This drug has made my life a living ####… my memory is crap.. I would not recommend this drug to anyone ever…… I had tingling in my fingers and toes and the worst side effect is memory loss!!!

All medications have side affects but I can honestly say if it wasn’t for Topamax and Keppra I would not be alive today. I flat-lined at 18 and am thankful to the wonderful doctors and nurses who saved my life. I am currently 29, have 2 beautiful daughters, all most finished with nursing school, and have been seizure free for 11 years. I carried both children while taking my medication and the doctors monitored my pregnancies very closely. I was very blessed that they both were born healthy and had no birth defects. I’m a true believer that this medication works if used properly, if monitored by a physician, and you have to take the good with a lil bad.

Keep in mind I’m only 16 right now. 2013, my freshman year in high school, I was put on 75 mg of Topamax for my complicated migraines, I used to have absolutely perfect teeth and no problems except for the migraines everyday. Now I have had ovarian cysts (pretty sure I have another right now again), extreme tooth decay (it’s so bad that I will probably have to get lumineers or veneers or even fake teeth, I’m not sure yet what I might need to have my perfect smile again), I didn’t develop Celiac Sprue till I was on it. Also my jaw hurts horribly. Ever since I was put on this medication it has been health problems after health problems. I still have extreme migraines to the point I can’t even get out of bed, so you can imagine going to high school is hard when you can’t get up. I’m 16 years old, I just want to be healthy, happy, and have that great smile again. People used to say I have a Colgate smile, I want that back. Recently, my parents weaned me off of it, because it wasn’t helping anyways also. I’m 16 and I have teeth that look older than my great grandmas, they decayed so fast. They were fine till about October 2014 then by January they looked horrid. February I had my first ovarian cyst rupture, my doctor didn’t think virgins could have ovarian cysts. I don’t remember very much when I was on it, also when I was on it I didn’t remember much before it. Topamax ruined my teeth and only has caused me pain literally.

I was on the generic topamax for about two months. At first just 25 mg and it did nothing to help my migraines so the doctor upped it to 25 mg – 4 X a day. After one month my eyes started hurting so badly and I was in Vegas so thought it was the dry air and smoke. I wear disposable contacts so once home threw them out. I put a new pair in and it was no better. I felt my eyes had something in them and were googy and it was even hard to remove my eye makeup. Worst of all I could not focus too good and developed a halo and double vision in both eyes. It seems to be getting a bit better during the day but it is awful at night. I am hardly driving at night since I have the problem seeing properly. I checked out the side effects and saw it can cause eye problem.. Now what am I to do???? I am so upset since I am single and have to drive…Ugh. This drug is awful since it can do such a job on your body.

i was put on Top-ax several years ago and after a long time, I felt like running down my hallway screaming. I was cutting my self terrible. I wean my self off of them i just couldn’t take it anymore.my nerves have been awful and i have a bad case of memory loss. I cant walk straight and they cant find out why. My hands shake since then awful. It is so embarrassing I have been seeing a counselor and a psychic l ever since then. I cant work, because of the memory loss and the shaking I have to put up with my family saying i am crazy. I wasent like this till i took myself Joy

I cannot believe that this drug has been put our there on the market. It has undoubtably damaged people’s ability to provide for themselves and their family. It’s hard to imagine realizing that you have one medical issue and the medicine that you have been taking to help you has given you another. And this one will end your career, marriage everything because people at work don’t understand why u don’t remember things and your spouse doesn’t get it that it’s not because you don’t care that you don’t remember what they told you yesterday, you cannot retain anything in your memory anymore. But what am I going to do? I have tried every other medicine to control my seizures – what do I do now?

I took topamax for intracranial hypertension because I knew I had to have tried it before surgery would be considered, I was on it at 25mg for 6 days last year, that was as much as I could tolerate, it doubled my symptoms,headache, neck pain, eye pain and more plus I turned into a total zombie, sleeping was hell and it added visual disturbances to the situation (pulse shynchrinous image in field of view of veins at back of eye) worst part is that I had to start wearing a hat around that time to keep my head warm and all this time later it’s been on my head 24/7 because my forehead goes bone cold if I take it off even in very hot weather! I just had a shunt fitted at last after hunting down a surgeon that would do it as I don’t have papilloedema, I hoped having the shunt would help ease the cold forehead, but so far ithas not changed, if I am stuck with a hat on for the rest of my life getting a new job is going to be impossible. His medication long with diamox are both evil, these doctors need to be working out how to test who is suitable for these meds before prescribing them.

There’s so much I want to write right now one that I’m so pissed off knowing that a dr prescribed this aweful medicine to my daughter after what I’m expierencing on it and to be honest I don’t think I’ll ever trust to put her on anything else after all the symptoms I’m going thru. My poor baby. Thank good I quickly got her off it just because I didn’t want her on meds at a young age and she was back home then. But I’m going through severe pins and needles in feet and pain in hands. Ringing of ears constantly of ears. Confusion. Never happened before. I was driving down rd yesterday and I couldn’t figure out where I was. Very scary and worst of all is the depression. In which now I have to be on a depression medication remind you all my medications were all fine until one doctor came in and screwed them all up and now I’m a super mess 🙁

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

Butterfly68, you just described my experience with it to a “tee!” I couldn’t tolerate 75 mg because I just became so ignorant and unfocused, so I’m back to 50 mg, and trying to wean off of it altogether. I currently take Savella with Topamax, so I’ll be keeping the Savella for now. Savella allows me to get out of bed in the morning, although it has it’s own side effects and was horrific to get on (those two weeks were awful!). I also started seeing a chiropractor. I can’t believe how much better that made me feel. I used to take pain pills all day long, and now, I’m down to one dose every few days. Amazing! I hope you find something to feel better soon! Hugs!

Prescribed Topiramate – approx. October 2013 for trigeminal neuralgia. Other meds did not help with pain and made me too drowsy to function or caused other intolerable side effects. This helps with pain – doesn’t take it completely away – makes it tolerable – but also causes cognitive issues – I have problems thinking of words, slower thinking, problems concentrating and memory and also focus. The small plus is yes – it did help me lose some weight – about 20 lbs. that I was having trouble losing – the small positive. It also forced me to increase my water intake to avoid getting kidney stones while on this medication. If I’m not drinking enough water, I notice other side effects like tingling in my feet and also some pin prick chest pains. I also have ADD and this definitely makes those tendencies much worse. I also catch myself repeating words while typing and don’t realize it until I go back and check my work. Do a lot of transposing and sometimes still don’t catch that – almost dyslexic type things. I sometimes slur words or almost stutter words. I am worse when I am under pressure or when I’m nervous. I am currently taking 50 mg 2x per day. In January 2014 I had a flareup of nerve pain where my neurologist prescribed an increase in dosage – at that time I had been taking 75 mg 2x per day and I increased to 100 mg 2x per day and I wasn’t able to tolerate it. I was having bad side effects where it seemed as if my computer keyboard seemed backwards somehow. I could barely focus and it was extremely difficult to think. I backed down since them to the 50mg 2x per day and am thinking of trying to back down more however, my pain is worse as I do. It’s almost just as hard to think with pain in your face, teeth, nose, eye. But it would be nice to not feel as if you know your intelligence is there somewhere but you can’t quite reach it – and to not have people look at you as if they feel (and you feel) as if you’re as dumb as a box of rocks because you are taking so long to try to think of one simple word. Or you can’t remember the last four digits of the phone number someone just told you two seconds ago. Or they are talking too fast for you to write everything down quick enough and you can’t remember it all to take notes. Someone made the comment that their neurologist just blew them off as this was just part of taking the medication – that’s exactly what I got – and I feel like that shouldn’t be enough. Yet – I also feel like they don’t know what to do either when they’ve tried all the other medication there is to try and this is the one that actually works and doesn’t cause chest pains and a rapid heart rate, for example. Dumb as a box of rocks or chest pains? Or falling asleep at the wheel or at the desk at work? Or in excruciating pain? At the moment, the choice is dumb as a box of rocks but trying to find a happy medium – trying to find ways to help offset that somehow – if possible. Would like to also not be in horrible pain. Is that too much to ask? I hope not. Oh – depression is there too. I have to do all I can to fight to keep myself out of that bottomless pit and it hasn’t been easy.

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

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

Its a horrible Drug!!

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

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

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

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

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

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

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

I was prescribed Topamax because of its side effect of curving appetite. I am bipolar (schizoaffective type) and as a dancer when I started gaining weight with taking the Risperidone, my doctor recommended Topamax. She did tell me of the “dopa-max” side effect. I took it for a few months and it was clear that my ability to choose words suffered, especially notable when playing music live and forgetting lyrics — really a first. So I stopped taking it. I found out I was pregnant shortly after this and had to abort as it was discovered the fetus had Anencephaly. It’s been years since this happened and I have moved to a sunnier, less depressing climate and hardly need any medication for my illness anymore. However, I clearly still have the problem of substituting the incorrect word very frequently. Sometimes I notice, sometimes I don’t but others point it out. I would say it happens as frequently as 1-2x per day. This must be related to the Topamax drug. All the other medications I have taken over years never had this effect. I think it should be taken off the market and is a dangerous drug. I’m currently unemployed looking for work, but I am definitely not as sharp as I once was 🙁

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

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

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

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

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

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

I have been on topamax for the past 10 years to treat Epilepsy I have recently changed neurologist’s and my new doc, suggested that seeing as though my last 2 brain scans were normal, we try weaning off the Topamax as this drug has many negative side effects. For years I had wondered why my cognitive functioning had slowed so much, why trying to form a conversation with people or remember simple things was so hard, but now after doing some research on the internet about Topamax and the side effects it all makes so much sense. The question I have is, why wasn’t I made aware of this 10 years ago so that I could make an informed decision as a consumer and as a patient as to wether or not I want to lose all my cognitive functioning to one of the many available anti-convulsant drugs on the market? 10 years on, and I think about university courses I have started, but not finished, things I have wanted to achieve, but haven’t due to the effects this drug has had on my life… Somehow in my case the cons far out weigh the pro’s. Now I know there is current lawsuits in place in regards to birth defecvts that women weren’t made aware of…But what about all of us innocent people that has lost years of memories and cognitive function and were never warned? Where is our lawsuit?

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

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

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

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

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

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

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

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

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

This is the worse medication I have ever been on. The parnoia and forgetting is the worse. I believe forgetting is one of the worse because you can’t remember to even tell your doctor about all your problems and you can’t remember what the side effects are. I don’t know about you but my pharmacy after I’ve gotten the first script they no longer include the list of side effects. I started out on 25mg twice a day. I was on that dose for two months. After the first month I told my nuro I’m having really bad panic attacks he assured me the topirmate would ease them and it hasn’t had a chance to work. The second monthly visit I told him I couldn’t concentrate on anything and was having a hard time remembering stuff, simple stuff. (I drove the the grocery store and just sat in the car couldn’t remember what I was doing. I forgot words. I forgot how to spell words I once used daily I even forgot to pay my bills and I never forget to pay my bills. I have rental property I forgot to cash the rent check had it for almost a month when I finally remembered. Who in the hell forgets they have a check to cash?!?! That was a first for me. As every one mentioned I was in a fog too. Felt like I was going crazy out of control. I couldn’t even concentrade on helping my oldest with her college applications. That upset me the most like I was failing as a mother and couldn’t do anything about it but feel helpless I told the nuro this.) He said that was a cause from my migraines and lets up your dosage “Now you can loose weight!!!” I told him I thought it was this medication he just kept saying no its your migraines causing these problems. He was really trying to sell this drug really makes me think he’s getting paid. The third day of me taking 50mg twice a day I thought I was having a stroke. On the second night I laid in bed and smelled burnt toast got up to check and see what my kids had done. Nothing. Went to work the third day. In the A.M. I seen a black spot move quickly across the floor in my office. I stared at it plain as day like WTF?!?! So I ignore it. Then later on I smell the burnt toast again. I am in a construction site trailer, I’m a government contractor. I share the trailer with only two other people. So I ask them if the burnt anything or if they smelled it. They respond with no, no one had cooked anything and they didn’t smell anything. There also was a time I came home and thought my house stank made my kids clean up I’m talking scrub the trash can. The entire time their telling me I need to get my nose checked. Makes me think it never stunk. Anyways, later that night on the third night laying in bed my vision became jiggly. That freaked me out bad. Earlier that day I did call my nuro I left a message with the staff of my symptons. He never called me back that night. I called the ER spoke with a nurse who told me I should stop taking the medication. I was scared to just stop I didn’t know how the side effects would hurt me from stopping and not weaning off. Next day I was still not right. I didn’t take my dose that night. I did take a 25mg in the morning that originally I was not going to take but had called the nuro office again and spoke with the staff person and I told them I stopped taking the medication she said “Oh, I wouldn’t do that.” so I took the 25 mg cause I was scared to take it and I was scared not to take it. I never spoke with the nuro doc cause he never called me back. I continued to have jiggly eyes and I had pain in my muscles on my left side my left arm and my left leg. There were so many problems. I made an apt with my primary doc when she came in the room I just started balling (crying) I told her I felt crazy and told her all my problems. She thought it was the medication too but sent me for blood work to check me for a chemical imbalance. She had told me to take one bill everyday for a week and then go to one bill every other day for a week and the one bill every other two days for a week then everyother 3 days for a week then to quite. She also tried to call my nuro no luck. Later that day he had a staff member call me to tell me to quite taking the medication all together. He’s a real pos he should have called me the first day I called him. I’m sure he was hoping I’d keep taking the meds and the side effects would fade because when I first started on the 25mg twice a day I called him about my lips going numb he didn’t bother to call me back till a week later on that one and that side effect had pretty much faded. Later I started having the shakes I went to the ER the doctor told me he thought I had a stroke with all my side effects. Came back normal. The doctor told me to get stay off meds and get the chemical imbalance test and told me if its normal to seek pysceatric help. He thought I was fucking crazy but so did I in away. I told my primary I feel crazy but I know I’m not. I never felt crazy before the medication. Anyway a friend of mine whose kid gets treated for mental health told me it will take about two weeks to feel normal after being off the medication. One week for it to get entirely out of your system and another week for your system to go back to the way it was. After I got off the med I did indeed feel the fog in my brain lift and go away. Not completly but I noticed a hughe difference. Also noticed the topirmate gave me headaches more headaces. I had many side effects not all mentioned in here but I did get the dry skin, dry brittle hair. My hair is still dry I started going to Wal-mart and get conditioner treatments once a month. MY BLOOD WORK CAME BACK VITAMIN D DEFICENT I BEEN TAKING VITAMIN D 2000 IU, MAGNESIUM WITH CALICUM EVERY DAY AND MY MIGRAINES ARE GONE!!! I think you have to request this blood test. 25 hydroxy test. When I first went to my primary about my headaches before I started seeing my nuro she checked my blood but didn’t check this till I was a crying mess in her office. She thought I was depressed. I haven’t taken any other medications only my vitamins and its a HUGHE DIFFERENCE. Please check you vitamin levels. I came back on this site because I wanted to share that. Please don’t panic I know its scarey they way this medication can make you feel. Like I said the paranoia is terrible. Plus I think I got some kidney stones ouch my back keeps hurting I have yet to check that out. I hate taking off work cause I missed so much due to the headaches and the side effects from the medication. My nuro even blamed the increase numbness on my neck and back problem it was this topirmate the entire time. This is the devils medication. Makes you sick and you cant remember to really do anything about it. One day I had a freaky dream I was in my bed sleeping and I had a dark shadow to the right of me stareing down at me and I knew it was the devil but before I could even panic I seen GOD at the foot of my bed telling me that everything would be okay and to continue to follow him. I do believe this is the devils medication and I had everyone praying for me at church. My best friend prayed with me, for me. I have found peace of mind and am feeling normal now with the exception of memory problems but thats where I guess we have to learn again and play the card came memory with a deck of cards to strengthen the mind. I pray that everyone on here find peace and that GOD helps everyone of you find that peace and eases your migraine pain. Proverbs 3:5-6 Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Also read Psalms 143. For protection of the devil/demons read Ephesians 6:10-20 You can get through this you will be okay. TRUST IN THE LORD… I’m praying for all of you. GOD be with everyone on this website and help all of you. AMEN

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

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

I’ve been on Topamax for about 5 years, prescribed for mood disorder in combination to treat depression. It was a miracle drug for me at first. Amazing!! But after the generic came out (topirimate ? spelling) I started having problems which I did not directly relate to the medication at first. These included: Tingling in arms, hands Crawly skin feeling in legs and all over body Itchy skin (especially head) Hair loss (now at about 75% hair loss) — still going!!! Skin has become very dry Increased depression and suicidal ideation Weight loss Anorexia, no interest in food 9/10 days Forgetfullness, word finding problems Feel like I’m losing my mind a The more reading I’ve done the more I realize my symptoms were side effects of the GENERIC Topamax. On the real Topamax, I did fine, felt fine: no headaches, no side effects to speak of. But the generic is POISON. I’m going to see a Neurologist to find a new migraine med (I’ve heard Zonegran is good) and get off this poison before it kills me. Oh and I forgot to mention, my special gift, of 6 kidney stones!!! Which the ER doctor said, “ah, of course, everyone knows Topamax causes kidney stones!!” Well, I didn’t know then, but I sure do now.

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

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

It’s not your doctor’s job to know the side effects? Is this person serious? In fact, most pharmacists do not tell you anything, and when I’ve asked about or reported my side effects, I was told to call my doctor because they could not give advice regarding my medication. Doctors also routinely ignore concerns or complaints regarding side effects because they receive kick backs from pharmaceutical companies. I have also asked and been lied to by physicians, or told those side effects never happen or are not permanent. I am on this board because I stopped taking Topamax over 2 years ago and have not seen an improvement in the cognitive impairments that I experienced almost immediately after taking Topamax. The hand tingling and funny tastes subsided; the worrisome side effect is apparently, permanent. I am 26 and cannot remember anything for more than 75 seconds. I mix up words. My reflexes, which used to be lightening sharp, are non-existent. I used to consider testing for MENSA (I know that sounds inflated), and my academic record and abilities seemed to support my own considerations; now I sometimes have trouble formulating sentences that are clear and concise due to confusion and forgetting words. I fumble when I speak, and I find myself having to look up words that were in my regular vocabulary. I just feel slow, and my intellect was one of my greatest and most treasured assets. Topamax isn’t the only drug I’ve experienced devastating side-effects with. The FDA is a joke; they are bought and paid for by companies like Johnson and Johnson, and most doctors are their puppets for 2 reasons: 1. Most people in this country become medical professionals for profit, rather than out of compassion. Shelling out RXs like candy is very profitable, and minimally time consuming. They can get kickbacks for prescribing 100 medications a day, instead of treating 8 people a day for only 100 a pop. 2. Even the legitimate, well-intentioned doctors have hundreds of thousands of school loans to pay off, and simply being a doctor is not as profitable as one would think if you’re not part of what I described above. Of course, there are legitimate reasons for prescribing and taking medication, but the benefits should outweigh the risks and some things are just not suitable for market. No, non life threatening illness would be worth the side effects I’ve experienced. To top it all off, while I do suffer from pre-menstrual related migraines, I was prescribed both drugs that caused such horrible effects for a different illness, and it turned out to be a misdiagnosis (I was diagnosed and medicated after only 10 minutes). I have approached lawyers, but have never heard back. I am just grateful my experiences were nowhere near as bad as some of the others I have read.

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

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

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

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

To SANDRA (from feb) you are sorely misguided in your beliefs about who to place responsibility in. you, it seems, have not faced many seriously adverse side effects from topamax or else, I strongly believe, your story would be different. What I believe you fail to consider is that the doctors and manufacturers who dispense topamax are on the supply of supply and demand. They are just trying to push a product with the least amount of possible damage. Contrary to what you say, doctors should know what all the possible side effects are of any drug they are prescribing. I mean, come on, are you kidding me? A doctor is supposed to know what the ramifications of their treatments are so they can handle their cases responsibly. You utterly speak nonsense. You’re clearly in your own little world. I suffer from bipolar I and am really overweight. My psychiatrist prescribed to me topamax, saying it would work wonders for me. He downplayed the side effects, saying I would most likely experience weight loss, tingling, and other insignificant common side effects. He also said I should drink more water. I went to pharmacist with no real concerns; I asked if I should change my diet or take any precautions; I was just told to drink more water. I checked out the side effects on the information sheet of the medication sheet and was pretty concerned but I TRUSTED my psychiatrist. After all, I thought, HE’S THE EXPERT, I’M NOT. 200mg. After 2 weeks, I was no longer manic, or my mania was subsiding. I began to feel very strange though, it’s almost indescribable. I began reflecting upon my whole life (I’m 23). I began to have new perspectives on my life, like I was waking up from some deep slumber. I began becoming severely depressed after sometime, a month or so. I continued taking topamax because I felt that I would rather be depressed than manic, having barely controlled my mania. Anyway, this whole time I had been taking abilify at 5 mg. my psych decided that topamax was good enough to handle my mania, so he decided to take me off abilify and suggested I monitor my mood and increase my topamax accordingly. Long story sort: I increased my dosage because I was becoming manic again and this triggered a very severe depression. I became suicidal, planned out how I was going to commit suicide, I have been having personality/identity issues since I started this drug and now I feel so flat and detached from my emotions that I’m terrified of continuing another day off treatment. I feel so blank and out of touch with myself, almost like spock from star trek. What angers me the most is how my psychiatrist treated this drug so so lightly despite indicating to me that it is causing severe depression. I am also extremely upset at the way that he downplayed the side effects and I’m extremely upset by his treatment adminstration. He is very disconnected from me.