that increased over time. They are: extended periods of numbness in my limbs, dry mouth, muscle pain, loss of appetite and rapid weight loss, increased urination, increased heart rate, confusion, severe fatigue, extreme insomnia, slowed thought process and difficulty concentrating and making decisions, slurred speech, and severe depression. I tried to explain some of these problems to my neurologist and he just waved them off as basic symptoms of the medication. Never once did he explain to me that Topamax could lead to severe difficulty with concentration, memory loss and depression. Even after the FDA announced that seizure medications can lead to severe depression and suicidal behavior during February 2008. My license was pulled immediately after the seizure, and I wanted to cooperate as much as possible to get back on the road. So I continued taking Topamax. It wasn’t until I fell into a period with extreme memory loss, insomnia and depression that I changed to a new physician, who prescribed a different seizure medication. My insomnia was so powerful that I was sent to a sleep specialist to determine if I had some form of disorder. After changing to a new medication, these symptoms gradually lessened over a period of five months. However, the damage was done. This medication had a detrimental effect on my work performance and placed a tremendous strain on my family and personal life. This medication should be taken off the market.

  7. i do not use topamax any more but still suffer from migraines . i was taking 100mg 2x daily, stopped taking in 2004. while i was on topamax i was arrested for dui , i do not drink …experienced alot of confusion and some numbness in my hands. i still have severe numbness almost like my hands go to sleep and with severe tingling when the blood starts to flow back into hands, eye sight is bad and eyes sort of jiggle when trying to read. this has had detrimental effects on my ability to work ..i am a painter. i would very much like to see this medication taken off the market before it ruins anyone elses life. i’d like to here from others and what your doing about it i know that i took this medication of my own free will but it really has done damage in my life. i took the advice of my nuerolagist and i am paying a price for believing he knew best.

  8. 4 years later and my life is still a mess because of topamax. if you are on it please stop taking severe side effects and it could kill you! doctors don’t tell you side effects only benefits . i am a painter and have a very difficult time seeing and holding a paint brush for long periods of time withoiut pain in my hands.

  9. Taking topamax for migraine prevention (150 mg daily) Was walking to work and blacked out (thank God was not driving) Spent 2-1/2 days in hopsital ran all kinds of tests, no stroke no seizure. The hospital thinks it this was caused by the topamax. Now right side of face and body is numb. Can not drive so now, have to find ride to work and pick up kids. Now being weened off of topamax

  10. topamax ia a dangerous drug and somebody need to take what is being said here seriously, this drug almost killed me, i took myself off of it because my doctor wouldn’t. i lost 32 pound in one month blurred vision temporary memory loss, there is nothing as scary as not knowing where you are ,cant find your way home or remebering you have a cell to call someone to come and get you,or having breathing problems and being sent from doctor to doctor they know you are having a problem but cant figure it out. i know what you people are going through.

  11. i have been taking topomax for 1 month…i had been suffering from migraines at least 3-4 times per week…
    in a month i had 1sonce starting topomax
    but lately i am unable to stop crying.
    3 years ago, our 5 year old daughter passed away, and i cannot stop thinking about just being with her again. not sure if this is my normal holiday grief, or topomax, i do not want migraines again,
    but i am so afraid that these thoughts i have are getting stronger.
    i have 2 more little girls to take care of

  12. I have suffered from migraines all of my life, I have been taking Topamax ofr two years. It was increased to 100mg 2x daily. I have no desire to live. Isat with a gun to my head the other day but was afraid my kids would find me. I have severe drepression no energy, can;t hold a job and above all I still have migraines 2 to 3 times a week. Neither of my doctors will take me off, they say it may do more damage, but at this point I don’t know for sure what is killing me the headaches or the medicine.

  13. I started Topamax for migraine prevention. I spoke with 3 different doctors abouot the medication, I was told about the numbness and taste change and possilbe weight loss, but nobody talked about the serious vision loss. After one week my vision went from being fine, to me not being able to see 12 inches in front of me. I was only one day into 50mg a day….. We cant find much research showing when or if my vision will return. Its a waiting game and its scary… The doctors now dont have any answers.

  14. On my amazement, after just comming home from the hospital , my brother gave me this information. I could not believe what I was seeing. I had been suffering every day with suicidal thoughts, before I finally OD’d. This, after having my Topomax increased to 200 mg. I told my Psychiatrist about this after still feeling suicdal, after taking an additional medication. I reduced my Topomax to half (100 mg) So far… I am feeling normal. This could have been a fatal death for me.

  15. I have been on Topamax for I couldn’t imagine how many years now. Each time my headaches/migraines get worse, my neurologist just increases the dosage. I’m concerned now reading all of these comments and I have been experiencing quite a bit of memory loss. I’m too young for this. How do I go about weening myself off? And, does anyone know of natural methods of reducing migraines? Confused and Scared.

  16. I began taking Topomax for migraines in Jan ’06. From the beginning I had serious numbness in my hands and feet which lasted about 3 months. Within a couple of weeks on the medication I would lose words as a teacher this is difficult to overcome in a middle school classroom. My doctor advised me of these and of a few other side effects. She was concerned that I would need to see my eye doctor because of the possible vision problems (very vague, I am a contact lens wearer – I had constant “dry eye” along with other acuity issues). I was trying to lose a few pounds after Christmas and found the weight lose to be a positive side effect at first. Within 3 months I had lost 35 pounds, but when I tried to maintain my weight I found that every week I was still losing 1-2 pounds until I was down to 105 and could maintain that weight, my husband was concerned but we didn’t think it was the medicine. After one year on the medicine, I fell into a deep depression and could not SLEEP. I could not help my family, was failing in my job, and wanted to kill myself. My husband took me to the doctors, who first implied that my husband must be abusing me in some way and then prescribed Cymbalta for depression. My husband and I went to marriage counseling and threatened each other over and over with divorce, our 2 boys victims of this emotional rollercoaster. On the Cymbalta, I had a vague felling that I didn’t care what else happened to me. I was a ghost of myself with a degenerating memory and a deep hunger for SLEEP (which Cymbalta helped with). In the spring of ’08, I began to have horrible migraines again, severely blurred vision, a halo headache 24/7, and constant dizziness (like I had just come off of a merry-go-round). I could not exercise or walk far due to the off-balance feeling. I stopped taking both medications in July, but the symptoms remained. Finally, one day in September I was having a horrible headache and discussing a work issue with a colleague when she interrupted me to ask how I felt. I shared that my head and left eye were killing me. Apparently, my left pupil was constricted while the right was normal and responsive. She suggested that I go to the minor emergency. After several brain scans and being referred to multiple doctors to help with the vision problems, dizziness, and chronic headache, I was given a clean bill of health. Now after being off of the medicine for almost 6 months, I feel pretty normal again. I didn’t know that I could feel so well, in fact. My memory, vision, and cheerful perspective on life are back and so are the migraines. I have a new strategy for pain control now – avoid triggers, eat right, drink plenty of water, exercise and try alternative pain control choices (accupuncture, yoga, physical therapy). Topomax did resolve the migraine pain and when I am unable to function I think about that positive of the drug, but it was not worth losing the rest of my life. If you are taking Topomax please think about your options.

  17. Weened off Topamax now but still have radiculopathy in my right hand and foot and some pain was given gabapentin for the radiculopathy and it is not helping

  18. I have been taking Topamax for an eating disroder for some 2 years now. In the beginning I did experience the inability to think of a word, and I do get the intermittent tingling and also the halos on vision very early in the morning. Aside from that it has hellped me to not binge eat and I am fine on it. I am monitored by a doctor closely who is excellent. For me it has been an excellent drug. I have not had problems with it.

    He started me on 50mg and worked me up slowly. I am on 300mg and he stopped at that dose.

  19. I have been on topamax 50mg, 2 times daily for 4 years. I have been have a hard time remembering thing. I had went the migr. specialist got there and started crying for no reason. emotional roller coaster ride from hell I have been on. what did he do but put me on Effexor, this is one drug you have side effects on. (combine together.).. what’s up this some Doctors. Yes this works, not worth my live over. I’m coming off this med and i’m ready for a new me

  20. My wife Katina was on this drug, passed out walking to her office at hospital (thank God she was not driving) She was taking this for migraine prevention (100 mg qd) She has been weened off of medicine and is STILL suffering from side effects, generalized pain, headache numbness and tingling in rt side of head face and body, mood swings she flies off the handle and screams at kids over say spilling a glass of water. She is not the same person I married since this drug fiasco. I want my wife back! She has depression becasue she doesn’t know how to cope with this stuff. It is putting a strain on our marriage, our finanaces and our family. What is these side effects do not go away. I have been told to “Give it some time.” It has been almost 2 months since she stopped taking this drug

  21. I have diabetic neuropathy in both feet. I was prescribed Topomax because one of the side effects is to subside nerve pain. Unfortunately I suffered a stroke due to this medication. After taking for about 15 days, I woke up and did not know who I was, where I was and slurred my words and still do not have full use of my right leg due to the stroke (which happed in 2003). Unfortunately I learned too late to not use medications side effects….only use them as intended by the manufacturer. At 45 I am completely reliant on using a cane to manuever.

  22. Tell Jill on Dec 6, 2008 that her thoughts are not just the holidays, Topamax’s own site says 3 in 1000 experience suicidal thoughts, I just tried to committ suicide 2 days ago, fortunately it didnt work, I also have 2 kids and a husband and my advice would be to see counsel from your doctor or other professional. I wish I had and I hope by sharing this info that others can avoid my experience.

  23. Topomax saved my life about 3 years ago. I had migraine induced vertigo for a year and half and no one could figure out what was causing it because I never had headaches with my migraines-just the other intense symptoms.

    Finally a neuro discovered the cause via a MRI and prescribed Topomax which stopped the vertigo and kept me from having further “spells”.

    I now take 150 mg at night and did not really think about it but my vision has been worsening. I just thought it was because I was getting older. (about to turn 41).

    I am going to investigate further.

  24. Took 25mg of Topamax for approx. 2 wks, 4 yrs ago. It has been a nightmare ever since. I have permanent visual damage w/ increased eye pressure. I ended up w/ traumatic cataracts which required surgery. I then had material herniate thru the sac holding the lense, w/ vitreal debris, clouding, seeing the lense shake, red painful eyes, & glare. The vitreous detachments led to a detached retina for which I recently had another surgery. I will need a vitrectomy on the remaining eye. I finally had to quit work due to my inability to see well enough to function well. My eyesight was perfectly fine before I took the Topamax for boccasional migraine headaches. I have suffered functional & financial disaster b/c of this drug & we need to band together & get a lawyer that can look into this.

  25. I am writing this for my wife as she is not up to doing it. She has been on topamax for almost 8 years and ins, just stooped on Feb 20 so she has been with out. She was taking 150 mg and all the side effects she has lost a lot of her teeth root and all just fell out we did not know way we do now it was the topamax she also has nerve damage in left hand thanks to topamax. For the last 3 weeks she has been going through hell not having the topamax. She has been throwing up slurred speech bad chest pain headache and acts like some one with Parkinson’s and falling down. Today we went to the Doc, and he saw what was going on so he called the ins, and had them OK the refill. We told him she did not want to take it any more and he said to take it to cut down but could not find out how to do that in he’s book so he said to take 50 mg at the same time every day for a few weeks then start taking farther apart every day until you reach 3 days apart from last dose as it stays in the body 21 hours. People this is not a good drug nor is it safe stay away from it please. This demon drug from hell needs to be taken off the market.

  26. I have been on Topomax for almost four years. I am on the for migraine relief. I have a little tingling on my fingers and have lost weight, but i was overweight. My migraines helped relieve my headaches enough so I can enjoy my life with my two daughters and my husband. I read all the warnings before starting the drug and I drink extra water to protect my kidneys. I am careful about what I do and even if I’m not hungry I make sure I eat three healthy meals a day. I am glad I was put on Topomax and would be very upset if it was taken off the market.

  27. I was on Topamax for 2 years and had all the symptoms everyone else has listed. I also had worked for the prescribing doctor for 2 years so of course I trusted him to know what he was giving me for my migraines. Needless to say I had the gastric bypass done 3 years previously, so really couldn’t eat alot anyway, but found out that this medication causes Anerexia. My weight went down to 83 pounds and my gastric bypass doctor said I was days away from death.. Why would any doctor in their right mind give me Topamax?? I took myself off of it per my gastric bypass doctor’s suggestion, but still cannot seem to function or gain weight.

  28. I’ve had migraines for almost 12 yrs now, took every medication on the market and the only one that relieved the headaches was Topamax. After being on it for over 3 yrs, I found myself unable to remember basic directions and got lost in stores I had worked in. I had to leave my job for awhile while testing was done as I had no short term memory at all and couldn’t perform even the most basic tasks. Couldn’t even remember which way to turn out of my own driveway to go to town and had to have someone with me all the time. This drug scares me and I went off of it, but they later put me on a lesser dose because the migraines have gotten really bad and I’ve started having the memory problems again. I guess I have to choose whether to have no memory or no headaches……..I was tested at a well known clinic and they determined that I had lost most of my verbal skills and my short term memory. It took almost a year to regain it and at most, I’ve only gotten back around 85-90 %.

  29. I’ve been this drug since 2002. I had to ween myself off so many times do to fatigue, prickly pains and increasing visual discomfort. My optic nerves are swollen and my eyes are severely sore. I can’t open my eyes when I wake up every morning from trying to sleep. They hurt to open. My insomnia and depression are a mess. I have no hair. Even when I’ve weened myself off, the hair will not grow back. I isolate. I thought, per my physicians this drug was to help with my severe headaches, fatigue and vertigo? Unbelievable. I also lost my job from fainting. I can’t even explain things clearly and my thoughts are jumbled. I’ll never get my life back.

  30. Well for starters, I am 27 yrs old. 5 ft.0in. tall and now, 100 lbs. Remember this as you read. 3 and a half yrs. ago I was placed on Topamax as a mood stabilizer, and somewhat for weight control. At that time I was over 200 lbs. at age 23. Now standing at 5 ft. that quite a lot of weight and to lose all in just 19 months. I keep losing every day 3-5 pounds a night. At my lowest I have been 89 lbs. I looked like a skeletal person who was dying. It was really sad. That’s when I was taking Topamax every day @ 200 mgs. total. I hate it it has become such a loosing battle. I never feel healthy, very low energy, weak all the time-not my young self. I am on 100 mgs. 2 times daily. I have lost so much I have had to ask my Doctor if he’ll allow me to take them less frequently. So now I take my dose every 3-5 days. In addition to massive weight loss (which has left scaring stretchmarks) I have lost half my natural hair. It keep falling all over my apartment, in the shower, on my clothes, It keep getting thinner and thinner. Not only has these two side effects effected me but several others may be more severe…..I have a constant twitch in my left eye, upper and now lower eye lids for the past 3 months. There are times where I thought Topamax may have been triggering a migraine, (Iv’e never had Migraines before.) I will about one every two weeks or so get a pain behind my eyes that is so intense I begin to cry. That’s what I thought it was, but evidently from a little research on my own, I realized, that Topamax can cause a type of blindness and Glaucoma. I really fear this may have begun to start to progress in my eyes.I have as well lost most of my long term memory. I jumble words together I don’t sound as articulate as I could or used to. I don’t remember most of anything I learned in high school. I don’t remember my childhood, and family trips ect. I will leave out words in sentences, and my spelling is not like it used to be. I tend to slur my speech a lot.I don’t feel like I am caught up to my peers. I have also experienced pain in my hands when it gets minorly chilly, windy,foggy or cold. I will lose blood circulation and my fingers turn white with no pigment.My palms are a bright red under my white fingers. It is very painful. Iv’e heard of a condition called Rheiniods,? I don’t know if that is what I have been experiencing or not, but the blood tends to come back when I get warm again. I have suffered a lot from this drug, It seems as if it is aging me too fast. Be very careful to anyone who likes any weight loss or any other side effect that may appear to be positive at first, of this tragic medication, you may make you sick, very sick later. Don’t compromise your health like I have. Also if anyone can help with information about Topamax repair please let me know.

  31. Topamax destroyed my life. It was prescribed for migraines when nothing else would work. After being on it for months, my marriage began falling apart. I couldn’t see what everyone else could see. I was not “me” anymore. Lost too much weight. Hair started falling out and was aggitated, anxious, couldn’t concentrate or carry on conversations. This drug still haunts me. I walked out and left the most wonderful man that God put on this earth. We had it all. We did everything together and had a great relationship. We were married for 15 years and had two beautiful children. Hardly a harsh word was ever spoken between us. We were each others best friend. Now because of topamax, I lost the love of my life. The worst thing is that you don’t see it happening to you. It took me years to get off of it. Now life just doesn’t seem worth living sometimes knowing that I caused such pain for those around me and having to live everyday without my soulmate.

  32. I have been on Topamax for 2 1/2 months. My dosages have been varied due to side effects that scared the daylights out of me. Never more than 100 mg a day, at which point I was a vegetable. After such terrible side effects – pressure in the eye, loss of vision, blurriness, loss of speech, coordination, complete exhaustion, stopping mid sentence with inability to complete sentence, shaking tremors and spasms, muscle pain and weakness, falling down, crazy heart rate, resulting in losing my business, not being able to work or drive, – I finally had it. I talked to the doctors all along that I was terrified what was happening to my mind and body but they just said it was too soon to tell if Topamax was working or not.
    Out of pure frustration and concern for my own well being, I decided to try to taper off Topamax and then stop completely. I lost feeling in feet and hands, pins and needles, weakness in feet and hands as well as spasms- lovely. Too much to list. Frightened me so much I wound up in emergency thinking something else must really be wrong with me. MRI said all was fine as regards to MS or stroke, etc. Whew!
    Continuing to withdrawal and mad as @#*! that the Dr.s don’t know what they are prescribing to poor patients, Topamax is a dangerous crap shoot with bad odds. Funny to me how something as horrible as this drug can be prescribed in our government, yet medical cannabis prescribed properly with little to no side effects is a crime in most states.
    What have I learned from this experience?…be your own advocate. Don’t let anyone ever push you into saying something is black when you clearly see it is white. Get angry, state your feelings if you feel you are being harmed and brushed off and not helped. This is your life. Even if this drug has robbed you of your cognitive thinking…you still have the brain cells in you to make good decisions. Though Topamax and pressure from others about “not taking your meds” may knock your confidence for a loop – make yourself heard and know you are not alone.
    I’m thankful I live in CA where I can make legal choices that are not available to others in the USA. Shame on the drug companies. shame on the Dr.s that need to do their homework. Shame on our FDA for letting this horrible drug on the market whilst holding back natural herbal relief that grows right out of the ground for all to use without the risk of being killed or damaged for life. Shame on me for not doing my homework earlier and doubting myself and letting other decide for me.
    Good luck, hope you all find some comfort and fire in this message. We are our own best advocates. No one knows us better than ourselves. Freedom of choice is a wonderful thing – so thank you makers of Topamax, for helping me to find the strength inside to tell you….JUST SAY NO! to drugs – YOUR drug in particular. May you be recalled and not harm any others. May your profits plummet as you have made your $ on the suffering of so many others.

    To those whom have had success with Topramax, these blogs don’t lie- they are real people, not funded studies – you are the minority, and I am glad you are ok for now. Please be kind to those of us whose lives and health have really been affected by this “legal drug”.

  33. I have been on Topamax for 2 1/2 yrs for migraines. Without realizing what was happening I was becoming someone else. My mind could not hold a thought, memory, what memory, could not find the correct word when I needed it. I was tired all the time but could not sleep more than 3-4 hours at a time. I would cry at work……..and work. well my job performance started to slide and at of last week I was told if I could not improve in my job perforance………….with detail work and all the things I can do because of the medicine I will loose my job come August, 09. Has anyone lost their job related to this drug? If so what did you do?

  34. I have been on Topamax for five years now . I was on a 400 mg dose everyday. I too lost about 50 lbs with this DRUG in about my first year prescribed. I work for a Neurologist and see how this medication is handed out I have had the bad side effects , numbness , tingling , blurred vision , chronic dry eyes, abdomen pain, kidney infections, dizziness and the list goes on. The biggest problem was my vision. I have never wore eye glasses and I started having problems with seeing on the computer at work. I went and had an eye exam not to bad, Bi – Focals ! I played that down cause I had just turned 40 thought maybe that was age . No, my eyesight kept declining and chronic eyes were killing me. In one year I went to the eye Dr. three times and had three different prescriptions. All the Dr’s tell me my eye’s aren’t that bad I am thankful but I am now nearsighted and farsighted with chronic dry eyes. The bad part is I had 20/20 vision my entire life. Not to mention the kidney problems I have since taking Topamax. I cant remember anything I have to learn everything over and over again. I cant remember my sixteen year old daughter’s cell phone number, my fax number at work and I have been there four years! Some days it is like your memory has been erased. I am now on 75mg a day and trying to go completely off this medication.I see patients daily at work starting this and its like letting them leave with a prescription for POISON! These Dr’s are getting wined and dined by these Drug Reps and Patients are paying with their lives and health!

  35. I’ve been taking Topomax for a month for migraines, and finally connected the severe vision problems: extreme blurred vision, severe eye pain and burning of the eyes, redness and twitching of the eyes as dangerous side effects of this drug. My physician instructed me to stop taking it immediately, and I am hoping for successful medical treatment or reversal of the symptoms. I can’t read or see anything clearly, even with my glasses, and am having more and more trouble driving, even with my prescription sunglasses. I can’t read street signs or road signs. I can’t make out faces or recognize people anymore until they are right up in front of me (socially immobilized). I’m scared to death, quite honestly, of permanent damage.

    WHY are they still prescribing this, and why are there not warning labels on the bottles, instead of voluminous prescription information sheets (that those of us taking this medication can’t read anyway)???

  36. I was on Topomax for 9 mos went off of it cold turkey about a month ago because my entire left sidr went numb. I thought I had the onset of M.S.. I am still feeling tingling in my face and my tongue swells. This is a horrible, horrible drug. The side effects were never exlained to me in depth. I am in for a lawsuit, cause I think I have permanent vision damage. God bless all of you on this drug!

  37. I can not believe what I am reading. I have so many of these side effects…..if not all of them. It’s so sad. I have been on 200 mg. for about 10 months and now my neuro just increased the dosage to 300 mg. I have the tingling in my hands and feet. I am a zombie and constantly irritable. I have this constant neck pain that will not go away and my vision is very blurry. Constantly depressed too. My headaches have not gone away and my eyes are hurting as well. I hate being around people Is this normal????

  38. I was put on topmax for 10 months I lost alot of weight so fast it has messed up my skin from the fast wiegth loss. My wieght was 135 and in one month i went to 115. It took care of my headaches but it done a lot ofdamage to my mind and body. I did not know what to do in my own home. THEN the worse part happened. My hair started to come out by the hand full and i had always loe to fix my hair.I called the DR she saw the next day and took me off.that was March09 .This is the worst drug that has ever been given to anybody.I want my life BACK. i WANT TO SUE OTHRO -MILLER for putting this drug on the market without telling everything it can do to a person.

  39. I have been on Topamax for 2 yrs now for migraines. I had some of the s/e’s the first month; hands tingling, loss of concentration, loss of appetite…but after then it tapered off. I was on 100 mg a day & now on 75 mg a day & it works great for me. It just goes to show you everything doesn’t work the same for everyone. I’m sorry for all of you who’ve had a bad time, good luck finding something that will work for you.


  41. i was put on topamax by an nero. in? yr i think 2005. i was put on it for seizures and migranes. durring using this drug, i had many different symtoms. i experienced, numbness in my left arm and leg,vison problems,slurred speech, an memory lost. i ended up in pysc hospital for tempted suicide,there the doc put me on 600mg a day. i becamed very agitated . last year i was even having trouble walking, i had such terible pains in my back. even today i have many side effects. the wost one is memory lost. i feel like this drug has rubbed me of who i am, i have stopped this drug on my own 1 yr ago ,still have many side effects. this drug needs to be pulled. i now use vitamin B2 100mg tid for the migranes, it helps alot.

  42. On my amazement, after just comming home from the hospital , my brother gave me this information. I could not believe what I was seeing. I had been suffering every day with suicidal thoughts, before I finally OD’d. This, after having my Topomax increased to 200 mg. I told my Psychiatrist about this after still feeling suicdal, after taking an additional medication. I reduced my Topomax to half (100 mg) So far… I am feeling normal. This could have been a fatal death for me.

    Currently… I am no longer on this medication…and still have severe memory loss.

  43. I am in the military and right around basic training, I started getting severe migraines that would often last for days. Of coarse, they came along with all the additional effects such as vision loss, vomitting and so on. After giving me tons of different things, my doctor gave me Inderil. It lowers your blood pressure so I had to come off it quick as I already had low blood prewssure. It gave me a feeling like I was not even breathing. Finally, my doc referred me to neurologist who gave me Topamax. I only took it for a week before I realized I could not continue it. I was at the gas station one morning, opened my gas tank lid and just stood there staring at the pump, not knowing what to do with it. I never felt so weird and like I had no control of my brain. I stood there for 5 mins before someone came up to me to help. Moments like these quickly started affecting work so now I am off this medication and my doc doesnot know what else to give me. Any advice?

  44. I was on Topamax 2 different times because the doctors did not believe me when I told them my side effects within 14 days after taking this drug. I felt this drug affected my Central Nervous System my both hands went numb, I felt creepy crawly feeling through my back, my body would get a bad smell as if it were toxic and my right leg would get very week to were I was dragging it. I felt burning pain in my right hand and was told it was carpal tunnel and now it is severe. I need surgery right away. This made me feel I was getting nerve damage in different limbs of my body. My eyes became very soar, sensitve to light and I felt sidk all the time. My memory was terrible and was lost for words all the time. I went off it and would never touch this drug again! I was even getting pain where my liver was. I now have burning nerve pain all the time and do not sleep because of it! I cannot believe my doctor insisted I stay on this drug for seizures when it was making me so sick! She said it will make you loose weight. I feel my health is more important.

  45. it all started in 2006…i began to get chronic migraines…i was only 18 at the time…i had Mri’s and CT Scans done through many different doctors until i was finally diagnosed with chronic migraines… At the time i was already on Paxil for Anxiety problems and another anxiety pill i was supposed to take every 4 to 6 hours as needed for anxiety..I took this topamax the first day and i got sick to my stomach and slept all day. I took it the second day and within 20 minutes the whole left side of my body went numb, i had severe chest pain, my vision went extremely blurry and i was rushed to the hospital by my sister… they ran all kinds of tests and found nothing wrong with me and sent me home….i took it for a week longer not thinking it was the topamax and thats when it happened…..i was driving my sisters car practicing for my drivers test when all the sudden i just blacked out….luckily my sister got the car pulled over and stopped safely. i again was rushed to the hospital where i couldnt tell them my name or anything for like an hour…. they just gave me a shot for anxiety and said i had an anxiety attack…well i decided to stop taking everything at once and that didnt help…i started having severe upper right abdomen cramps…these went on from mid 2006 until mid 2008 and doctors kept telling me it was acid reflux…finally i went to a different doctor to get another opinion and found out that i had gallstones so bad that my gallbladder could burst any day so i had to get that removed….not only that but i kept blacking out and my blood pressure would plummet as low as 55/33 dangerously low. still no answers…i no longer have a drivers permit and i am not allowed to get my license til i stop blacking out…it has been 3 years now since i took this medicine and i have gotten almost bald spots on the top of my head and have been having severe sharp pains on the right side of the top of my head…so severe that they make me instintly scream and go to my knees…i dont know what to do any more i can’t bare the sharp head pains…i cant get a license til i stop blacking out and nobody can tell me why i am blacking out…i am only 21 and cant work cant see too well and can barely take the time to play with my one year old cause walking makes me so dizzy…not only that but i have about $22,000 worth of pointless hospital bills where they couldnt even tell me whats wrong with me….i really feel like i am dieing sometimes…always tired always a headache that never goes away just gets worse for 2 days then slightly better for 2 days…..

  46. This medicine has destroyed many precious things I had in life. Now my life has changed and I am not sure if I can regain them again. I used to be a good speaker; now, whenever I start speaking I get my speech just the opposite of what I intend to say or sometimes far off the subject. I used to remember everything; but now, I just can’t recall much of what I did earlier today when it is afternoon. It goes worse when it is the next day, I forget most of everything when I wake up the next day. I am one cool a never-angry person; under influence of those tablets I have hurt a lot of people, innocent ones physically as a result of hyper temper. I have lost the love of my life because of those tablets. I was so blinded to think rationally.

    I wish I could find a cure to heal all of these wounds.

  47. Well, it has been well over 8 months since my wife stopped taking Topamax, as directed by her primary care physician. She now is taking Vlaproic acid for her migraines, as directed by a REAL neurologist. The Topamax prescribing “neurologist” had told her “…oh, you might lose a little weight, but not that much….” Well, she still is in the recovery phase of restoring her weigot. She has gained about 12 pounds back after stopping the Topamax. She still looks like a WWII POW though. Her mind still is not back. Her ability to remember things is definately not returned. She gets angry for very minor or non-existant issues. She has alienated many. She used to be so very sweet and smart and innocent. Some of that is starting to return, but, it’s taking a long time. She can’t balance her checkbook. Her children and close family members are constantly questioning her logic about handling her personal life. Her new Primary Care Physician is aware of all of this stuff…and more, and is treating her with an anti-depressant now. I have $100,000 dollars over this, plus….the lady I originally married is no more. I am sticking by her though, in hopes that she will fully return to me. I gave up everything I had to come down here to Florida to be with her, and now I feel that I am so very alone in this. This drug has devastated me.

  48. I just realized that this place is a good log for progress notes because of the dates attached to each of the entries. We all need to use this. I also just read that I misspelled the “new” drug that the real neurologist prescribed: it is Valproic Acid. It is an old drug , but effective for all of the issues my wife is having with migraines. Her frequency of attacks went down from 2 everyday to maybe 1 every 2 months…if that. Valproic acid is also for seizure control, but, she has NO side effects so far. If there is a lawyer out there to take on a case against Johnson and Johnson about fudging the marketing about Topamax, and the destruction that I have experienced since my wife had been prescribed it, you can bet that I want to sue them. I think I would prefer to choke them while burning their toes off, but, I know the court system is better. Oh, and just a couple of months ago, since my wife still hasn’t gotten her mind back, she had lost her focus and started doing some crazy stuff one night and slipped and fell and broke her hip joint. Yes, I think this is directly a result of the side effects of Topamax because she had lost focus on keeping her eyes on path and being aware of her surroundings. This event alone has cost her physical pain and such. …and that is just one of the many things this drug has done. (see previous entries under Art and Arthur B.

  49. I was prescribed Topamax approx. 2-3 years ago as a weight loss medication. I haven’t taken the medication is approx. 2 years now. However, I am still suffering from memory loss. At times I feel like I’m crazy. I have difficulty forming sentences or remembering simple words. I avoid social settings because I have such difficulty communicating without sounding like an idiot. I used to consider myself quite intelligent. Now, I feel dumb. My job requires alot of reading, analyzing and writing. I am having great difficulty in performing my job and worry that it will be discovered that I just can’t do the job anymore. I hope a lawsuit is filed against the makers of Topamax for the severe side effects. I went to my primary care doctor about a year ago complaining about my memory loss. I went again about 4 months ago with the same complaint and concern (at the time I had no idea it was a side affect of Topamax). I recently made another doc appt. to discuss my memory loss and my struggles. I am 38 and should still feel sharp and alert. Instead, I am embarrased and ashamed to engage in conversations. I have read that some people, after stopping Topamax, notice a significant decrease in the memory loss. This has not happended for me. I think topamax should be taken off the market.

  50. SOME OF YOU ARE NOT TELLING THE TRUTH, AND YOU ARE NOT TELLING EVERYTHING!- Granted that different drugs affect each person differently and that is understood. However, by reading some of the stories here it is clear that some of you are not telling it all and are flat out exxagerating your affects. For instance, a few stories that have been told clearly reek of other medications interferring and or interacting with topamax! also who takes 800mg of topamax? that is not a safe dosage, that doc should have been sued!

    Anyway, – I took topamax a couple of years ago and I only experienced the tingling in my hands which lasted about a week, I experienced the fact that when I gave myself a perm I had to be careful because for some reason the topamax does weaken the hair and it becomes sensitive to perms and chemicals.. be careful with that. also, I experiences a 30pound weightloss in 4 months. this was great as I was trying to lose the weight. I remember after taking only the second pill of 50mg, I lost my appetite and did not care for food for four months! I only ate to live. that was great considering I am 5″2 and weighed 190pounds. also, I had a brief memory issue, where I could not think of the correct words. this did pass.

    I stopped taking the drug after about 5months because I had lost all of the weight needed. Well, almost immediately the weight piled back on.. so recently I had my doc to put me back on the topamax.. I have yet to take my first dosage. but I would like to offer some of you some advice. do not go over 200mg of this drug, and do not stay on the drug long. i personally think one year is too long. and just so you know, the drug stops working for weightloss after a while each person is different. – and DONT DRINK WITH THIS MEDICINE OR TAKE ILLEGAL DRUGS…. IT WILL KILL YOU!

  51. I have been taking Topiramate for 8 weeks for constant chronic migraines. I was perscribed 1 pill first week 25mg, 2 pills second week, 3 pills third week. Then, continue on 2 pills per day. After the first week, I reported to my neuroligist a severe ringing in my ears. My doctor stated this was not a side affect of the Topiramate. Week 3, I could no longer keep food down. I lost my taste for everything. I couldn’t stand the smell of food. Again, I was advised that the medicine could not cause this. I went to a ENT and found that I had permanent hearing loss. I reduced the amount of Topomax I take to one a day. Still get migraines. Still nauseated. Going to try and go back to work next week. My job is a thinking job so God Help Me.

  52. Thank you all so much for your sharing. Reading your experiences has been so helpful to me and quite informative. I was put on Topamax in December of ’08 while seeking treatment for the relapse of a compulsive eating disorder. Oddly enough, when my husband accompanied me to one session with my psychiatrist and mentioned that my mood seemed cyclical, I was diagnosed immediately as ‘bipolar’ based on that one statement and placed on Topamax that day. No tests, no attempt at and cognitive therapies, just one adjective from my mate and an Rx for this unbelievably ridiculous drug. I have been on 400mg per day since the initial titrate period was acheived in 4 weeks time and have experienced many of the aforementioned side effects. Numbness and tingling of the hands, feet and face…eye redness, pain and pressure…odd tasting carbonated beverages….being off-balance when walking or stepping on stairs or ladders…ringing in the ears…sudden onset of depression and two bouts of suicidal thoughts, despite having never been sudicidal before…some increasing agoraphobia and a decrease in desire for socialization with friends and family. I have had no diminished cognition, fortunately but I am ready to go off of this medication. If my doctor refuses to help me with this, as he was quite insistant I go on it, I will do it myself and find a new physician. The promise of weight loss was what was so compelling and convincing in the beginning. I think I’d rather be chubby than diseased or dead. Again, thank you all for sharing your experiences. This medication is CERTAINLY not for me. Thank you for helping me see the light. Sincerely…a fellow traveler :-)

  53. I took Topamax 150mg twice a day religiously from nov 1999 until June 2007 but, stopped only due to the cost. It was for BiPolar disease and it worked great! Recently I restarted at 100mg twice a day due to unbareable stress I felt I was not dealing well with. I thought I had early dementia – like Alzheimer’s. Now I wonder if was the Topamax!! But, I was off it for more than 2 years – does that mean it’s permanent? I get lost in my own neighborhood. I forget the name for things I’ve known for 47 years. I get afraid to come out of my bedroom. I thought I had finally found the right medicine for my disease – what a joke.

  54. I was on Topamax for 6 yrs. My doc wouldn’t let me go off. I found a naturapathic Doc to wean me off. I took 1 year to wean off, using 25mg tabs. She put me on a product called Standard Process. I took vitamins,minerals, and many other good products from that company, while weaning. I felt an immediate burst of good health as soon as I was off the last Topamax. I still have a terrible itching which feels like bugs biting me, which I’ve had for three years. It did stop for a week or two when I went off Topamax. I think I still have work to do on the natural side, to restore my health from the damage Topamax caused. I had many of the same symptoms that I read in these posts. I can work and think again. I feel that peace that wasn’t in the hell I went through.

  55. I was given topamax several years ago for seizure disorder and began suffering memory loss, problems with speach as well as low potassium . I also began having blood in my urin and kidney stones which as of two weeks ago was finally diagnosed as renal tubular acidosis 2. i suffer constant fatigue and pain in my muscles and cramping. I have recently started having problems with my vision and dizziness. My doctors have refered me to a specialist to ween me off the topamax and then send me to another specialist in stanford for my kidneys. i have an ihss worker who helps me with everything including my memory. i still dont know if any of this is reversable or permanant the doctor i just saw seems to think i will be on meds for my kidney for the rest of my life. this is scary and depressing.

  56. I have been on a strong dose of topomax for bipolar for quite a number of years. I cannot think straight, words will not come to me and I am in constant pain. I would feel like my head was just swimming around and I had no control over what to say or do. My memory is still awful and my joints are in constant pain. they are running tests to find out why when I first wake up I can not hardly move for about 2 hours. I have so many different things going on it is hard to figure out what the topomax caused but I expierced severe chest pains, insomnia, and increased heart rates.

  57. Reading these comments really irritate me. Not all medications are for all people. Some are going to experience side effects…some more than others… You need to follow your doctors orders (eg increase fluids, report visual disturbances immediately, titrate the medications SLOWLY, report ANY cognitive side effects, etc.) Most of these problems listed are because these patients simply did NOT follow doctor recommendations and report side effects in a timely manner (probably because most of them were simply seeking the drug for the weight loss benefit in the first place – a big NO NO)! I’ve been on the drug for years, and I experience some of the tingling, but take supplements to control it… I experience some fogginess when my medication is titrated up, but it goes away when my body adjusts to it, and I report all symptoms IMMEDIATELY to my doctor to avoid ANY SERIOUS AND POTENTIALLY LIFELONG PROBLEMS. Its your life people, be proactive!

  58. I was on Topamax for 6 years until the change from Ortho to the Generic cost me my job. Ever since I was on the Topamax I had had mamory loss, good weight control and the occasional shake that would wake me in the middle of the night. Then 6 months ago they switched from the Topamax to Topriamate just because they had to save $$$ I started having tingeling and numbness in my hands and bad headaches as well. I had made and appointment with my doctor a month in advance but 2 weeks before the appointment the symptoms all seemed to crash on me at 1 time while I was working. Told my boss I needed to “chill out ” for a little bit and I was told I was fired. Had an appointment moved up to the following Monday. I was told I could switch drugs, or come off and see if I might be seizure free. I decided to wait out the effects and they did level off for the most part, but soon my insurance lapsed and no way could I afford the $400 a month for the pills AND rent and other major bills!! I have been off for 2 months and have seen my weight steadily climb even though I am physically active. I have gone from 267 in June to 280 in July to 300lbx now!! I wish averything had been disclosed when it was prescribed and the Generic when it was switched by the Ins. Co. Even birth control pills come with a full page sheet on use and side effects, why can’t regular medicanes?? Right now I am going day by day trying to find a job and hope I don’t seize before I can get insurance again and try to get on another med that won’t effect my concentration and memory as much. Good luck to all who are and have taken this drug it is a crap shoot out there.

  59. My daughter was in the bathroom and fell back and hit her head, this was in 2007. Since December of 2007, we have seen the same nerologist and she keeps uping the doses of topamax to my 15 year old. When the neruologist up the dose to 150mg in the morning and 100 mg in the day-my daughter could not function normally and it started to affect her scholing also. She would drool,scream,laugh,hit,cuss,throw,said suiside thoughts,not eat,wont drink,would fall a sleep in school,have stomach pain, urine turned red, have fever,she could not even dress or feed herself. Since september of 2009, i have slowly decressed the medication-to wear now she is no longer taking any. The topamax has did severe mental and physical problems to the child.

  60. Well, back again. My wife has been off of the Topomax (with the new neurologist who speaks English… not Spanish) for about a year now, and she is doing much better. She is still severely weakened from the TOPOMAX (yelling at the lady called mamma). She is in physical therapy and has a superb neuologist … except for the 610 dollar an hour fee, who has her on Valproic acid. Wow! Seems rather odd that the oldest and one of the cheapest drugs is doing wonders for her seizure control and her migraines! Gee, instead of paying for kickbacks to the makers of Topomax, I pay the doctor directly. Hmmm… Well, Topomax might be ok for some, but, look out for the side effects. They can be long lasting and very hard to reverse. If I could only have the marketers of Topomax’s necks in my grasp……

  61. I had been on and off of Dilantin for years I came off the last time because I was highly adjetated. My doctor put me on Topamax. I had sever tingling on my skin every where. I could not stand for anybody to touch me. My moods were like a rollercoaster. One minute I would be laughing and the next crying. My memory what little I had due to Dilantin went to zelch. My husband would say we can’t afford for you to loose your memory because I depend on it. We would laugh because I used to have a picture memory. Lol. Not anymore. The different side affects really bothered me I kept telling myself that I would get better once my body adjusted to the new meds. Then my eyes started hurting like they could explode and I was having flashing in them. I thought it was just my imiagination. I gave it a couple of days but it got worse. A friend drove me to the doctor because I was not stable enough to drive myself. He took me off of the Topamax as quick as he could without triggering a seizure. My memory is better than it was but still not what it was. My eyes still have problems. But no flashing and no pain. I was on Topamax for less than 6 weeks thanks to the warning signs. Once you loose your vision you can not regain it. Oh if I tried to pay a bill on the phone forget it I couldn’t even type in a phone number much less a series of numbers for a bill.

  62. Topamax is a terrible drug. I took it for a few days and it made me sick.

  63. I was on 100mg of Topamax and at the top dose I suffered from memory loss. As in driving somewhere and forgetting where I was going, and nothing looked familar to me. I’ve actually had to call people and ask them where I was going. This is very scary. The worst part was seeing flashes of corpses hanging from trees (babies included) and it’s always with their guts hanging out. I have bipolar, but this was given to me to treat headaches. I have talked to several people and the corpses thing seem like a normal side effect. THAT SHOULD NEVER be a normal issue with a drug. Also, the depression and thoughts of suicide is just crazy, and if you are already bipolar you don’t need that happening. I vote it is taken off the market.

  64. My daughter flatlined at a drug treatment center …she was not given the drug treatment to help her come off the strong meds given to her by a doctor after an accident…help.

  65. I have suffered from migraines for a long time and have been told numerous times that it was from my asthma, and my brain not getting enough oxygen. I think that is a ridculous comment, and I have been trying for months to get on something for the continuous headaches. I have headaches no matter what time of day it is and the bad thing is Im only 17 years old. I was taking a drug called Bupap and it really helped for awhile, but then I became immune to it and it started causing what they call rebound headaches. So I got the meds changed and got on a different kind that didn’t help anything at all, so after about 8 months of suffering through headaches everyday AGAIN, I asked to be put on something that would help….My docter prescribed 25 mg Topamax 2x daily, and she told me take the Topamax everyday before I got a headache and she prescribed Bupap again and told me to take that when I got a headache. At first, the Topamax done a great job, then one day my little brother accidently hit me in the nose and I had a terrible migraine, it was so bad that I was crying. So I took a Bupap first and then like 6 hours later I still had a horrible headache so I took two Topamax. I had been cooking all afternoon, but suddenly I realized that my face was tingling and I could hardly see, I looked over it at first thinking it was the heat from cooking. Then, I began to black in and out and my face went numb. I got this huge rash all over my body, and I couldn’t see at all. My immediate thoughts were that I was just allergic to the drug, and I took two benedryll. I thought that would help, but the side effects continued to get worse. So I took two more Benedryll and the effects finally eased. I discontinued use of the medicine without consulting my doctor. I, still over a month later, am having horrible headaches worse than before I ever took the medication. I also at the time of taking the medicine started noticing difficulty getting up in the morning and staying awake all day, and got really bad thoughts about ending my life. I know that I said numerous times that I just couldn’t possibly take the stress of life anymore. I only took all together 50mg of the drug for 3 weeks and got these feelings so I know its serious, im just really glad that I stopped taking the medication when I did. I strongly encourage all other people taking this medicine to discontinue it immediatley.

  66. On September 2008 I had a stroke. I was hospitalized for 2 weeks I was unable to walk. In June 2009 I had another relapse and was hospitalized again! The attending doctor asked how long had I been on topamax and I told him 3 years at 250 mg for migraine prevention. After more test, we have now found out that I NEVER had a stroke! It is a complicated migraine that was caused by topamax I now have ataxia and I have to use a walker! My legs feel like logs everyday! I am only 35 years old yet I am trying to fight for disability all because of a pill!!! I am now being seen by Medical College of WI. A research hospital in the neuroscience dept.

  67. My daughter who is 16 has been on topamax for at least 2 1/2 years for seizures. She is now having so many medical problems. She is always fatigue, hands and feet are numb, went from a B student to a D-F student, she cannot remember anything for a test at school eventhough she has studied. They just increased her to 5 pills of 100 mg per day. Her body always hurts. I will be talking to her neorologist to try to get her switched after reading all your comments.

  68. I have been on topamax since ’01 taking 400 mg a day for daily chronic migraiines.I have had them for 40 years now (and no Mama that is NO lie),it has been my worst constant companion all these years. I suffered head trauma when i was 9,i will be 50 in Jan.
    Like all of you, i have “enjoyed” each and every one of these delightful little side effects that topamax has to offer.I especially am enjoying the ones i am just now starting to read about on other sites from other people and getting that “aha” moment.It’s the topamax that is doing that….wonderful,another d—- side effect ! I take the memory one with a little humor as sometimes it can be downright funny at times,looking at something and having NO idea what the heck it is,eating something and its what? And now i have a good excuse why i can’t get the kids names right.
    I too have enjoyed 20/20 vision all my life but in the last couple months,all of the sudden i can’t seem to see anything clear unless its arms length (at least)away.For a professional photographer,having ones sight go is NOT a good thing.My eyes feel like they are doing this “vibrating” kinda thing,and my left eye twitches(my right eye twitched a lot last year, it has just made the rounds).
    I plan to go in and talk to mr Dr. as i am up for renewing my prescrip. which i highly doubt i will do,but after reading the other replacements out there,they carry just as bad side effects(if you read up on them).
    I really didn’t think i would have started having some of these issues(esp. the eye ones)this late into having had used topamax for so long. I would be interested in reading (hearing??) from others who are taking the same amount (400 mg a day) for migs for a lengthy amount of time (at least 5 years).Thanks a lot :o)

    P.S. to MAMA; Topamax can be prescribed up to 1200 mg for epileptic szs, and other disorders. Also people are describing how this drug is affecting them personally(whether real or imagined)doesn’t matter how much they are embellishing it or not.They are hurting in one way or another and if it helps to just reach out and hope that even someone cares a little with a KIND word and says,” i hope your ok now”,that can’t be too hard now can it?

    So this i say to all of you;although i sit with my usual migraine,my brain is sort of there(scrambled as it may) i hope things go well for ALL of you and we get thru this storm and find a better med to help.

  69. Just another side note to Alicia and to Mama Alicia i have read that yes,lack of oxygen to the brain CAN lead to migraines they have done some studies and have put out a little info on that i have read. Tends to happen i read mostly during sleep.I never read anything further and saw no more studies about it. I was interested in that info at the time as i ALWAYS wake up with migraines and thought maybe that might have been the cause.
    Mama, the effects of going back on topamax and getting the weight loss effect from it from what i just read the other day will not happen .
    I had decided that i would try to go off of it and read up on the safest way to do it. It stated that if a person were to go back on it again there would be NO repeat weight loss benefit from it the second time around.Which i thought was interesting.
    Check out this website for up to date info written by doctors on migraines ( any neurological disorder:migs,ms,epilepsy,etc) It constantly has updates .Hope it helps anyone out there.

  70. I have had a previous dose of Topamax which was safely administered years ago for migraines at 50mg once a day for preventative measures. I stopped using it and my new general practitioner decided to prescribe the same to prevent an attack of migraines I was experiencing this past year. Unfortunately, Topamax was prescribed after I was already in an intractable migraine, so it did not help.

    I was in the hospital for the intractable migraine when a Neurologist bumped up my dose from the 50mg daily to 100mg daily. (Mind you Topamax I found out later, is a preventative- not a medicine for migraines) After three days of hospitalization, I was released for home.

    I experienced numbness and tingling in all of my upper and lower limbs, I had numbness and tingling from the top of my forehead down the right side of my face to my mid chin. I had severe cognitive impairment with short term memory, retention and focus. It was at this time that I experienced shots of pain randomly occurring in my arms and legs. After explaining this to the Nuero’s office, I was directed to the ER.

    I was taken into the ER and released that night- they did not re-admit despite the symptoms I had and the previous stay I just came from. The ER doctor, instead, bumped the Topamax from 100 mg/day to 200mg per day starting immediately. I did as he directed, to my detriment.

    Not even 48 hours later, I experienced a racing heart beat, crushing chest pain, burning in all limbs of my body, severe muscle contractions and confusion as if I had a stroke. My right leg refused to operate properly which later was labeled as “Ataxia”. My Rhuematologist and Neurologist were shocked and did not know what would cause such a severe and quick degeneration of cognitive and motor function and admitted me to another hospital.

    I was admitted from March 10-16th 2009 and continued to be given the same medications that I was taken at the time of admission. I was tested for every neurological disorder which would cause the symptoms I was experiencing and was going to be labeled with “conversion disorder”. All week my family and myself questioned the doctors and specialists about any toxicity which could be caused by overdose of medicine and it was quickly mocked and dismissed. Having training as a medical assistant I knew that wasn’t the proper way to handle a question like that and got the chief of staff and hospital advocate involved. They too dismissed the medicine toxicity.

    I went from the above symptoms on March 10th to not being able to have motor control of my legs by March 15th. I was terrified. I was experiencing 20-30 attacks on my nervous system and muscular system that week- loosing all motor function of my legs, I had severe tinnitus, nerve damage, muscle weakness, burning sensations from this medicine. In frusteration and absolute anger, I told my Doctor I was no longer going to take the medicine because I felt it was the cause…

    48 hours later after stopping the 200mg/day dose of Topimax, my symptoms started reversing. I have been out of work on disability since 2-2009 and have been in Occupational and Physical Therapy for the Ataxia, nerve damage and muscle weakness since. I don’t believe I will ever be able to get this back and feel now at nine months later, that its a permanent problem and the damage will not be reversing to normal states as they were before the Topamax Toxicity.

    An awareness needs to be noted that this medicine should not be used for weight loss AT ALL and that migraine sufferers need to be placed on minimal and safe doses of this medicine to be effective without harmful side affects. I was days away from a medicinal coma on only 200mg/day. Just because some people can tolerate massive levels does not mean that another person can. This medicine can kill.

  71. I have been taking topamax for about a year 400 mg a day I now have the tingling on the left side of my face and was told by the doctor it’s nothing to worry about, because I don’t have health insurance. That its just my nerve’s. Yeah right!

  72. i have been taking topamax 300mg for 3 yr now dr just dropped my dose down to 200 mg last month for seizures and migraines i get this pain in my arms and my hands crawl up as my arms start to bend to my body i cant control this my dr told me i had a vit d prob and sent me to get blood work this came out clean my mom has also took this pill and has had the same prob i get pill in my fingers. sometimes my vision gose blurred words getted mixxed up i lose train of thought scared to switch seizure pills but i dont like the pain i get from these either and with me having to deal with the pain for so long i think to myself how much longer can i deal with it

  73. my wife has been been on topamax for about three years,for migraines,and she I lost alot of weight,was working and doing good,when she had a stroke at 35 now her memory is bad her balance, and she slurs her words alot.but they still have her on it 2 years after her stroke,and she is always tired and moody.but now they say it is her liver.she was better off never taking it.

  74. I started topamax at the end of August of 2008. I had suffered a 15 minuted seizure. Doctor’s couldn’t figure out what had happened. EEG came back normal, blood came back normal everything was normal. At the time I was going through some marital problems and sleep was hard to do. Besides the imsomnia I was on Cymbalta and xanax. It was all to be temporary due to the current hardship. The Doctor decided to be safer than sorry. So he ordered the Topamax, when I told him that I was start to feel “strange” but that my migranes where almost gone he increased my dose to 200mg bid. Ever since then I have never been the same. A few day’s later taking the 200mg I felt like if I or my “soul” had entered a deep fog and my uniquness was lossing itself. I started to notice that my anxiety level’s shot up to an every day level’s of 5-7 and panic attacks would come easily, I had no control over them. In the past when I could get 16 hours of sleep in a 5 day week. That was cut in half adding the other day’s of the week also. During this time I saw my neurologist and told him of the anxiety, imsonmina, tingling, etc. He told me to take the dosage earlier so I did. It did not help, this is when the “stupid” moment’s started to happen. I could not concentrate on something for more than 2 minutes because my mind would shut off. I would be talking to someone I would have to apologize because few minutes into the conversation I had no idea what the conversation was about, and my short term memory. It’s destroyed. This year is only a blur, which is why I am here warning other’s. When my stress level’s would increase, It seem’s my mind would shut down. I became a whole different person. Angry, bitter, withdrawn, extremely witdrawn, suicidal. I would do thing’s and have only a vague memory of doing it. Sometimes no memory of it at all. Other Doctor’s try to blame it on Ambien, but my wife would hide the Ambien on my request because I though I was going crazy. In one black out episode I openly told my wife of my internet liason’s but that it was not me, it was Donny. Like I mentioned during this time my stress was high, I was on medical leave without pay because of the seizure, I had marital problem’s, my father was dying. Then I was laid off my job. So I do admit that I did rely on anxeity med’s and hypnotics to deal with my problem’s. However, I went into a psychotic episode ( Their was possibly other’s but this was the one that broke the proverbial’s camel’s back) were exatcly 8 days are gone. Frankly I don’t remember them I don’t want to remeber them, my family forced me to a hospital where they deemed me 5150 and I spent 8 day’s in a mental health hospital. What I do know is that I did slash my wrist, tried to cut my neck and assulted my wife. Once out of the hospital, I took it upon myself to take control of my life and my medication’s. Topamax just scared me I have case study after case study where the maker’s knew of the potential issues as far back as of 1997. One case study is interesting. After topamax I started to have libido problem’s and severe depression, I had my docotor check my testosterone panel and to his suprise it was way below normal. In my investigation, it is believe that topamax has huge impact in fertility. This personaly has but a road block in my life. I was hoping to get a job with federal law enforcement. I don’t think that will be viable. My marriage is we say; walking on egg shell’s. Educated yourself Dr’s. at times don’t realize the side effect’s themselves.

  75. I was on Topamax for a little over 6 months for binge eating and bulimia. I divorced my husband because of this medication and wish every day that I never would have taken it. I can’t even remember a lot that happened while I was on Topamax and it was like I was completely disconnected from my life. There is NO way that doctors should be able to prescribe this poison.

  76. My son died a year ago. He was on topamax and depakote. If anyone knows if the interaction of these two drugs can cause death please post it. He was 37, healthy, (a personal trainer) but his blood sugar was 12 and his potassium was 8. Blood sugar was too low and potassium too high. Was it the drugs? AND where are his blood tests? Shouldn’t his doc have been monitoring his blood levels while on these two drugs. None are available. I think they should have been looking at blood at least to determine if he had the correct levels of the drugs in his system and then the sugar and potassium levels would have maybe have been a red flag.

  77. I have to disagree with just about everyone here. I’ve had migraines for 22 yrs, and I’ve been on about 21 different medications for them. I don’t mean the “oh, I have a headache but I can still drive/go to the store/use the computer” migraines. I mean the kind where you’re throwing up for hours and sound/light are painful. No pain medication will touch the headache. Topamax is THE ONLY medication that has ever worked to prevent my headaches. I take 400mg/day. Yes, I experienced some tingling in my face during the first week or two, I knew I would as I took the time to read up on the medication BEFORE I started it. I knew what to expect. I went to many websites to get all the info I could, good & bad, before I started it. Everyone is so quick to blame a doctor or a drug. YOU are responsible for you. Just because a medication is suggested, you do not HAVE to take it. Educate yourself, no one will look out for you. Every medication has side effects, good or bad. A lot of the complains people are listing here are side effects that are listed right on the website and readily available to anyone willing to seek the info.

  78. I began taking Topiramate 25mg tablets in June 2009 for migraines. I was already being treated for depression. My depression worsened and I became suicidal, even planning the date I was going to kill myself. I couldn’t understand why my depression symptoms became worse. I saw the information regarding the lawsuit on TV. I have been suffering from worserning / blurred vision ( I was diagnosed in 2006 with a left eye vein occulsion, depression and hypertension after working in a hostile work environment for 18 months).I have not worked since March 2009 due to the migraines and depression. I have been unable to get out of bed, had memory loss, confusion, severe join pain, unable to concerntrate, and can not drive my vehicle without being extremely nervious. I have insomnia and even though I take medication to help me sleep. I only sleep 2 hours a night. My heart beats so fast and my thoughts race uncontrollable. Some nights I pace the floor all night.

    I am a Supervisor and I have to give out post assignments. My mind goes completely blank and if I don’t write down everything I forget what I was Saying. I can’t remember how to do previous jobs I have done in the past. I also, have forgotten all the information I have learned in the 15 years i have worked for the faculity. I can’t even go up for interviews because I can’t remember the info I study. My mind just goes competely blank and when I try to talk I soud like an imbical. I have been to see numerous doctors and had various test done. They don’t know what is wrong with me. I am not taking Topomax now because it did not help my migraine. My migraines are 24/7 and getting steadiy worse. . I take Bupap an it eases the pain better than anything I have tried.
    I am glad I finally found other people suffering like I am. I thought I was loosing my mind.
    May god have mercy on us all.

  79. In May of 2007 i was prescribe Topamax for migraines,in two weeks i was totally blind.In one day i went from seeing to total darkness.I went to the ER with what i thought was a bad migraine, but what i realized was it was the pressure in my eyes that was causing the pain. Long story short the doctors at the Eye Foundation Hospital in B’ham,ALknew that it was the Topamax causing my lost of sight.I was totally blind for six months had to have 4 eye surgerys to restore my sight and also lost my job.The Lord was on my side i did get my job back,but my eyesight is not what it use to be.I have a hard time driving at night i have to use eyedrops daily to keep the swelling down in my eyes my depth perception is not good. The thing that brothers me the most is i can’t get compensated for what happened to me. I don’t care about getting a lot of money,I wish the drug company would pay off all the Dr bills i am still paying.Its a shame what the big drug companies can get away with

  80. I was prescribed topiramate in August 2009 for a 9-year-old sleep disorder that did not respond to other medications or therapy. The topiramate was miraculous! It cured my sleep disorder literally overnight. But the cure came at an enormous price: I quickly became a mere shell of who I had been prior to initiating topiramate. I went from being a successful pharmaceutical sales representative, a wife, and mother of two boys to someone who could not get out of bed to go to work, run errands, parent or accomplish the simplest of activities. I weaned off topiramate about three weeks ago and I’m am frightened that still suffer side effects severe enough to keep me confined to bed most of the day. I am overwhelmed at the thought of making a phone call, taking a shower or making dinner for my family. I am unable to concentrate, articulate thoughts and feelings or remember things that have occured. Most of the time I feel like I’m a vegetable – there isn’t much going on inside my head. I also have an incredible sense of apathy about everything. Did the three months I took topiramate do permanent brain damage? I don’t know what I can do to restore the person I was before the drug. My family and friends have seen such a drastic change in my personality and productivity since I started taking topiramate, and they understand the problems I have now are related to the medication and are beyond my control. I had no idea when I was prescribed topiramax that the side effects could be so devastating. I NEVER would have gambled on a drug if I had known I might be permanently nuerologically impaied.

  81. For Mike,
    Topamax and Depakote is a toxic combination. All you have to do is go to the FDA site and do a search or do a search of Topamax toxicity level’s. Adding topamax to Depakote is like adding alcohol when taking ambien it increases it’s intensity. Your son’s level’s should of been checked his ALT’s on a monthly level and ammonia level. I would have them get a tox-screen or give you the tox-screen they had to do on your son. I would get an attorney to investigate this.

  82. I was on LOW dose –75mg, of topamax – for about a year for migraines– almost immediately had twitching under my eye begin — dr said i was tired — i have been tired for 20 years. thank goodness my co-pay for this drug went so high i could not afford it – i weaned myself off — twitching went away within 2 days!!!! I am still tired!! ALSO – MY HAIR HAD/HAS THINNED HORRIBLY. I have been off topamax now for about 9 months — don’t see my hair growing back and it still falls out a lot when i dry it. I can twirl it all up and pin it with a baby clip. DON’T DEPEND ON DOCTORS FOR INFO — THEY DON’T TELL, DON’T KNOW, DON’T CARE — IT IS ALL ABOUT $$$$$$


  84. I was prescribed this medication from the neuroligist to combate frequent migraines stating at 15mg for 6 weeks then up all the way to 50mg 2x day for a year, and then at my annual she decided to go with 100mg 2x a dayI have been on topomax for 2 years, and 11 months ago it was switched to topirermate. I am 5’7′ And was 220lbs. and have lost 43lbs. I am normally a heathly 30 year old Teacher. In the past few months I have been constantly sick with stomach issues which my GP gave me prevacid for gas but I know its something more. I used to be a happy person but know find myself very irriatable, espcially with my family, And my once thick hair is falling out in clumps. My insurance will cover a wig if I have cancer but not due to a faulty medication. I could have cared less about lossing the weight. I still get migraines maybe not as many but when I get them I treat them with Zomig. One thing I seemed to have noticed is once the dosage goes over 100mg a day that when all the weird side effects come out. Does this happen on the actual TOPOMAX too? Toperimate is ruining my quality of life, as I get to go to work with bald spots in front of students, when I can work as I still get the darn migraines, contsant stomach pain.

  85. I went on Topamax when I was 21 for severe weekly migraines. I started at 50 mgs two times a day and was quickly stepped up to 100 mgs twice daily. When I began taking the pills I weighed about 135 lbs and was a healthy 5’5 college student. Within one year I had lost 45 pounds and weighed in at 95 lbs at the lowest point. I felt hungry but my appetite was completely diminished. I had tingling in my face and hands regularly. I would get confused and lose my train of thought in the middle of a sentence. I couldn’t remember simple words such as ‘belt’. I once got lost driving to work, completely missed my exit on the highway, and didn’t wake up from the haze until I was 10 miles out of the way. I was so scared when I realized that my mind had basically just shut off for a bit. My mother is the one who finally realized how I was starving to death and started getting worried about my safety. When I approached my neurologist about the symptoms he seemed really agitated with me and told me I was overreacting. My mom made me go back and ask him how to ween myself off the Topamax safely. Within weeks of being completely off the pills, I was back to 120 lbs and was actually enjoying food again. My short term memory slowly returned, I was able to remember words, and my ability to think clearly returned. I am amazed to hear that others had the same experience and am angry with my neurologist for not better explaining the side effects of this drug. Luckily, my migraines are much better and I now manage them with magnesium, scented oils, caffeine, rest, and eating healthfully. I had a doctor run blood tests to determine my sensitivity to certain foods and have found that managing my diet and steering clear of certain foods works amazingly well at keeping my migraines away. Sometimes I sill get the scintillating scotoma and even the headache but they are very infrequent and mostly triggered by extreme stress or exhaustion. I would advise anyone who is taking this pill to look deeper into the side effects. My father, who took Topamax for seizures, expereienced the same symptoms as me and finally encouraged his doctor to try a different medication with great results. If you must take Topamax, just stay informed and monitor yourself. It’s amazing to me how it snuck up on me and made me very sick before I even realized it.

  86. i have been on topamax for 8 years. i have been taking it for epilepsy and have been controlled on it since 2001. i was taking 200 mg twice a day up untill i was told by another doctor that i was prescribed to much. i had many side effects of memory loss, hazyness, loss of concentration, i felt heavy headed and couldnt have a conversation that made sense because of loss of words. i have been trying to get pregnant for 7 years and i cant seem to get pregnant. i have been to fertility specialist and nothing works. i also have no energy i want to sleep all day. when i went on topamax i was 18 and wieghed 150 at being 5’3′. I went on topamax and was weighing 110. i was very skinny and didnt feel healthy. as of 2008 i lowered my dose myself because the doctors were giving me the run around about new medication. so i thought well i may as well stay on it. now i am terrified to even take my pills. if anybody out there is on this medication for what ever reason please research the recalls and warnng information.

  87. My best friend was on Topamax for depression as it is also a “mood stabilizer”. I have no doubt this medication drove him to the edge and so he committed suicide.

  88. I have been reading everyone’s posts and find them quite fascinating. I have been on Topamax for 3 years as a preventative medication for daily migraines. I started off at 50 mg a day and now take 100 mg a day. I also take other migraine medication as I still get frequent migraines. I also take anti-depressants for mild depression. I am 39 years old and have taken those since I was 15. Lately, I have noticed what I thought to be mild lapses of “missing time”. I would seem to forget or lose hours where I wasn’t quite sure what I had been doing. My daughter would also notice that I would come to stoplights and either stop on a green light or go on a red light. I seem to get confused with things that should be normal, everyday common things that we all take for granted. I lose words that I want to say…I can see them, almost hear them, but I just cannot form the words to say them. My co-workers laugh at me because I forget how to use the fax machine or the phone. I, of course, write it off to being stressed, but I am wondering if it is Topamax related? My hair has been falling out by the handfuls and, though I have not lost weight, foods taste so differently now. Most everything has a metallic taste to it. I cannot drink anything carbonated as it leaves a burning sensation in my mouth and throat. Food just is not enjoyable any longer. I also have tingling in my face and scalp. I have even had my daughter check my hair for lice because I feel like something is crawling in my hair…though there isn’t. And the fatigue and mood swings that I feel is almost unbearable. I will definitely be doing some further investigating into Topamax. I appreciate all of your posts!

  89. I am very shocked at this news, I was in a car accident which caused me to have severe migraines and I was given Topamax by my doctor and in October of 2006 while I was still taking the medication I tried to commit suicide. I sent my children to my sisters home so that they would not find me the next morning.

  90. TOPAMAX should be banned!! It is a very dangerous and posioning drug and is not worth taking for either migraines or weight loss at all!
    The excessive weight that is lost comes with some serious and very permanent side effects. In my case, I was prescribed Topamax by my Neurologist for the prevention of migraines. After 4 years on Topamax at different dosages that never exceeded 200mg a day, and being off the drug for almost 6 months, I now have a fifth of the hair I used to have on my head and eyebrows (and a different texture altogether), have permanent memory loss and blurred vision that never ceased and a metabolic disorder due to the crazy weight changes before and after. I am a TV HOST/ACTRESS!! Imagine me hosting a show or trying to work on a show with no memory and no hair!!!

  91. I began Topamax in December 2001, for the treatment of severe migraines. I was under the care of a neurologist. Initially, the dose was 25 mg 2 x day; increased to 50 mg 2 x day, with directions to raise dose and lower back to 50 mg 2 x day, as needed to control migraines. The dose was not to exceed 100 mg 2 x day without first consulting the doctor.

    Almost immediately, I began to feel chronic pain in the left side of my neck. That Spring the dose was raised to 75 mg to 100 mg 2 x day, as needed, two times, to control migraines. During Summer 2002, life at work became very difficult, resulting in the need to increase the dosage once again to 75 to 100 mg 2 x day. The culture of the corporation was antagonistic, and an internal HR survey revealed a complete lack of trust between employees and management. The effects of the Topamax exacerbated the situation.

    In August 2002, after a 20 year career, I lost my job. Financially, it was devastating, though I treated finding another job as a job and searched 8 to 10 hours per day. As you probably guessed, I was over 40 and the timing was horrendous (invasion of Iraq).

    After working 2 long-term temporary jobs, I went back to college to obtain a second degree in January 2006, while still taking Topamax. At this time, I began to notice the cognitive impact of Topamax. In the beginning, I thought I just couldn’t make the grade anymore in a classroom. After all, my confidence was in tatters, and it was getting more and more difficult to rebound after a failure.

    In May 2006, I made the transition to another college close to home that had a similar program, but one that would allow students already possessing a degree a work full-time while completing the additional requirements. This is when the cognitive effects of Topamax dealt the 3rd devastating blow.

    To complete all degree requirements, candidates were required to pass a State Board. The area that I had chosen had always come easily to me, though it was widely recognized as the most difficult area to pass.

    Others are correct when they state that with Topamax, one begins a task, then simply ‘forgets’ what one is doing. Tested areas that should have been simple, were difficult, and though I would begin to solve the problem correctly, I would either stop before completion or change methods once started. I failed the exam at least 8 times before realizing that Topamax was impairing by memory. It was brought to my attention by a loved one. Under the influence of Topamax, I would probably not have noticed.

    It took approximately 3 months to wean myself from the Topamax, and during that time, I challenged the test an additional time before passing. Interestingly, the score when up in excess of 18% after reducing the dosage to 25 mg 2 x day.

    After discontinuing Topamax entirely, I passed the exam. One week later, I made an almost perfect score on a second required exam.

    I am very grateful that the exam is over, but Topamax cost me substantial amount of money including: a lost career of 20 years, 3 years of job searching during a terrible economic downturn, exam fees of approximately $1200.00, lost wages and contributions to retirement accounts for three years (which is cumulative) and the immeasurable pain and embarrassment of repeated failure, self-doubt, and loss of self-esteem.

    The makers of Topamax could have spared so many with clear warnings on the packaging. (I, too, read the information provided.) Pharmaceutical companies should be required to provide each doctor with evaluations from independent sources listing all side effects and benefits, rather than their own promotional brochures.

  92. I had a fall injury in July 1999..falling 18 feet off a ladder in the warehouse..You can only amagine the injuries I substained…one being a concusion..After the injury, spending 6 days in the hospital, and dealing with hand, leg, head, back, and neck injuries..I had vertigo as well for (seems forever!) Ofcorse..I became very depressed..I was seeing a Neuro. Phys. He said I need to go on something to ease the tension ..I was put on Zoloft. 2002..I was diagnosed with Breast Cancer…thing got even worse..I developed a blood clut in my left lung from the Tamoxifen..spent another 6 days in the hospital..and was on comadin for almost a year..My Doctor decided sence I was afraid of the change my medison to Topamax… I took that until Sept. 2008…Too many changes came over my mind and body,,Headaches were very severe ..I am always using eye drops, my kids say I never can remember anything! (They tell me I have some-timers desease. I tried to laugh but that really hurts.) My eye vision had changed and I am always looking to get stronger glasses. I have always thought that my problems (so I thought) were because of a head injury…the forgetfullness has really been hard..(trying the find the right words to come up with..)
    As I said I took myself off of the topamax very slowly…and to this day …. I have not been the same.

  93. I can’t believe what I’m reading. I just went to the Dr. not even a week ago. He prescribed topamax without even blinking after i told him I needed to lose weight. I’m overweight, trying to get pregnant, have high blood pressure, and have polysistic ovary, can’t sleep already and i’m scheduled to be tested for sleep apnea. So ive been taking it for 6 days and the tingleling in my feet face and hands does not away at all… blurry vision.. can’t concentrate.. i have already blacked out 3 times.. and it’s only a 25 mg pill twice a day.

  94. I am so sorry to hear of the devastating problems you have had to endure with this. But with hearing your story it really makes me concerned. I have been on Topamax for over a year now maybe longer. I am only 35 years old and sometimes my husband thinks I am crazy because I have the hardest time remembering anything. I start paying bills and if I walk away I have literally forgotten which ones I have paid if I don’t write everything down. i have 4 children living at home and it is tough when I seem to forget so much. Sometines I just sit and cry because of the way I feel because of the memory loss. I am now going to talk to my doctor and I guess we will try something else because my miagranes are sometimes unbareable. Again thank you..

  95. This post is regarding my 9 year old daughter that has been on the generic form Topiramate 25mg x2 a day since the end of August 2008. She has a history of medical problems. Age 6 she nearly died, no warning but had a brain tumor the size of a grapefruit causing a midline shift. 2 brain surgeries, a surgery to put a port in her chest, chemo that made her hair fall out and vomit over a period of a year, as a summary we are no strangers to the specialtists and doctors. Having went through that at her 2nd year of cancer camp last year she contracted Swine Flu. High temperature caused a seizure and put her in the hospital last year right before school. The nerology team put her on topamax at this time. Only other drug was clonidine HCL .05 x2 for the neurohypertension from other medical things.

    We were told to follow up with neurology in 6 months. Before camp Brittany was also experiencing very bad migraines. Initial complaints of pain in her one eye and her screams like someone had a knife in her head. Short from pain medication only way to resolve those were having her fall asleep. We were told that this topomax would not only help with any migraines but also help any additional seizures because now her thresh hold had decreased. Every week was great we were amazed at how she would start to have slight eye pain and might feel a little nauseous but no sharp migraine would follow. GREAT!! wonderful drug it’s working……or so we thought…

    We just had some snow over our kids winter vacation from school so there were off school for a total of 17 days so when she started complaining of feeling like she couldnt breathe, or getting dizzy, leg tingling almost out of the blue we thought it might be abit of seperation axiety. Being in the medical field myself i didnt imediately put it to anything. These feelings increased for her. Always with episodes of her feeling like she was having breathing problems. She had to be with me or my husband. It wasnt just that, these “episodes” would happen even if we were in the same room with her. No more sleeping in her bed she had been in our’s for almost 2 weeks. She was worried all the time, every day seemed like it was getting worse. As before mentioned after everything she had already been through we also thought perhaps she was having a sort of emotional breakdown and because she was getting older it was all hitting her. Still continued, she couldnt go to school, if she did go she would have to come home, on our way to her oncology appt 15 minutes away from the hospital she was almost hysterical asking what was wrong with her, someone please help her. The doctor’s all said she was fine maybe she needed a counselor. We called and the first appt available was the 29th of this month.

    I took time off of work and couldnt believe what was happening. It was like I was watching my daughter lose control and all the doctors kept telling me was that if she got to a point i couldnt calm her down was to take her to the ER and request an emergency pysch evaluation. I was horrified until my husband started to think of her medicine. I kept telling him that she had been on it for like 5 months now, no way could she be having any side effects from it out of the blue like this. That was Thursday Jan the 15th. On Friday of course the episodes continued and towards the evening as she was sitting in a chair crying i was trying to distract her by making her stuffed animal dance and she started to giggle. I thought, Yes she is comming out of it when all of a sudden like a light switch she let out an angry scream, clenched her teeth and grabbed for the animal I was holding onto. I felt her mouth on my arm but thought she was just playing until I felt her teeth bare into my wrist. I thought OMG my kid just bit me. This realization almost hit her and that led into more hysterics.

    My husband was on the computer and he said I had to go look and read the forums he pulled up. Sure enough I sat there as my husband tried to console her and I read with amazement. This drug Topomax – generic name of Topiramate….other people were having same side affects talking about the ANXIETY level increasing, the loss of appitite (she hadnt been eating much the past couple days), so many similar things until I hit paydirt!! Many people taking this drug, have had side effects occur months into taking it !!! BINGO!!!

    Something had to be done!! Nobody was listening to us!! I told them what she had been through and how it was like something was taking over my daughter and when we brought up the medicine they all said it couldnt be it!! BUT!!! that night we as parents made a choice, CUT her medicine in half. Thank God I have some medical knowledge and knew not to just stop it. On Saturday my daughter actually played with her sister again for 20 min here and there. I was waiting all day for an episode to occur and NOTHING!..On Sunday I even took a shower and came out and had to go FIND her to check on her. Again playing in her room with her older sister. I was shocked. On Monday she ate a WHOLE bowl of soup!! More playing with her sister for an hour or more on and off!! Yes!! It was like I had my little girl back !!

    We had her neurology appt on Tuesday this week and they just scoffed at us, because of course it couldnt be the medicine but told us that giving it to her once every morning at the half dose, we could taper it off and this Friday will be her LAST dose!! We have already informed them that she will NEVER be put back on this medication!! The told us they were skeptical that it was this medication but all I know is that I have my precious girl back and the anxiety that was taking her over I havnt seen since Friday evening. I dont need a medical degree to realize that is not a coincidence!

  96. I was on Tomomax for about 5 weeks moved from 25mg-300mg very quickly. On New Years eve 2010 I had a high fever for 3 days I thought I was dying it was not strep throat I was checked. The following days I developed white blisters in my mouth (stomatitis), eczema. My eye lid kept moving back and forth. I quickly came off of them when my pharmacist said it was the drug doing this. My neurologist said to reduce 50mg every 7 days but reduced 50mg every 4 days. I have been off of them for two weeks I still don’t feel good the blisters and sore throat is gradually healing, the palms of my hands are going numb. I also get a numbing feeling down my legs my eyes are jumpy. What is wrong with me has it done permanent damage?

  97. I started taking Topamx in 2001, I took it for almost ten yrs. i was takin off of it in Aug.2009, and on Sept. 26th 2009 less then a month later i had a stroke. My doctors ran ever test known to man kind and could find no reason for the stroke. I was in the hosp. for six days then went rehab for over a week. I never even thought Topamx might have something to do with my stroke until i seen something about it on t.v. three days ago (Jan, 20th 2010), just four months after my stroke.

  98. I was diagnosed with Pseudo Tumors behind my eyes and have had migraines since I was a little girl. The eye doctor found my Pseudo Tumors during a routine eye exam last January. I went to a specialist and he told me I had these Pseudo Tumors due to me being over weight and that I needed to loose the weight or I would go blind, so I joined Curves and lost 25 pounds along with being put on Topiramate a generic for Topamax. At first the medication was fine then I started making a lot of mistakes at work, got laid off from my job last September, and just started having these horrible dizzy spells to the point of can’t even walk a straight line, as if I were drinking and I DON’T drink EVER! I am only 38 might I add. It scared me so bad I thought I was having a stroke, I told my husband about it and he was ready to take me to the hospital and I talked him out of it, I went outside and caught my breath, I was litterally scared to death, I am just grateful I wasn’t driving when it hit me. My doctor told me a month ago that my Pseudo Tumors were gone and that he was going to start cutting me back on this drug to half a pill a day which would be 50mg a day instead of a 100mg to whean me off of it. I am just concerned about the long run benefits this drug has caused me! Someone needs to help us! I have also been sleeping alot during the day and having numbness in my right hand mostly, mainly my fingers. Doctor told me that was just a side affect and would go away but it hasn’t yet. It comes and it goes. Has this drug damaged my heart, my liver, my nervous system?

  99. I forgot to say in my story above my doctor told me to eat a banana a day and an orange because Topiramate sucks all the Potassium out of your body. Why the orange, not sure, but that is just what he told me. I am currently getting off this drug for my health. I Pray for everyone in these blogs and their health and their migraines and seizures. I cry at the thought of a migraine even coming on, they are horrible!!!!

  100. I was on Topamax for a few yrs and every time I went on it my vision would get very blurry. By the time that I got off of it my vision went from 20/20 to 200+ You might say that I am going blind. When I went online to look this Drug up, there was a flashing red sign that said WARNING,WARNING, IF YOU ARE ON THIS DRUG CLICK HERE. Well I did and the message said that a warning went out to over 400,000 dr’s that were to tell there 800,000 paitents that it was causing slow progressive blindness. Glacoma-Myopia. After I showed this site too my Doctors they took all there paitents off of the Drug. What can be done about this as it is getting harder and harder for me with my poor vision issues.

  101. i had been on topamax for about 2 yrs before i found out i was pregnant. my doctor took me off of it when i was about 6 weeks pregnant. at 18 weeks when i found out the sex of the baby the dr also told me that my son would be born with Edwards Syndrome & would not survive & he thought we should terminate the pregnancy. my husband & i both declined. i went back for another ultrasound at 27 weeks & they told me he did not have Edwards Syndrome but he did have a cleft palate…caused from topamax. by the time a baby is 8 weeks in the womb the cleft is already formed. my son had an extremly hard time eating, it would take him 2 hours to take 1 oz of his bottle. he had surgery at 3 months to correct his lip & he gained 17 pounds in one month after his surgery because he was finally able to eat. he still needs surgery on his nose & another for oral graphing after his permanent teeth come in. i am now expecting again & praying the next baby wont have to go thru what he did.

  102. I’m the the mother of my son Andrew who was placed on toamax for migranes at the age 15…little did I know of the awful side effects this would cause and changed my life forever…in may of 2008 my son was suffering from bad migranes his step-father took him to our family dr who put him on topamax and blood presure meds a day later this headaches got worst so I took him to the er and the er ran a cat-scan on him and found out my son suffered from keriari malformation and he had a mri with in 4 days and took him out of shool for the rest of the year…at first he would only take the topamax when needed but for the most of the time he would lay in a dark room w/o tv or radio and was unable to read which he really enjoyed…when he started back in school in aug he wanted to go back before he was to have surgery for his condition and the dr’s told us it was ok for him to take the topamax until the surgery that was set for sept 5 2008, to days before he committed sucide by hanging himself we had a long talk and he was telling me all the problems he was having as in concentrating, retaining info from the teachers, pain in hands and legs and could not even hold a pencil….as a mother I could only cry for him and called his nero dr and he was going to call my back after office hours….never got the call til the monday after my son hung himself that friday…and my son was never a depressed person had his whole life planned where he wanted to go to college and even plans with his friends that friday and saturday to me I have raised 3 very health and mentally stable kids and beat myself up about what happened to my son where I went wrong…but I have been reading all this info on topamax and we dont know what it does to teens never tested on them and anger’s my to thing I trusted dr’s to help my son and the only explaintion I have now is the topamax put in a state of mind that I dont even understand and I have let is my memories of him so if any parnets read this and plan on the children taking this drug PLEASE THINK AGAIN….COMING FROM A LOVING MOTHER WHO WISH SHE KNEW THEN WHAT I KNOW NOW AND THIS SAVE ONE TEENS LIFE I FEEL LIKE I MADE A DIFFERENCE

  103. I am so unsettled with all the stories about Topamax. I was taking the drug for Four and a half years. I was on 200 milligrams a day for epilepsy. I thought all my symptoms were because I was getting old. Such as the loss of vision, dizziness, memory loss, joint pain and constant tingling and loss of feeling in my hands and feet. I had to resign from teaching for 17 years because of the memory loss and no attention span. My doctor said as long as i’m not having seizures anymore the drug is working for me. He also stated aren’t you happy about he weight loss? I’ve eventually weaned myself off the drug. I feel alot better but still have some side effects. I haven’t had a seizure lately, but if they come back I will definately choose a different medication.

  104. I would much rather be on Topamax than Depakote or Depakene, Those two just about killed me. I gained over 200 pounds and developed IBS because of valporic acid and the main side effects from Topamax are much easier to manage than that for me. I think everyone needs to find something that works for them, I have a friend that is allergic to aspirin, but I would hate to see them take it off the market. If you don’t like Coke, drink Pepsi… Don’t sue Coke.

  105. My son is now 19 years old when he was 13 he was on 400mg. of topomax a day for wieght loss and to help control his mood. He went through very rough time acted like a zombie, he suffers now with deep depression he is six foot tall wieghs 376 lbs. hates how he looks can not loose wieght suffers from headaches and gets pains in his eyes. He also suffers with kidney stones from time to time. He acts as though he is still 13 and does not like to be around people even family. He has the tingleing in body as others described and sometimes he says he can not feel his legs and starts to fall. He gets pains in lower abdomen and genital area. I am going to check with our neurologist to have him tested after reading these posts.

  106. I am sorry to hear about the nagative experiences everyone has had with Topamax. I have been on topamax for at least a year right now I am on 100mg 2x per day. I am also taking celexa 45mg and welbutrin 100mg 2x daily. For me the positives out weigh the negatives at this time. I have suffered from severe anxiety and depression for my entire life and I feel much better on these medications. I have also seen a counselor to bulid some communication and relationship skills for the last two and a half years.

    With the topamax I had real bad joint pain in my fingers for the first 5 or so minths of taking it. It has improved a little but still comes and goes sometimes. I have not had any weight loss. Had all the general side effects in the beginning like memory loss (still have that), loss of correct words, substituting words that sounded simular ( real bad) so I sounded mentally challenged at work.

    The thing that I have the biggest problem with is back pain. It comes and goes, but it is persistant and nagging. If I drink enough water it seems to go away. It will stay bad for a few days. Dark colored soda aggravates it. Drinking 1 beer makes it worse if it is flarred up. I have never had back issues before taking topamax. I worry about my liver, but my doctor has run tests and says it is fine. I feel so good, But I would hate to damage my liver.

    My doctor says I need to do more group work before I can come off the medications and I know she is right. I am trying just to rehydrate and not drink any beer or soda.

  107. February 12th
    1:27 AM
    55 yr old female; in approx. April 2009 I was put on Topamax for bipolar to assist my Trileptol. I had been pretty stable prior to that except for a very mild, recent depression over my living conditions, which changed for the better a month later.Trileptol, Welbutrin, klonapin, and Ambien had been my perfect mix. During a 9-month period, I grew more and more agitated and anxious. I became extremely paranoid because I couldn’t finish my thoughts while talking and friends said that I had changed. I withdrew more from years of frequent church activities until I quit completely, my vision became extremely poor (still is), my hair began to fall out at an alarming rate and I lost 17 pounds within just a few months, which was the only up side. In October of 2009, for no apparent reason, I felt I wanted out of life and prepared to over dose on all of my meds. I just didn’t know why I was so overwhelmed. I called my fiancé, then he called rescue and I stayed in a behavioral ward for 10 days. They increased my dosage (50mg) to 75mg 3 days before I left. When I got home, I had an all out anxiety attack. I realized it could be the Topamax so I stopped the one and continued the 2 at night. I had been having terrible nightmares in my restless sleep. During my 3rd attack, I was escorted back to the hospital for 13 days. I refused them all together and now I’m back to restful sleep and I feel fantastic except for my blurry vision and my gradually subsiding alopecia. I’m just glad I had the sense to reach out before it was too late.

  108. This is to Mama…How dare you say that most of us are not telling the truth who the hell do you think you are most of us took it for a medical problem not because we were over weight sorry i watch what i eat maybe you could try that.I was on 300mg so yes they do give high doses maybe not for you because you just wanted to lose what sounds like much needed extra weight or am i just exaggerating(by the way this is the correct way to spell exaggerating)maybe the topamax is starting to effect you.I’ve been through everything these poor people are talking about im glad you havent but shame shame on you for your lack of empathy maybe your perms to tight.By the way im never a rude person im one of the kindess people you’d every meet but because of what ive been through with this drug and to know that theres so many still having to suffer breaks my heart and then people like you which dont get me wrong have a right to their own view point but to come out and basically call us liars like i said shame on you didnt your mama teach you if you dont have anything nice to say dont say anything at all MAMA

  109. have been taking topamax for7 years for migraines, and am experiencing vision problems,tingling in arms and fingers,suicidal thoughts and attempts.

  110. May I shed some positive light on this drug? I do not wish to make any attempt to negate the horrifying experiences related ere, but I want to show that this drug can work for some people.

    I’ve been on this drug for migraines since April 2009, and it’s been a sort of miracle drug for me. Before I got on it, I couldn’t function. For some reason, I constantly had a migraine aura, and would get the headaches at random points (every single day). I would be disoriented, confused, and unable to function at all. I flunked out of college and lost my job.

    My doctor started me on a very small dose — 25mg. That didn’t do anything except make my fingers tingle, so after a month or so, he increased it to 50mg. At that point, I regained a large part of my cognitive abilities, the confusion, disorientation, and aura went away. I still got headaches too often, but not every day.

    Instead of taking my pills in the morning, I was advised to take them before bed with a snack. When he upped my dosage to 100mg (once at night and once in morning), the snack part became crucial, because if I took them awake and on an empty stomach, it felt like I was in a lucid dream (then again, I also suffer from narcolepsy).

    At this 100mg dose, I have some trouble finding words sometimes — a side effect that my doctor completely warned me about. Also, I eat about half as much as I used to, which is good for me, because my condition keeps me from being physically active (it triggers migraines). I have not lost one pound, though. My fingers still tingle, but not as bad as they used to, and it’s nothing I can’t deal with.

    Every time I have consumed alcohol while taking this drug, I have woken up in the morning not feeling so nice. I think the warning labels say “reduce or avoid drinking,” so do that to the best of your abilities.

    Doctors rarely warn you about the side effects of these drugs because they make money by prescribing them. I’m lucky enough to have a doctor who tells me EXACTLY what I’m getting in to (on a side note, I went into an appointment once with a face rash, and he had me tested for lupus because he has ‘suspicions’ that one of my other drugs might cause lupus). Luckily, my reaction to Topamax was not a negative one like so many of these. I wish you all better luck with this stuff.

  111. I took Topomax for migraines about a year and half ago. My eyesight has never been the same. I see tracers, flickering lights and have blurred vision. I have been to several doctors (including a retinal specialist) who all tell me there is nothing wrong with my eyes! I would never have taken this drug if I had known I would suffer vision impairment.

  112. I was put on Topomax in Jan 2010 and am now being weined off from it Feb 19th 2010. I had been gradually worked up to 50mg a day for migraines. I would rather have the migraines for the rest of my life than feel what this medication made me feel. I have the memory issues, I was having a hard time passing tests on paper but the , wt loss about a pund a palpable tests I could pass, I can’t climb stairs without being winded, I feel weak, I can’t sleep, I don’t want to go to work, or school and I love both my job as a Medical Assistant and my Massage classes. I have neuropathy in my legs and feet, I have no taste for food nor do I want to eat, my eyes are changing, I am shaking alot, but no headaches. Now I was not told about all of the side affects or I never would have started this medication; Further more, Now that I am weaning off this crap I am having other issues like abdomon pain and kidney pain. This medication literally was killing me, It is poison to your system and it takes a person awhile to figure out the medication is what is doing it, because while it is taking care of the migraines it is messing with your body and your emotions.

  113. I was on this drug for 7 months at 25mg twice a day. It makes me feel like throwing up when I read these posts. I am 35 and I will never be the same. I came off the drug in 2007 and have never fully recovered. I have permanent muscle spasms and I am sure that I have some permanent neurological damage. I really wanted to have another baby, but after all of this I wouldn’t even think of it. I fought long and hard and thank God for my husband, but just this past Thanksgiving I started to get my confidence back. I blamed myself for so long for taking this medication and I feel very guilty for putting myself in so much danger when I have two little girls to raise. The makers of this drug know that it is poison! The best thing we can all do is to tell EVERYONE WE KNOW NOT TO EVER TAKE THIS DRUG!!!!!! I will say a prayer for everyone that has posted here. Just take one day at a time and focus on the good stuff. Husbands, friends and family, please be supportive and patient.

  114. I started taking Topimax when I was about 19-20 now I am about to be 27 over this span of years my dosage started @ 25mg and was last at taking about 300m a day. I could tell that there was something wrong I to experienced the numbing and tingling of my hands and fingers couldnt sleep at night. I have started to forget alot of things that I did just a week ago, but the thing that scared me the most was my emotional change I started having thoughts that no one cared and I would be better off dead seeking was to be done with life. If it wasn’t for my boyfriend I probably would be dead by now I would go into medicine cabinets and cry but he would stop me. Then I would sit in my room curled up in a ball and cry my eyes out becuase I did not know why I was feeling this way. Arguing with my familly and him I was too emotional.I lost my brother in 2006 and thought that my feelings were because of him and continued to tke the medicine. Afraid of what was going on I started have anxiety attacks and was depressed for no reason my boyfriend and sister even thought I was BiPolar so I decided to sek help and called Psycologist (whom I see to this day). He never asked me about meds or anything and I never once really thought about it until it became more serious. My close friend started taking them and I noticed her doing some of the same things crying, mood swings and anxiety so I tried to stop takiing I have severe migrianes and this seemed to be the answer. After reading everyones response of how this medicine has it affect it scares me it wasn’t me it was the medication. Like most of you said yeah it helps you drop the unwanted weight I went from 298 to 240 in about 4 mnths. But I can feel it coming back on fast as I lost it. So this is just a small warning pray hard while taking it because I now am still going to have migraines and now I have been diagnosed with depression and anxiety I have been placed on Short term with no date to return.

  115. I muxt be one in a million that has not had the problems that I have read about. I have been taken Topamax for 4 yrs. This is the ONLY medication that has helped me NOT have migraines. I tried the generic but had migraines again. I am so sorry that other people have had so many problems with this drug. But that is like Vioxx, the only drug that helped me with Arthritis and Seldane-D. I must be wired totally different. If topamax is taken off the market I pray I can get my hands on plenty first,

  116. My son is 11 years old and has been on Topamax now for about 4 months, the side effects are seriously affecting his normal daily activities. He has missed so much school because of the side effects and severe miagraine headaches. he takes 150mg daily, has lost 20lbs, starting to have memory laspes, speech problems and also this medication causes his body NOT to sweat. Now the school system he is in, is going to hold him back because of his medical problems, and they say they will modify his work load, havent seen that yet either, what happened to the NO CHILD LEFT BEHIND ACT, the right to a free piblic education?

  117. It’s still not right that my wife hasn’t regained her memory, her mind, her weight, and still can’t keep things together. I feel so lost. She was all I had. Now she is no longer the person she was. I hate the marketers of Topamax and the asshole who prescribed this shit for her.

  118. I was on Topomax for a year for migrains. I was getting 4 to 5 a week and they were killing me. Doc put me on topomax and I didn’t have a migrain for a whole year. I was taking 100mg once a day. I started to lose weight which my doc failed to inform me of, nore did she explain any side effects. NOR did the pharmacy when I asked. Well all was great until about 11 months into taking it, i started to forget how to spell words…I still sometimes have bouts throughout the day where it happens. I have to ask my hubby and 11 year old how to spell…how embareseing (sp?). Anyway, my vision started changing also, and I immediatly called my doc and she took me off of it. My Migrains returned and weight increased. It’s been 3 years and my ability to spell correctly or even remember how to spell (and sounding it out does no good) has not returned. I use to be so good with words, spelling, writing and now I am not. I believe that is why I have a harder time learing now. In the 11 months on it, I had no side effects and was very proactive at coming off of it, at it’s first sign of trouble. But, I wonder if I will ever be the very intelegent girl I use to be…..Please I hope anyone considering taking any drug, for anything, would research it first. We are real people telling our stories, and I hope it helps others, to investigate before taking any thing you ingest. Hope you all have a blessed day, and hope we all recover sooner, rather than later.

  119. I was prescribed Topamax for fibromyalgia and was taking 150mg a day. I had been on the drug for about 3 years when I started having kidney stones about 16 in a 3 month period plus kidney surgery for a large stone. I had questioned my doctor about the kidney stones and asked if the topamax could cause the problem and he replied no, so I quit taking it and after a month the kidney stones stopped but still have the damage from it.

  120. yes all of these reactions are horrible, but topamax list them all as possible on the web site. the medication affects the temporal lobe of the brain so for the people who’s doctors prescribed the medication for bipolar disordor or weight loss…well not very smart of them because those are not temporal lobe problems…but everyone should do their own research before taking medications

  121. I took topamax for a mood disorter for 4 years my legs hands and feet woulf go numb all the time it would be so bad it would cause alot of pain I also lost seventy pounds during the 4 years I took it I had alot of confusion would loose my memory and be confused alot of the time not being able to concentrate in school would become so dizzy at times i couldnt see or walk my eyes would twich I took the medication from age 17 to 21 I am now 24 All the weight i lost i put nearly twice as much back on and am having a hard time taking it back off causing heath problems i would like to see this drug taken off the market or atleast never fed to minors under agae 21

  122. I started on 25mg, then gradualy increased to 50mg a day of topamax.

    i was gradually gaining weight as i was constantly hungry all the time (for a period of 6 months).. only after 6 months after coming off this drug, the weight then came off and my normal appetite returned.

    has anyone else suffered this’?

  123. I used it for migraines..worst thing in my life! I had a miscarriage at 4 1/2 weight plunged to 90 pounds and I had pain in all joints. Was diagnosed with medicine induced Lupus after 5 years of hell from taking it and with all of that happening who wouldn’t become suicidal? I became so depressed and developed an anxiety disorder due to my declining health at the age of 32. The adverse side effects for me did not happen all at once so it took years to put it all together.

  124. I forgot to add that I was not told about the risks of birth defects until after I lost the baby. My blood pressure was so low that I was in the hosptial. I quit taking it because I wanted to die. I didn’t care..oddly enough I started feeling better and that is how I realized what was going on. I have been hospitalized when I get the flu as my potassium plunges to a dangerous level. I missed so much work and the side effects that constantly put me in the hospital financially devestated me. I don’t think you realize what it is doing to you..that is one of the side become incapable of functioning…I have had migraines for 25 years..PLEASE DO NOT TAKE THIS THERE ARE OTHER ALTERNATIVES!!!

  125. I took Tompamax for several months and it made me like a child. couldn’t pay bills and when I did I paid twice in the same month. I eventually felt as if I was losing my mind and end up getting Baker Acted and for the ones that do not know what that is it is when they lock you up in a physco ward without will and the doctor decides when to release you. Very degradging thing when you have been teaching for 27 years in a county of 25K. It also messed up my spelling ad I have major problems trying to spell simple words.

  126. I was put on Topamax in 2005 and it has been increased yearly. Unlike most on here mine was prescribed for seizures, not migraines. For the last few years I have been on 400mg. I definitely have the breathing issues and blurred vision, burning and numb feet. Insomnia has been an issue and really driving me crazy. I haven’t had much concentration or memory for much longer from other AEDs. When the nurse practitioner prescribed it she was so excited because of it’s weight loss abilities but she did tell me to be sure to drink plenty of water because of the kidney problems. Since then I have developed Kidney Disease but my primary care physician will not agree it is due to Topamax. Medicare has removed Topamax from it’s formulary list so it is no longer covered and I have read on forums like this one where people in the same boat are forced to go off it cold turkey and are having the worst side effects, seizures, nightmares, all kinds of things. Luckily I had enough to taper off. After reading all this I’m seeing it may just be a big fat blessing, get me off this stuff.

  127. I had a brain tumor when I was 12 which left me with epilepsy – seizures. I tried Tegretol, which didn’t work well, Depakote, which caused severe depression and weight gain, and then Lamictal..which worked pretty decently. I stuck with it for awhile, but noticed I still had seizures whenever I had certain foods or had a simple cold, so I was switched to Topamax.
    On Topamax, I never had one seizure, but in the beginning months I had extreme joint pain and insomnia. After awhile those symptons stopped, but I noticed hair loss, poor vision, ridiculus fatigue, and that I was becoming even slower in speech and with my memory. After about 2 years on the Topamax I began to have what my doctor and I believe are kidney related issues. She’s affraid the Topamax has damaged my kidneys. I am now coming off of Topamax and starting Keppra..which has much fewer warnings and I’m hoping my vision comes back, my hair stops falling out, that I don’t feel so stupid and forgetful, that I don’t have permanent damage done to my kidneys, and that I won’t be so tired all the time..we’ll see.
    I want to point out that for awhile I felt that there was something wrong with me..I didn’t realize it was the medicine. It made me over-emotional and easily depressed, but I figured it was just my life complications. It’s hard to tell that it’s the Topamax. You need to remember that these chemicals are messing with your brain.
    I know everyone is different and reacts differently to Topamax, but I’d rather have an occasional seizure on any other medication than all of these problems in order to prevent the seizures.

  128. I was on Topamax in the spring of 2008. It was a life saver as far as migraines but it was changing my personality drastically. Before Topamax, I had a very mild attitude towards most things in life but Topamax made me a suspicious sometimes hateful person. Each time I took a Topamax pill I felt kind of funny or weird within and hour or two. To be truthful, I wanted to lose weight along with control my migraines so I kept telling myself that these side effects would go away with continued use as alot of other drugs do. But, the effects only got worse. I had the memory loss, forgetting words in sentences several times a day, unwarranted angry outburst, ranting on and on, losing blocks of time, etc. Sometimes I would start making a comment on a subject and just keep talking and my voice would get louder and would keep talking until I wasn’t making any sense. Many times I would wake up in the morning ok but 2-6 hours later would think “where am I and what happened the last several hours” and would never remember it. I almost lost my best friends and then I knew I had to talk to the Neuro doc about it and she said “we have to get you off of Topamax right away!” I was hesitant because I didn’t want the migraines back and back they came. I’ve been on different meds since then and now I’m trying the Cymbalta route.

    As for right now, I know my memory and personality have changed. I am somewhat better than I was but frequently it is still a struggle to maintain a mild attitude and not go off into a ranting rave. I am still trying to heal the wounds I created with my one of my best friends 2 years ago. I wish I had never heard of Topamax.

  129. My sister is taking topamax, and she has severe memory problems. and anger isues- which she did not have before the topamax. just looking for more information on this product for her. thanks

  130. more information on my sister after reading more posts. I have had 2 strokes and my memory is no where near as bad as my sister’s since she has been the Topamax. it worries me alot.. actually i am very scared for her. how can they give this medicine to people without telling them the horrible side–effects?

  131. I only took this medication for 2 nights and it is scary to know what could have happened to me if my doctor did not take me off of it. The first night I took it my heart was punding so hard that I thought it might explode. I had tingling in my legs and I felt as though I had something crawling all over me. I couldnt get out of the bed and just passed out. I thought it was just because it was a new medication, so I took it again the next night. It was even worse that night. My heart was pounding again, i lost the feeling in my legs and I still had the feeling that I had something crawling on me. I tried to stay awake for fear that I was going to die but I couldnt. I kept going in and out of consiousness. I finally passed out and didnt even know it till I woke up that morning. My dad called the doctor for me that day and the doctor told me that I needed to get rid of it as soon as possible and to not touch the pills at all. I will never take this medication again. I dont care how severe my pain migraine pain is.

  132. i have been taking topamax for 3years or more and with this medication my hair is falling out and its to the point were im wereing wigs.and it makes me mean ,bruise easly on my body sometimes i have bruises they just come out of no where i wake up with them.the medication causes me to have blurred vision and after i take it my body is totaly drand.i forget things and somethings how to do simple things this medication should be off the market its not safe at all and its gonna be the death of someone one . the fda needs to stop people from taking it .i had thoughts of killing myself 5 or 6 times and i cry alot an this med why i dont know i wonder why a medication makes me feel this way.

  133. I was put on topomax for 2 mths after 7 days upped my dose to 50 mg and have a personality flip ended up going to the hospital doctor told me to stop taking right away …went to my doctor who told me just to go back to 25 mg and see if that works …started having chest pains which was anxiety induced by topomax so I quit taking it and haven’t been on it for about 3 weeks and still having constant anxiety shortness of breath and my hair is still falling out ….Im worried that this med has caused permanent heart damage or something

  134. I almost took my own life while on Topamax. This drug caused such severe depression, agitation, and suicidal thoughts. I was on 100mg a day at my highest dosage and also had other side effects such as numbness, confusion, hair loss, and memory loss. I finally went back to my doctor when the confusion got so bad that I actually got lost driving to work one day. The doctor lowered the dosage which helped the confusion and memory loss, but I was still very depressed and actually started to “plan” how I was going to kill myself and make it look like an accident.
    I immediately lowered my dosage again (down to 25mg) a day and the suicidal thoughts stopped. I’m getting off this drug completely before it does anymore harm.
    I beg anyone who has thoughts of suicide while on this drug to lower the dosage immediately then get off of it completely.

  135. my daughter kissy, took her life,by overdosing on topamax she was so depressd and she was like a yombie, she was so confused and we told her that the medication was to strong but she told us that the doctor had told her to keep taking it and that it would soon level off in her system my 27 year old (ONLY DAUGHTER IS GONE ) AND GOD KNOWS IT IS SO HARD WE ARE STILL SO DEVASTED. I FEEL THAT THE DR SHOULD OF BEEN SUED ALONG WITH AT&T FOR LETTING HER GO TO WORK WITH DRUGS IN HER SYSTEM

  136. we took our 11 month old baby girl to the hospital emergency sunday morning she fighting for her breath wheezing and like a snoring sound and a deep cracking croaking cough and like she was weak they took a x ray nothing showed on the x ray they did blood work and confirmed she has rsv they give her a nubulizer treatment and sent her home she seemed to do some what better towards noon but about mid after noon she started getting weaker and breathing harder we called the hosipital sunday evening asking if they could treat her agian they told us to bring her in it was about 5pm we got there they they told us she doesn’t need a treatment she’ll be okay so we went back home monday morning the baby’s body was lifeless but could make eye contact right away 9am monday we took her to our family doctor who admitted her to the hospital right away tuesday morning at 8am after being air tranported to a bigger city hospital at 5am at 8am she was dead the death certificate reads cause of death a:sepsis b:florid bacterial pneumonia c:rsv

  137. When i was 16 I was prescribed topamax and after taking it for about a month i lost significant amount of weight. I went from about 145-150lbs to less than a hundred pounds. I slept all the time and when i was awake i didnt want to do anything. One day i was sitting on my friends couch and went to stand up and i lost my vision for about an hour, i could still hear my friends talking to me. They said i stood up and fell on the ground and my whole body was shaking and that when i tried to speak my voice was muffled and i was mumbling. I was given this drug to control my moods and all it did was cause more problems. I still twitch sometimes from taking topamax.

  138. I’ve been on Topamax (actually I’ve been using the generic Topiramate) and have only been using 25 mg per day for a little over a month. I’ve developed severe vision problems. I have constant blurry vision, my sight has decreased from being 20/20 just a few months ago, and now i’m having constant flashes of light and tracers..I’m just scared because my eye doctor thinks this may be permanent and that I should consider a lawsuit. I have stopped taking the medication and anxiously awaiting to see if my vision will clear up.My vision is so blurry that even with glasses I can barely see any detail around me. I’m only 30 years old, I’m too young to not be able to see!!

    I have a question: Have any of you experienced these symptoms and then had your vision come back after stopping the topamax?

  139. Began taking Topamax in 2004, lost ision, memory, concentration, started out at 100 mg daily, by 4/2010 started having chest pain and seizures. Incresed Topamax to 200 mg. Tested heart and seizure activity evrything came out normal. Symtoms are still there ,don’t know where to turn, 26 seizures in 3 weeks later and ready to die!

  140. OMG!!! I am sooo freaked by all these comments! I am usually very cautious about taking any meds but since the doctor I worked for was taking it for his migraines I decided to give it a try. I had been having severe migraines about 3x a week and coulnt function. Now my migraines are down to 2-3 a month but Im functioning even less than before. Im having trouble writtng this post.I have to go slow and keep fixing screwups. I used to be preety smart now I am a complete idiot, I cant think ,spell, talk. I feel like a drunk, I fall over my short term memory is pretty much non existant.Since taking this medicine… I was in a car accident after the first week on it ( I slamme dinto the back of an SUV in my corolla because I did not see her right in front of me until the last few seconds, and then even after I hit her could not for the life of me figure out what happened.I thought there must be something wrong with my car… but it was actually my brain.I have the tingling in my arms and face but thought it was from nerve damage from the accident! My kids HATE what has happened to me, they call me “druggie” my son was really upest one day and screamed at me to stop taking this medicine because its messing me up. I have suffered from pretty much every damn side efect of this med and most of the time did not make the connection and was actually too stupid on the med to investigate it. I have slowly weened myself off but still suffer severe efects . I was only on the med for a little over 4 months but feel ike I ve lost a large chunk of my life. I have also suffered from severe phobias, stopped talking to people because it was too frustrating and I felt too stupid.I lost my job, and Am having a hard time finding another because I am so impaired. I go on interviews and I think they went well(although I do vaguely remember getting a strange look here and there so who knows what I may have said or done) and they say they will call and they never do. I know I do say and do strange things without realizing or remembering because my kids tell me. I also suffered from sever aggitation,mood swings, and non stop talking and blurting out strange or inapprropriate things. And actually laughed hysterically when my kids got upset and embarrased by my behavior. I CAN NOT believe what this crap has done to me! I am not correcting any more of my mistake so it can be seen how I write. This is actually how I talk.I used to be a good writter and speller and be able to form sentences properly and even type beetrr then I can now, I really feel like a crazy person and a stupid moron.This is teh worst stuff I ve ever taken! I CANT EXPRESS ENOUGH BECAUSE I CANT EVEN FIND THE RIGHT WORDS OR THOUGHTS TO SAY WHAT I REALLY WANT!

  141. I was put on Topamax for migraines, a very small dose for first week 25mg, to double after 7 days. I grew more and more “manic” until I ended up in the emergency room on the 7th day. I’m on unpaid sick leave now, to last for 2 weeks. OFF the Topamax but on the verge on losing my employee benefits and made a fool of myself acting like a nut for the past week. I can barely walk, feel like I’ve been kicked in the right kidney. I’ve seen 4 specialists since this happened! This stuff is dangerous. I may very well lose my job, bad enough already lost work hours and coworkers surely must think I’m crazy. They need to take this dangerous drug off the market. And I can’t see correctly! 25mg for 7 days and I’m a MESS! I’m STILL unable to go outside.

  142. Hi, I should note 2 things, one I am not a doctor, 2 I am sorry to read that everyone here has had horrifying experiences with topomax, however, This is literally the only medication I can take for my seizures, I have been on 13 different medicines, and tried multiple remedies herbal and vitamin. I lucked out with a neurologist who let me have control over the dosing and we increased this medicine very slowly starting out on only 15mg per day waiting 2 weeks in between each increase until finally it had to upped to 300 mg per day. I should note that I also take a secondary medication for partial onset seizures, I take b vitamins, fish oil, carry emergency medicine with me at all times, and eat a diet high in fruits, vegetables, whole grains and take a supplement of acidopholus daily. I understand how medicines can adversely affect people because I had serotonin syndrome. I also drink water, and have saved the full PDR inserts for every medicine I take and have my neuro and my nurse friends go over them with me. I constantly ask tough questions and if something pops up that is not right, I immediately take care of it, such as if I feel thirsty I drink, if I feel dizzy, and thristy I drink gatorade, if my eyes hurt and feel pressure, I call my doctor immediately, and don’t wait for a minute. I have survived a lot of BS from doctors, and I have decided that I am in control of my body and I get to decide what I will and won’t take and what I will and won’t do. As the consumer and the patient I have the right to ask the tough questions, and to consult and get second or even third opinions on what is right or wrong for me. If anyone reads this, go and do likewise. Shop around for a good neurologist, psychiatrist, family doctor, get the team to work for you, remember you don’t work for them. Do your research, look at your other drugs you may be taking and ask how these will interact, if they don’t know, say “please look it up” any decent doctor will. List all past and present medical conditions, any legal and illegal drug, alcohol, and tobacco use, birth control, etc. Its the smartest thing for you your family and your physician

  143. I have been on Topamax for several years for migraine prevention. For the first couple of months the only side effects I noticed was a change in taste and weight loss. More recently I have been having serious fatigue, weakness, and even a couple of blackouts. Until I done alot of research on Topamax I didn’t think this was the cause, now I am almost certain this medication is the cause. In 2007 I became pregnant with my second child, not knowing I was pregnant I continued taking Topamax during the first trimester. Later in the pregnancy I was informed that my son may have birth defects. He was born with hydronephrosis and has been through many procedures and tests. I can’t help but to think that Topamax is the cause of his kidney problems. My OB told me that stopping Topamax “cold-turkey” was more dangerous than to keep taking it, and slowly reduce the dose. If Topamax caused all of these problems I think I can handle migraines better than this.

  144. I was given topamax for my migraines. first the dosage was 25mg. 2x a day then it went to 50mg 2x a day at then end I was using 100mg 2x a day. looking back it never reallly now it never did anything for my migraine because I still got them and serious ones. After telling the doctor that it was not helping me he didnot seem to care also he never did blood work on me to see how this drug was affecting my body. He only gave me more medication like oxcodine for the pain. Now I have memory loss get stuck in sentences and sometimes I can look at some one and know who it is be the name will not come to me right away. Someimes trying to remember somethings are so difficult Iget frustrated. Do not us ethis medication for any reason because it does real damage to you.

  145. I started to use topamax in september of 2008, I was hospitalized for stroke like symtoms and at that point had several tests in the week that I was in the hospital and the doctors came up with the dicision that I had silent migrains that led to stroke like symptoms on the left side of my body. So they put me on topamax 100mg twice a day and I was on the drug for almost 2 years until I went to a new doctor. While I was on the drug I continued to have the stroke like symtoms, 2 to 6 a day, that consisted of tingling in the face and left eye blurry and numbing of my mouth and teeth down to my left arm which spasamed and contorted and down to my left leg which did the same as my arm. And these spells would last from 20 minutes to 2 hours, and I still have the spells today.I have lost my job and now have the shakes and the confusion and memory loss and my kids get mad at me because they have to keep telling me the same thing over and over. My new doctor took me off the topamax but never said anything about the side effects of the medicine, but I now have a new word for my illness its Paroxysmal Dystonia and we’re trying to get through all of this as I now have major depression along with the spells.

  146. I was on topamax for almost 1 year I took 100 mg 2 tiimes a day. I loved the fact the my migraines eased up and for the first time in many years I actually felt better because the migraines were not as bad as they were before I started taking the med. I had minor headaches daily and maybe a severe on 1 or 2 times a week instead of 5 or 6 times a week. I did have some of the side effects that everyone here have discribed but I had one that I have not seen here.

    I had surgery in Feb 2010. When I went to hospital for surgery everything with my health was fine. The surgery went well but in recovery there were major problems. I could not sustain my oxygen levels. My blood gases were off the wall and I suddenly developed pneumona in both lungs due to fluid retenion. They were giving me Lasix into the IV to get me to pass the fluid I was retaining. Then I developed a pulminary embolism (blood clot) in my left lung. After many tests they could not find where this blod clot came from. I was put on blood thinners to resolve the clot. I am still on them and will be for at least the next 6 months.

    When I went to my neo. for follow up on my migraines I told them about what happened in recovery. The Dr. then proceeded to tell me that one of the side effects of Topamax is the possiblity of a pulminary embolism. They told me that they had heard of this in 1 other case. I immediatly started the weaning process to get off the Topamax. I have been off of it for about 1 week now. I still have some of the other side effects but hopefully I will not suffer from another pulminary embolism.

    At that appointment I also asked about the shaking that started after the surgery. My neuro. then checked and tested and I was diagnosed with Essential Tremors. I do not know if this is from the Topamax. I noticed the shaking of my hands and the shakey feeling in my body before but I just figured it was my blood sugar was low as I am diabetic. I started to check the blood sugar when I would get this feeling and my level was normal. When I told the Dr. this that was when he tested me and advised me about the Essential Tremors.

  147. OMG! I just read some of the comments, and I have some that I just knew were related to Topamax, but no one would listen. My vision has never been the same, and my hands tingle just like one of the other posters, and it isn’t carpel tunnel, because I have been tested. I started taking Topamax about 2004 and had to quit my neurologist to get off of it because she said that it was a good drug. I have TIA’s and Migraines, but when I was on this drug, my vision was horrible, and has not come back to normal, even though I have not taken this drug for almost 5 years. I still have blurred vision, and tingling in my hands. I don’t get dizzy and fall down any more, or lose all feeling in my right side, from the bottom of my foot to my arm and shoulder. My face stopped getting numb about 2 years ago, but no one wanted to see it was the Topamax. I have finally found a Dr. who says that it was the Topamax, and want to find a lawyer who will take my lawsuit. I have never believe in lawsuits against the medical world, but this time I think the pharmaceutical company has gone to far. To many of us with the same side effects. They had to know. I think some Doctors were being compensated for prescribing this.

  148. OK SO I AM NOT CRAZY!!! I started using Topamax about 8 months ago. I was given the medication for 2 reasons, to help with migranes and a mood stabilizer as I was complaining about severe PMDD. The doctor told and you will lose weight. Awesome right? At first it was…it did help with my migranes and mood and i did lose weight. I started to notice that my hands and face would start to tingle after taking the medication…then my eyes started to twitch. My speech was all funny and jumbled…couldn’t get my words out right. I would tell my friends that I talk like an idiot now that i had my 3rd child. Then my hair starting falling out…I used only be able to put a pony tail tie around my hair 2x and that was tough….now I can do it easily 4 x. I noticed that my nails would break all the time, which never happened before. Then in dec/2009 I fell from the attic stairs and as the ortho dr. put it…I suffered a devasting and traumatic break to my left leg. I broke both bones in my leg from my shin down to my ankle. I now have 4 plates and 20 something screws in my leg and ankle. I started researching about the hair loss…then looking for any indication about broken bones and BINGO…I found it! THIS IS INSANE THAT THESE DRUG COMPANIES CAN MARKET ANYTHING AND THE FDA PUSHES IT THROUGH!!! Tomorrow..I will be calling my Dr and having blood work to check my levels and try to find a lawyer before someone elses life is ruined..not that mine was(hopefully nothing is permanent)but after reading everyone elses…this is a disgrace.

  149. Wait what are essential tremors? My daughter 16 just started Topamax 5 days ago for migraines. So far she has had the tingling hands and fingers, but tonight she said when she lays down she feels like her body is vibrating……..she’s only on 15 mg “baby sprinkles” cuz she is
    sensitive to medication. Also has low blood pressure which is why
    neurologist didn’t want to use anti-depressants or beta blockers for prevention.

  150. I have been taking this drug for a few months now and ther has been a very bad change in my every day life.I have had a lot of memory lost I sometime for get how to spell words i get very very depressed i cry almost Every day sometimes i dont know if im coming or going. I have lost a lot I mean alot of weight of weight. My doctor has me on 200mg a day.My vision has gotten really really bad and I have told my doctor and she bis talking about uping my dosage and they arent helping my cluster headache at all. I think there should be aq lawsuit againt this drug because they dont give you all the side effect and tell you all the detail about abut this drug and all the complacation people willhave and the side effect they will endure.I have also been having problems with my lower back. THERE SHOULD BE SOMETHING DONE ABOUT THIS DRUG

  151. I am so happy to have found this page. First of all, I want to send out my condolences to everyone who has had problems with Topomax that have affected their lives. I was put on this medication in 2004 to help with migraines. I lost weight and my appetite, but did not notice any other problems that I could relate to the medication. Within that year I began to have significant and debilitating pain in my joints. I also had numbness and extreme fatigue. I was told that it was Rheumatoid Arthritis…even though the blood tests were negative. Within the next few years, I noticed that I was having difficulty concentrating, my memory was impaired, and I could not find words that I was looking for. At the time I was attempting to finish my dissertation so I could complete my doctorate in psychology. I could not concentrate or remember the information I had learned in grad. school, so writing a graduate level dissertation became impossible. About a year and a half ago, I began to have severe fatigue, muscle and joint pains, tendonitis in various places in my body, tremors, numbness throughout my body, and I was completely unable to remember things. I was also suffering from continuous migraines. I had to go on leave from work. I became so debilitated I could not even cook for myself. The doctors ran all sorts of tests, but everything came back normal. They thought perhaps I had M.S. Again, the tests came back fine. Finally, about two months ago, one of my doctors recommended going off the Topomax. It has been like a miracle! I am still dealing with some of the side-effects, but things are dramatically improved. I cannot believe how much of my life I have lost because of this medication. I am hoping my memory and cognitive abilities return enough for me to finally finish my doctorate degree. This medication is poison as far as I am concerned. For those of you who are taking it and feel like you are having positive benefits from it…just be aware of the potential dangers. I had no idea this med. was causing so many issues for me until it was too late. My neurologist thinks the bad side effects will subside, but he is not sure if there may be some permanent damage. I am still in a great deal of pain. If anyone out there hears of a class-action lawsuit regarding this drug, please let me know. I wish everyone the very best in their recovery process…take care.

  152. I’m desperately looking for answers for my wife and I. She had taken Topamax for many years, a high dosage, i’m not sure how much but it was increase very often for migraines. Anyway, we had our first born child 15 months ago and stopped taking it during and after the pregnancy. She noticed withing a week after she stopped taking topamax that she got horrible feelings in her legs, they would ache and get dumb and move on thier own. She was diagnosed with RLS (restless leg syndrome) many months later but all of this started happening when she stopped taking the Topamax, could this have caused permanent damage? It is getting worse and worse, to the point where she can’t sleep and the bed shakes so bad I’m unable to sleep as well…Has anyone ever heard of Topamax causing this type of damage, please help, thank you!

  153. I am really conflicted about going off Topamax. It has been so completely effective at eliminating migraines from my life. When I started taking it, it was like a miracle. It stopped not only the cyclical migraines, but suddenly I could plan to take my kids to the beach or fair or school function and actually look forward to it without dreading the migraine that would surely follow. But like many here my cognitive abilities have suffered as has my memory and my work performance. I have trouble tackling complex tasks that used to be a simple exercise for me – I just stare like an idiot not knowing where to start. And I am more moody and less affectionate with my kids, I am feeling depressed and detached. Now I have a new symptom that I believe is related, I am having trouble recognizing faces. I always assumed the side effects were temporary….

  154. I took 1,600 mg. of Topamax per day for over 5 years for an off-label condition. I couldn’t see straight, couldn’t concentrate, had trouble staying awake, and suffered from chronic anxiety. My fingernails would tear from simply running them through my hair. A fractured foot took over two years to heal. The doctor said he was working “with” the drug company; that he was getting good results, etc. — comments that caused me (and other patients I know) to think this was all okay. No one thought to second guess his judgment. We all took other drugs in addition to Topamax, which I expect mitigated some of the effects. When the other drugs were backed out of one patient’s regime, though, and he was left only with the Topamax in his system, he committed suicide. I stopped taking Topamax shortly thereafter and feel better than I have in years. My fingernails are finally strong; my foot has healed. I don’t fall asleep at work. Another patient who stopped taking Topamax has had the same positive results. My suspicion is that many of our symptoms were caused by this drug — that our conditions were not as bad as we came to believe. Several states sued the manufacturer because it was paying doctors to prescribe this for off-label purposes. They won the suit. But who will take action on behalf of the patients? We were used as guinea pigs. My prescription cost my insurance company over $2,000 per month. The manufacturer made money on all of us.

  155. My wife was administered Topamax 1 week ago by her Neurologist. She started experiencing blurred vision yesterday and today she cannot see… I hope she regains her eyesight!

  156. i have been taking topamax for 5 months for ocular migraines. i started at 25mg once a day now I’m up to 50mg twice a day. i feel like I’m watching someone else live my life. i am a total grouch all the time. i don’t feel like myself ever. i have the tingling, numbness, metallic taste, loss of appetite. I’ve lost 35 pounds and i lost it within 3 months. my Dr said i would probably lose about 8 pounds. i am now seeing a specialist for anorexia. i had anorexia as a teenager, but hadn’t had any problems for a while, my Dr knew this and prescribed it anyway. i cant remember anything. I’ve gone in wal mart and not remembered how i got there, why i went, where i parked, it is a scary feeling. i have asthma and copd and this has made it much worse, but my Dr says its all in my head. i have shaky eyes. chest pain all the time. insomnia. i feel numb emotionally. i kind of feel like I’m in a box and i cant get out. i finally decided i was going to get off of it and told my Dr. he said i had been more bitchy since i started taking it and decided to wean me off. today was my first lessened dose. i feel much dizzier. have worse chest pain, and my head is killing me. i wish i would have NEVER started this medication.

  157. I began taking topamax 8 months ago for chronic migraines due to the hormonal changes in my body from my pregnancy. I am 5’5 and before my pregnancy I weighed 115 pounds. I have always been thin, but never had an issue with anorexia or weight loss. I just have an overactive metabolism. I have always been healthy; eating three meals, ensure drinks, protein drinks, vitamins, etc. Within a week of taking Topamax I had lost weight and began to have pain in my left calf muscle and right wrist. I had no idea it was a side effect of this drug, my neurologist never told me. I began to count my calories and eat even more; up to 7,000 calories a day! Still, I was losing weight. I knew something was seriously wrong. The doctor’s ran blood panels and tested for every disease. Everything came back within the normal range. My full list of side effects include:Unusual sensations, such as parenthesis, Dizziness , Fatigue, Drowsiness, Mental and physical slowing or delays , Nervousness , Upper respiratory infection, Coordination problems , Weight loss, Loss of appetite, Taste changes , Confusion, Difficulty with concentration or attention , Nausea , Diarrhea, Memory loss, Language or speech problems ,Sinus infection or irritation, Insomnia, Mood problems, Viral infections, Abdominal pain (stomach pain), Joint pain, Weakness Sore throat, Dry mouth, Indigestion, Mood problems, and Back pain.
    Upon further research I have found the following:
    “Migraines start in the hypothalamus area at the front of the brain.” Therefore, “Topamax works through the hypothalamus in your brain. This is where awareness of pleasure and pain is established, amongst several other supervisory connections that are made.” “The hypothalamus is part of the endocrine system. It secretes a hormone that regulates your metabolism, which is the rate at which calories are broken down in your body.” “Furthermore, stimulating hypothalamic NPY-LI, CRH-LI and galanin-LI as well as serum leptin levels may be associated with the weight loss-inducing effects of topiramate.”

    At my lowest I weighed 86 POUNDS! This drug has almost ruined my life. I look like those women you see on TV who are skin and bones, I’m scared to death that my weight will never return. I am slowly weaning myself from the drug, but still experiencing side effects (dizziness, weight loss, memory loss, and pain). PLEASE READ THE WARNINGS BEFORE TAKING THIS MEDICATION.

  158. Also, please read this study:

    Johnson & Johnson, the current owners of Topamax, began testing it as a weight loss medication on people without epilepsy, migraines or bipolar in 2002, but halted the tests because the side effects were too much for too many people.

  159. I’ve was given the generic for topamax and took it for 2 weeks the side effects were so bad I went off of it 25 mg. My insurance will not cover the real topamax but my neuro wanted me to try I went and got 15 days filled of the meds..back with the pounding chest, eyes feel like they are buldging out and so dry and itchy. I feel like I could hurt my family for little things. I’m coming off this drug totally I’ve taken 10 doses of the REAL topamax of 25mg. I had 2 strokes in 2005 and this was percribe for migranes…I guess I can just stop at this low of a dose I’m hoping my eyes will go back to normal.

  160. As I have read each and EVERY comment above, I so very much feel your pain. I have been on this drug, for several years now. It is now I too have began the plight to find out “WHAT IS WRONG WITH ME? Why cant I remember anymore? WHY is the right side of my body weak? Where has the left side of my vision gone? Where are my words, and why are they jumbled so? I once so very intelligent, now feel a fool. My personality, no longer my own. MRI’s over and again. MRA’s, CATS, BLOOD work HEART work, LAB work, all showing we JUST DONT KNOW???? So IS it this drug? After reading these comments, it does lead one to believe it is quite the possiblty of such. It is NO secret the FDA throws meds at us, like feed to cattle and then AFTER people are dead, AFTER the horrid effects, they say oh ooops. I say NO OOPS HERE! I think it may be possible time to take on the makers of TOPAMAX, as too many people are having the SAME symptoms, and are coming up with the same answers. I would very much like to hear from you. I am NOT an attorney. I KNOW them, and a lot of them, as I am sure a lot of you do to. I have to say, life is precious, it is too short, to be tampered with, to be anyones guinea pig. I have children, I want to see them, get married, see their children, and by all means, I want to run by the ocean with them, but as for now, most days, I spend, on the couch, or in the bed, if not the that, it is travelling from one doctor to another, in hopes of the all elusive answer, that I somehow know, will never come. So what with all this said, I must now say to you each, What say ye? Do we go after the giant? For I do not think myself small, no rather, I remember David, and he held the stone and that one stone took that giant down…one blow, one shot, end of the story. . . and we get our lives back. May you each be blessed as you ponder this decision.

  161. Hello Guys, I just turned 18 and have migraines 2-4 a week. I’ve been taking Topamax for a month now starting at 25mg once a day then twice, 3, now im moving to 50mg twice a day. Side effects include numbness in my face, vision changes, such as when i blink i get a glimpse of a hollow sun with black middle and orange rays for split second, keeps reoccurring. Also depressing thoughts and feelings, memory loss, difficulty concentrating, speech impairment, difficulty finding words to say (stumbling) same amount or more frequent migraines, loss of appetite. I believe I should get off this drug immediately, consulting my doctor first of coarse.

  162. I have been on Topomax for several years for migraine prevention. I am 45 years old and was just diagnosed with cataracts. This does not run in my family and I have no health problem assosiated with the early onset of cataracts. I have talked to my neurologists and I am coming off Topomax. I also had kidney stones last fall and now upon research see that kidney stones are a side effects of taking Topomax. There are things about this drug that the public needs to know about it before they are put on it for extended periods of time.

  163. I’ve been on Topamax since I was diagnosed with epilepsy when I was 16 and I’m 24. I couldn’t be more grateful for the drug. Growing up I had seizures which progressively got worse in severity and in frequency over the course of a few years. Before diagnosis, I was having literally 30 seizures in a day.

    The first anti-seizure drug we tried was a great success, but it gave me a rash. Now, we could’ve stayed with that drug and gotten yet another drug to deal with the rash, but that’s just silly. The least amount of drugs in your system the better off you are. So then we tried a different drug. That seemed to just make the seizures worse. I got off of that in a heartbeat. Then we tried another: Topamax. It was a rocky start, to be honest. I still had seizures every once in a while, so my doctor had to adjust the dosage until it was just right. I felt then and still feel no side-effects of the medication.

    I’m not sure why so many people are experiencing such horrible side-effects with this drug. I only knew of a few side-effects when I was first given it by my neurologist – none of them being any symptom you all have gone through. My heart goes out to all those who have suffered as a result of being put on this medication. You have good reason to be upset. I was plenty upset about the two previous medicines which failed me, and they didn’t even cause me any real damage.

    However, it is no fun to be upset. Looking through everyone’s comments, there is a common thread: everyone is fighting a common enemy – the medication. Is that the real enemy? When taking a medication, we are fighting a disease or disorder. That is my enemy., which has long been defeated. Decide which enemy you want to fight.

  164. I was on Topomax for a year for migranes and I stopped taking this medicine becuase I started feeling like I was going crazy. My mind kept racing, sometimes I can’t see straight or concentrate. I have told my Dr about this and she tells me it is sleep deprovation. Hardly. I do beleive it is this drug. Now, all of a sudden within 5 months from stopping Topomax I am having kidney failure which so far, they have not been able to find out why. I am only 35 years old and like many of you, I have kids that I would love to see grow up. This drug has impacted my life so much….some days I just feel like I can’t live like this anymore…my mind isn’t right…no one can tell me why I am so dizzy all the time and why I feel like I am losing my mind. I have been to a Nephrologist, Ongologist and an Ear Nose and Throat Dr…no one has any answers and just tell me that they dont know why. This is crazy…this company really needs to take this drug off the market and pay for all the damage it has caused everyone. I think we all need to rally together and start a class-action law suit. I was heathly before I started this medicine and now I feel like I am losing my life. This just isn’t fair.

  165. I started Topamax 4 years ago when I started having migraines more days of the months than not. My doctor started me on 25mg and slowly titrated me up to 25mg twice a day. I stayed on that dose for almost a year. When my headaches started to come back I increased my dose a little and now, 4 years later I am only on 50mg in the morning at 100mg at night. I, too experienced weight loss (it came back) and nausea but have had no other problems. Topamax was a life saver for me. I had tried other preventative meds and nothing worked long-term like this has. I don’t know what I’d do without it.

  166. I started on topamax over a year for what I was diagnosed with as complex migraines. Before I would get migraines I would lose my vision, have numbness in my face and tongue and a tingling sensation in my fingers. I had this since before I I hit puberty… I’m now 31. The doctors tried everything… And nothing worked!!! Nothing!!! Until I found topamax… And mind you I was getting the horrid migraines at least 3x a week! I thank God for this drug. I also know that there could be serious side effects… Fortunately for me I only suffered from the weight loss. Oh what a suffer. 15 lbs. I’ve been doing a tremendous amount of research on this drug and there are many more websites that state it has helped those than hurt. And you have to know that all drugs will interact differently with different people. So just because it didn’t help some of you doesn’t mean it won’t help others!

  167. Here’s my story.. I was prescribed topamax in September of last year for migraines from my family doctor. I took it the way it was prescribed by increasing the mg. which my doctor was at no fault in how it was prescribed. When I increased my medication to 50mg. a day it was with in hours I lost my vision. Completely scared out of my mind I had my oldest son call my wife at her work place and she rushed home. Not knowing what the cause was my wife looked up the side effects on my medication Topamax, and in fine print she found vision loss. We went straight to the E.R. I was then in severe pain and vomiting with real bad eye pressure. She took the print out of the medication with her and tried to show it to the doctor that was caring for me. They gave me numbers of shots of pain killers and sent me back home and I was still blind at the time. They said I had a complexed migraine and it would be better by morning. That morning my wife woke me with a fear in her voice and I was still blind. She told me later that my eyes looked as if they were going to burst and I didn’t even look like the same person. She rushed me to our family doctor and they immediately sent me to a ophthalmologist. He stopped all other Patience and did emergency surgery on me and told me I was most likely with in two hours of being blind for life. I was told I most likely got closed angle glaucoma from taking Topamax. Me at the age of 43yrs. is rare. I’ve had many surgeries sense and now have developed cataracts from the trauma of the glaucoma. I had more surgery and implants inserted in my eyes. All of this has changed my life completely. I now have to wear trifocals and even then my vision is nothing like it was. The worst part of it all is I’m a truly great detailed artist and I now struggle and have lost that special detail I put into my work. My art work is my life. I was going to try starting up my own business with my work but now it is on hold. I’m not one for stupid lawsuits but I feel someone should be responsible for their negligence and take more notice of the seriousness of side effects to medications. I’ve contacted a few law firms myself and yet got any answers. If anyone can help I do feel that me and my family do deserve some kind of compensation at least the bills that my insurance didn’t cover, further more they shouldn’t be reliable to cover the cost neither. I would greatly appreciate any help or answers to my case. I don’t even know if I have one. If so or if not I still thank you for your time… James!

  168. I have been on this med for about 5 years the cost was un bearable i have been taking it to control migraines. which came along with the seiezures that began having in 2005 have had a lot of the same side effects as others tingling, eye twitching, sleepiness, dizziness and memory loss and i know the siezures play a major part. i had to switch from dilantin to tegretol to control my siezures and i still take topamax too. mainly 100mg daily when stopped cause i couldent afford it depression kills me and sometimes i have had crazy thoughts that i shouldnt i have to deal with ths know cause this is only meds i can afford i dont want to be a victim of this drug no more.

  169. I have been on Topamax on and off again for about 5 years. I have always experienced the tingling feeling in my fingers and toes that others have mentioned – for that I take 1000mg of Vitamin C and it alleviates the problem. I had what I thought were canker sores at one time – so the person who mentioned eating the banana might be on to something – it very likely could have been a potassium issue. I took cranberry pills and drank water constantly, having heard from others who had experienced kidney stones while on the medication.

    The pros: I was able to sleep after battling insomnia for several years (and no other medication would work), although sometimes I would sleep all weekend, or for 18 hours straight, and my migraines became less frequent and less intense. I was also taking Lexapro for panic attacks and when a migraine occurred, I would take Maxalt or Zomig, depending on the intensity of the migraine. And just to be clear – I have experienced migraines that were so bad that I have not left my house for an entire week, or while on overseas flight one time, I spent half the flight in the lavatory vomiting. Fortunately, I do have a doctor who also experiences migraines and he offers up some good advice when traveling to avoid migraines – unfortunately, this doctor is my dermatologist and not a Neurologist or even my GP.

    The cons: I had one experience with temporary neuropathy, but after going off of the drug for a few months, my vision returned in about 2 weeks, I experienced short-term memory loss and sometimes seemed “confused” or “dazed” (or so others have told me), at times and could not articulate very well – a must in my profession as an attorney. As a Diet Coke addict, I had a big problem with not being able to drink carbonated beverages and since I don’t drink coffee, I became a habitual tea drinker. Probably my biggest complaint was that I went from being a very active person (running 10-15 miles a day and on-the-go constantly) to not being able to catch my breath walking up a flight of stairs. I was also tired and weak a lot. I spent most of my time off from work in bed. My social life plummeted.

    I have, on occassion, gone back on the drug when my migraines became too much and refused to go away – you now the kind where you have to be in a dark room with no sound on and they last for days – even weeks in a couple of recent incidents. Having worked on many pharma cases, I am well aware of the side effects of drugs like Topamax. I have read adverse medical reports where people have died from Topamax (and other drugs).

    Why do drug companies keep distributing these drugs? Because for those of us who do experience side effects, there are more people who do not suffer to the degree some of us do. Drug manufacturing is big business. I read somewhere that J&J makes 2 billion dollars a year off of Topamax – so from their point of view, they help some people and make a ton of money – even if they end up settling claims and running up huge legal bills.

    The pharma companies contribute the most money to our politicians and that is why drugs like Topamax continue to be on the market. Kick-backs are common. I found it amazing having worked on drug cases and read the clinical trials and studies what the drug companies knew about the drugs before even seeking FDA approval and putting it on the market.

    I have seen how other countries (Japan, Australia, Canada and the UK) react much quicker to instances of side effects by adding warnings to labels, or completely pulling the product from the market. I mentioned this to my father the other day and his responsee was that it didn’t use to be that way. The FDA would have been the first to label a drug with an adverse medical event side effect. So, what’s happened in the last few decades? Easy – money and greed. Those of us with few options who experience repeated episodes of intense, long-lasting migraines will do anything to make them stop. Drug companies know this and take advantage fo our mis-fortune. What we have to do is not just litigate, but start a grass roots movement against the drug companies and the FDA. As long as our politicans continue to receive contributions and support from J&J, Lilly, Pfizer, Glaxo, etc. nothing is going to change.

  170. Do not take topamax. My neurologist said that I was suffering from migraine auras and I should take topamax. The side effects concerned me greatly, he said not to worry it only affects 3% of those that take it. After taking the med for almost 4wks, I had no headaches but lost all concentration, had seizure like attacks that forced me to go to the hospital (was there for 2 days) they said that everything was normal and that I needed a psychiatrist. The neurologist refused to see me even though he was at the hospital. I checked myself out and called my family doctor and he told me to get off the med immediately for I was having an allergic reaction to it. The withdrawal symptons were bad and lasted for a month. I lost 25lbs in 3days, short and long term memory loss, suicidal thoughts,lack of concentration, depression, severe anxiety,nausea,back pain, extreme stomach pain, diahrea, phlem. It has been 8 months since being off of topamax but i have now been told my stomach and intestines are severely damaged and I may have Khrones or Celiac disease. I have never had any serious illnesses or depression, anxiety, suicidal thoughts in my life until taking that drug. My dosages started small then increased so the symptoms got worse gradually. The worst was when the doctors said that it is all mental when you are in extreme pain and know somethings wrong. Be careful, doctors now are paid to promote certain meds that are newly released to treat new things, no matter what the cost to you. I have lost over 4 months of work and am still having a difficult time trying to function, I still have setbacks with lots of pain and extreme weight loss. One thing I have learned with the damage it does to your stomach, watch out for what you eat because it can make the pain worse.

  171. Wow, the thing that makes me so scared about this site is that most of those on here were prescribed this medicine for migraines, and yet I’ve been taking it for 2 years for epilepsy. I have 4 different kinds of seizures and am on Topamax and Phenobarbital.
    Initially I had numbness in my hands, feet and face. It felt like those parts were asleep, but it was also painful at times. Now, I cannot feel them at all. I was also very tired, which they told me this wouldn’t make me sleepy. I am 5’2″ and was about 135 lbs, and in 2 weeks I lost 30 lbs. I have continued to lose weight, my lowest being in the high 80′s. I became a completely different person, according to my family. I argued all the time, I yelled, and just became someone I didn’t know. Once this was brought to my attention, I have been trying my best to be mindful of it. I went to see my doctor, told them I wished to be taken off of the medicine, a medicine they still continued to say there were no major side effects for, and they kept me on it. The numbness got worse, my mood swings got worse, my weight has it’s high and low days. I have no energy at all. My vision has worsened and I have pain in my eyes. My hands ache as though I have arthritis. Then, even though I am a fairly intelligent person, my memory started to go. I didn’t remember my kids, I didn’t remember conversations, I couldn’t recall birthdays, phone numbers, account numbers, etc. I forgot entire days, as in, when they were explained to me, I remember nothing about being a part of them. I used to be an excellent speaker, and now I not only fumble for words, but I sometimes mix them up in a sentence, and the sentence makes no sense. I can be speaking and everything I was going to say just leaves my mind. I have difficulty catching my breath sometimes. My blood pressure is constantly low and my pulse stays at about 50ish when I’m active.I’m 29 years old, yet I feel like I’m 92.
    This medication is horrid. For whatever reason you take it, you should stop. I have been on 8 other AEDs (anti-epileptic drugs) and I’ve never had anything like this, and I’ve had epilepsy for 23 years. I finally got my doctor to listen and am going off of it, however, I have to gain weight first. Hmmmmm…..what an oxymoron.

  172. To Mama
    My doctor me on 400mg of topamax and if you are on it just for weight control you need help. As for this drug I was put on for Migranes,strokes,and seizures but it caused my body and mind to go to HELL.
    I fell depressed all the time and have pain lower abdomen. my hair is felling, joint pain ,eye seizures , memory loss mussel aches.
    and you are on it to lose weight you make me sick.YOU NEED HELP. SEE A SHRINK

  173. Hello everyone,

    My wife went through all of the test possible for a Cerebral Aneurysm and was finally prescribed Topamax by her Neuro a couple of weeks ago. He ask her a couple of questions when he was telling her about it, the typical weight loss, tingling, bad taste and short term memory loss but he NEVER mentioned that she could develop “Glaucoma”. We went to the ER on Friday and were immediately told to rush to the Opthamologist for treatment. She had laser surgery yesterday and has been in severe pain and a state of shock and depression. It is scaring the H–L out of both us and we don’t know what to do now. Any help please.

  174. I have bad headaches for the past 3 years and they have gotten worse , plus my doctor is always asking if i am depressed , because i talk to softly. Any she wanted me to go to the neurologist and i did. I have never taking anything but a vitamin, and I do not drink or smoke. I am 38 , you would not know it if you saw me. So the doctor tells me topamx is my favorite medicine. It will help you a lot, you may have some finger numbness and soda my taste funny ,I do not drink soda,ok then take them before bed. 15 mg and I am to raise it every week. This place has scared the mess out of me. So I will just deal with the pain. WTF why would theses people say this is ok to take. Bad Bad.

  175. I was taking Topamax for about 7 years for chronic migraines. I just recently stopped taking it because my eyes were getting so bad, at an alarming rate. I had to get my glasses prescription redone 3 times this year alone. I was on 400 mg per day for the last 3 years. Other side effects were loss of memory, weight loss, insomnia at night, extreme exhaustion during the day, hand/finger and foot numbness/tingling, pain in my belly, RLS type symptoms (itchy crawly skin in my upper legs, not being able to control muscle movement in legs), depression, hair started falling out, and difficulty catching my breath sometimes.
    I stopped taking the Topamax about 2 months ago and most of those symptoms have vanished. I still have a little insomnia, my hair is still falling out a little, and my eyes have improved but not nearly where they were. If I had continued on this medication, at the rate I was going, I would have been blind within 10 years. My migraines never did completely go away while on the medication but they actually improved after quitting.

  176. For me it seemed to work for a while, but then the side effects got worse and worse. I wanted to die after a while, it changed how I acted and felt. I get cluster headaches, unfortunately.

    They gave me prednisone for 10 days and then Verapamil increasing the dose. Mixed results, it does reduce the severity but doesn’t keep them from happening. Zomig nasal spray as soon as you have an inkling that a headache is coming on… By far the most effective treatment. Super expensive but I have an HMO so it’s included.

  177. I wish there was a class action lawsuit for people who have suffered permanent side effects from Topamax. I first posted on this website last December, just weeks after going off Topamax. While I have seen some improvement in cognitive abilities since December, I am not the same person. I have been unemployed for nine months and the thought of updating my resume and interviewing for a job is overwhelming. I am currently seeing a psychiatrist for medication to treat the Topamax side effects. One bizarre change I have noticed is that after I started taking Topamax I became very artistic. I used to be strictly word-oriented (degree in journalism) and always made bullet-pointed lists. Now all I do is sketch and have filled notebooks of drawings of meaningless items. If I had artistic talent then this new obsession would be a good thing, but the truth is, I can’t draw. I mention this change because it seems that my brain was rewired after using Topamax. Has anyone else noticed a similar change?

  178. Topamax should have a Black Box warning on it-the strongest warning the FDA puts on any medication.In my opnion, it is a dangerous drug.

    On November 29, 2009, I had my first and only seizure. I was standing in front of my suitcase packing and the next thing I remeber is waking up in an ambulance, disoriented, vomiting and crying. I had no idea where I was or what had happened to me. I was 42 years old at the time, with no personal or family history of seizures or epilepsy.

    They did some preliminary testing-bloodwork and a CT scan at the hospital. When I got home, I began seeing a neurologist and had an EEG, MRI, and more blood work. I had none of the markers of epilepsy and was not diagnosed with epilepsy. My doctor, an elderly man in his late 70′s told me I had “abnormal brain waves” and that I needed to go on anti-seizure medicine. He wanted to put me on Keppra and I said how about Topamax (only knowing that it suppresed one’s appetite).

    If only I knew then what I know now! Hindsight is 20-20, as the saying goes!

    He told me I would be on it for the rest of my life. I didn’t drive for three full months.

    I started out slow, titrating up my dosage. I was supposed to work up to 200 mg in the morning and at night, but when I got to 75 mg AM and PM, that was too much for me.

    The cognitive/memory side effects were terrible. I often couldn’t retrieve words. This was really bad as I am a college student. I have a 4.00 GPA that I have worked really hard to achieve and maintaining it these last 10 1/2 months while on this drug has been a real challenge.I have had many problems with my short term memory.

    By far the worst effect, though of this drug has been the mood altering changes that occurred. And they were tied to my menstruel cycle. Prior to being on Topamax, I never in my life experienced PMS. My menstruel cycles are very regular 28 day cylces. For the last 10 months, about four days before the start of each of my periods, I experienced the absolute worst sadness I have ever had in my life accompanied with nonstop uncontrollable crying. Worse than any post-partum depression I ever experienced with the births of any of my children, worse than the grief over my father’s unexpected death. Sadness so bad I felt like I just wanted to die. It was bad.

    I had researched all the ant-seizure meds and they are all pretty bad-they all have very similar effects, so I just tried to deal with it, but it was horrible to go through every month like clock work. It would start 3 or 4 days before my period and last until about 4 days into my period and then taper off. Every month, without fail.

    Then In August, my elderly neurologist retired due to health reasons and I had to find a new one.

    My first visit coincided with my PMS and I had a bit of a meltdown and I decided I couldn’t take it anymore, that I wanted off of this drug. She insisted that I a MRI and a 24 hour digitrace EEG before she would discuss talking to me about coming off. Fine, I said. I left with orders for both. It was a Tuesday. I was told that they would call me to schedule the EEG.

    By Friday I hadn’t heard anything, so I got on the phone to find out why. I had been hoping to do it over the weekend. (Who wants to walk around with 25 electrodes and wires attached to their head?)I told them I couldn’t get off of the medicine I was on until I had this test.

    What medicine are you on? she asked.
    Ah, stupamax, she said with a chuckle.

    We don’t do it on weekends, but we have an opening on Tuesday, otherwise the next opening is on Novenber 29th.
    I’ll be there.

    So, I had the 24 hour electrode test. And I waited for the doctor to call me…but she didn’t, so I called and she said she wanted me to have the MRI.
    As we got closer to that appointment, I began to feel anxious about being enclosed in that tube. I had done the other MRI with no problem. But there was no way I was going in that tube. So I called the nurse and told her and she said she’d arrange an open MRI, which she did. But then the next day it got cancelled because my insurance company didn’t know why I needed an open MRI. I spent 2 1/2 hours on the phone with my insurance company working it out so I could have the open MRI, which I did have.

    So I got all of the testing done. I was trying to avoid being on the Topamax when my period hit again. I ahd about 2 1/2 weeks and I knew that I had to taper off. I called to schedule an appointment and was told the earliest appointment available was October 29th, which was too late. I was told her nurse could override it though, so I literally begged the nurse for an appointment and she basically told me she couldn’t.

    So the next day before I left for school, I left a message for my neurologist telling her that I was going to start tapering myself off of the Topamax and I needed a doctor to help me and if she wasn’t that doctor to please let me know today so I could find a doctor who would.

    When I got home from school there was a message from her nurse letting me know that I had an appointment to see her the following day.

    She suggested Lamictal and I said not the one with the rash.
    (It is a rash that can be fatal and/or permanently disfiguring) I didn’t want to put this medicine into my body, but a friend of mine convinced me to try it.
    On day 11, I developed a rash. I caught it early and stopped taking it, but there is still a pinkish-purplish spot of discoloration on my nose. I’m thankful my entire nose isn’t purple.

    Now I am at 25 mg in the morning and at night. I am on day three of my period and this is the first menstrual cycle I’ve had since December 2009 without any extreme depression and nonstop crying. It feels absolutely fantastic!!!!!

    Some of the other side effects I experienced were eye twitchs (the elderly neurologist said I was just tired. Yeah right. I”ve been really, really tired before at times, before I was on Topamax and I never had that)., really bad back pain and pain in my joints, severe menstrual cramps, and appetite suppression.

    What I want to say to anyone who is being prescribed these medicines, is don’t be intimidated by the doctors. Speak up and question them. You can say no. Research the medicines. These medicines especially are trickier to deal with because you can’t just stop taking them all at once. Stopping cold turkey can bring on a seizure even if you’ve never had one.

    My doctor now wants to put me on Keppra. No way. I finally feel like myself again. All the doctor knows about you is what they read in your file. You know in your gut if what you’re experiencing is due to the medicine.

    To the pharmaceutical companies I want to say:
    where is the antiseizure medicine that doesn’t make me fat, stupid, tired, and depressed?

  179. In April 2010 I visited a Neurologist to find a better drug to replace Neurontin for releif from my Polyneuropathy. I was put on TOPAMAX and gradually reduced the Neurontin. After several weeks of treatment I began to sleep 24/7. I had no appitite. The Dr. sugested that I was sleeping from taking Morphine (modest amounts) for my neuripathy.

    After 3 months with no relief, confusion set in and I was not sure of what I was taking. Someone called 911. I was admitted to the local hospital, diagnosed with Acidosis redulting in RENAL Failure. Near death my primary physician quickly took me off TOPAMAX and I began to improve.. I still have no idea what the future holds.

    This drug company and this neuroligist should be sued, however, attourneys are relunctant unless there was permenant damage or loss of life. Beware of TOPAMAX!!!!!!!! I am a very young 72 with years of life ahead.

  180. In March of this year, I was seeing a neurologist for Menier’s Syndrome. Despite my explaining to him that I can’t take most medications becasue they trigger severe vertigo attacks, he prescribed Topomax explaining that it may provide relief of my vertigo episodes. He told me the side effects that I may get were some tingling in hands or feet, a little dry mouth and maybe a little weight loss. Nothing was discussed about any serious side effects. I took 25 mg/day for 9 days. On the 9th day something bad started happening to my vision. Words were jumping off of the pages of things I was trying to read, my eyes felt jittery & I was having light sensitivity. Since I was previously told by my doctor to work through any side effects until they pass, I thought this was one of them. But when my vision started to deterirate very quickly my husband took me to the ER. I had light sensitivity, there were haols & intense colors around street lights & I could hardly see. While in the ER I began to feel clausterphobic & very scared becasue tings apperared to be closing in & colors were cartoon-like. The CAT Scan they did showed normal. I was sent home. (I didn’t take anymore Topomax after this).

    A few hours later, which is now the next day, my husband called my neurologist who said this is not normal, told us to get to the hospital right away & I was to be immediately admitted. After I was finally admitted & taken to my room I took off my sunglasses which I had been wearing becaus of the intense pain from light, my husband noticed that my left eye was buldging out of my head. My left pupil was also dialated. I remained in the hospital for 3 days because it was the weekend now & I had to wait for poeple to read the results of the CT’s they took (all of which came back normal) & I had to wait for an eye doctor to come in to see me. Finally on Sunday an eye doctor came. It was then that I finally received drops to reduce the pressure in my eye (which was up in the mid 40′s). All the doctors & nurses said this is very rare & couldn’t figure out what was wrong. It was fianlly agreed that this was caused by the Topomax.

    I followed up right away with the eye specialists (neuro opthamolgist, retinal specialist & glaucoma specialist) I continued the drops as instructed, but even though the docs said everything was back to normal, my eye didn’t feel like it was. I had pain behind my eye, headaches which I didn’t usually get before, & I could feel my eye inside the socket. My husband even noticed it was still larger than normal & my vision which always has been 20/20 was still blurry & wierd. The eye doctor insisted I didn’t have glaucoma, & told me that I need glasses now. I never got the glasses because I believed this was due to the Topomax.

    Now several months has been spent searching for an answer for the constant eye pain, headaches & now burning of my eye. I went to a different eye doc who diagnosed me as having Narrow Angle Closure Glaucoma, which is the rare kind. I have had a Peripheral Iridotomy in both eyes to correct it. Fortunately the procedure has “fixed” the glaucoma & the pressure but I still have intense pain, headaches & burning. He’s a good, thorough doctor but he can’t find the cause of my continual symptoms. He has referred me to another neuro opthomologist but I can’t get in for 12 weeks.

    I’m scared of what’s happening to my eye, & I’m scared that so much time is passing. Its been 7 months now since it started. This is the first time I’ve ever posted anything on a public forum, but I’m interested to hear if anyone else has a similar situation & if they found a cause that can be treated. Plus I feel very strongly about this medication. For anyone considering it, please research it & learn as much as you can about it. I think a drug like this should have major warnings & vision problems that could be permanent should be at the top of the list, not minimized at the bottom as a very rare possiblity. The doctors keep telling me that this side effect is a well documented but very very rare side effect of Topomax but according to my research, it isn’t rare. There are many many people who have experienced this and other very serious, and perhaps permanent side effects. Remember, I took the lowest dose for only 9 days & I now have a condition I didn’t have before & I fear what damage has been done that hasn’t been detected yet.

  181. My back have been hurting me for a while. I realize that one of Topomax side effects is back pain. I can hardly get out of bed in the mornings. I also have tingling in my fingers and feet.

  182. I have taken 50 mg of topomax for about 2 months to help with chronic migraines.

    My Dr. told me to expect some MINOR memory loss for a few days but it would go away.

    Well it did not go away. I still have severe memory loss. Slurred speech, can’t remember simple words, how to spell words I have always known how to spell, flu like symptoms. My hands tingle and ache. My ears buzz and I have intense ear pressure all the time. Once I had blood come out of my left ear with no pain and this has never happened before.My eyes are dry and I have some eye pressure. I also have mood swings, feel depressed, have thoughts of what it would be like for others if “I were no longer here” and thoughts like “what is the point of life, you just end up old and alone, your children leave, why not just end it now” I have never had thoughts like this EVER!!!!

    My Dr. never told me about any of these potential side effects so, I trusted that this was a safe medication. It was only when my headaches started coming back and I did not want to go to a higher dose that I googled “How to taper off of Topomax” All of my symptoms suddenly made sense.

    Needless to say I have cancelled my follow up appointments with this Dr. since he feels it is ok to rx poison to a Mother of four that can cause permanent damage. I have found a new Doctor and plan to find something safer to treat my migraines.

    This is scary and serious stuff! It should not be handed out to people unless they are not able to function without it and only as a last resort.

    I have small children and a husband, I just pray this has not caused me any permanent damage.

  183. My father had one episode of what was described as Global ???? amnesia about 6+ yesra ago. After many tests and no further episodes (he just forgot where he was and was disoriented) passed after about 8 +hours. Neurologist has done a yearly check up and has had him on Topamax 100 mg twice a day since. He is 92 years old and relatively heathly. I had to change Neurologist for him due to a move. The new Neurologist after reviewing his records was puzzled as to why he was on Topamax for this long and has him weening off it. When I got his prescription refilled for the lower dose I read the insert that the drug store gives you about the drug precautions etc. I almost fell over when I read the first precaution re: Glaucoma….My dad has Glaucoma and is getting near the end of seeing at all…his vision is very limited. He has had this for 10 years. It was known to all the Drs he sees…Other then the fact that he is going blind he is relatively healthy…seems to me that prescibing this drug (after what I’ve read) to a patient with Glaucoma is criminal…am I wrong?

  184. It has been two years since my first comment (#3) on this list. I have been off of Topamax all this time, however, the adverse effects continue. I have been told that if they have cleared up by now, it can be considered permanent damage.

    I was initially prescribed Topamax as an off label use for Bipolar disorder, a condition that has since been declared a gross misdiagnosis. The doctor started me at 200 mgs. and quickly increased the dosage to 800 mgs. to aid with sleep, which in turn developed into intractable insomnia (a known side effect).

    From the beginning my language center was adversely affected. Unable to find words, stuttering both vocally and on the keyboard (and all that time I thought the computer was on the fritz), unable to write without spell check as my constant companion became a way of life. Not so easy when you are a writer.

    I also developed what appears to be MS or a variant of. I have 12 lesions which cause numbness, tingling, RLS, nerve pain, spasms, visual disturbances, urinary incontinence, among other symptoms. I have not had a diagnosable “attack” since the first one 10 years ago which numbed the entire left side of my body, causing permanent damage to nerves; not the standard profile for MS. However, it should be noted I had been on Topamax for a few years back then.

    On neuropsychological testing, I came up as “impaired” and “disabled”. Prior to this I had been an honor student in college with a high IQ. Since beginning Topamax I am no longer smarter than a ninth grader. Dopeamax strikes again.

    For those “addicted” (yes addicted – no different than a street drug) to the weight loss aspects all I can say is lose it the healthy way – eat less, drink plenty of water and start exercising. The artificial weight loss is NOT worth the damage. You’ll end up thinner, dumber and possibly dead. This is NOT, I repeat NOT a weight loss pill. Stop it for a few weeks and you’ll find it all comes back along with extra baggage.

    The acidosis is a real and serious side effect. Be sure you have your urinary citrate levels checked for abnormal values that can lead to kidney failure and death.

    Advocate for yourself and demand to know the risks and potential side effects of this drug and be sure that other professionals follow you up while taking it.

    I am a Patient Advocate and Activist against the endangerment of patients by uninformed physicians and Big Pharma’s reckless and unethical marketing practices. Check out my blog at for more information on how this works.

  185. I took 500mg of Topamax twice a day for 8 years. When I got pregnant my neurologist kept me on it but lowered the dose. I have 2 very healthy children although I took Topamax and breastfeed while I was on meds.

  186. I’d first like to say that I hope everyone who is having or has had problems with Topamax is getting better.

    I’m with the relative minority on this site who found Topamax to be a lifesaver. I experienced hormonally triggered migraines for the better half of each month–migraines that lasted days at a time.

    After years of dealing, I was prescribed Topamax. I experienced most of the same side effects that others have reported–ticking eyes, memory lapses, verbal difficulty, numbness and tingling, disorientation, weight loss, etc. However, I knew that these problems were likely to arise, because I read the literature that accompanied the medication AND researched it heavily (incl chat rooms such as this) prior to taking it. All of these things ARE in the fine print (which admittedly is fine for a reason.)

    Most side effects faded completely out within a 6 month period.

    I was on Topamax for close to three years, in dosages ranging from 50mg/day to 200 mg/day, and the only reason I have stopped taking it is because I am 36 years old, pregnant, and unwilling to risk any birth defects. I feel the cards are stacked against me enough as it is. I will, however, go back to Topamax after the birth and weaning of my child if necessary.

    I believe the thing to understand here, especially given the number of troublling, negative testimonies (although I suppose a “lawsuit:” page would be ripe with those), is that everyone does respond to medication differently. What works for one may not help another. Take charge of your own medical interests, though. Be your own advocate. If something doesn’t feel right, change it. You’re an adult. No one can force a pill down your throat if you’re uncomfortable with it. Find a new doctor if the one you have isn’t interested in prescribing anything else. Be informed and in charge instead of lamb-like.

  187. Hello, I’m following up on the comment I posted back on July 6, 2010. I immediately got off Topamax the following day, my doctor acted offended as if i was the bad guy for having these symptoms! I told him that it was giving me vision problems, memory problems, trouble concentrating, and constant uncontrollable suicidal thoughts. All he did was brushed them off like i was crazy! My memory problems were so bad that i could not remember if I took my morning dose when it was noon. Also I had horrible depression and constant suicidal thoughts, it left me feeling worthless and hopeless about everything. As I said I am off it now but my vision has never been the same. I have a lot of visionary disturbances, for example, I will see purple, black dots everywhere, as if I looked at the sun for a long time then looked around. This happens frequently and it is very abnormal. I noticed this while I was driving at night and I would look down a dark street and it would be blurred by dots or shapes, hard to explain, but this is something that never used to happen and my vision is as great as it used to. I have been thinking I should see my eye doctor soon. Also I am still depressed, not sure if it is the Topamax, but I still have suicidal thoughts from time to time. Now if I could go back and never take this drug knowing the side-effects than I would never go near Topamax. But doctors will only discuss the benefits leaving you with hope that your problems will be gone. I know they have the pharmaceutical companies putting all the pressure they can to prescribe this drug. Anyways whoever is reading this I thank you for your time, and hope that all the people who had a bad experience with Topamax get better.

  188. I took Topamax for less than a year for severe migraines, starting when I was 23. It helped somewhat in the beginning, but the side effects were horrible. The tingling in my hands and feet went all the way up my arms and legs, and was painful, like being electrocuted. The short term memory loss and the inability to find words and finish sentences was instantaneous, as well as losing my long term memories. After just 2 days on the meds, I called my doctors office and asked if the side effects could be permanent, and was told by the assistant that as soon as I stopped the medication, the symptoms would subside and everything would return to normal. Fat chance. I’m 28 years old now and still suffering. It’s like I have ADD combined with Alzheimer’s. I can’t remember the simplest things and I’ve lost so many old memories. When friends reminisce about old times, all I can do is smile and nod and say “that sounds like something I’d do.” It puts a huge strain on my personal and professional relationships due to my inability to remember events and tasks. Some days I think I’m lucky to even have a job at all. Let me be clear, I DID NOT HAVE THESE PROBLEMS BEFORE TOPAMAX. I have also noticed black spots in my vision that persist, and my vision declined while taking the drug. I occasionally still get the strange tingling when I wash my hands or shower, and my eyes will twitch on and off, sometimes for months at a time. I want to pursue more education, but in my current state, I worry that I won’t be able to retain any information. I had also hoped to have children one day, but I can’t imagine how dire the consequences would be if I happened to forget something important while caring for them, so that pursuit seems unlikely to happen now. Even while driving, I often forget where I’m going and why I’m in the car. I constantly hope that I can remain alert enough to avoid an accident while driving, but I sometimes fear that my right to drive might be taken from me one day soon. I was in a lot of pain when I started taking Topamax for my migraines, but if I had been told that the brain damage could be permanent when I asked my doctor about it, I would have quit immediately.

  189. My wife had been prescribed 200mg of Topomax a day as a migraine preventative about two years ago. Over the last year, her personality changed greatly and the migraines really didn’t decrease much. I could see the personality change as she and I have been married for over twenty years, but the doctors didn’t see it and would not listen to my comments even when I accompanied her to the appointments. All this went into overdrive six months ago with major personality and mood changes and the resulting attempts on her own life. After the second overdose attempt in a week, she also had a pulmonary embolism which was probably caused by either sitting in her car for several hours slumped over or from lying in the hospital bed unconcious for a day. Emergency surgery saved her life and she is now back to her old self since she’s been off the Topomax for a couple of months now. She remembers little of the two months previous to the episodes and her vision is returning to normal where it had been getting worse. Short term memory is still a problem right now so I hope this isn’t permanent.

  190. I was taking 25mg of topmax for migraines. After about 8 days, I woke up on day 9 unable to see. I went to see my neurologist in an emergency, who sent me to an opthamologist. She reported my vision had gone from a -2 to a -7 overnight, my eyeballs were swollen 2x their size which was affecting my vision. Once the swelling in my eyeballs went down, the fluid filled all around my eyes swelling my eyes. I had lost my vision for 2 days.

  191. Jennifer, i feel your pain. My doctor thought my headaches may have been migraine related, headaches every day for about 6 months now but unless I have a very high pain tolerance I did not feel they were migraines. I was a bit nervous to try this medicatioin but thought I would give it a month and see if it helped my headaches. I was only on 25 mg twice a day for the first week and was suppose to double my dosage each week up to 4 pills twice a day within a month. I only took it for one week and just got up one day and couldn’t see. vision so blurry i couldn’t see anything beyond right in front of my eyes. immediately got in to see my opthamologist and she had to do laser treatment to put holes in my iris’s for my eyes to drain from all the pressure. she is unsure if my damage is permanant or not. I went from 20/20 vision to not being able to see anything beyond the length of my arm in one week. very scarry. now a waiting game to see if I get any of it back

  192. i was giving topomax for migraines and three days later i started to have seizures and i never been right since… that pills cause my life to change, and here it is 7years later and i still suffer from taking that pill….

  193. I too have had the worst experience with this medication. I started taking Topamax in 2007 for migraines… this was the biggest mistake of my life!! About two weeks into the medication I had pain in my right wrist….I even went to the ER thinking I injured it somehow. They could find nothing wrong. As I said it started in my wrist then traveled to my left wrist, shoulders, knees ect. I never associated the medication to my ongoing problems. This went on for years… I was a Firefighter/EMT and could no longer perform my job description… I soon became unemployed. I thank God that I have such an understanding husband. The symptoms became so severe that I could no longer walk without assistance. We went to several Doctors who said that there was nothing wrong with me…until a blood test called an ANA Panel showed 1:1600+ , yet they could not find anything definative. This medication has destroyed everything I worked so hard for. I quit taking it after reading an article and realized that I was experiencing the problems associated with Topamax. I have been off of it for about five months now and have improved considerably however, I still have muscle/joint pain but am hoping it will improve with time. I also experienced many other symptoms such as memory loss, severe menstral cramps, insomnia, tingling in my hands and feet, weight loss, but the pain was the most unbearable part of the ordeal. I was prescribed Vicodin fo rtwo years just to function on a daily basis. I am now off of it too!! This is a terrible drug and should be taken off the market or better warnings should be announced.

  194. I was put on topamax for migraine headache. I had severe short term memory loss so bad that I ended up taking Arecept. I found that I could not remember how to get home or where I was going I would lose feeling in my hands and would drop things. I also had freqent urination and put on meds for that I was taking it when I found out I was pregnant my MD took me off cold Turkey and I ended up in the emergency room in severe pain. I had bleeding during my pregnancy and he has developmental delays and behavior problems. I did not know I was pregnant for almost 2 months.

  195. i have been on topamax for almost nine years now for a eating disorder that started when i was 14 years old. thank god this medication saed my kife or the eating disorder would have destroyed me

  196. Has anyone experienced a thyroid disorder after going off this medication? After my nuerologist left the area and I obtained my medical records, I noticed that she made a notation in my records about low TSH (thyroid stimulating hormone). She never told me about this. Nearly 5 years later I was told that I practically had no thyroid level in my blood. Now I have to take medication to treat my thyroid disorder and have gained back all the weight I lost while on Topamax and about 30 lbs. more. The thyroid medication is causing dry mouth and gums which has led to a tooth and gum problem for me.

    Topamax is poison, simply said it will ruin your body and lead to other health problems that will never go away. I will be on thyroid medication for the rest of my life. Someone needs to help all of us people who were misled about the benefits of Topamax and look at the health issues that we are all experiencing from trusting the physicians and drug company who manufactured it. I was taking Topamax for Fibromyalgia which is an off-label disease that doctors were prescribing it for. The weird thing with me, after getting off Topamax and being treated for the thyroid disorder, my Fibromyalgia symptoms have disappeared, only to look forward to poor health that was caused by taking this horrid drug.

  197. I was placed on Topamax 3and a half years ago. I have had bad migraines since I was 6 months old. They decided to try Topamax since nothing else had helped. I was on it for 9 days total. About 5 days in, I found I was extremely irritable and moody, flew off the handle over everything, felt like harming myself and just wanted out of my own body, to escape all the bad feelings. I pulled myself off the meds after the 9th day, because I couldn’t handle it any more. Two days after I went off the meds, I started to have my eyesight go blurry, over the next four hours, I went almost completely blind. I went to the ER and was told it was part of my migraines. I told the Dr. it wasn’t and he told me I didn’t know what I was talking about. Funny I am pretty sure it was me that had delt with these for 30 years, but I guess he was the expert on them. Needless to say, I did not goback on the meds as he had demanded. The next day, still blind, I called my optomatrist. They saw me on emergency, and told me it looked like I had angular glaucoma. They sent me to a specialist, and his only opinions were, that he would give me new glasses for my new vision, and that my eyes were shaped weird. Day three, I was seen by my actual eye Doctor nstead of his partner, and right off the bat he asked me about the Topamax. I told him I had been on it for 9 days, but took myself off of it due to the side effects. He told me to stay off it, because I was having an extreme allergic reaction to it. He said that hopefully it would correct itself, but that had I stayed on it, it may have been permanent. By the end of day four, over the period of four hours, my eyesight came back, it is not back to what it was before, but at least I can see. Get this DRUG off the market. Everyone I know that has tried has had some problem or another. The few people it helps is not worth the damage it does to those it hurts. It is the DEVIL drug from HELL!

  198. I had an accident at work and evetually was put on all kinds of medications and one was Topamax.Found out after taken the medicine, which drove me nuts, fatige,depression weight loss, loss of memory, afraid of everything, scraping my skin off my own face, feelings I had never felt before, found out I was pregnant, not once was tested by my workmans comp physician until I told him I had an infection and had’nt had one since I was pregnant with my daughter then decided to do a pregnancy test.I found out I was far enough along and was told to have an abortion, because of the meds. bad enough everything was falling apart and I wasn’t for sure about anything I told my attorney and there was nothing anyone could do. It has been several yrs, and I cleaned myself of their prescriptions, but still fear I have side affects from the drug,consumers please be ware…If it doesn’t feel right it’s not right…

  199. i have headaches for over 18 YEARS, some dAYS I HAVE TO JUST
    STay in the bed, i started on topmax a yea ago. 200mg a day. i started losing my memory. my teeth and gums are so sore and my mouth is broke out, my blood pressure is 60/40 i have had two strokes. i can not work or drive a car, i have black out spells i am truly loosing my mind. one dr told me i had dementia until he found outi was on topmax. this is a very bad drug. i would not advise any one to get on this drug.

  200. my vision is very bad i can hardly see/

  201. I was put on Topamax almost 2 weeks ago, my neurologist prescribed it for chronic migraines…and within the first week of a dosage regime of 4-50 mg tabs. 2 in the am and 2 in the pm…i was lost inside my head…i was in a fog…my hands were frozen in a sense, and i shook like i had stage 4 parkinsons…the right side of my face drooped, and i was drooling…i dont remember much at all from the last 2 weeks, i was sooooo tired, but didnt sleep at all…when i called the neurologist, and told her i had a reaction to topamax and asked for sumthing else that i knew worked, not only did she refuse a different prescription, she acted nonchalant about the reaction.
    yesterday i went to my ob dr for a regular scheduled appt, and when she saw me in a wheelchair was very concerned and started asking questions…she in turn sent me to the ER where the drs really paid me no mind when i kept telling them i had a reaction to topamax…my dr ordered xrays of my back and waiting on ct scan appts because she is testing me for a mild stroke because im carrying all the symptoms and signs. i still have my headaches, and i havent taken topamax for 4 days now, and i still cant see clearly, i cannot hold a train of thought, i have tremors in my hands, severe lower back pain that has seemingly crippled me, and i have to concentrate to write my own name…this is sad for i have 5 children, one of them being 3 months old…so sad…all i wanted was some relief from migraines and now look at me…

  202. I was on this drug for approximately 2 years. Immediately I suffered cognitive deficits, memory loss, not being able to count money, overall “fogginess” in the brain. I have been off of the drug for almost 5 years and still have difficulty thinking of common words. I can be looking at a pencil and can not think of what it’s called. I have no short term memory. On a daily basis I will walk into a room and wonder what I went in for. I have to make lists of everything I need to do or purchase because I don’t remember a thing. I was very sharp and on the ball prior to taking this drug. Now my family teases me for being so ditsy all the time. This is a serious drug that needs to be taken off the market. The benefits do not outweigh the side effects.

  203. I have taken topomax for several years my eyesight has deminished. I now have seizures frequently I was told by my Dr it was for migraines and was diagnosed BiPolar at times It made me feel suicidal. I have a studdering problem from time to time and my memory is very bad. I loose feeling in my hands and loose control of my head movements. I feel as if I have lost my mind.


    This lawsuit has no scientific basis other than scare tactics.

  205. I experienced the horrors of topamax b4 i found this page. i dont believe at all that the terrible things these people have suffered r at all scare tactics. If u havent experienced what we have as a result of this devil drug then u have no right to really comment. Scare tactics??? Really???? Whats scary is that im 30 yrs old and i cant hold my 4 month old daughter at times because of the way my hands shake, or having a stroke and not knowing what was happening 2 me, or not being able to remember how to spell my name at times… Thats scary.

  206. I was initially given topamax to assist in weight reduction. Initially it seemed to help. I started to have some problems with my vision which I assumed were just in need of a new pair of glasses. After several months, I started to become more forgetful and frustrated. I would fall asleep without realizing it. I felt physically and mentally drained. Eventually I asked the Doctor to take me off of it. We agreed to do so, within a few weeks afterwards I had fallen of my steps at home. My primary care physician advised my I had post concussion syndrome. I never actually hit my head. I got put back on the topamax to help with the migraines I got as a result of the concussion. The forgetfulness, not being cognitive all the time, I had basically begun to develop the symptoms of an ADD patient. The memory loss was frightening. My husband would send me to the store for a few items, I would walk around the store trying to remember what in the world I was supposed to be getting. He would tell me something and five minutes later and I didn’t remember him saying a word. After three months of this behaviour I lost my job. I have worked in the same business for over twenty years and had a sterling reputation with all of my employers….and I got let go. Today I still suffer from dizziness, forgetfulness, and am very unstable on my feet. After seeing a new Neurogist, I was advised that my symptoms were due to the medication otherwised nicknamed “dopemax”. This medicaiton should be removed from the market. There many other symptons I have suffered due to this medication. It’s frightening to not know if this will improve or not

  207. I understand the frustration and horror stories believe me I have my share but topamax wasn’t my problem. I am only 21 and I have over 7 chronic diseases and take over different 10 different medications daily some of the diseases can kill me. However, you have to remember that if you take more than one medication, even with a supplement you are almost making a “new drug”. Drugs interact and 2 drugs interacting can make an effect that separately they would not make. I was also told I needed to stop taking topamax, however, I knew this was not a good idea, I have a BA in chem (going to med school) I know how these things work. Instead I talked to my dr carefully and saw what was causing problems. I stopped one drug, which I was on before topamax and all the symptoms of the drug “topamax” went away and I was feeling great. I then stopped taking topamax to prove to myself it was fine to take and I was in horrible shape (granted I was under dr supervision). It was not my topamax causing issues. It was a combination of medications. Most people have more than one dr and they dont really know which drugs interact and which ones could be making you worse which added together.

    Sometimes it will be topamax but in my case it was not (and had I listened to my dr I would be on different medication now) and I think some people dont realize that even vitamins and OTC meds can interact with this medication.

    I am not saying people are wrong but just think about it and be careful. I had many seizures due to “pure medication combinations” that doctors told me were fine together.

    Also everyone is different and will respond differently to medications and combinations; it may take a while to find the right one for you.

  208. I wAS on TopAmax for over a year. The drug is also calledStupemax by some.
    It put my life in chaos. One day I was A dynamic girl with a great careeR, the next (6 moS lAter). I was on the decline and soon lost a great high paying job. I Had memory loss, slow thinking, word rEcAll issueS,
    Cognitive slowing and loSt over 30 lbs to weAr I had to start eating protein shAkeS to keep weight on.
    I hope issues are reSolved w this drug. I’m still trying to bounce back.

  209. My wife has been on Topamax for around 5 years for migraines. The neurologists increased her dosage from 200mg a day to 400mg a day. This was last summer. Since then starting in August she exhibited stroke like symptoms every couple of weeks. Whe have been to the emergency room 3 times since then. She has no control of her legs, slurred speech, basically cannot function. They treated it as a stroke and claimed it was a severe migraine on day 2 of our visit. All heart tests came back good. She has had every tests run that is available. Each time she is in perfect health. Recently after our third hospital visit she was taken off of Topamx after a week. She began hullucinating badly. (A living hell for me her spouse). I have more to add but will stop.

  210. I was on Topamax when I found out that I was pregnant with my Daughter. She was born with Cleft Lip.. I am just now finding out about this lawsuit that is going on.. Does anyone have any advise or have a child born with the birth defects that are now being shared with those of us who were on the drug at the time of conception?

  211. I have been on topamax for over a year now. I take over 200mg a day for migraines. Unlike most, I am not here to complain. For me this has been a miracle drug. I am 25 and have suffered from severe migraines since I was a child. I agree it does give you some stupid moments and at times you do get tingling in your hands or face. For me the tingling doesn’t happen too often now. It was more so right when I was put on the medication, but if your doctor didn’t warn you about the side effects of the medication then read up on it. Because most of what everyone has said so far (to an extent) are common side effects). Also, you MUST drink a good amount of water with this medication to avoid kidney problems. I have always been a big water drinker anyways. Usually about a gallon a day, and a take a One a day vitamin. The dr just did an exam on me a few weeks ago to make sure my white blood cell count was good, kidneys were okay, etc… If it wasn’t for topamax I wouldn’t be able to make it through one day without migraines to the point of vomiting and needing to hide in a dark room. This has been the best drug EVER for me! Weight wise I may have lost a few pounds but literally…. a few (0-5 from the med). I am a small to begin with, and really haven’t seen much change in my appetite at all.

  212. I have lost my memory becaz of Topamax. I cant even remember things that happens early in the day by the end of the evening. I lose my train of thought when I’m talking. I have been off of it for at least 6 months! My eyes are blurry and when I started taking it 3 yrs. ago I started hurting so bad I went to a rheumatologist! I didnt have rheumatoid arthritis.This is a horrible medicine and I thru my away!

  213. I was prescribed Topamaxx following my daughters birth 2 years ago. While on it I suffered memory loss, fatigue, confusion, disorientation. It was so apparent that my boss, who is a veterinarian noticed there wasn’t something right with me, and suggested that I stop taking the drug. I informed my family doctor and discontinued use after only 3 months of being on it. Now 2 years later I still have memory loss. If I don’t write it down, then I forget it. Also I have moments of confusion that I contribute to the drug. I honestly believe this is an existing side effect of Topamaxx. I DO NOT recommend this drug to anyone!

  214. I was prescribed this medication for treatment of bipolar disorder. 25mg in the AM and 25 in the PM for the 1st week then taper up to 50 mg at night. I continued the 25mg in AM and PM for almost 3 weeks. I tapered up the night dose to 50mg and a week later the Dr increased my AM dose to 50mg and my PM dose to 50mg. I know of the hand and feet tingling, the sudden onset of depression, the eye twitching, the sudden gastrointestinal issues, and recently issues with my urinary tract. My hair is falling out, I have lost weight, and I am fatigued but cant sleep and have recently noticed that my nails are softening. How does any of this treat bipolar? How does any of this help anything? I havent been on this medication very long, maybe a little over a month. I cant remember words I want to say, I cant focus on my work, I feel like an idiot actually. I was better off as an unmedicated Bi Polar II individual to be honest with you. I feel really terrible for all of us here who trust in the Physicians and Pharm. companies that have our lives in their hands. I am hoping this is all reversible. I am not taking one more of these meds.

  215. I was perscribed Topamax about 7 years ago for what my Dr. assumed was migraines. The sad part was he himself did not exactly know what was causing my symptoms for what he was treating me for.
    I like others that I read about had some of the same symptoms. Tingling in my fingers, drastic weight loss, memory loss expecially for math, some hair loss. When I spoke to my Dr. about these, he said, \”Oh, yeah that is some of the side affects.\” Eventually my family Dr requested that I be taken off Topamax due to the weight loss. And eventually my Dr. that was treating me for what he really did not know what I had, agreed to take me off, it really wasn\’t working. As of today I have been diagnosed with right angular closure glocomua. I just went for a eye examin to get new glasses and to my amazement I was diagnosed with this condition. When I mentioned to him that I had taken Topamax in the past his reaction was one of disbelief. He wanted to know why I had taken it, how long I was on Topamax. My suggestion is to anyone that is on Topamax, stop taking it. I feel that the side affects are far more damaging that the condition you have.

  216. I was prescribed the drug Topomax for epilesy and migraines. I cant remember exactly when I began taking Topomax but then again, thats nothing new. I do remember getting back on it after having my daughter in 2005 and have been taking it ever since…even thru my last pregnancy. Like alot of the comments Ive read on here, I too have memory loss. If it happened more than 10 min ago, I forgot it already. I have no energy, always tired but have a hard time going to bed at night. When I do finally fall asleep, I wake up every hour or so. I always feel frustrated, angry, like Im backed into a corner and I cant get out. Depression is a part of every day life for me. Suicidal thoughts are also quite common but so far have been easily avoided due to my strong Lutheran upbringing and the fact that I have 5 beautiful children that need their mommy.
    In 2008 while I was pregnant for my 5th child, my seizures got out of control. I was having 2-3 a week. So they raised my dosage from 100mg 2x daily to 150mg 2x daily and added on 500mg of Keppra 2x a day. It still didnt stop the seizures. They had to induce labor at 36 weeks. When he was about 3 weeks old, he started getting real sick. I was taking him back and forth from the hospital to the doctors office. He was acting real weak and vomiting. Wasnt really eating. They kept telling me it was acid reflux, or jst his formula. After a week of all this run around I had takin him to the doctors again one a.m. He was looking extremely pale, eyes bulging out of his head, his face looked like a skull with skin stretched across it. I knew something was way wrong!!! I asked the nurse as she was taking his vitals what her take was on what she was seeing. It was at that point we realized he was no longer breathing. VERY LONG STORY short…he was diagnosed w pyloricstenosis, rsv, bronchiolitis and pneumonia. They told me he had the pyloricstenosis since birth and that its a genetic thing. The funny thing is, no one in either my husbands nor my own family has ever had anyhting like that. So was it the Topomax or just a terrible misfortune?
    Im very sry to all of you who have had the terrible side effcts that come along with this drug. I know how frustrating it is. But it is comforting to myself to know that there are others out there that feel the same way I do and that when I cry because I am terrified that Im not gonna remember all the precious little things that my children do now, theres someone out there who is crying for the same reason. Its just nice to know Im not alone anymore and that there is someone who understands.

  217. I was prescribed topamax for epilepsy I was taking 100mg three times a day. I lost more than 50 lbs. , experienced memory loss, extremely weak and lazy, it kept me so doped up I didn’t know whats going on half the time, I stop taking it but I still experience numbing of my hands and toes Im always cold and my vision, I now wear glasses. Before i was taking topamax its like they were using me as a test dummy they couldnt determine were the siezures were coming from so they tryed me on different seizure medications(depakote & lamictal )making my situation worser. I got pregnant a couple of months after they diagnosed me epileptic. Im taking these different meds and went to a routine clinic appointment, they drew my blood and my baby was born with gastroscisis (intestines on the outside) it wasnt genetic they didnt no what caused it but they seen it before in like 1 out of so many thousands of births the numbers were ridiculous i was young didnt no any better (17) didnt no to question the meds

  218. I was prescribed Topamax in 2008 for migraines and fainting. I read the enclosed risks and side effects. I REFUSED to take this drug. There were far too many side effects such as skelatal pain, loss of language recognition, kidney failure and an ARRAY of other things. I am not suprised that this drug has now caused so many other problems.
    My advice, see a natureopathic doctor. Find the cause and cure it…do NOT just pop a pill to treat the symptoms! I am sorry to all of you who were not aware of the effects, and remember, that everything happens for a reason! Good and Bad. Bless you all!

  219. After a year on Topamax I went off it. And a few short months latter I suffered major eye pain and fuzzy vision to start and then the eye pressure got so bad I lost my sight for a few months. I had to get multiple spinal taps and a multitude of specialists could not figure out how to fix my case. Finally a neurologist put me on an aggressive bout of steroids. A few months later I my vision got good enough to function but now I have permanent nerve damage due to the spinal fluid that had leaked into my sockets and caused the eye pressure to rise. I now have permanent major sight loss in my right eye.

  220. I am on Topamax. 50mg a day. I am now experiencing hair loss along with depression, fuzzy vision, and confused thoughts. I have a doctors appointment in a few days to get off of this medication. I cannot be depressed and experiencing these side effects while my husband is deployed and I am the only parent to take care of our child.

  221. I’ve been taking generic topiramate for about 2 years now (I think… memory’s not that good… go figure). At first, it was quite the miracle drug–I was sort of in a constant state of migraine, and the topiramite made it go away. I didn’t mind the tingling fingers and all that.

    But in the past several months, I started noticing mental problems–confusion, disorientation, and serious memory loss (short term and long term, like I have dementia or something, but I’m only 21). A lot of the symptoms were similar to what I had before I started on the drug.

    I suspect acidosis. In fact, I started eating an alkaline-forming diet (lots and lots of lemon water, no meat, raw veggies, quinoa, etc) and started feeling better. We’ll see if it lasts.

    Oh, and I also have worsening vision in my left eye. I’ve always had a slight astigmatism, but now, from seemingly nowhere, I’m also quite farsighted in my left eye. I suspect topiramate because, what else?

  222. i took this med for years. when the migraines started reappearing, my doctor just ramped up the dosage till i was on 400mg daily. i couldn”t stand it anymore. i have lost memories of entire friendships. i have neuropathy on my r hand and arm. i have generalized pain and weakness. i couldn’t even sing, because i couldn’t remember the words. i have been weaned off with my doctors help but some of the symptoms persist. i have been a nurse for over 20 years and this affects my practice. please help me.

  223. I have been on Topamax for about 2 years, for migraines I currently take 125mg twice daily. Since I’ve started taking I’ve had blurred vision( halos when i wake up in the morning), Slightly elevated AST ALT levels, my MD’s are aware, intermittent vision loss in one eye (new normal eye exam so far), dizziness, so tired that I have to take a nap at least once a day. I developed asthma, since being on this medication, which I have no family history of this and I have no history of this, tingling on and off in my hands and feet. I have a tremor in my left hand I’m unsure if its related to the medication but its getting worse. I have very back muscle and joint aching. I have also had some reproductive issues. I also at times can even think straight, or remember simple things. Now not all of this may not be related to this medication, but before I was on such a high dose I felt like a normally functioning person I have a appointment coming up with my neurologist to try and wean off this drug since it is no longer controlling my migraines. Maybe it not the drug that is causing all this but before this I was a rather normal 27y/o

  224. i was on topamax and maxalt for my migrianes. from day one of taking topamax i had the loss of memory blurred vision the dizzness and the balck outs. After a year of taking myself off this med.i still have the same dizziness blurred vision and memory loss of the simplest thing like how to spell me own name, where i live, or even how old i was, and now it seem like i have more wrong with me than i did before. I have weakness in my right arm , and both legs, and chronic pain alover my body. I am on 39 yrs old and my husband alond with other drs say i move as if i was 95yrs old. And the a dr. put my 14yr.old daughter on the same pill before i realized it was the pill making us fell like this, needless to say i threw her pills down the tolite. I feel it is wrong for these companies to make these drugs and the are suppost to help u but cause so much problems

  225. In 2009 I was taking Topromax for lifelong “common” migraines. During the time that I was taking it and increasing the dosage for breakthrough headaches I was experiencing side effects that gave me mood swings (I was either crying or being verbally agressive). 0. I was losing words which I blamed on being 63 years old. I began walking like a drunk and basically behaving like one. My therapist suggested that this behavior was from the Topromax that I was taking. My neurologist weaned me off it and the symptoms diminished but never left completely. Within several months of quitting the drug my symptoms worsened. At that time I thought that the drug had changed something in my brain. After all that’s the purpose for siezure treatment. My neurologist was adament about it being a safe drug. I never went back to him but when I became lightheaded and dizzy, feeling as if I’d almost had too much to drink, I went to see my PA suggesting that I may have a middle ear infection. She sent me for a CAT Scan which showed vasculitis. From there I had an MRI which was inconclusive. Next was a negative Lyme’s test, then a visit to the rheumatologist to check for Lupus. After four months of testing, it was ruled out. I found a new neurologist who thought I had MS. He sent me to a specialist who felt that I did not have MS but suggested I return to the Neurologist. He ordered a second MRI of the brain and MRIs of the C and T spine.He disagreed with the specialist and was not thrilled with my asking questions which I’m sure he felt undermined his authority. So he dismissedd me as his patient and told me that I only needed one doctor and it should be the specialist. I returned to her and she still felt it was not MS but that I should have a Spinal Tap just to be sure. The specialist referred to the possibility that it was depression. After my first meeting with the MS Specialist I started on Cymbalta which helped the depression but did not decrease my other symptoms. A TV ad concerning people who had taken Topromax led me to this website. I was beginning to think that I was a hyypochondriac.

  226. I took 100mg of topamax today prescribed by my neurologist yesterday to attempt to control my basal artery migraine symptoms to replace the inderal i have been taking for years, big mistake… hours after taking, i experienced dizzieness, numbness of the lips, left arm, left fingers, severe cognitive difficulty, inability to think, the neurologist told me to immediately stop taking the medicine and drink lots of water to flush it from my system, i will never take this medicien again, found this blog again, awful medicine, still feeling awful, but improving, hope the symptoms fully subside… my heart goes out to those of you that have suffered on this medicine…

  227. Thankful to not be alone…I’ve been on Topamax about 1 1/2 years starting day one of 30 days to get off them !! What a horrible drug!! I hope the side effects don’t remain afterward?? Similar to most of u I have memory loss to the point of ” did I take my pills today” ? When it was only a half hour ago!! I suffer sleepless nights or sleep to much . Very moody at times . The numb fingers toes feet hands all the way up my arms at times!! Just drink plenty of water , how much is plenty because really !! Halo sinations , twitching at times …not fun , not fun at all!!! Take it off the market!!!!

  228. In addition to my comment on june16: My immune system seemed to be affected and I contracted c-diff, complete with bowel incontinence for almost 5 months. I was “let go” from my job as an RN for mentally handicapped adults and when I tried to apply for unemployment was advised that there were plenty of jobs in my field. I am 63 years old and no longer have the energy to do hospital, nursing home or private duty. My only alternative was to take early SS at 62 years old therefore taking the smallest amount offered to me. This drug really set me back physically, emotionally and socially. I am waiting to hear from an attorney.

  229. I was put on Topamax back in June 2007 due to headaches. Well, I started to have major problems. I had a few attacks that caused me to go tthe ER. I couldnt move my left side of my body for about 3 days. It was the most horrible feeling in the world. Well, then back in June 2008 I found out I was pregnant and got off the medication. Well, I lost the baby at 18 weeks; due to no heart beat! When I had the baby, they couldnt tell if it was a boy or a girl. They had to do test to see what it was because she had stopped growing. I had then and still have many emotional problems and major memory loss. It’s scary because I’m only 32 and this is not normal! Í was and still do have Heart palpitations. I had tons of blood work and the Dr.’s could never tell me why I had and have all of these problems. I’m not happy but still relieved that I’m not alone and NOT crazy. I know this medication messed me up!

  230. i was a child at the age of maybe 16-17 years of age and I was taking this medicine for chronic migraine, which then my physician had spoken of me possibly having a condition called BOZLER migraine, which can be so severe that it can cause seizures or possibly fatal and I was a kid at the time, so imagine now, with all the problems that are going on now with the medicine, and i had the insurance to still be able to still afford them, iwould have been taking them, and I’m three kids later in life. Those kids could have possibly been mine. That scares me.

  231. I have been taking Topomax since 2003 for migraines and one seizure. My dosage is 100mg twice daily. Which as of todays date, I am happy to say have all but stopped. I have also been diagnosed with Lupus. I also have experienced some tingling in my hands from time to time as well as short term memory loss which at times I agree can be somewhat disturbing. HOWEVER, I was made aware of all of these side effects before hand from my neurologist. As i’m sure most of you have been as well. Also, they are found in the bag your prescription comes in from the pharmacist, all you have to do is READ it! We all like to blame others. Sometimes we need to start taking responsibilities for our own accountabilities. Since I have been seizure free for over 7 years, I have started weining myself off of the Topomax (with the help of my neurologist of course)

  232. Today I am 47 years old. In 1999 I was hit at work with a tow motor in my lower back, in 2002 I was in a car accident.Through all this I suffered with severe migraines. Believe me when I tell you I know what pain is. I have tried every medication on the market so when it was suggested to use Topamax I did. No one told me of the side affects.One day I was talking to my husband on the phone and got really dizzy. I hung up on him. He rushed home to find me in the bathroom hung over the toilet vomiting and perfusely sweating. I was rushed to the hospital and they did everything possible to try to explain what was happening. They had no idea. I lost my eyesight, was dizzy all the time, had no equilibrium, constantly nauseated, rapid heartbeat, shortness of breath, tingling in my hands and feet and could not concentrate. I went back to my neurologist (who prescribed this medication) for some answers and had what I called “an episode” in his waiting room. He works in the towers above a hospital and I was sent down to the emergency with a letter from him. No one understood what was going on with me. I stopped taking my medication because I noticed after I took the meds the “episodes” occurred. This was four years ago, today I need glasses to read and some days everything is blurry, I still get dizzy and have “episodes”. I have tingling in my hands and feet. I have no real memory of 2007 only bits and pieces. THIS MEDICATION IS DANGEROUS!!!! PLEASE RECONSIDER TAKING TOPAMAX. DON’T GO THROUGH WHAT I HAVE OR SO MANY OTHER PEOPLE HAVE.

  233. I Am Angry With Topamax.
    I am reading all these comments and it anger me. How can they keep selling this? My son was put on topamax after having a seizure. He started to get worse. He had tingling, numbness, lost a lot of weight, dizzy spells, vomiting and his seizure turn to epilepsy. So the Drs. kept increasing the medication. He started with 25 mg then went up to 100 mg. My son with get pain in his heart. Then thing got worst. He started to have seizures every 12 hrs. He told me mom, I think this medicine is making me worst. I told him the Drs. said you must take it and the side effect will go away. My son went to my brothers house. He had a bad seizure. I get a frantic call from my brother. Then a man grab the phone. It was the paramedics. He told me ma m your sons hearth stop. He died in my brothers arms. I am so sorry my son for not listening to you. I miss you. If this medicine killed my son, I will make it a point to get it pulled out.

  234. I have been on Topamax for a number of years and the symptoms are getting worse. Am constantly tired, affecting my work and driving. Suffering more epileptic seizures than ever, speech problems and other issues mentioned in this forum also increasing. I was feeling sick in the stomach and couching up streaks of blood before admitting myself to hospital the other night and taking myself off this poison. It was actually starting to taste how I would imagine Round-Up pesticide would. This is POISON and should be treated as such. Get off it NOW.

  235. My doctor put me on 100mg topiramate 3 weeks ago. I thought I was having problems with my eyes I was seeing double, having stabbing pain in my left eye. I would get headachs, every once in a while every thing would go black. I went to have my eyes checked he said it looked like one of my nerves behind my eye was swollen. That I needed to get to a Nero because that means there is swelling on the brain. It took a month mean while I am gettin worse Had to see my famliy doctor who gave me something for migrains and pain. There were times I could not even spell my own name. Finally after about 6 week I got in he ordered a MRI, a MRA, and a spinal tap. he said there could be a tumor, a blood clot, or to much fluid. But in the mean time he want me to take 500mg Acetazolamide twice a day just in case it is to much fluid. Will in 2 weeks time I had a 3 test done felt wose then before felt like I was going to die missed work a couple of nights because I felt so bad and I was afraid of just dropping dead. The MRA and MRI both came up clean have a aneurysm in my right eye, spinal tap pressure levels were low. So guess the Acetazolamide was doing more harm then good. I still don’t really know what is going on feel a lot better with the Topiramate Alot of the pain is gone. I don’t know what is the side effects and what is happening because of my brain. But my doctor did tell me to read them and watch them and I have a appt. with him Friday to talk to him about the side effects. To decide if this is something that works for my body or is there something better.

  236. Thank you for this weblog. Thats all I can say. You most undoubtedly have created this weblog into something thats eye opening and critical. You clearly know so a lot about the subject, youve covered so numerous bases. Excellent stuff from this part of the internet. Once again, thank you for this weblog.

  237. Thank Goodness I didn’t experience some of the side effects that the others have had from taking the Topomax. I too was on a daily 100×2 per day regime for several years. It wasn’t until November 2010 when I was admitted to the local hospital ER with kidney stones that there was a possibility that the medicine that was prescibed by my neurologist for migraines would have done this to me. However just this past week I had to have a surgical procedure to remove yet another kidney stone- I knew the symptoms from my hospital visit in November, had stayed well within any diet restrictions that the urologist had given to me- because I didn’t want to go through that pain ever again. Unfortunately Sep 5th at 5:30 in the am I am headed back to the local hospital for what I had a feeling was going to be diagnosed- Kidney stones in the right kidney. One was in a location that the urologist told me that he felt I could pass it, however there was a second one that would be a surprise if I was able to pass that one. The pain and pressure was like having a vice on your side – constant pressure/constant pain no relief. Normally two percocets would have knocked anyone out (especially me), I did this for four days until I could have the surgery. Again when I met yet another urologist he too mentioned about Topomax and the connection with kidney stones. After having the surgery I am still sore, but nothing like the pain that I was in- I could not eat-I was constantly vomitting, even the anti nausea meds were not helping. I was on a liquid diet as well pain meds for four days. The reason I am speking out is that others should know about the seriousness of the kidney stones, I had just renewed a prescription that cost me a couple hundred dollars-I will never take another topomax ever again. If I should get a migraine I will deal with it as it happens- no more preventive medications for me. Look what is has cost me- two ER visits (which we know are not cheap) ,visits to the urologist for follow up, and now a surgical procedure.

  238. i have been suffering with migraines for years. doctor put me on topamax and have been on the medication for a long time not nowing about all the side effects. i recently had a cat-scan done and the doctor saw i had two spots on the brain. couldnt really explain why only that it could be from some medication i was taken????

  239. i started taking Topromax in April 2011. The dosage was slowly increased untill i was taking 100mg a day. I June of 2011 my nuerologist increased the ammount to 150 mg dailly. I phoned her in Aug to let her know I was experiencing unusual bruising and hair loss along with the tingling, memory loss,and language difficulties I was already experiencing since starting the drug. She weaned me off slowly and two days ago was my last dose. After reading these testimonies i realize that the eye fatigue and strain I feel is probably from the drug. I have also been having lower right side back pain and will now call my PCP to have my kidneys checked. I wish I would have known all the possible side effects other than the weight loss, taste change, appetite loss and tingling hands, feet tongue face that I was told from the start were just a temporary side effects. I had a terrible time struggling with trying to come up with words and my memory was almost non existant. I am happy that my language skills have improved since starting to wean off the medication. Hopefully the bruising, hair loss and constant eye strain will improve, but after reading the testimonials I am afraid.

  240. After My neurosurgery I tried various meds until being put on Topamax. Immediately, I began experiencing periods of extreme spaciness. The worst episode was when I was driving home from a friend’s house about 150 miles from home. That was at 4:00 p.m. Then I sort of remember exiting about halfway home and the next thing I remember was seeing a freeway sign about 200 miles north from where I started. At that point, I turned back around to head home now being about 300 miles from where I started and I finally arrived home about 6 hrs. later; about 4.5 longer than what it should take. I went the clinic right after I got in town. They ruled out a seizure but decided to admit me right away anyway. My neuro stopped it cold turkey. They tethered me and put on a video monitor. Shortly thereafter, I began to wander aimlessly around the room for about 30 minutes. They determined that I was suffering from Topamax toxicity.

  241. hello.i initially was admitted into the hospital for syncope. for 2 weeks prior to this i had headaches and dizziness. the day i passed out my headaches were worse accompanied by nausea. the next day after being admitted, i had an mri and mra. i am a person who is highly sensitivew to meds and am allergic to alot of them. when they injected the contrast, i went into anaphylactic shock and stopped breathing. i was coded and intubated because i no longer was breathing. while in icu, the neurologist started me on topamax. at that time i didnt know how much i was getting. i was extubated and the dr said that it would help my headaches. i spent 3 days in icu and started getting tingly sensations in my feet and hands. i was told it was normal. but my headaches had gotten worse. i told the dr and he said it took time to go away. i went then to a regular med surg floor and realized i was having weakness on the left side of my body and my dizziness was worse. i couldnt even walk 15 feet without feeling i was going to pass out. my heart had all kinds of arrythmias buit they said it was from my pots. they then admitted me to the rehab unit to get stronger. here at rehab my symptoms got worse. im only 24 and it was as if i had a stroke. by now it has been 4 days on topamax. day by day it was so hard to stay awake. i had numbiong in my rt side of my face especially w exercise. my therapies drained me. i couldnt feel my whole left side and was not able to walk anymore. after 1 week in rehab i wasnt even able to brush my teeth without getting out of breath. i was seen by a psychiatrist for suicidal thoughts which ive never had before. then one day i refused to take the medicine. i questioned the drs. they said it was normal side effects and they thought i had chronic conditions. all tests have come back normal. after the 2nd day of being off of topamax i started feeling better. no more memory fogging or blank staring. so the dr dcd it. i started having tremors on the 3rd day of being off of it. its been a week of of it and day by day i am getting better. m,y tremors are less and i am slowly regaining my strength. my left side is still weak but getting better. i am now 3 weeks here and will be going home w a walker, bedside commode and wheelchair. this medicine is horrible. oh and i found out the neuro started me on 100mg 2 times daily. its no wonder i felt like scared i will hav permanent damage.the recommended starting dose is 25mg.

  242. Has anyone had terrible teeth trouble since taking Topamax? I have had every tooth in my head worked on or lost since taking this med. My dentist has said he has never seen anyones teeth deteriorate as fast as mine have. He said it had to be the Topamax since I havent had any other problems before. Just wondering if anyone else has had as bad of teeth since taking this drug.

  243. Since I have been on TOPAMAX I have Lost teeth- some have broken and a couple have fallen out – I have excellent hygiene so topamax is the Only answer, I was diagnosed with osteoporosis since being on this, but never a mention that Topamax could be the cause, it’s simply logical. Severe loss of memory – can’t remember ppl, places, things, words, etc – , kidney stones, weight loss, hair loss, chronic pain, dizziness (vertigo ALL the time!), loss of overall strength and mobility, diarrhea, blacking out… Not sure if all of this has made my attitude change or Topamax itself is the culprit. I would be willing to bet that it’s a combination. My family/friends have noticed that I’m not the same ‘care-free’ person I used to be. I can’t remember? My eyesight gets worse by the day. With all the damage this drug has caused me, I have chosen not to have children as I can’t imagine harming innocence.

    The only lawsuit to date, that i am aware of, is in regards to birth defects. So I urged them to file for all the patients (us) that have suffered while on this ‘miracle drug’…. I’m sure we’re all gumming it – toothless, blind, blacking out and writhing in pain. On the BRIGHT side, we’re bean poles that can’t remember a blasted thing so we’re easy to spot!!! :P Keep the faith everyone!

  244. Cognitive/Neuropsychiatric Adverse Events Adverse events most often associated with the use of TOPAMAX® were related to the central nervous system and were observed in both the epilepsy and migraine populations.

    Cognitive Related Dysfunction (e.g. confusion, psychomotor slowing, difficulty with concentration and attention, difficulty with memory, speech, or language problems, particularly word finding difficulties).

    Psychiatric Behavioral Disturbances (e.g. depression or mood problems)

    Somnolence and Fatigue (e.g. drowsiness, sleepy, tired)

    Kidney Stones: An explanation for the association of TOPAMAX® and kidney stones may lie in the fact that topiramate is a carbonic anhydrase inhibitor.

    FDA Instructions for Doctors:
    Patients should be warned about the potential for somnolence, dizziness, confusion, and difficulty concentrating and advised not to drive or operate machinery.

    Reporting Topamax Side Effects:
    You may report side effects to the FDA at or 1-800-FDA-1088 (1-800-332-1088).

    Side Effects and Warning From Topamax’s FDA Required Prescribing Information
    TOPAMAX® is approved for migraine prevention in adults only.

    FDA Reported Side Effects

    Numbness and tingling
    This is known as paresthesia and is the most common side effect of TOPAMAX. People have described this as numbness or “pins and needles,” most often in the arms or legs.

    Some people may feel tired while taking TOPAMAX. More people reported fatigue during the early stage of treatment.

    Weight loss
    Some people may have weight loss while taking TOPAMAX. This seems to be related to the dose of TOPAMAX taken.

    Difficulty with concentration attention and difficulty with memory
    TOPAMAX may make it hard to concentrate. Some people may have memory recall issues. This reaction varies, but people have described it as “difficulty finding the right word” or “losing my train of thought.”

    Other common TOPAMAX side effects are loss of appetite, nausea, diarrhea, and taste change.

    Warnings and Precautions

    TOPAMAX® may cause eye problems. Serious eye problems include: sudden decrease in vision with or without eye pain and redness; blockage of fluid in the eye causing increased pressure in the eye (secondary angle closure glaucoma). These eye problems can lead to permanent loss of vision if not treated. You should call your healthcare professional right away if you have any new eye symptoms.

    TOPAMAX® may cause decreased sweating and increased body temperature (fever). People, especially children, should be watched for signs of decreased sweating and fever, especially in hot temperatures. Some people may need to be hospitalized for this condition.

    TOPAMAX® may cause suicidal thoughts or actions. Pay attention to any changes and call your doctor right away if you have any of these symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying, attempts to commit suicide, new or worse depression, new or worse anxiety, feeling agitated or restless, panic attacks, trouble sleeping (insomnia), new or worse irritability, acting aggressive, being angry or violent, acting on dangerous impulses, an extreme increase in activity and talking (mania), or other unusual changes in behavior or mood.

    Serious risks associated with TOPAMAX® include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis). Symptoms could include hyperventilation (rapid, deep breathing), tiredness, loss of appetite, irregular heartbeat, or changes in the level of alertness. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease.

    TOPAMAX® may affect how you think, and cause confusion, problems with concentration, attention, memory, or speech, depression or mood problems, tiredness, and sleepiness.

    Do not stop taking TOPAMAX® without first talking to your doctor. Stopping TOPAMAX® suddenly can cause serious problems.

    TOPAMAX® may cause high blood ammonia levels. High ammonia in the blood can affect your mental activities, slow your alertness, make you feel tired, or cause vomiting.

    Adverse Reactions

    The most common side effects of TOPAMAX® include: tingling in arms and legs, loss of appetite, nausea, taste change, diarrhea, weight loss, nervousness, and upper respiratory tract infection.

  245. Topamax has worked wonders for me and has enabled me to function, drive, have children, be married, and live a “normal” life, or whatever normal is. When I was first diagnosed with epilepsy at the age of 13 (I am now 34) I was put on Dilantion..I was pretty much a zombie, grades slipped, no interest in they switched me to Depakote…bigger mistake!!! Even worse side effects, I started acting out, had no desire to do anything productive…but once I turned 18 I had enough, my new neouroligist put me on Topamax and life changed. I enrolled in college and now I have a wonderful life. The only negative effects I have is the numbness from time to time and also the memory loss really sucks especially when you have kiddos.

  246. I’ve been on Topamax since 2000 for migraines. It use to be that if I was out in the sun, even with sunglasses, I would immediately get a migraine. My neurologist (the best in my state) had tried all of the latest drugs. They seemed to work for everyone else I knew who took them, but they didn’t even touch my migraines. I was finally put on Topamax and Neurontin. About a week after I started this regimen I left work one day and got outside and realized I’d forgotten my sunglasses. Then I realized that I was standing there, in very bright sunlight and I wasn’t squinting. I looked up towards the sun and still, no squinting and no headache. I was thrilled and called my doctor to tell her.

    My doctor had explained ALL of the side effects and asked me if I wanted to try. I also read on the label, which stated all of them. So many of the ones that people have mentioned here, I have but the only one that really bothers me, is the cognitive impairment. People who know me will help me out and we laugh about it. When I’m around people who don’t know me, and I lose my thought or my speech is a little slurred and I feel like I’ve just made a fool of myself, I usually tell them that I’m on medication which causes this.

    I’ve gotten use to the side effects except for the vision stuff, but I’m 55 now and after 40 your vision starts to change anyway.

    I’m sorry for all of the people who weren’t told about the side effects when they started taking it. You can go to the Mayo Clinic website and it will list them all. Also, if you read the list of side effects on so many medications, most of these side effects are listed, including, “May cause thoughts of suicide.” Even the commercials for a lot of the drugs say that. If you are really feeling suicidal, it could be something else. I am also Bipolar and some of the posts here indicate that there are other problems than the Topamax. Just sayin’.

    ps Excuse any typos as it’s probably the Topamax.

  247. I’ve had a long list of long term damage from this drug, but have remained on it. My Neurologist has always insisted that my issues were genetic and that none of them could have been connected to the meds that I was on and certainly not Topamax. After reading more of the news coming out and what more of the patients have been saying I’m less trusting of what my doctors have to say. If anyone organizes a law suit I have a bunch that I’d like to say to this company. Please contact me,

  248. My only complaint about topamax is the kidney stones and hair loss. Other than that it was a miracle drug for me. Stopped my migraines, in fact they are in complete remission now since I started taking it, even though I stopped taking it two years ago. I was 115lbs overweight and lost it all in a year with the help of topamax, and it helped my tremor. I stopped taking it because of the kidney stones and because I felt it was damaging my kidneys…but it was good for a while.

  249. I was on Topomax for one year for severe migraines. I started having my ankle give out on me. I tapered off to get pregnant. After my son was born I needed surgery for bone death of the talus. I have sever aritus in the other ankle. Joint pain. Before takng Topomax I was active playing sports felt like a 20 yr old. Now I sometimes use a cane to walk. I am only 32 yrs old. I just read about metobolic acidosis in Topomax. The timeline adds up exactly!!! Can you please contact me.

  250. When I first started taking this drug I loved it. I have epilepsy and this drug gave me 100% seizure control. Initially it made me loose TOO MUCH weight. BUT, after I had my first baby, I didnt have to go on a diet to loose the baby weight. I loved this drug. I could drive, work and all sorts of stuff because its like my seizures had disappeared. Sure I had the tingling of the hands and feet but it would only last minutes, so I could deal.
    Over a period of 9 years I have been on this drug in high dosages. This drug has f’d up my memory sooo bad! I donot remember anything from my past and I can barely remember how to get around my own neighborhood! This drug is very dangerous when taken in high dosages. My housband would talk to me or we may be watching a movie and I would be so sleepy that I couldnt keep my eyes open. This drug has also affected my sex life. My sex drive went away after taking this medicine. I still take this medicine because it is the only drug that control my type of seizure. My other 3 options are: have brain surgery or try another drug that could possibly give me seizures. I was also asked to participate in a study where they are trying out a alzhemers medicine on epilepsy patients with memory problems. I dont want to do any of these BUT I have to get off of topamax! Putting this one in God’s hands. Please pray for me. I want to be in my right mind within the next 10 years. I am only 32

  251. O yea, I wanted to add that, my neuro told me on my last visit to take a 1000 vitamin D pill everyday because topamax does something to your bone density, weakens your bones or something like that. I was like OMG! Another side effect. This drug is very dangerous and the risks definitely outweigh the benefits. I had 2 healthy babies on topamax, THANKS TO GOD. After reading all of the dangers, Im definitely not having anymore. My nero/gyn sent me to a perinatal place that first put me in counceling to tell me what could possibly happen to the baby because of my meds. They gave me 2D/3D ultrasounds there so that they could better see and detect any malformations that could occur.

  252. I suffered from migraines from the time I was thirteen years old, and they plagued me for almost nine years. With these migraines, I would get strange spells where I would sort of space out and just feel like my body was receiving shocks from the inside out. These got worse, and so did the migraines, until I ended up having a gran mal seizure a month after I turned twenty one. I ended up in the hospital with another and was prescribed topamax. I was relieved that finally, all these horrible symptoms would go away! But compared with the hell topamax brought upon me, they were a minor inconvenience.

    I was on 100 mg’s twice a day. I was losing my memory, dry heaving, having difficulty concentrating, losing my hair, getting tingling in all of my limbs… I was born totally blind, so vision changes weren’t a concern for me. But I read braille. Not possible with numb fingers! I was growing agitated, depressed, and several times thought of killing myself. I almost went through with it one time and have my best friend and my boyfriend to thank for saving my life. I lost about forty pounds, too and clothes I wore in my freshman year of high school were too big for me. I was hungry all the time, yet ironically, the very thought of food made me ill. Parts of that time period are hazy to me, like part of my memory was rubbed out. I could not sleep, I got shaky, and with all this, my parents wouldn’t believe me… I felt so alone! Oh and guess what? My seizures came back! The doc’s plan? Increase the dose of this poison I was on. I wasn’t going to have it! I was in the middle of college, this stuff was messing everything up, and I wanted off. The doc wouldn’t take me off. Instead she wanted to prescribe more medications to handle the symptoms I was experiencing. She had the audacity to tell me it was all in my mind!

    In order to get off of this stuff, I had to threaten her. I told her I would find another doctor and she would lose my business. I was promptly weened off and put on Lamictal, which has worked wonders for me. People, if you are taking this stuff, get off! Do whatever you must, but get off! Because it could ruin your life… it almost ruined mine. I would rather have dealt with anything but this crap! It needs to be taken off the market, and soon! And if there is an active petition for this anywhere, let me know, because I, and the people I love, will happily slap our names on it!

  253. I was only on topiramate for three days…worst three days of my life.I was put on topiramate b/c of migraines, 3-4 per week. I was told that there might be some tingling in hands and feet and slight mental confusion, to drink lots of water b/c of possibility of kidney stones. That’s it. Within two days I had the worst bilateral headache of my life, painful and red swollen eyes, and it felt as though someone had jabbed a thick rod from mid-back up through my neck and into my head. I lost the use of my right hand and my right foot would not set flat onto the floor, and I couldn’t talk, only yell simple sentences. It was as though the verbal connection in my brain had just snapped. I wanted to be dead, and right now.

    When I called the doc’s office I was told to go to the emergency room not because of the other symptoms, but because I was ‘suicidal’ — The words I used were, “I want to be dead,” not that I wanted to kill myself. When I read the phone report a few days later, it was written as though what I was saying was not to be believed, not that I’d had a reaction to the medication. The information I asked to be relayed to the doctor had not been relayed.

    I stopped taking the medication (that much the doc’s office agreed with.) My PCP scolded me for my attitude (two days later and still wanting to be dead, major headache, depression, etc.) It took two weeks to begin to feel normal again. Interestingly enough — I didn’t have a migraine for three weeks. I am not going to risk mania and suicide even to get rid of migraines. As a writer, artist, and public speaker I cannot risk loss of my hands, word retrieval, or speech. Which makes me wonder why my doc thought that paresthesia would be okay, even for a few months. There is a difference (to those of you who think that knowing about the symptoms is all one needs to know) between tingling fingers to someone who does one kind of work, and loss of use of one’s hands in someone that does tactile work. (Bet a neurosurgeon wouldn’t risk that, right?) A living is a living.

    I read all of the comments here and it’s interesting to note that the people who fared best oveall were not people with seizures or migraines. They also seem to be very judgmental (or is that unrecognized cognitive impairment also?) And that’s the problem that is posed for anyone who takes a medication that can cause memory loss and/or confusion, depression, etc. People whose cognition is severly affected by this or any medication very often is not aware of what is happening or how to describe it until it is too late. Because this medication also can interfere with verbal response, effective communication can be next to impossible, and with the surge in immediate dispensing of SSRI’s when anyone expresses that they feel apathy/depression, the patient is often patronized – damned for being mentally unbalanced when the drug may be causing that. (So, Jacob, I have experienced what you have in that regard –in some circles the treatment you got is considered emotional abuse.) Even if someone were mentally ill, that is NO reason to not entertain what they are saying.

    It’s nice to say, too, to take charge of one’s health and medical care, but some people are very limited as to their choices, and in some places, medical appoitnments with neurologists are difficult to get. In my area, the neuros take zero self-referrals and the docs play for about 3-5 years with their own ideas before referring — that’s the way it is.

  254. I was given the topomax for two years,
    I had many seizures, headaches,confusion, unable to work for that amount of time.
    My emotions went down hill, depression etc.
    I did not leave my house do to fear of another seizure, no walks outside etc.
    For two years my family Dr and Neurologist fought about what was wrong with me,til finally the Neuro, said it was side affects do to the topomax I was taken.

  255. I think Topamax should not be allowed as an off label drug. Recently I took my son 13 years old to an accupuncturist who also happens to be a doctor for a weight loss programme. The doctor said in conjunction with the accupuncture my son would have to take Topamax, Lasix, Recreate and Oxy Elite. Seeing that the doctor was treating hundreds of people I thought the tablets must be okay (and after all he was a doctor). To cut a long story short my son became very ill sweating, shaking, he suffered memory loss, he was frightened to sleep because he thought he was going to die. Even though I told the doctor of the side effects he insisted we continued the medication and told us the symptoms were from something else.I believed him after all our aim was to lose weight and “you trust your doctor”!Finally I consulted our pediatrician who told me we have to stop the medication but gradually over a period of time as stopping immediately could be dangerous. Thank goodness my son is okay now._I feel like an idiot for allowing him to take this medication in the first place but as I said “you trust your doctor” . Since then a lot of people have come forward complaining about this doctor and the side effects they were having because of the medication. Including car accidents, suicidal thoughts, memory loss. This doctor gave Topamax to all his patients up to 800mg daily. So incase there are unethical doctors around poisoning vunerable people for the love of money, Being allowed to prescribe Topamax as an “off label” drug is like having a licence to kill.

  256. my husband had a carotid artery dissection and was on topomax for years … after being on the medication for about 6 years — it literally drove him to be a different person …. he had mood swings, began getting migraines, had memory loss, weight loss, depression …. this drug is HORRID!

  257. I have been taking topamax for about 12 years. On January 5, 2012 a kidney stone was surgically removed. There is also other damage to my kidneys which would be hard to because I also have been taking lithium since 1976. Lithium has never caused me the problems that topamax has. I am angry. Now the psychiatrist wants me to stay on it until she reviews the medical records but that is over my dead body. So now I no medication for my bipolar condition because I won’t take the chance of further ruining my kidneys. The medical doctors said quit taking topamax because that medication was the culprit.

  258. There is not enough Proof YET to support any wrong doing and the studies don’t support the multiple claims of harm done by the drug.
    I came to this site because after a year of Topamax my biggest concern has been two things that I have noticed. #1 My vision has gradually begun to deteriorate to such a degree I need glasses all the time. #2 My memory/problem solving has been affected to such a degree I am alarmed.
    As for the vision, at first I thought it was my age…43 Then I thought it was my diet…I started juicing and drinking a lot of carrot juice. I have an inversion table. When I would invert I noticed it felt like my head was about to explode behind my eyes but I thought again, it was my age and I needed to watch my bloodpressure. My Neurologist told me the only side effect I needed to worry about was kidney stones. I took the drug for moderate intention tremor and it did help. The occasionally migraine was non existent. Sure I had tingling in my feet, soda tasted weird and I dropped weight from 145 to 130 but I shook less. Shaking less was better than the brain surgery for a deep brain stimulator implant. My body has already rejected three implants with severe infections in less important areas than my brain.
    I went back to the neurologist. He wanted to titrate me up to 200 mg but I told him the drug severely affected my depression the further up in dose I went. He didnt listen to me but I knew I better watch the depression so against his advice I stayed on 100 mg. I kept my dose at 50 mg at breakfast and 50mg at lunch so I could work through the day without shaking so much.
    The vision issue has gotten progressively worse. Concentrating at work has been hard and getting harder and memory/problem solving is not what it should be. I thought it was because I was getting older. I was diagnosed with ADD so I thought it was the ADD getting the better of me. Finally, I was so alarmed I decided to do a search on the internet of my medicines to see what in the world could be causing the vision and memory problems. Nothing came up and I had been on my other medicines for years…The only thing that has changed in the last year along with my vision and memory is that I have been on Topamax. I am a health care professional. I know that side effects are rare. I know you can read a list of them and then think…yeah, I need to watch out for that and before you know it there is a psychosomatic problem that was there just by suggestion. I didn’t know about the vision or memory issues but now that more people are taking the drug there has got to be more proof of the damage this drug is causing. I was fine with the tingling, soda’s tasting bad, weight loss…just annoying. However, I don’t know if my vision or memory will ever be the same. If this drug causes this type of damage then there should be studies to support it. I can’t find any at this time and there is no class action lawsuit for this drug for the reasons people have stated. I have an appointment with the neurologist and my general healthcare practitioner.

  259. I am on 50mgs.of Topamax,25 in the morning&25 at night.I was prescribed topamax for stress related siezures.I did have a few side effects but they are gone.This medicine has worked wonders for me&I wouldn’t want it taken off the market,I haven’t had a siezure since I’ve been on this medicine.

  260. Even though Topamax has worked wonders for me,I do have a great deal of sympathy for those who hav!e had problems with it

  261. I don’t take the exact version of Topamax, I take the generic version Topiramate and it is 100 MG each night. I had been suffering from killer headaches all the time and went in for an MRI. The Doc gave me the results and I have a slight slope on the cerebellum which is a small case of Chiari Malformation, but not enough to result in surgery. I have no blockage of fluid so there is no harm of the slope. It could have just been a birth defect. I will be going back in February to see if any change has occurred in the slope. When going up I played physical sports and got pretty dinged up in hockey never got checked for concussions. I use to complain alot about small headaches and just took advil, I also had a pretty decent car accident and hit the head off the steering wheel and got cut open, but the doc never have me a concussion test so I do not know if the head aches or migraines today are caused from the slope from the chiari malformation or some form of a post concussion type syndrome effect. They say after one year of post concussion if it does not go away it will just last forever with lingering effects. Sorry for the long story, but the Topirmate has been a savior for me and I also have to take Meclizine for my motion sickness that I get which makes me think that most of my headaches could have been caused from a post concussion since they where like a nausea type feeling. As far as the blurred vision goes, I did get a blurred vision, but I thought it was because of my old motion sickness patch I was taking. I have 20/20 vision and have been taking the meds for a year. As soon as I stopped taking the motion sickness patch behind my ear the vision problems went away. I have not lost any weight, as a matter of fact I think I am gaining weight because I work on the road a lot as a service technician and have no problems with this pill. I have really not had a set back with this med and its been okay for me since taking it. The only time I really get an extremely bad headache is if I am sick which is rare.

  262. I think this medication needs to be pulled from the market, it has serious side effects that people with migraines are not told about.

  263. I need help…this medication has destroyed my life.

  264. My 18 year old daughter was given Topamax for migraines. She was on the medication for (25mg) 1 week and then 50mg for the next week. Her hands started to shake and the doctor said to step back to 25mg. The third week she started to get diahrrea and loss of appetite. I immediately called doctor and told her that she was not taking the drug any longer!!! It has been two weeks since stopping the drug and still waiting for appetite to return to normal. Please do not take this drug without knowing all the side effects FIRST!

  265. Topamax has been a LIFE-SAVER for me. It has pharmaceutically “fixed” my suffering of painful, debillatating, chronic cluster migraines that lasted for 30 days or longer.

    Yes, I do miss words when I speak and type. Sometimes, I cannot remember where I left my car keys. I have to make sure I drink enough water daily. It’s ALL worth it to me.

    Oh….and I have not lost a pound – the one side-effect I WISH I had!

    I’m so sorry for all of you who have had such a negative experience. That’s not fair nor do you deserve to suffer by something your taking to provide you with solace.

    But, for me, it’s been a very positive, life saving drug.

  266. I took Topamax in 2006-2007 for 10 months and throughout that time my migraines stopped. The longer I was on this medication the more I noticed a lot of changes in myself such as confusion, loss for words, stuttering, short term memory loss, horrible trouble concentration, numbness in fingers and arms, hair loss, my eye sight had changed and a strong pressure behind my eyes. My Doctor told me that she was concerned about the pressure behind my eyes and took me off of Topamax. She said that Topamax could cause glaucoma in some patients. I feel that this information was 10 months too late and that I would have liked to been told that before I even took the first pill. In the past 5 years, I have not had as many migraines however, I still have most of these side effects. The concentration and confusion is the hardest to live with. I was taking college courses during this time and I noticed a huge change in my study habits, tests, and ability to learn. Recently I took a few more classes and realized I had the same problems. It would be different if my career choice was not working with the public. I went to school for xray and mammography, this is not a job where I can fall short, be forgetful, or not be able to explain the exams to my patients because I can’t get my thoughts together. In the evening when I’m tired, my speech gets worse. I find myself giving up on any conversations because everything I say gets jumbled up as it comes out of my mouth. When I’m trying to say one word something else comes out and it becomes very frustrating not only for me but for the people that I’m speaking to. In a house where I lived for 12 years, I would open a door to go into the bathroom but open up the closet door across from the bathroom instead.
    These are just a few examples of the many things that I live with everyday. If I had known that I would have all of these side effects and that they would stay with me forever, I would have never taken it.

  267. I’ve taken Topamax for migraines since it came onto the market. It has been the only effective medication. My only issue has been quite a few kidney stones.

  268. I have been on topamx for 2 almost 3 years now and I am getting tottally scared about the side effects I am having. Let me first start out by saying I thought this drug was a miricle drug because for years and years I have suffered from migraines and tried every drug and none of them worked for me so when I came across Topamax I was so excited it took awhile for it to work I had to keep raising the dose until I am now steady at 200mg a day. I had severe side effects well one that i liked lost 30lbs but the ones that was not so pleasent is the memory loss words jumbling and mumbling together forgeting where I was in a conversation. My husband actually asked me if I was on drugs illegal drugs which I have never touched inmy life and was very offending to me.. I was on the prescribed drug Topamax. I had the numbing and tingling in my hands and feet that yes eventually went away after months of taking topamax but I want having a migraine. Through all of this I tried to stay positive with all the negative side effects and body changing things that were happeningto me hair loss was another one my hair would come out in hand fulls. It has now stabilized the side effects seemed to mellow (tingling,memory loss the smaller stuff) my aches in all my joints and wrists keep getting worse I can barely even walk some days I am 32 years old.Reading all these post I feel I have found the cause of all my problems I am going to stop Topamax and deal with my Migraines before I can not walk any more. I am going to have tests done on my muscles and bone density to see what the damage is users BEWARE! Now to begin getting off topamax wish me luck..

  269. my wife was given topamax for back pain.she had memory loss could not concentrate trouble walking stuttered and other problems.she was at work (in the medical field).they took her to a conselor they should have taken her to the hospital.she almost lost her job while on the medication she leftme.i was so despondent i tryed to commet suicide.i lost the dog (who was 12yrs.old)that used to be my work partner.thank god she is off the topamax now.she still has some side effects but we are back together.despite losing our home because of all that happened.

  270. I went off Topamax, which I was taking for depression along with Wellbutrin XL. I had been on the Wellbutrin for many years and continue it and have never had a problem with it so I know my symptoms aren’t from that. I started gettting carsick about 1-2 weeks after stopping Topamax and I was the one driving! I had to pull over and get sick and then almost passed out. I knew I couldn’t drive and by the time my husband and son came to pick me up I was having some numbness in on my right side. My brother had just had a stroke less than a year ago and I was so worried this was what was happening. My husband took me to the ER. They kept me overnite and did every test you can imagina, CT, EKG, MRI, MRA , and a whole list of bloodwork. They could’nt find a thing. They ended up diagnosing it as a complex migraine. I now know after going to the ear, nose , and throat doc, that you don’t need a headache to get a migraine. He diagnosed me with vertigo. When I asked him if the Topamax could’ve caused this he said, “yes”. I already knew the hairloss I suffered was from it after reading other online talk about Topamax and now reading all of this(which I couldn’t believe the number of responses!) I know now why I drove threw a redlight and then went to the store and left my car running and went to go in . Luckily my daughter was with me and asking what was wrong with me. My memory got increasingly worse. I would stop midsentence and forget what I was saying and couldn’t think of the dumbest words. Now after being off of it for about a month and a half I am getting these dizzy spells and not always the headache that goes along with the migraine. Jus the not being able to focus. My hands get incredibly shakey and I overall am not with it. I don’t feel like myself anymore and after readign this I have cried all morning. I just started a new job and yesterday was the worst. First I babbled on the phone trying to take an appointment. My boss was watching me and I know he thinks I’m a complete idiot. I know I keep asking the same questions repeatedly and I can’t seem to grasp what people say to me . It’s like the information going into my brain is delayed so I’m concentrating so hard to hear them and then I miss parts and have to ask them what they said again, not just my boss , everyone. It’s a dog grooming business and there are at times 9-10 people working a small area. It’s extremely loud with the dryers and I broke out in a terrible sweat , and had the worst anxiety. My hands were shaking so badly I couldn’t hardly write down an appt. Someone was watching that too. I know as soon as I left everyone was probably talking about me. I know I would. I just started a week ago and I’m having such ahard time I want to quit. I don’t think it’s safe for the dogs and it just seems to get wore everyday that I’m there and I’ve only really worked 6 days in the 2 weeks. I feel awful because the managers are very nice and I’m so embarrassed to call up and quit but I don’t see how I can do it. The feeling of dread everytime I think about it is overwhelming. I also have terrible insomnia, worse although I had it on Topamax, since I’ve gone off. I called my doctors office today and asked if they could possibly write a note or letter . Anything to explain to them that this isn’t something I’m making up. I will ask them if they noticed that I was “off”. I’m just dreading the phone call. I can imagine how much I’ll stammer and forget to say. I honestly can’t believe this drug is still out there. For those of you who have had good experiences great. Mind you I was on it for a few weeks before I started having symptoms and when I lost a third of my hair in a 2 week spand I freaked ! What I’m seeing here though , the people with devastating and long lasting if not forever effects , far outweigh the positive responses. For those of you who lost someone from Topamax I am so terribly sorry for your loss. It seems like with all of this evidence (look at far back these comments started!) they would stop making it. I’m all for a lawsuit. Just waiting to hear about it.

  271. I started taking topamax in December 2011 bc of migraines & seizures. I started out w/50mg twice daily. This was an added medication to the long list of 6 others I was taking. I have Chiari 1 Malformation, seizures & Fibromyalgia.. Before topamax all my medications was fine no problems. Within 3 weeks if starting topamax I could no longer speak a sentence, could barely walk, vision jumped and could no longer remember how to spell simple words. I went from a person who missed maybe 3 days a year from work from being sick to being off work for a month & a half. My doctor would not admit to this medication being the problem so I contacted my pharmacy & told me there was a reaction & stop taking it immediately. I stopped taking it & several other of my meds that could possibly react with it a month ago. I’m still not back to work, still studder, problems walking some days & still shake. So now tomorrow I go for a brain & spine MRI because doctor now thinks its something else. But since I’ve stopped the meds I’ve slowly started to get better. I mean somewhat healthy one minute to someone who appears to have a stroke the next. Come on I took those other meds far to long & no problems. Take topamax & within 3 weeks I appear to have a stroke. Not saying for sure but will now more tomorrow.

  272. I took Topamax for aproximately 3-4 months. The side effects were horrible! I have been off the medication for years, but still suffer memory loss, trouble with concentration, vision blurriness. Prior to taking Topamax, I never had these issues. I work for a university and literally have to write down anything to remember it. Somedays, I think my husband thinks that I am lying about not remembering conversations we have. I have trouble remembering the lyrics to a song on the radio, wat words to use in constructing a sentence and even remembering someone’s name. There are times when I will just break down and cry in frustration. It is depressing to know that you are not the same intelligent, vibrant young woman you were before taking Topamax. I am 32 years old with the memory and attention span of a 3 yr old. It’s incredibly frustrating. I am so glad to have found this page! Thank you all for sharing your stories. It is helpful for me to know that I’m not crazy and that I’m not just making this all up. I sncerely hope that we can all overcome the damage this horribly dangerous drug has done to us.

  273. I’m sorry for the people that have had such awful experiences with Topamax (topirimate), but you can’t put all the blame on the drug maker, and/or the doctor.

    When you were prescribed Topamax did you fill your rx at a pharmacy? Sure you did. Yes, some of you were given samples, to slowly titrate you up to your targeted therapeutic dose. In that sample pack would be a list of the most serious side effects, and what to do in regards to each side effect (ex: parastethesis, blurred vision, heart burn, etc.). Did you read the paperwork with the samples?

    Eventually, everyone would get their prescription filled at a pharmacy. When you picked up that rx, you are asked if the medication you’re picking up IS NEW, or if you have any QUESTIONS for the PHARMACIST. You sure as heck better have said yes. That’s when the Pharmacist tells you allll about the side effects, especially the increase in IOP, AND suicidal thoughts. The Pharmacist is the one who knows all about medications, not the doctor.
    It is your responsibility to educate yourself about the medications you put in your body. When you pick up your medications, if it’s new, you sign a document stating you’ve been offered counseling and understand this is a new drug; you will also most likely sign something in regards to HIPPA.
    If you get your meds through a mailorder pharmacy, depending on the pharmacy, you will either get a drug printout for each and every drug you get, regardless if it’s new or not, or you’ll get a phone call, in addition to the printout.

    It irritates me when people say “the doctor didn’t tell me all the side effects”. It’s not your doctors job to know allll the side effects, the drug interactions, dosage forms, of a drug. It’s the Pharmacist’s, but it’s your responsibility to educate yourself about a drug before putting it in your body. No one can do that for you, except under very restricted circumstances and I don’t think we are talking about those.

    I just have to add, in regards to vision disturbances, vision changes, and vision changes. THESE ARE ALL SERIOUS SIDE EFFECTS AND YOU SHOULD CONSULT YOUR PHARMACIST IMMEDIATELY.
    Topamax can cause an increase in your InterOccular Pressure, also known as IOP. When your IOP is greatly increased, is is called Glaucoma. It is recommended to get an eye exam, and have your IOP checked BEFORE, or at your last eye exam, so you have a baseline IOP, before starting Topamax.
    At the first sign of any VISION DISTURBANCE, you should be calling your PHARMACIST. Your PHARMACIST can safely recommend a decreasing titration schedule for you, if you need to come off of Topamax. You should NOT just stop taking Topamax (topirimate). It’s like many, many other drugs in that you have to slowly work up to a therapeutic dose, and you have to slowly work down from the therapeutic dose.

    I’ve been on Topamax for over 12 years. In the beginning I had parastethesis and trouble with word recall and my head was in a fog. Considering I was taking it for migraines, I was okay trading the head fog/word recall for a migraine free life. I also lost 50lbs in a year.

    I’m now migraine free and the happiest I’ve ever been. I see no reason to get off Topamax.

  274. Was on topamax and was told by the doctors i need this dont even suffer from seizures. took 2 years out of my life couldnt function was very depressed. saw a new doctor and the doctor said why are you on this took me off feeling better but now have to try to do small steps from being out of the world its hard to get back into it. dont reccomend topamax felt like i was going to die.

  275. I took topamax for 10 years at a dosage of 200mg a day. . . whilst i was on it – i can only say great things. .

    yes i did occasionally have tingling sensations – and i lost a phenomenal amount of weight. . .(although it piles back on when you stop nearly as fast as it came off). ..

    but I want to know if anyone came off topamax and had problems getting pregnant . I’ve been trying for 2 years now – even with the help of IVF. . and i’m concerned that this drug caused major issues :(

    Has anyone else experienced this?

  276. Share information Well I been on this drug for over three years and I went from 180 to 132 and I thought it was great until my doses was increased and within six months had many side effects I had eye pain and redness and when I finally went to the eye doctor my presser was 28/29 and with the high amount of this drug I have acne which I had been clear since I was a teen also in this time period is when I lost the most weight
    about one year after taking this drug also had gailstones

    For me this drug was use to treat migraine and I was not told about the side effects I would have not known about the side effect until this week when I went to the company website and saw all the warning about the drug .
    you wish to be published on this page…

  277. I have been on it for two doses. You have all given me good reason to question my choice if not stop. I wonder if I can just stop taking it..

  278. To SANDRA (from feb)

    you are sorely misguided in your beliefs about who to place responsibility in. you, it seems, have not faced many seriously adverse side effects from topamax or else, I strongly believe, your story would be different.

    What I believe you fail to consider is that the doctors and manufacturers who dispense topamax are on the supply of supply and demand. They are just trying to push a product with the least amount of possible damage. Contrary to what you say, doctors should know what all the possible side effects are of any drug they are prescribing. I mean, come on, are you kidding me? A doctor is supposed to know what the ramifications of their treatments are so they can handle their cases responsibly. You utterly speak nonsense. You’re clearly in your own little world.

    I suffer from bipolar I and am really overweight. My psychiatrist prescribed to me topamax, saying it would work wonders for me. He downplayed the side effects, saying I would most likely experience weight loss, tingling, and other insignificant common side effects. He also said I should drink more water. I went to pharmacist with no real concerns; I asked if I should change my diet or take any precautions; I was just told to drink more water. I checked out the side effects on the information sheet of the medication sheet and was pretty concerned but I TRUSTED my psychiatrist. After all, I thought, HE’S THE EXPERT, I’M NOT. 200mg. After 2 weeks, I was no longer manic, or my mania was subsiding. I began to feel very strange though, it’s almost indescribable. I began reflecting upon my whole life (I’m 23). I began to have new perspectives on my life, like I was waking up from some deep slumber. I began becoming severely depressed after sometime, a month or so. I continued taking topamax because I felt that I would rather be depressed than manic, having barely controlled my mania.
    Anyway, this whole time I had been taking abilify at 5 mg. my psych decided that topamax was good enough to handle my mania, so he decided to take me off abilify and suggested I monitor my mood and increase my topamax accordingly. Long story sort: I increased my dosage because I was becoming manic again and this triggered a very severe depression. I became suicidal, planned out how I was going to commit suicide, I have been having personality/identity issues since I started this drug and now I feel so flat and detached from my emotions that I’m terrified of continuing another day off treatment. I feel so blank and out of touch with myself, almost like spock from star trek.

    What angers me the most is how my psychiatrist treated this drug so so lightly despite indicating to me that it is causing severe depression. I am also extremely upset at the way that he downplayed the side effects and I’m extremely upset by his treatment adminstration. He is very disconnected from me.

  279. I only took Topamax for 7 months for migrianes. During that time, I would suffer from restlessness, disorientation, confusion, fatigue, short term memory loss, shakiness in my arms and hands, felt as though my skin was crawling or better to describe, falling off my body, twitching, altered taste of everything that i ate or drank. I never suffered weight loss, I accually gained 40 pounds in two months while taking this medication. I was also perscribed Zoloft for depression during this time, in turned caused my depreesion to worsten significately. I told my doctor off this and she told me to continue taking the medication. That the side affects would wear off. I almost wrecked my car due to complete disorientation while driving. I felt lost in a place i was familiar with. I have been off the medication for 4 months now and I still suffer from short term memory loss all the time. I’ll forget myself in the middle of a conversation. This is difficult when you have kids and you can’t remember what was talked about 30 minutes after something was discussed. I also don’t sleep well. I don’t think there is anything I can do about it that would fix this problem. My doctor has now moved. I don’t wish to go back to a doctor for this problem because I live on base and military doctors will only give you 15 minutes of their time, so I don’t feel like they care or are reaaly listening to what your saying. They just dimissed the first time.

  280. I was on topamax for my migraine/cluster migraine for only a week and a half. I’m a mother with 7 childern in my home in which my husband was deployed.The unthinkable happened. I lost my sight. I couldn’t see hardly anything. Looked like I was in the middle of a heavy cloud and could only see color blob. I had severe eye pain, lost weight, had dizzy near fainting spells and depression. The drug had induced me into glaucoma in both eyes.
    This drug has effected me in more ways than one. The drug had taken important moments in my life that I will never get back. I lost my sight a day before my husband came back from a year long deployment. I was not able to go to the welcome ceremony. Lord only knows how excited I was about going. My husband had to meet me in the ER the day of his return. Then my grandfather passed away the following day. I was not able to attend the funeral being that I couldn’t see I couldn’t fly.

  281. At first I had the weight lose like everyone, then the memory lose, it was just like grasping at straws and then people thought i was ditzy, the tingling came, the worst part would be about 3-4 ago when I woke up to sever pain in my side. I had to rush myself to the ER to find out that I had 6 kidney stones, I the water drinker has kidney stones. As of today I am researching this wonderful medicine that I was put on for my Bipolor 1, migraines and to help with my weight (which I have put some if not all back on) that is causing me to loose my right kidney. My kidney stone count is now up to 10, #6 of the original is causing a blockage because it is so large it is joined by one more and I have 3 more in my left kidney.

  282. Share information you wish to be published on this page.. I have a question for the topamx users. I was on topamax for 9 years, although migrane free and other issues, my main issue was my sex drive. I have no sex drive anymore. I have been off topamax for 4 years now and still have no desire. Has anyone else experienced this? After getting off topamax my migranes continued, until one day we had a guest speaker at work, it was a chiropractor. At first I was sceptical but I have been migrane free now for 2 1/2 years it is wonderful. I still have no sex drive, also have tendinitus in the elbow, but the suicidal thoughts and severe fatigue have gone away.

  283. It’s not your doctor’s job to know the side effects? Is this person serious? In fact, most pharmacists do not tell you anything, and when I’ve asked about or reported my side effects, I was told to call my doctor because they could not give advice regarding my medication. Doctors also routinely ignore concerns or complaints regarding side effects because they receive kick backs from pharmaceutical companies. I have also asked and been lied to by physicians, or told those side effects never happen or are not permanent.

    I am on this board because I stopped taking Topamax over 2 years ago and have not seen an improvement in the cognitive impairments that I experienced almost immediately after taking Topamax. The hand tingling and funny tastes subsided; the worrisome side effect is apparently, permanent. I am 26 and cannot remember anything for more than 75 seconds. I mix up words. My reflexes, which used to be lightening sharp, are non-existent. I used to consider testing for MENSA (I know that sounds inflated), and my academic record and abilities seemed to support my own considerations; now I sometimes have trouble formulating sentences that are clear and concise due to confusion and forgetting words. I fumble when I speak, and I find myself having to look up words that were in my regular vocabulary. I just feel slow, and my intellect was one of my greatest and most treasured assets.

    Topamax isn’t the only drug I’ve experienced devastating side-effects with. The FDA is a joke; they are bought and paid for by companies like Johnson and Johnson, and most doctors are their puppets for 2 reasons:
    1. Most people in this country become medical professionals for profit, rather than out of compassion. Shelling out RXs like candy is very profitable, and minimally time consuming. They can get kickbacks for prescribing 100 medications a day, instead of treating 8 people a day for only 100 a pop.
    2. Even the legitimate, well-intentioned doctors have hundreds of thousands of school loans to pay off, and simply being a doctor is not as profitable as one would think if you’re not part of what I described above.

    Of course, there are legitimate reasons for prescribing and taking medication, but the benefits should outweigh the risks and some things are just not suitable for market. No, non life threatening illness would be worth the side effects I’ve experienced. To top it all off, while I do suffer from pre-menstrual related migraines, I was prescribed both drugs that caused such horrible effects for a different illness, and it turned out to be a misdiagnosis (I was diagnosed and medicated after only 10 minutes). I have approached lawyers, but have never heard back.

    I am just grateful my experiences were nowhere near as bad as some of the others I have read.

  284. They do need to look into another type of suit becouse eventhough im still on my topamax I want off but last time I went off I got put in the hospital my nuro says I need it now I am waiting to go to the mayo clinic for nurolagy to see if they can help me becouse on this med im either goi.g to hurt myself or my neighbors becouse I cant remember the littlest things lie turning off the stove burner after cooking and dont know how many times my husband has come home to a apartment filled with smoke and then I get into thi$ fog and just walk ou in frount of cars becouse I cant think ive taken more of my morphin then im supossed to becouse I cant remeber if I took it ive loss weight I like that but I dont like not being me ive told my doc but he just thinks its my psuedotumor cerbri but no this started with the topamx we all need to take a stand lets get our lives back we have the right and hopfully some lawyer will see that its not just harmful to pregnant women and babys this med is dangeres to all

  285. I’ve been off topamax for 4 months now after being on it for 5 years at various dosages from 50-400mg. I had all the side effects posted, the worst being the constant state of derealization that still hasn’t really left me. I relate to so many of these posts, especially Natasha, I still haven’t recovered all of my cognitive abilities. It’s so frustrating because there doesn’t seem to be any awareness from the doctors about long-term effects. I feel like such a different person after going on Topamax. Did anyone else experience increased depression and suicidal thoughts from coming off?

  286. I’ve been on Topamax for about 5 years, prescribed for mood disorder in combination to treat depression. It was a miracle drug for me at first. Amazing!!

    But after the generic came out (topirimate ? spelling) I started having problems which I did not directly relate to the medication at first. These included:
    Tingling in arms, hands
    Crawly skin feeling in legs and all over body
    Itchy skin (especially head)
    Hair loss (now at about 75% hair loss) — still going!!!
    Skin has become very dry
    Increased depression and suicidal ideation
    Weight loss
    Anorexia, no interest in food 9/10 days
    Forgetfullness, word finding problems
    Feel like I’m losing my mind
    The more reading I’ve done the more I realize my symptoms were side effects of the GENERIC Topamax. On the real Topamax, I did fine, felt fine: no headaches, no side effects to speak of. But the generic is POISON. I’m going to see a Neurologist to find a new migraine med (I’ve heard Zonegran is good) and get off this poison before it kills me.

    Oh and I forgot to mention, my special gift, of 6 kidney stones!!! Which the ER doctor said, “ah, of course, everyone knows Topamax causes kidney stones!!” Well, I didn’t know then, but I sure do now.

  287. I was put on Topamax by my Doctor for my migrraines, I have lost almost all my hair and have memory lost, please people try a different drug before letting your doctor putting you on this drug, I used to have long curly thick hair, now it is very brittle, thin and will hardly grow, and still have memory loss, also have the shakes in my hands know.

  288. I was put on Topamax 3 years ago for my migraines. I noticed immediately a change in me. I had trouble remembering things and developed insomnia. I have been off it for about a year. I still have memory loss. My mind feels it’s like in a fog every day. I wouldn’t recommend using unless absolutely necessary. Seems the memory loss is permanent.

  289. This is the worse medication I have ever been on. The parnoia and forgetting is the worse. I believe forgetting is one of the worse because you can’t remember to even tell your doctor about all your problems and you can’t remember what the side effects are. I don’t know about you but my pharmacy after I’ve gotten the first script they no longer include the list of side effects. I started out on 25mg twice a day. I was on that dose for two months. After the first month I told my nuro I’m having really bad panic attacks he assured me the topirmate would ease them and it hasn’t had a chance to work. The second monthly visit I told him I couldn’t concentrate on anything and was having a hard time remembering stuff, simple stuff. (I drove the the grocery store and just sat in the car couldn’t remember what I was doing. I forgot words. I forgot how to spell words I once used daily I even forgot to pay my bills and I never forget to pay my bills. I have rental property I forgot to cash the rent check had it for almost a month when I finally remembered. Who in the hell forgets they have a check to cash?!?! That was a first for me. As every one mentioned I was in a fog too. Felt like I was going crazy out of control. I couldn’t even concentrade on helping my oldest with her college applications. That upset me the most like I was failing as a mother and couldn’t do anything about it but feel helpless I told the nuro this.) He said that was a cause from my migraines and lets up your dosage “Now you can loose weight!!!” I told him I thought it was this medication he just kept saying no its your migraines causing these problems. He was really trying to sell this drug really makes me think he’s getting paid. The third day of me taking 50mg twice a day I thought I was having a stroke. On the second night I laid in bed and smelled burnt toast got up to check and see what my kids had done. Nothing. Went to work the third day. In the A.M. I seen a black spot move quickly across the floor in my office. I stared at it plain as day like WTF?!?! So I ignore it. Then later on I smell the burnt toast again. I am in a construction site trailer, I’m a government contractor. I share the trailer with only two other people. So I ask them if the burnt anything or if they smelled it. They respond with no, no one had cooked anything and they didn’t smell anything. There also was a time I came home and thought my house stank made my kids clean up I’m talking scrub the trash can. The entire time their telling me I need to get my nose checked. Makes me think it never stunk. Anyways, later that night on the third night laying in bed my vision became jiggly. That freaked me out bad. Earlier that day I did call my nuro I left a message with the staff of my symptons. He never called me back that night. I called the ER spoke with a nurse who told me I should stop taking the medication. I was scared to just stop I didn’t know how the side effects would hurt me from stopping and not weaning off. Next day I was still not right. I didn’t take my dose that night. I did take a 25mg in the morning that originally I was not going to take but had called the nuro office again and spoke with the staff person and I told them I stopped taking the medication she said “Oh, I wouldn’t do that.” so I took the 25 mg cause I was scared to take it and I was scared not to take it. I never spoke with the nuro doc cause he never called me back. I continued to have jiggly eyes and I had pain in my muscles on my left side my left arm and my left leg. There were so many problems. I made an apt with my primary doc when she came in the room I just started balling (crying) I told her I felt crazy and told her all my problems. She thought it was the medication too but sent me for blood work to check me for a chemical imbalance. She had told me to take one bill everyday for a week and then go to one bill every other day for a week and the one bill every other two days for a week then everyother 3 days for a week then to quite. She also tried to call my nuro no luck. Later that day he had a staff member call me to tell me to quite taking the medication all together. He’s a real pos he should have called me the first day I called him. I’m sure he was hoping I’d keep taking the meds and the side effects would fade because when I first started on the 25mg twice a day I called him about my lips going numb he didn’t bother to call me back till a week later on that one and that side effect had pretty much faded. Later I started having the shakes I went to the ER the doctor told me he thought I had a stroke with all my side effects. Came back normal. The doctor told me to get stay off meds and get the chemical imbalance test and told me if its normal to seek pysceatric help. He thought I was fucking crazy but so did I in away. I told my primary I feel crazy but I know I’m not. I never felt crazy before the medication. Anyway a friend of mine whose kid gets treated for mental health told me it will take about two weeks to feel normal after being off the medication. One week for it to get entirely out of your system and another week for your system to go back to the way it was. After I got off the med I did indeed feel the fog in my brain lift and go away. Not completly but I noticed a hughe difference. Also noticed the topirmate gave me headaches more headaces. I had many side effects not all mentioned in here but I did get the dry skin, dry brittle hair. My hair is still dry I started going to Wal-mart and get conditioner treatments once a month.


    I think you have to request this blood test. 25 hydroxy test. When I first went to my primary about my headaches before I started seeing my nuro she checked my blood but didn’t check this till I was a crying mess in her office. She thought I was depressed. I haven’t taken any other medications only my vitamins and its a HUGHE DIFFERENCE. Please check you vitamin levels. I came back on this site because I wanted to share that. Please don’t panic I know its scarey they way this medication can make you feel. Like I said the paranoia is terrible. Plus I think I got some kidney stones ouch my back keeps hurting I have yet to check that out. I hate taking off work cause I missed so much due to the headaches and the side effects from the medication. My nuro even blamed the increase numbness on my neck and back problem it was this topirmate the entire time. This is the devils medication. Makes you sick and you cant remember to really do anything about it. One day I had a freaky dream I was in my bed sleeping and I had a dark shadow to the right of me stareing down at me and I knew it was the devil but before I could even panic I seen GOD at the foot of my bed telling me that everything would be okay and to continue to follow him. I do believe this is the devils medication and I had everyone praying for me at church. My best friend prayed with me, for me. I have found peace of mind and am feeling normal now with the exception of memory problems but thats where I guess we have to learn again and play the card came memory with a deck of cards to strengthen the mind. I pray that everyone on here find peace and that GOD helps everyone of you find that peace and eases your migraine pain. Proverbs 3:5-6 Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Also read Psalms 143. For protection of the devil/demons read Ephesians 6:10-20 You can get through this you will be okay. TRUST IN THE LORD… I’m praying for all of you. GOD be with everyone on this website and help all of you. AMEN

  290. thank you all for your posts. I suffer from migraines about 3x a month. i was considering going back on topomax because when i had taken it in the past i was migraine free. I stopped taking it voluntarily both times that i was on it because of severe confusion and mood changes. I lost alot of weight too, 20 pounds from 120. i was a walking skeleton. I still have trouble with concentration and i now wonder if it is a result of the topomax use. i definately am not going to take it anymore after reading all of these posts. i have a dr appt coming up…i will have to ask about some other possible migraine remedy if there is one!

  291. I am in a major panic over this drug, I have been on it for 12 days, the dose I am at is 100mg, I am having constant eye pain, I went to the optician yesterday, he said I have normal pressure so that means no glaucoma, Iv stopped taking topamax but worried that the pain will never go away, can anyone let me know if they have experienced eye pain that went away after stopping the drug. Thank you.

  292. I want to remind people who are suffering from hair loss, fatigue, and softening nail beds and even kidney stones, especially if you are new to taking this medicine and even those who aren’t. We all know this decreases your appetite. In my case when I first started taking it it felt like the back of my throat was swelling shut, and I couldn’t swallow food. YOU HAVE TO PUT NUTRIENTS IN YOUR BODY. That’s why your hair is falling out, nail beds soften, and fatigue, fainting when standing will happen, you’re starved. You need to drink protein shakes, and drink V-8′s. I worked with a nutritionist and I am a female, 6’1″ tall and drank 2- 42gram Myoplex Protein shakes a day and 2 V-8′s. No I didn’t like them but I knew my body needed food! And I drank a TON of water. You have to MAKE yourself do this, and you’ll see many of these side effects diminish. I hope so anyway. When I first started I did have some short term memory loss that didn’t last long and some tingling in hands and feet, that I still occasionally feel but I feel sooo much better than I did before Topamax. I hope my suggestions will help some of you. You will get to a poking where you can eat solid food, but until then, protein shakes. Careful and read labels that they’re not full of sugar. Need lots of protein and potassium, and v-8 to give you sodium, you’ll actually need that.

  293. I took topiramate for 1 month in February for what a specialist at the emergency room called a migraine attack, but extreme dizziness doesn\\\’t really sound like a migraine to me. After about the third day on the medication when my dizziness started to diminish I started to feel off. Like my balance was off and my head just didn\\\’t feel normal. I thought it was my body recovering from the dizziness I experience for a week straight so I didn\\\’t pay it no mind. A week later when the dizziness was completely gone I still didn\\\’t feel right my balance was still off and my head still didn\\\’t feel normal, but now the back of my eyes started hurting. about two weeks in I started to get real emotional and get worked up over nothing, and to add to that I still didn\\\’t feel normal in my head or eyes, and my balance wasn\\\’t good at all at this point I found myself stumbling when I walk, and just the way I walked in general was changed. Instead of walking proud and tall like I normally would I started walking slow and unsteady, if somebody were to bump into me I probably would of fell. And to top off the emotional stuff and the balance and head issues I started to slurr my words and forgot what I was going to do or say. My mind felt cloudy and I just could not think straight, and this is a big problem for me because im 16 and was in school at the time. Severe fatigue started to kick in around this time and it was harder for me to walk and to even enjoy the supposed prime of my life. I went from hitting my punching bag and working out to just coming straight home from school and laying down to sleep. My mom didn\\\’t seem to really care about how I felt because when I would tell her the things that I would feel and how much they scared me. I told her I thought it was the medication, and she would scold me and tell me angrily \\\”Do you wanna get dizzy again\\\” and \\\”its all in your head, if you never would have read the side effects you wouldn\\\’t be feeling this way\\\”. I normally wouldn\\\’t cry and I was a pretty independent person but when I was on this medication everything changed. I was pissed off that everyone else at my school was having fun and enjoying there life so far, and I couldn\\\’t. This put me in a depressed state and I was getting very paranoid about the people around me. I was scared because my little brother went to the same high school as me, and some people in higher grades liked to start shit with him, and I felt that I wouldn\\\’t be able to protect him from them which just made me more sad. I started losing friends because i would just mope around everywhere and wouldn\\\’t really talk anymore i was so depressed all the time because of the state of physical and mental loss i was experiencing. Also i felt very uncomfortable because when i would walk my eyes seemed like they were swaying and when i would try to pay attention to the teacher my eyes sight would spin for a second then i would catch it. I am off this medication now and the dumb fucking specialist was wrong because i have never had a migraine after this whole fiasco. I had more headaches on this medication then i did throughout my whole life. I can say throughout my entire life this was the worst few months i have ever experienced. It took about a few months after i stopped taking topiramate for my mind to clear up a bit, and for the fatigue to go away, but ever since then i have not felt the same. My bones start to hurt from time to time now, and every day a wake up tired like i have not gotten enough sleep even when i sleep for 12 hours on some nights.
    Sorry to anyone reading this who thinks i sound like whining baby but it feels good to finally let out everything i have felt these past months. And sorry if reading this is hard because i just wrote this fast and straight from my mind so sorry for that…

  294. A highly-regarded neurologist prescribed topamax to me for my migraines. I started the medication the end of July and within a month of the full prescribed dose (100 mg once daily) I was in the ER with a seizure. My left side went weak and numb and my head was tilted to the right. Prior to this episode I had times of mental confusion, word blanks, and afterwards I stammered and stuttered for a couple of weeks. Not to mention being unable to take a deep breath. As a result I was placed on medical leave for three weeks. The doctor in the ER? He simply wrote it up as an anxiety attack, gave me a pill, and told me that I could go to work the next day, even though I could not speak nor walk steadily. He did advise me to see the neurologist as soon as possible. The neurologist? He wasn’t going to blame Topamax. He assured me when he prescribed it to me that he has not had a patient ever who had side affects. And women loved it because they lost weight. The side affects in the pharmacy brochure were listed as rare. Rare because the doctors are not documenting these cases. My neurologist, of course, went along with the ER doctor and placed me on anxiety medicine and continued me on with the Topamax. The result….I was in a fog, a medicated fog while not working. I am off of Topamax now because of another doctor. The original neurologist will not see me.
    For me the drug cost me time lost at work, my reputation at work, hundreds of dollars in medical bills plus the ER visit. Not to mention feeling awful physically and mentally. This is an evil drug given to me without regard to my safety.
    What will it take to stop doctors from handing out these pills without warning the patients? And then to only give them more pills when the first pill causes damage? What kind of profit are the doctors making off of Topamax?
    Laws need to be in placed to guarantee the patient’s safety. And this medication in particular needs to be taken off the market.

  295. I have been on Topamax since 2005 and have only recently been experiencing the following symptoms: eye twitching in right eye on and off for the past 2 years and now the left eye for the past 2 months. I didn’t realize it could be related to this drug until I started reading the symptoms everyone else is listing and since this is the only drug I take have started to put this together. However, I have been battling frozen shoulder for the past 3 years, first in my right shoulder (2010) and now in my left (2013). As I am researching on the internet, I am finding those that there are a few that take this drug also have this and am wondering if others also are suffering from this and link their frozen shoulder troubles to long time use?

  296. I was experiencing severe miagraines…I was seeing the same doctor asince i was in my 20′s. I am now in my 50′s…I moved to a different area and a doctor came highly recommended…I went to this doctor and was advised to stop the fioricet which NSF been working and instead put on an anti depressant plus referred to a neurologist who did a number of test including carpal tunnel syndrome which led to severe nerve damage in both hands…I had an MRI which showed a constricted artery in my brain and a subsequent mra to focus on that artery, it ahowed further damage and I was then referred th westchester medical hospital for further testing….I have memory loss, among othe issue and the numbness and tingling in my hand and legs. I need to kno if I have any recourse in this matter. I have worked at a very stressful job for 25 1/2 yrs and I am afraid I may not be able to return to that job in the same capacity.

  297. I started Topamax in 2009 and took it for about a year and a half. It was a life saver for my migraines but if I would have known then what I know now, I would have tried other medications first. I had severe memory loss and would struggle just too understand what someone was saying to me. Often I felt like my mind was a complete blank. Since stopping taking the Topamax, my memory has not returned. I used to be able to remember dates, names, events clearly and now I have to write myself notes for everything. It affects my job, my family, everything. It has been almost 3 years now and I suspect my memory will never be the same.

  298. my wife was given Topamax for weight loss
    the problems from this drug were apparent from the first day of use.
    tried to get her to stop taking it but she said I wasn’t a doctor.
    twitching eyes, dizziness, and memory lose.
    worried about her.

  299. I have been on topamax for the past 10 years to treat Epilepsy
    I have recently changed neurologist\’s and my new doc, suggested that seeing as though my last 2 brain scans were normal, we try weaning off the Topamax as this drug has many negative side effects.

    For years I had wondered why my cognitive functioning had slowed so much, why trying to form a conversation with people or remember simple things was so hard, but now after doing some research on the internet about Topamax and the side effects it all makes so much sense.

    The question I have is, why wasn\’t I made aware of this 10 years ago so that I could make an informed decision as a consumer and as a patient as to wether or not I want to lose all my cognitive functioning to one of the many available anti-convulsant drugs on the market?

    10 years on, and I think about university courses I have started, but not finished, things I have wanted to achieve, but haven\’t due to the effects this drug has had on my life…

    Somehow in my case the cons far out weigh the pro\’s.

    Now I know there is current lawsuits in place in regards to birth defecvts that women weren\’t made aware of…But what about all of us innocent people that has lost years of memories and cognitive function and were never warned?

    Where is our lawsuit?

  300. I can relate to all the posts on here. I have all these side effects as well. And was involuntarily committed. This drug almost ruined my family. It really took me away from them mentally and my son who is a senior should not have had to go through this the last year. (As well as my husband and other family members). The problems continue even though I\\\’ve stopped the drug. I will never recover from the effects of this medication. I took it for 8 years or so for migraines. I also took the generic and brand name. I am scared because of my ability to function at work. Please help!!!

  301. I have been on Topamax for 2.5 yrs, my job is at risk and I just went back in June after a 2.5 yr sick leave. My memory is crap, I cannot retain anything. Headaches and migraines are down to about 2 a month Lost 115lbs which is great, but everything else is crazy, i have suddenly developed allergies to food I have eaten all my life, my glands start swelling all of a sudden out of the blue for no reason. Oh and yes the tingling fingers are just the bomb. Calgon take me away!!!!!!!!!!

  302. Just a short comment to add to everyone else–I was on Topomax for 12 years and I suffer from many of the same problems mentioned above. I had problems with cognition, word recall, severe suicidal thoughts and permanent loss of memory. All of this has affected my life, my independence, my family, my job and the ability to hold a job, but the most negative effect I’ve felt is memory loss. I have trouble remembering no matter what the time frame–last month, last week or 5 minutes ago. I had memory testing done a year ago and we found that I have only 5% recall. Seeing that the average recall is between 30-60% I have a hard time in many of my daily functions. From what I understand, there is not much hope for this to get better. I agree with anyone who wants this drug taken off the market. I really feel it’s ruined my life. After all, how can you enjoy life if you can’t remember it? Good luck to anyone who’s been affected by this drug. I wish you well.

  303. I am reading this and feel utterly sick. I had been giving this drug to my 6year old epileptic daughter for nearly 12 months. My daughter was on sodium valproate which was not controlling all seizure types and she was starting to regress. Her neurologist added topiramate. When she started taking it her seizures were mostly controlled for the first time in a long time but she began to deteriorate. It was like our little girl was gone and a zombie with no quality of life had taken her place. At the time I asked the neurologist ( quite a few times) if the medication could be doing this to her – neuro assured me no way – her many doctors were now investigating degenerative diseases/syndromes. My daughter went from speaking in full sentences to not being able to utter a single word. Her motor function deteriorated to the point he could no longer feed herself. She could only walk short distances and would tire so quickly, she could no longer operate an iPad – she lost all purposeful use of her hands. There was a period (about 2months after taking topiramate) that her right hand became completely parylised but then semed to fix itself (I would do daily rehab exercises with her). We had her on sustain and other high calorie foods to try and maintain her weight. It was a very confusing time. To think she was sent to so many different specialist to try and find out what was wrong … And all of them disregarded my concern of this medication. After many time asking the neurologist to wean her off (they were very hesitant to do so as it we finally had seizure control and the fact she was regressing befor topiramate confused the issue greatly) I told them I would be taking her off as I really felt the medication was contributing. It is now 4months after weaning and it is like a miracle has occurred. She is vocalising words again and her motor function is back. To think I had been poisoning her with this really does make me feel sick. I really hope my daughter does not have permanent damage from this. Neurologists and other medical specialists really need to take medication side effects more seriously. To think of all the time money and effort wasted by the medical system on investigating my daughters symptoms (it is not my own out of pocket I am concerned about – it is the unnecessary clogging up of the medical system!!!)- which a lot of it can now be attributed to this evil medication. Disgusting.

  304. This medication Topomax did the best things to change my life and I owe it all to my doctor who tried it on me because he didn\’t want to see me suffer anymore from long time migraines. It also has helped with another medication to keep me stable from seizures from Epilepsy I was diagnoised with 17 years ago. I may not have gotten the most awful side effects I have read on here(it breaks my heart) to read all of that. But even now with a bone disease in my spine and cronic pain at 40 years old I thank the people who made this drug. No more migraines, yippee.
    Only a seizure if I get very unnessassary stress from the 20 a day I had. Ok I need reading glasses I don\’t feel tingling in my hands only my feet and legs that is from the bone disese I have and the herniated disks that keep coming out and where they were sitting it turns to bone. We all have our awful things to share that just isn\’t fair but it is how we decide to live out the rest of our lives with a smile or a frown, god bless..

  305. Has anyone else had Top. make their perfectly normal teeth start to rot?

  306. I was prescribed Topamax because of its side effect of curving appetite. I am bipolar (schizoaffective type) and as a dancer when I started gaining weight with taking the Risperidone, my doctor recommended Topamax. She did tell me of the “dopa-max” side effect. I took it for a few months and it was clear that my ability to choose words suffered, especially notable when playing music live and forgetting lyrics — really a first. So I stopped taking it. I found out I was pregnant shortly after this and had to abort as it was discovered the fetus had Anencephaly.

    It’s been years since this happened and I have moved to a sunnier, less depressing climate and hardly need any medication for my illness anymore. However, I clearly still have the problem of substituting the incorrect word very frequently. Sometimes I notice, sometimes I don’t but others point it out. I would say it happens as frequently as 1-2x per day. This must be related to the Topamax drug. All the other medications I have taken over years never had this effect.

    I think it should be taken off the market and is a dangerous drug. I’m currently unemployed looking for work, but I am definitely not as sharp as I once was :(

  307. I took topamax for about 4 years. It was prescribed to me for chronic headaches. I started having headaches at the age of 5 and am now 49. I experienced tingling,numbness in different parts of my body,I stopped sweating which caused me to have chronic itching when I became over heated or exposed to sun light. I started to experience chronic pain on my left side. Word loss, twitching in my eyes,pain behind my eyes, loss of appetite, weight loss of 35 pounds. My vision became a problem. I started to experience extreme paranoia and that was the last and final side effect that I could take. I have chosen not to go into great detail concerning all of the drama that I went through suffice it to say that this medication made my life a living hell.
    I stopped taking it 11 months ago and I continue to experience side effects. Actually in some ways its worse. my memory continues to be a problem, my vision improved some. The worst symptom I deal with is chronic pain all over my body and arthritis. Thank God the paranoia stopped, if I did not have a husband that was committed to me surely he would have divorced me.
    I understand this medication has been a God send for some but it was not for me, it changed everything and I know that my life will never be the same again because of it.

  308. I’m afraid Topamax has caused me to have Chronic Kidney Disease. I was just diagnosed and am freaking out. I’m only 37, don’t have diabetes or high blood pressure. I don’t fit the norm for this disease, yet have it. Been taking Topamax for over a year. My migraines are less severe, but I’m concerned at what cost.

  309. Topiramate has changed my life . I woke up two months ago after taking this with a massive headache and went to bathroom. When I came out I could not see. I lost my eyesight. Slowly recovering I can see only 10feet in front of me. It is know for this.

  310. I took Topamax for almost 2 years for migraines. I have memory problems, moments where I “space out”, and trouble finding the correct words for things quiet often. Also while on Topamax in 2009 I became pregnant. I asked my OB and my primary doctor is a mm of my medication was pregnancy safe. They took me off my muscle relaxers and anxiety pills but insisted numerous times that Topamax was 100% safe. My OB told me that he prescribed it to pregnant women everyday for headaches. Sadly I miscarried. My new OB 2 years later swears it was the Topamax. I had a clear fetal heartbeat then 3 weeks later my baby was dead. My OB had also upped my dosage at my 1st appt. I strongly agree with my last OB that Topamax killed my unborn baby.

  311. I am a 24YO female. I took Topamax from the age of 19-23. I was on 300mg a day for seizures and migraine control. While on the drug and in college I couldn’t take exams and was constantly forgetting things. I had a boyfriend during that time and looking back I can only remember big events, not any small details. I have been off Topamax for roughly 6 months. I made better grades and finally graduated. I used to feel stupid all the time, couldn’t come up with words and I was constantly “blacking out”. About 2 years ago I started having bladder discomfort. While still on Topamax, since I was a student I was of course tested for STD’s and they insisted me peeing blood was just me being a slutty college student. It took some pressing of my physicians to run some tests where they found an ovarian cyst. They removed the cyst (surgically) and I was still having problems. Finally the doctor realized I had a kidney stone but was shocked because of my young age. No one ever suggested I get OFF the Topamax though so I continued to take the drug. A few months ago I began having the same symptoms (kidney stone) so tests have been done and urine has been collected but the physician claims they are small stones that shouldn’t be causing issues. Every time I have a urine analysis they tell me there is blood in my urine, lots of it. I just wish someone would figure out what the heck is wrong with me because I was healthy until I got on Topamax. The newest urologist I saw told me Topamax is toxic and to stop taking it immediately, so I have but my symptoms are still here and getting even worse. I love to run and even if I drink 10 bottles of water a day I can still feel my body getting overly dehydrated. I would like a solution and I have yet to really find one. It is annoying to me that at 24 years old I am having all these health problems when I eat right, exercise and live a healthy lifestyle.

  312. I’ve been taking Topamax for about 5 or 6 years, at one time it did make my toes tingle, my doctor lowered my dose, I now take 200 mg, 100 2 night and 100 in the morning, I do constantly get sharp pains in my head, and my eyes hurt a lot (I always say in the socket) but me eyes feel like somebody has hit me in them, it would do it every so often real bad,, but now the pain won’t stop,,, I’m currently off work because of this, trying to figure out what’s going on, horrible pain in my neck,,, and my head just won’t stop hurting,, had MRI,, cat scan,,, even x-ray of my neck,,,, came back clean,,, I’m usually strong but iv’e been crying, drove for about 10 min the other day,,, that was it head was hurting so bad couldn’t drive any more,,,, (very frustrating) Sad,,,, not blaming the medicine,,,, I just wanna know what’s going on!!!!!!!! It’s something

  313. I have taken Topamax (brand name only) since 2000. 200mg at night. I have JME and have been on several medications before Topamax (lamictal, depakote, etc.). I have been seizure-free since. Sure, the medication comes with an array of side effects, as do all anti-epileptics. Your doctor should have explained these side effects to you. Also, you should have researched the medication yourself! Anything you put in your body you should research and ask questions before taking for a long period of time. I have had decreased memory/cognition, 2 bouts of kidney stones, weight loss, I don’t sweat, and many more SE’s. Although some of these are tough to live with, many people do not even notice them. I have graduated from nursing school, ran a marathon, met the love of my life, and now I have my dream job in palliative care! If you let the side effects take control, they will. If you choose to be proactive for yourself, stay healthy, and follow your doctors recommendations closely, you can thrive in life. Even while taking this medication! It took me a good 4 years to “get use to” the side effects. For myself, there is only one medication left to try and I will not take it unless this medication fails. I would rather have all of these side effects than have seizures. You control your body, not medication!

  314. Its a horrible Drug!!

  315. My wife has occurred seizure two times one 11 Mar 2009 when she was pregnant and second was on 8 Oct 2010. Currently she is taking medicine Topamac 50 mg twice daily and folic acid 2.5 mg once in a day.She wants to become a pregnant. She’s doctor suggest she can plan for next baby.If any body she can take medicine Topamac 50 mg during or is it harmful for her and unborn baby.

  316. I was just put on the same medicine and was given the same side effects I have only been taking it for a week for hydrocephalus for the headaches that I am having with these comments this is a bad drug and it does need to come off the. Market I already have the side effects due tothe hydrocephalus I think that I might stop taking mines also I do not want to loose my eye sight or body functions that already happens with what I have don’t need any added extra thanks to you all for the comments it was very helpful god bless everyone ..

  317. Prescribed Topiramate – approx. October 2013 for trigeminal neuralgia. Other meds did not help with pain and made me too drowsy to function or caused other intolerable side effects. This helps with pain – doesn’t take it completely away – makes it tolerable – but also causes cognitive issues – I have problems thinking of words, slower thinking, problems concentrating and memory and also focus. The small plus is yes – it did help me lose some weight – about 20 lbs. that I was having trouble losing – the small positive. It also forced me to increase my water intake to avoid getting kidney stones while on this medication. If I’m not drinking enough water, I notice other side effects like tingling in my feet and also some pin prick chest pains.

    I also have ADD and this definitely makes those tendencies much worse. I also catch myself repeating words while typing and don’t realize it until I go back and check my work. Do a lot of transposing and sometimes still don’t catch that – almost dyslexic type things. I sometimes slur words or almost stutter words. I am worse when I am under pressure or when I’m nervous. I am currently taking 50 mg 2x per day. In January 2014 I had a flareup of nerve pain where my neurologist prescribed an increase in dosage – at that time I had been taking 75 mg 2x per day and I increased to 100 mg 2x per day and I wasn’t able to tolerate it. I was having bad side effects where it seemed as if my computer keyboard seemed backwards somehow. I could barely focus and it was extremely difficult to think. I backed down since them to the 50mg 2x per day and am thinking of trying to back down more however, my pain is worse as I do. It’s almost just as hard to think with pain in your face, teeth, nose, eye. But it would be nice to not feel as if you know your intelligence is there somewhere but you can’t quite reach it – and to not have people look at you as if they feel (and you feel) as if you’re as dumb as a box of rocks because you are taking so long to try to think of one simple word. Or you can’t remember the last four digits of the phone number someone just told you two seconds ago. Or they are talking too fast for you to write everything down quick enough and you can’t remember it all to take notes. Someone made the comment that their neurologist just blew them off as this was just part of taking the medication – that’s exactly what I got – and I feel like that shouldn’t be enough. Yet – I also feel like they don’t know what to do either when they’ve tried all the other medication there is to try and this is the one that actually works and doesn’t cause chest pains and a rapid heart rate, for example. Dumb as a box of rocks or chest pains? Or falling asleep at the wheel or at the desk at work? Or in excruciating pain? At the moment, the choice is dumb as a box of rocks but trying to find a happy medium – trying to find ways to help offset that somehow – if possible. Would like to also not be in horrible pain. Is that too much to ask? I hope not.

    Oh – depression is there too. I have to do all I can to fight to keep myself out of that bottomless pit and it hasn’t been easy.

  318. Butterfly68, you just described my experience with it to a “tee!” I couldn’t tolerate 75 mg because I just became so ignorant and unfocused, so I’m back to 50 mg, and trying to wean off of it altogether.

    I currently take Savella with Topamax, so I’ll be keeping the Savella for now. Savella allows me to get out of bed in the morning, although it has it’s own side effects and was horrific to get on (those two weeks were awful!).

    I also started seeing a chiropractor. I can’t believe how much better that made me feel. I used to take pain pills all day long, and now, I’m down to one dose every few days. Amazing! I hope you find something to feel better soon! Hugs!

  319. I was put on topamax for a seizure.disorder. I took the drug for several years and no one could figure out why my vision was failing or why had parkinson-like symptoms (trembling, no balance, weakness, falling, stiff muscles, etc). All of my eye exams showed no reason for my vision loss even though I was reduced to a visual acuity of counting fingers at les than two feet, was seeing flashes of light and dark spots, seeing halos and starbursts around lights, seeing tracers and ghosting/multiple images, became severely photophobic, continually developed corneal ulcers/abrasions and uveitis and developed a severe color defect. According to many medical studies topamax can cause visual disturbances, including vision damage and loss. Since the majority of my symptoms were caused by topamax damaging my brain and not my eyes the symptoms couldn’t be verified by eye doctors. This caused me many years of being treated like a liar, faker and malingerer, which I was not. I have been of topamax for several months and my vision is still classified as legally blind (and getting worse).

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