Topamax Lawsuits

Last Updated: July 2008 • 176 Comments

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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.

STATUS OF TOPAMAX LITIGATION: The potential for Topamax birth defect lawsuits is being reviewed for babies born with serious birth defects after the mother used the drug during pregnancy.

>>SUBMIT INFORMATION ABOUT A POTENTIAL TOPAMAX BIRTH DEFECT FOR A LAWYER TO REVIEW<<

MANUFACTURER: Topamax is manufactured by Ortho-McNeil Neurologics, a subsidiary of Johnson & Johnson. It was also made available in 2006 as a generic.

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 the July 22, 2008 issue of the medical journal Neurology, a small study was published which linked the use of Topamax during pregnancy to an increased risk of serious birth defects. The increased risk was seen among women taking the drug to treat epilepsy, either alone or in combination with other epilepsy drugs.

Researchers followed 203 women who used Topamax during pregnancy. Of the 178 babies born to these women, 16 were found to have major birth defects. Four of the babies were born with a cleft lip or palate, which is a rate 11 times higher than would be expected in the general population. Another four babies were found to have genital defects, which is a rate 14 times higher than would be expected in the general population.

Although the study only followed women who used Topamax to treat epilepsy, it raises substantial concerns about the use of the drug among women of childbearing age to treat migraines. Women are three times more likely to suffer from migraines than men, and the condition frequently occurs in women of childbearing age.

TOPAMAX SUICIDE RISK: Topamax is also part of a class of epilepsy drugs which have been associated with an increased risk of suicide. In July 2008, the FDA considered whether a “black box” warning, which is the strongest warning which can be placed on a prescription medication, should be added to Topamax and other epilepsy drugs about the increased risk of suicide.

In January 2008, the FDA issued an alert to healthcare providers about a review of about 200 different clinical studies involving nearly 44,000 individuals taking an epilepsy drug or placebo, which fouond that users of drugs like Topamax, Lamictal, Lyrica, Depakote and other epilepsy drugs were twice as likely to experience suicidal thoughts or behavior.

Tags: Birth Defect, Cleft Palate and Lip, Epilepsy, Genital Defect, Migraines, Suicide, Topamax

There Are 176 Comments So Far • (Add Your Comments)

1. Pingback by Topamax Linked to Cleft Palate, Cleft Lip and Other Birth Defects — AboutLawsuits.com on 23 July 2008:

   [...] research indicates that the use of the epilepsy and migraine drug Topamax, either on its own or in combination with other epilepsy drugs, may increase the risk of birth [...]

2. Comment by Arthur on 9 August 2008:

   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.

3. Comment by Susan on 17 August 2008:

   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.

4. Comment by scott on 1 October 2008:

   My aunt has been taking topomax for a while, and has lost 50lbs and is sometimes acting strange since taking the drug. My neice had a birthday party, and we asked her if she was going, she replied yes, although, she called back AFTER she went to the party and said she would not be able to come ??? whaaaa. Last week, she was in a bad car crash, and the bones in her neck were broken, and major brain swelling and she died later this week. No one knows what happened or how she drove off the rode and hit a tree. A couple days ago a women calls and request car insurance info, because she also got into a fender bender 30 minutes earlier. the owner of the inflicted car states my aunt was dazed and confused and dizzy.
   the women said maybe you should relax before getting back behind the wheel. my aunt said she was fine, and drove off weaving and bobbing said the witness like a drunk. 30 minutes later she was being flown in a lifeflight copter fighting for her life. turns out she lost that fight

5. Comment by Art on 16 October 2008:

   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.

6. Comment by Tammy on 16 October 2008:

   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.

7. Comment by Gina on 24 October 2008:

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

8. Comment by Paul on 4 November 2008:

   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.

9. Comment by kim on 17 November 2008:

   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.

10. Comment by kim on 18 November 2008:

    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.

11. Comment by Katina on 20 November 2008:

    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

12. Comment by juanita on 3 December 2008:

    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.

13. Comment by jill on 6 December 2008:

    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

14. Comment by Janet on 17 December 2008:

    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.

15. Comment by Jennifer on 18 December 2008:

    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.

16. Comment by Grace on 18 December 2008:

    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.

17. Comment by Dawn on 26 December 2008:

    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.

18. Comment by Kate on 29 December 2008:

    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.

19. Comment by Katina on 8 January 2009:

    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

20. Comment by M Vetga on 8 January 2009:

    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.

21. Comment by lisa on 20 January 2009:

    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

22. Comment by Terry on 25 January 2009:

    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

23. Comment by Cherie on 26 January 2009:

    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.

24. Comment by Patti on 11 February 2009:

    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.

25. Comment by Elizabeth on 16 February 2009:

    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.

26. Comment by Debra on 4 March 2009:

    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.

27. Comment by Ellen on 17 March 2009:

    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.

28. Comment by Pamela on 24 March 2009:

    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.

29. Comment by Christina on 28 March 2009:

    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.

30. Comment by Sandra on 10 April 2009:

    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 %.

31. Comment by Cara on 12 April 2009:

    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.

32. Comment by Marion H. on 26 April 2009:

    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.

33. Comment by Joey on 6 May 2009:

    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.

34. Comment by Smart Girl on 12 May 2009:

    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”.

35. Comment by tari on 28 May 2009:

    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?

36. Comment by MARY on 30 May 2009:

    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!

37. Comment by Sherry on 30 May 2009:

    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)???

38. Comment by Traci on 3 June 2009:

    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!

39. Comment by Heather on 18 June 2009:

    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????

40. Comment by RENEE on 23 June 2009:

    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.

41. Comment by Amy on 25 June 2009:

    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.

42. Comment by DONNA on 12 July 2009:

    I WAS ON TOPAMAX WHEN I STARTED LOOSEING MY EYESIGHT. EVERY DAY MY EYESIGHT DECREASED UNTIL I COULD NOT SEE MY HANDWRIGHTING TO FILL OUT A CHECK. AFTER AN EYE EXAM THE DOCTOR TOLD ME I WAS HAVEING A SIDE EFFECT TO THE MEDICINE TOPAMAX . MY PHARMACY AFTER REASERCHING THE MEDICINE TOLD ME TO QUIT TAKEING IT RIGHT AWAY AND TO CONTACT MY DOCTOR. AFTER BLOODWORK I HAVE FOUND I NOW HAVE DIABETES AND MY LIVER ENZYMES ARE HIGH. MY BLOOD WORK WAS FINE FOUR MONTHS AGO. I AGREE, THEY SHOULD EXPLAIN THE SIDE AFFECTS IN MORE DETAIL WITH SUCH A DANGERIOUS MEDICINE, GIVE PEOPLE THE RIGHT TO DECIDE IF THEY WANT TO TAKE A CHANCE ON GOING BLIND OR DAMAGE TO THEIR KIDNEYS ,LIVER AND GOD KNOWS WHAT ELSE IN TIME. THE ONLY THING I HAVE BEEN TOLD IS THAT THIS MEDICINE CAN REVERSE ITSELF IF CAUGHT IN TIME. I HAVE BEEN OFF THIS MEDICINE FOR TWO MONTHS NOW. MY EYES ARE GETTING BETTER BUT NOT BACK TO NORMAL. CAN’T WEAR MY EYEGLASSES THEY FEEL LIKE THEY BELONG TO SOMEONE ELSE. THIS MEDICINE SHOULD NOT BE ON THE MARKET.

43. Comment by jeanette on 17 July 2009:

    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.

44. Comment by Grace on 27 July 2009:

    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.

45. Comment by Julia on 31 July 2009:

    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?

46. Comment by Colleen on 2 August 2009:

    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.

47. Comment by Brandy on 8 August 2009:

    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…..

48. Comment by Amy on 12 August 2009:

    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.

49. Comment by Arthur B. on 4 September 2009:

    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.

50. Comment by Arthur B. on 4 September 2009:

    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.

51. Comment by Carla on 9 September 2009:

    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.

52. Comment by mama on 16 September 2009:

    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!

53. Comment by Leann on 18 September 2009:

    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.

54. Comment by Stephanie on 1 October 2009:

    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

55. Comment by Karen on 6 October 2009:

    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.

56. Comment by Darlene on 8 October 2009:

    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.

57. Comment by denise on 8 October 2009:

    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.

58. Comment by Tammy on 23 October 2009:

    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.

59. Comment by Amanda on 26 October 2009:

    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!

60. Comment by Jeremy on 4 November 2009:

    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.

61. Comment by jaynell on 5 November 2009:

    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.

62. Comment by Art on 8 November 2009:

    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……

63. Comment by Teresa on 14 November 2009:

    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.

64. Comment by anonymous on 15 November 2009:

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

65. Comment by Barbara on 16 November 2009:

    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.

66. Comment by Betty on 17 November 2009:

    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.

67. Comment by Alicia on 17 November 2009:

    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.

68. Comment by Monette on 19 November 2009:

    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.

69. Comment by Teresa on 21 November 2009:

    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.

70. Comment by Kristine on 22 November 2009:

    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 )

    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.

71. Comment by Kristine on 23 November 2009:

    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.

    http://www.neurologynow.com

72. Comment by Christina A. on 24 November 2009:

    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.

73. Comment by Brenda on 25 November 2009:

    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!

74. Comment by sherise on 25 November 2009:

    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

75. Comment by Rosie on 4 December 2009:

    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.

76. Comment by David on 4 December 2009:

    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.

77. Comment by Carla on 5 December 2009:

    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.

78. Comment by Mike on 5 December 2009:

    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.

79. Comment by Mary on 7 December 2009:

    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.

80. Comment by Brenda on 9 December 2009:

    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.

81. Comment by GWEN on 11 December 2009:

    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

82. Comment by Dawn on 13 December 2009:

    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.

83. Comment by David on 15 December 2009:

    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.

84. Comment by kristi on 16 December 2009:

    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 $$$$$$

85. Comment by IVY on 23 December 2009:

    I HAVE BEEN ON TOPOMAX FOR 3YRS. I STARTED OFF AT 50MG DAILY THEN 100MG DAILY NOW IM AT 200MG DAILY FOR SEIZURES ALONG W/DILANTIN..AS THE YRS HAVE GONE ON I HAVE INCREASED HEADACHES, BODY PAIN, JOINT PAIN ,VISION HAS WORSENED AND I STAY SICK TO THE STOMACH.ALSO TINGLING IN MY ARMS AND HANDS MY LEGS AND FEET IS SO EXTREME SOMETIMES. THIS YR THE HEADACHES AND DIZZINESS GOT SO BAD THAT MY DR PUT ME ON A METHYLPREDNISOLONE WHICH IS A STEROID THERAPY TO HELP BUT THE EFFECTS OF ALL THAT JUST WAS TERRIBLE, MY FAMILY NOTICES ALOT OF MOOD CHANGES AND I FEEL SO DEPRESSED AT TIMES AND HARD TO KEEP CONCENTRATION ALOT. I STAY TIRED ALOT AND WHEN I ASKED MY DR IT WAS SAID THAT IT WAS JUST SIDE EFFECTS, BUT I NOTICED THAT I ALWAYS TEND TO BE AGITATED AND MY NERVES ARE SHORT..I WAS NEVER THIS WAY ALWAYS HAD PATIENCE AND NEVER PRONE TO BE AGITATED BUT ITS INCREASED TREMENDOUSLY…MY SEIZURES HAVE INCREASED A LITTLE MORE ESPECIALLY FOCAL SEIZURES ..I THOUGHT THIS DRUG WAS SUPPOSE TO HELP CONTROL THEM NOT INCREASE THEM

86. Comment by Laura on 29 December 2009:

    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.

87. Comment by katie on 30 December 2009:

    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.

88. Comment by Carolyn on 30 December 2009:

    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.

89. Comment by Melissa on 2 January 2010:

    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.

90. Comment by Jennifer on 2 January 2010:

    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!

91. Comment by Shumbae on 14 January 2010:

    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.

92. Comment by Ilva on 15 January 2010:

    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!!!
    STAY AWAY FROM THIS DRUG. YOUR DOCTOR WILL DENY THE HORRIBLE SIDE EFFECTS AND BLAME IT ALL ON STRESS.
    DON’T EVEN TRY IT. BY THE TIME THE FIRST HAIR FALLS IT WOULD BE TOO LATE TO GO BACK!!!

93. Comment by Debra on 17 January 2010:

    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.

94. Comment by Vicky on 18 January 2010:

    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 zoloft..to 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.
    BE VERY CAREFUL!!!!!

95. Comment by Anonymous on 18 January 2010:

    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.

96. Comment by Jeanie on 18 January 2010:

    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..

97. Comment by Brittany W on 20 January 2010:

    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!

98. Comment by Tina on 20 January 2010:

    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?

99. Comment by Shana on 22 January 2010:

    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.

100. Comment by Joanna on 22 January 2010:

     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?

101. Comment by Joanna on 23 January 2010:

     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!!!!

102. Comment by NaHomTima on 24 January 2010:

     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.

103. Comment by haley on 28 January 2010:

     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.

104. Comment by WENDY on 31 January 2010:

     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

105. Comment by Lisa on 2 February 2010:

     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.

106. Comment by Eddy on 2 February 2010:

     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.

107. Comment by Debbie on 3 February 2010:

     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.

108. Comment by Sara M. on 6 February 2010:

     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.

109. Comment by Claudia on 11 February 2010:

     February 12th
     2010
     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.

110. Comment by chrissy on 14 February 2010:

     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

111. Comment by betty on 15 February 2010:

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

112. Comment by pants on 16 February 2010:

     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.

113. Comment by Charline on 17 February 2010:

     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.

114. Comment by Judie on 18 February 2010:

     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.

115. Comment by Cris on 3 March 2010:

     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.

116. Comment by Miss Rice on 4 March 2010:

     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.

117. Comment by Patricia on 4 March 2010:

     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,

118. Comment by Johnnie on 16 March 2010:

     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?

119. Comment by Arthur on 20 March 2010:

     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.

120. Comment by Cheryl on 21 March 2010:

     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.

121. Comment by William on 21 March 2010:

     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.

122. Comment by Nicole on 23 March 2010:

     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

123. Comment by sss mmm on 28 March 2010:

     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

124. Comment by Stacey on 28 March 2010:

     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’?

125. Comment by lisa on 29 March 2010:

     I used it for migraines..worst thing in my life! I had a miscarriage at 4 1/2 months..my 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.

126. Comment by lisa on 29 March 2010:

     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 effects..you become incapable of functioning…I have had migraines for 25 years..PLEASE DO NOT TAKE THIS THERE ARE OTHER ALTERNATIVES!!!

127. Comment by Robert on 29 March 2010:

     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.

128. Comment by pete on 30 March 2010:

     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.

129. Comment by Jessica on 30 March 2010:

     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.

130. Comment by Teresa on 31 March 2010:

     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.

131. Comment by jon on 3 April 2010:

     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

132. Comment by jon on 3 April 2010:

     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?

133. Comment by April on 3 April 2010:

     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.

134. Comment by jimiallar on 3 April 2010:

     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.

135. Comment by tia on 4 April 2010:

     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

136. Comment by Lisa on 5 April 2010:

     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.

137. Comment by darlena on 7 April 2010:

     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

138. Comment by william on 7 April 2010:

     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

139. Comment by Ashley on 10 April 2010:

     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.

140. Comment by Pelin on 11 April 2010:

     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?

141. Comment by Cathy on 11 April 2010:

     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!

142. Comment by DawnMarie on 12 April 2010:

     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!

143. Comment by MaryAnn on 15 April 2010:

     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.

144. Comment by Laura on 16 April 2010:

     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

145. Comment by Jennifer on 23 April 2010:

     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.

146. Comment by vicki on 26 April 2010:

     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.

147. Comment by jeff on 28 April 2010:

     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.

148. Comment by Marianne on 3 May 2010:

     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.
     TOPAMAX NEEDS TO BE REMOVED FROM THE MARKET AND SHOULD NOT BE PRESCRIBED TO ANYONE EVER AGAIN.

149. Comment by Melody on 7 May 2010:

     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.

150. Comment by antoinette on 19 May 2010:

     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.

151. Comment by Susan on 19 May 2010:

     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.

152. Comment by Vivian on 26 May 2010:

     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

153. Comment by Sharon on 1 June 2010:

     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.

154. Comment by Jeremy on 6 June 2010:

     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!

155. Comment by diana on 9 June 2010:

     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….

156. Comment by Kathleen on 15 June 2010:

     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.

157. Comment by Donna on 17 June 2010:

     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!

158. Comment by kayla on 24 June 2010:

     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.

159. Comment by Wynne on 2 July 2010:

     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.

160. Comment by Wynne on 2 July 2010:

     Also, please read this study:

     http://www.defeatdiabetes.org/Articles/drug030611.htm

     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.

161. Comment by Donna on 4 July 2010:

     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 it..so 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.

162. Comment by Bri on 5 July 2010:

     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.

163. Comment by Jacob on 6 July 2010:

     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.

164. Comment by Julie on 12 July 2010:

     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.

165. Comment by Natalie on 12 July 2010:

     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.

166. Comment by Jennifer on 14 July 2010:

     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.

167. Comment by Krista on 16 July 2010:

     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.

168. Comment by Ravin on 18 July 2010:

     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!

169. Comment by James on 26 July 2010:

     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!

170. Comment by Corey on 30 July 2010:

     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.

171. Comment by Amy on 7 August 2010:

     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.

172. Comment by desmond on 13 August 2010:

     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.

173. Comment by Michele on 13 August 2010:

     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.

174. Comment by khristina on 17 August 2010:

     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 out.plus, 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

175. Comment by Shane on 22 August 2010:

     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.

176. Comment by Chelle on 28 August 2010:

     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.

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