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

For me it seemed to work for a while, but then the side effects got worse and worse. I wanted to die after a while, it changed how I acted and felt. I get cluster headaches, unfortunately. They gave me prednisone for 10 days and then Verapamil increasing the dose. Mixed results, it does reduce the severity but doesn’t keep them from happening. Zomig nasal spray as soon as you have an inkling that a headache is coming on… By far the most effective treatment. Super expensive but I have an HMO so it’s included.

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

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.

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.

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

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.

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.

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.

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.

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!

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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….

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!

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.

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

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.

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.

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.

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.

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.

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.

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.

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

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.

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!

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!

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?

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.

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

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

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.

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

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.

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.

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?

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

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.