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.

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.

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.

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.

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.

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

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!

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.

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

I have been on topamax since ’01 taking 400 mg a day for daily chronic migraiines.I have had them for 40 years now (and no Mama that is NO lie),it has been my worst constant companion all these years. I suffered head trauma when i was 9,i will be 50 in Jan. Like all of you, i have “enjoyed” each and every one of these delightful little side effects that topamax has to offer.I especially am enjoying the ones i am just now starting to read about on other sites from other people and getting that “aha” moment.It’s the topamax that is doing that….wonderful,another d—- side effect ! I take the memory one with a little humor as sometimes it can be downright funny at times,looking at something and having NO idea what the heck it is,eating something and its what? And now i have a good excuse why i can’t get the kids names right. I too have enjoyed 20/20 vision all my life but in the last couple months,all of the sudden i can’t seem to see anything clear unless its arms length (at least)away.For a professional photographer,having ones sight go is NOT a good thing.My eyes feel like they are doing this “vibrating” kinda thing,and my left eye twitches(my right eye twitched a lot last year, it has just made the rounds). I plan to go in and talk to mr Dr. as i am up for renewing my prescrip. which i highly doubt i will do,but after reading the other replacements out there,they carry just as bad side effects(if you read up on them). I really didn’t think i would have started having some of these issues(esp. the eye ones)this late into having had used topamax for so long. I would be interested in reading (hearing??) from others who are taking the same amount (400 mg a day) for migs for a lengthy amount of time (at least 5 years).Thanks a lot :o) P.S. to MAMA; Topamax can be prescribed up to 1200 mg for epileptic szs, and other disorders. Also people are describing how this drug is affecting them personally(whether real or imagined)doesn’t matter how much they are embellishing it or not.They are hurting in one way or another and if it helps to just reach out and hope that even someone cares a little with a KIND word and says,” i hope your ok now”,that can’t be too hard now can it? So this i say to all of you;although i sit with my usual migraine,my brain is sort of there(scrambled as it may) i hope things go well for ALL of you and we get thru this storm and find a better med to help.

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.

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.

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.

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.

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.

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

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.

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……

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.

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.

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!

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.

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.

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.

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.

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 🙂

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.

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!

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.

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.

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.

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.

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…..

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.

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?

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.

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.

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.

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.

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.

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????

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!

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)???

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!

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?

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”.

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.

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.

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.

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 %.