Topamax and neurologist

I am a 39 year old white female in the nursing profession (RN). I was placed on Topamax at the age of 31 for new onset atypical complex seizures that were later diagnosed as migraine induced drop attacks. I took Topamax for 3 years. I took 100mg a day. My family and I had moved to another state and I had to find another Neurologist. During this time I had many side effects from the medication that I blamed on my "condition." To make a very long story short, while taking Topamax, I developed a kidney stone, severe restless leg syndrome, weight loss, feet tingling, blurred vision, mood swings, slurred speech and mental confusion that went into amnesia. I had to relearn how to drive a car, spell, do 2nd grade math, use a computer, etc...
I now have permanent memory loss. I struggle every day with my memory issues. I have learned tricks of how to deal with it but have not been able to recoup any previously lost cognition. After nearly 6 years of being off the medication I doubt I ever will. I feel inadequate and embarrased with my inability to remember people and things or form normal sentences during a conversation! I know the information is in my head but I can't always pull it forward. Some days are worse than others.
I also have a harder time learning new things. The information just doesn't want to stay "stored" in my brain. (Not a problem patients or doctors want to see in a critical care nurse!)
I hope my experience will save others from suffering the same fate. Use extreme caution taking this medication. It can drastically alter your life.

I finally stopped taking Topamax because of the side effects. But the worst was getting kidney stones from it. I only drink water and drink a lot, but I still got stones. The first time I was in so much pain that I could barely stand it. The second time, I had the pain and with it a kidney stone that was too big to pass. I could barely urinate. Had to have emergency lithotripsy to remove it. The doctor did a CT scan recently and it showed I still have many stones in both kidneys. I can't take another one of these attacks because they are so painful. My neurologist gave me a natural remedy for migraines called Petadolex. This stuff works! It has made my headaches much less severe when I have them which is not very often and my daily low level headaches are gone. This stuff is made in Germany and can be found in most health food stores and pharmacies. It also cost a lot less than Topamax.

When the generic Topamax (topiramate) came out, my insurance company wouldn't cover the real Topamax and it was costing me $400 a month if I wanted it over the generic. The generic was the worst drug I have ever taken. It is NOT the same as Topamax. I got so ill off of it that I had to get back on Topamax. I am finally off of Topamax completely after decreasing the dosage over many weeks. I was on 200 mg a day. I had all the side effects too like tingling hands, cognitive impairment and depression along with some others. This drug is poison and I am so angry the manufacturer didn't state all the possible side effects when they knew damn well it had them. There is a class action lawsuit against this manufacturer for not disclosing some of the horrible side effects.

I began getting debilitating headaches 3 years ago. They were everyday and not the classic headache (no visual, nausea etc). It felt like a jackhammer to the back of my head every single day. My neurologist told me they were migraines. I was skeptical as every other migraine med had not worked. I began on Topamax at 25 mg twice daily. I started at this dose for a month. The body really needs to adjust SLOWLY to this med. My side effects were pins and needles in the hands and feet, strange taste in foods, flat tasting sodas, drastic cut in appetite. My doctor assured me these would go away. Headaches did not start to improve until the second month when I went up to 50mg twice daily. By the third month I was up to 100mg twice daily and I feel like I have my life back. I still will have occasional migraine breakthroughs, but nothing like the misery I had before. Within 5 months or so, food began to taste normal again and the pins and needles stopped. I dropped 30 pounds total on Topamax. It has been a life saver for me!! My advice for anyone thinking about this drug is to ease your way up slowly until your body adjusts. One week on a dose is not enough time.

Ive been on Topamax since for 3 months for migraines and have lost 30 pounds, I simply am not hungry. At this point its not worrisome as I did have a little extra weight to lose, but I cant keep it up forever. My doctor lowered my dose from 100 Mg, to 75 mg, which I split and take 50 mg in the morning and 25 in the evening, it has not made a difference. I had a tremor prior to Topamax, which my neurologist thought would be less with the Topamax but in fact it was increased, so I had to start another drug, Mysoline to counteract the tremor. Ive been on that for about a month and it seems to be helping some, Im at least back to baseline. I recently learned that my potassium level has decreased which is causing muscle cramps and can cause many other more life threatening problems, so please watch out for that! It is a listed, albeit less common side effect of Topamax. (0.4%). You Dr. should have checked basic metabolic panel (BMP) and should check it regularly. Oh, and IM MIGRAINE FREE!

Those of you taking Topamax, you may want to talk to your doctors about trying Zonegran. I took Topamax for "dizzy migraines" and although it worked I had the same side effects you are all mentioning. Although the Zonegran did make me sleepy, if I took it at night I was at least able to function the next day plus no tingling hands or feet which on Topamax was a nightmare. If you decide to stay on Topamax know that Vitamin C helps with the tingling hands and feet very much (my neurologist told me this) and it truly works!

My experience was a seven day short-lived trip through hell on Topamax.

I began experiencing a constant headache for several months in February 2009 (no prior history of headaches). I am healthy 32 y/o male. After multiple MRI's and CT scans came back negative I had a very severe headache that sent me to the ER. The ER helped arrange for me to see a Neurologist, who after patient listening to my laundry list of symptoms concluded I was having migraines (even though I had no sensitivity to light, sound, or nausea). I had been doing a decent amount of research on headaches and didn’t agree that they were migraines but decided, he’s the neurologist, I should trust him. Let me also say at this point, I am not a person looking for a pill to cure my problems, but I was getting desperate as my headaches were ruining my life. I was prescribed Topamax.

I was suppose to start with three days at 25mg, then go to three days at 50mg, and finally up to 100mg per day. The first three days were uneventful when I hit 50mg and then 75mg…I was out of my mind. I read these messages and see people at 400mg with no problems…it makes me cringe to think of dosing that high. I stopped at 75mg…here were my side-effects. Tingling in my face, lips, hands, arms, and fingertips, chest pains (I do have GERD and it jacked up my GERD bad!!!), pain in the back of head, taste confusion (soda tasting flat), and pressure in my eyes and temples…But those are NOTHING compared to the complete feeling of anxiety that over took my body. I had a mild nervous breakdown at work, became paranoid to the point where I was afraid to do routine tasks. And the MUSCLE SPASMS…those are the worst part. I have muscle spasms all over my body, just random fluttering of muscles in my chest, arms, back, neck, head, and face! I became suicidal and had the worst night terrors ever, of things, that I wasn’t even afraid of.

I have been off Topamax cold turkey for four days now and the anxiety has significantly subsided. I have worked through a lot of the anxiety with my wife and I now believe that stress is the cause of my headaches, not migraines like I tried to tell the doctor…but the muscle spasms have not stopped (they have decreased) yet…but I can’t wait for the Topamax to leave my body.

I used to think these messages boards were part of the problem, but they are very helpful. Do your research before you put anything into your body…trust yourself and if you disagree with your doctor, get a second opinion. This has been a life changing event for me.

Health and Happiness to all

I was taking Topamax for about 4 years for chronic/daily migraines. It helped tremendously after I had taken almost everything else with no success. Then I had an episode where I ended up with 5 kidney stones. They passed but my neurologist wanted me off the Topamax in case that was the cause of them. I went off and my headaches came back with a vengeance. I had them daily until I begged my primary care doctor to put me back on Topamax. I honestly would rather have stones than daily headaches. I am a mother to four and have a husband and a job. I can't live with daily migraines. After being back on it for about two weeks the headaches have disappeared. I take 200 mg twice a day. I do have memory loss and loss of words big time. It is VERY frustrating. I feel stupid. But I can live with that. I have tingling cheeks , lips and hands. I'm sensitive to sun and have to wear my sunglasses a lot more now. I now talk in my sleep- a little nervous about that :) I lost weight last time around but haven't yet this time. I am very happy, not sure if that is the RX or just me reacting to not having headaches. I guess you have to weight the side effects with the benefits. The choice is ultimately up to you. Good luck everyone!

I am a 38 year old male suffering from a combination of occipital neuralgia and migraines. For 20 years, until a year ago, i would endure pain that was only manageable with narcotic pain relievers (imagine all the gamut of such kind). I would have neck and head aches typically 3-4 times a week, accompanied by vomiting, dizziness which would put me to bed for the entire day. Work and family suffered in magnitude comparable to my own suffering. So then I finally saw my GP for that. The pain meds went up the roof, imitrex, maxalt was added to the equation with only marginal side effect. I saw a neurologist. He had me do an MRI and put me on Topamax starting from 25 mg, which I upped to 200 mg within 6 weeks. Past the initial side effects, the headaches subsided, the frequency reduced and i was able to enjoy weeks at a time with no episodes. Stayed at 200 mg for 5 months. In the meantime, the MRI came back positive for some brain inflammation. False positive they said, does not fit the clinical picture. Second MRI, same positive, this time proceeded with LP, which was negative. Third, MRI still positive; making the neurologist uncomfortable. While dealing with MRI results, the topomax had yielded positive results as far as pain management was concerned. But little by little I noticed that I was becoming more irritable, more impatient and more forgetful. Someone would have to remind me of something several times before it would even register in my mind. I empathize will all the posts that mention feeling like having Alzheimer's. I didn't care in the meantime. As long as I didn't have to deal with the pain it was ok with me. But the situation became worst and worst. I couldn't concentrate on anything, the mere task of remembering to do something was insurmountable. I would wake in the middle of the night and find myself staring at the bathroom mirror for no reason. I would have terrible panic attacks which i control with valium. But yet i continued on with topamax convincing myself and being convinced by other people around me that i just had a "personality disorder". Finally, work begun to suffer. I was loosing track of meetings, deadlines and when this happens someone knocks on your door (boss) telling you that something just doesn't click, something just doesn't feel like a personality quirk. Other people playing doctor would slap on my face that i just had ADD, that I should take something for that and get on with my life. But something was wrong. Pain or dizziness or lack of concentration etc are all electrochemical processes in your brain. It turns out that topamax was helping my headaches but it was not slowly deteriorating other cognitive abilities. Finally, the neurologist decided I should wean of the topamax, stepping down from 200 - 150 and then we go to 100 and so on. I dread the re-occurrence of the headaches. I am waiting for them to happen again at some point as I drop the dosage. But in the end of the day, I'd rather be in pain and in control of my life rather pain free and absent minded.

I'm 38 years old and I started Topamax in July of 2008 for severe migraines. I've had an average of 12-15 migraines per month since my early 20's and nothing was working. While initially adjusting to Topamax I had the tingling in my hands and feet during the first month but then it went away. My neurologist increased the dose very slowly from 50mg to 100mg to 150 mg. The migraines have decreased in response to each dose increase. At 100 mg the migraines reduced to 10 per month and at 150mg they reduced to 6 per month. My dose is now being raised to 200 mg which the Dr. says is the maximum recommended for treating migraines. The worst side effects I've experienced are extremely dry mouth (from 150 mg+) and slight hair loss. My starting weight was 138 and I lost 11 pounds very gradually before my weight stabilized at 127. I haven't noticed any problems with food or drinks tasting different. For some reason, I always have insomnia for the first week after a dose increase but then it goes away. I've only had mild concentration problems but nothing notable or problematic. So far, the medication has been remarkable and I can't believe what it's like to live life without so much migraine pain! I hope other people can have the same benefits from this medication.

Hi there. A number of years back--maybe 8 or 9 years, I was prescribed Topamax for bulimia and mood swings. I was on a dosage that eventually went as high as 75 or 100 mg. At first it improved my mood and decreased my bingeing, which was very encouraging, but I began to have really awful side effects. First was the cognitive stuff: I couldn't remember people's names and even simple logic puzzles like how to fit a pair of shoes into a shoebox correctly stumped me. Soda tasted flat. Then my moods became somewhat erratic and I began to have intestinal discomfort. Then, even more oddly, my skin started having trouble healing from minor wounds. My hair became brittle and began to fall out. At that point I gave up and stopped the medication. It really felt like I was undergoing some kind of slow poisoning, like arsenic or something.

Now, I've developed migraines and my neurologist has put me on a small dose of 25 mg at bedtime. I've been highly reluctant to acquiesce after my former experience but nothing else has worked and I sometimes have headaches that last over two weeks at a time. I'm wondering if anyone else has experienced side effects at 75 mg but not at 25?

Hopeful in NY

I have had all 5 types of migraines for 30 years. It seems I have had them longer then husbands : ), my children thought it was normal to "go to the ER" or to be in a dark room. I became very good at overcoming the incredible pain and pressure, rising to the top in my profession and being a single parent. I applaud my neurologist & his compassionate assistant. I toughed it out, ultimately, until Topamax came available. I still have migraines. I still must manage all my triggers. And people still don't get that migraines are all consuming and to overcome a migraine to attend a function is huge. However, I am currently, as others, backing off of several medications in a safe manner. My vision is not consistent. I tend to not play games, or read out loud as I cannot see what I used to. When I get up in the morning, my feet are sore. I have a dry mouth when I am speaking. My hands tingle and my ears ring. My gums bleed from pressure. It feels like I have a sinus infection. I have a constant headache and muscle soreness and weakness along with joint pain and low back pain. Having been on 75 mg Topamax since it came out, I no longer have the benefit of weight loss and weight gain is suddenly upon me--suddenly!! I do not wish to influence anyone in his or her choice. Personally, I am considering titrating off Topamax to see if any or all of these health issues change for me. I, too, have memory issues that are not associated with menopause. The problem with the list of side effects is that they could be present with other drug therapies or conditions. Once I have isolated the problems to Topamax, I will then have to weigh the cost of migraines vs. fewer migraines. I must remember to manage all triggers, as I hope others will also. I hope to be migraine free, with the benefit of good vision and better rest. I desire this for the readers of my post as well. Blessings.

Like most of you all I am on Topamax 100mg. I am a 27 year old female that has suffered from severe migraines for over 20 years that would last up to 2-3 days and completely debilitated me. I would bleed from my tear ducts from the extreme pressure and I would need to be in a quiet, cold, closed off room to be left alone until the migraine was gone to continue on with my life. It was ruining my life and taking over my day to day routine. I could never really commit to anything without the constant worry in the back of my mind about a possible migraine until I found Topamax. Now on Topamax I went from 4-5 migraines weekly to 1-2 monthly, it is truly amazing, however there is a catch. Although the medication is wonderful and I will never get off of it at the rate of success that I am at, I do have side effects. I have extreme tingling in my extremities, (hands, feet) along with my face. It feels like they are constantly asleep. I also have noticed the poor tasting carbonating drinks along with my taste buds changing with certain foods that I use to be so fond of. I also have a very smokey haze where it almost feels euphoric if I wake up in the middle of the night. I have horrible nightmares of people that I have not seen in or thought of in years, memory loss and spelling issues-all goes away after 3-4 months of uses. I had shortness of breath, however that subsides as well with the use of the medications along with several other side effects. I have lost over 30lbs that is along with diet, so I can't say it is all Topamax. I have noticed little nodules that have been showing up on my hands since I stared taking the medication that I am in ? about I have a call in to my neurologist to see if he has heard of any such thing. Other than that I love the medication, because if not having migraines is one of the side effects-lol I can handle the side effects. I hope that this will help anyone that might have anything similar to what I am going through. If you can shed some light on my nodule situation please let me know. Thanks

I am a school teacher and got hit in the head by a student and suffered a severe concussion. I was having head swelling when I read, listen to any rhythms or use the computer. I get severe headaches after doing these activities which are most of my job. I am on worker's comp at this time and find that the doctors I had were horrible. The first two months I was on pain killers every six hours and they didn't work. Then I thought finally I thought I would get some relief when I got a neurologist. He put me on Topamax 25 mg the first week and then after 50 mg. He gave me Treximet even though I am allergic to Alleve he refused after that to give me anything for the onset of my migraines. I got really aggressive on Topamax. I was spacey. He then doubled my dose to 100 mg. The Dr. just said I didn't want to go to school even though I was getting worse and worse and could hardly take care of myself. . I was still having head swelling and headaches when I read etc. but my memory was gone and I was ready to throw thing and hurt others. My aggression was worse than when I had several courses of steroids years earlier. There were many times that I couldn't talk in sentences. I would forget what I was doing and also get lost. I was like an Alzheimer's patient. I couldn't get to my thoughts no matter how hard I tried. I have just got off Topamax and can now speak in sentences and the aggression is gone but my memory is still not completely back. I couldn't do simple subtraction or addition. I was better at it in the second grade than on Topamax. I couldn't remember 3 words after about ten minutes only one word. I couldn't draw a simple geometrical figure. I had all the same problems but on Topamax the addition of horrible side effects. The only side effect I could have used and didn't get was weight loss. My parents actually had to come and take care of me because I couldn't fill out the paperwork and also I couldn't even talk and was having fits and tantrums like a child. Thank goodness I had a regular Dr. that knew what was wrong and sent me to get weaned off Topamax. At that time I was told it would take 3 weeks to wean me off and there was no way I could go to school until it was out of my system. I kept telling the neurologist my side effects and even wrote him a letter explaining but he didn't pay any attention and acted like I was making it all up. I asked for a change of worker's comp doctors. He didn't like that at all and now I have to go for psychiatric testing before I go to my new worker's comp neurologist. All I want is to go back to school and to be able to do my job. I would have never had the memory, cognitive, reasoning, or speaking ability to get back to school taking Topamax.

First I want to say, after reading several posts, that it seems a lot of you are taking Topamax without food, which may be causing your "spaciness." My doctor suggested always taking it with food, even though it says with or without food, and I only experienced spaciness the few times I took it at bedtime without food. Once I started taking it with breakfast and dinner, that never happened again.

I am a 48 year old woman, prescribed Topamax in September of 08 for migraine associated vertigo without headaches, with facial numbness. The first thing I noticed was I immediately had headaches, which to me indicated it was dehydrating me as that is the only time I get a "normal" headache. So I knew I had to drink a lot of water. Soon after starting Topamax I developed a dry cough that lasted the entire time I was on the med. I did not relate it to the drug at the time, however. It never even occurred to me. After about two months on the drug I started having trouble breathing with extreme dryness in my airways. I was prescribed an albuterol inhaler which did not help. I was then prescribed a corticosteroid inhaler which also did not help. I thought the trouble breathing was from taking Nadolol which I was prescribed for occasional heart fluttering - the neurologist said this was a normal side effect of Topamax. I stopped taking the Nadolol but the trouble breathing continued. I also had more migraines with vertigo and facial numbness than before I started taking the drug. I hoped it would eventually stop and the drug would kick in to help the vertigo, so I stayed on the drug. I had very minor tingling in my feet, but it was tolerable. I became very stressed out, had trouble sleeping, depression, my face started breaking out in November (and still is), I lost interest in everything that I normally enjoy - reading, photography, following politics in the news (sort of an obsession of mine). In December I was so depressed that for the first time in my 11 year career I started canceling appointments and eventually took three weeks off from work to "re-group." In January the neurologist decided that we would increase the dose from 100 mg to 150 mg for one more month, and if it did not get rid of my migraines with vertigo, we would discontinue the drug. The first day on the increased dose I had a killer headache, and I drank 150 ounces of water before it went away. That night I did not have to go to the bathroom during the night, unheard of for me. That's a lot of water to drink and not have to pee. Within two days of increasing the dose, my cough became much worse, and within three days, the breathing became more difficult. Within five days, I was having trouble speaking because my airways felt so dry. I called the doctor the next morning and he said it was not the drug, but if I wanted to, stop taking it. So I went off it cold turkey, per his instructions. I had rebound migraines every day for a week or two and my heart was pounding, sometimes for three or four hours at a time. Eventually the cough and trouble breathing went away, however, I had to continue drinking lots of water or I would notice that I didn't have to urinate, sometimes not at all. Again, unheard of for me. I saw a cardiologist at the neurologist's urging and they said the heart pounding was just anxiety. I disagree, as did another doctor of mine. We both believe it was withdrawal. I have now found out (by getting copies of my medical records) that the neurologist is now attributing all of my side effects from the Topamax to "somatization." In other words, psychosomatic - not a side effect, but just a way of getting medical attention. I am seeing a few people on this board who have also experienced a dry cough and trouble breathing. Can I have the same side effects as other people and have them still be psychosomatic, even though I had no idea those side effects could occur? I don't think so.

I have a theory that Topamax interferes with hormones which causes a lot of the side effects like lack of concentration, memory loss, anxiety, depression, insomnia, acne, and hair loss - all symptoms of peri-menopause and menopause. Ask any woman in her 40's or 50's if she has these symptoms and most of them will say yes. My face has not been this broken out since high school! My hair is falling out at a rapid rate. I won't even bother mentioning these to the neurologist. He'll just say it's not the drug.

I'm very frustrated and not sure what to do at this point. The neurologist has me taking a supplement called Migrelief now, but I think it takes three months to kick in, so I have no relief at this point.

Has anyone else experienced the trouble breathing with dry cough? I don't believe for a moment that it was psychosomatic.

I am a 25 year old graduate student that began taking Topamax for migraines after I was involved in a bad car accident. I started taking Topamax in April of 2008 and by July I could barely formulate sentences, couldn't remember simple things like where I parked by car (in front of my apartment) and my family member's names, simple math was impossible, I was always tired but could never go to sleep, had numbness in hands and feet, and was very moody with suicidal ideations. I was then referred to a neuropsychologist to assess any possible brain damage from the accident since I was now having cognitive problems. They tested me for brain damage where I was diagnosed with Severe Brain Damage, I was reading on a 8th grade level, did math on a 4th grade level, needed to begin speech therapy immediately and my doctor felt I needed direct supervision at all times. I was initially told by my neurologist that the medicine would help with the migraines but would "make my thinking slow". That was a huge understatement. I was a 4.0 graduate student in the middle of my program and I suddenly couldn't perform basic daily activities. I have been doing much better since coming off the medication. I have the migraines less frequently but they are still pretty bad. I have regained most of memory, reading, and math skills back the rest is attributed to the car accident. I wouldn't recommend this medication to anyone and I think it should be taken off the market because it almost destroyed my life and had me and my family worried to death about a condition which symptoms were clearly being exacerbated by Topamax.

I'm a 38 year old female who took Topamax back in 2003 as a migraine preventative. I don't remember any diminished brain capacity, forgetfulness, etc., but then I also suffer from ADD, so who would know. Anyway, I don't see this particular side affect with anyone, but exactly 72 hours after starting Topamax, then 72 hours after each dosage increase, I would suffer from severe body aches. The worst I've ever felt in my life and I usually get body aches with the flu.......these were much worse. If I remember correctly they would last for several days then gradually fade away. The Topamax didn't seem to help my migraines because six months later the neurologist switched me to something else. I'm seeing a new neurologist now and he wants me to try Topamax again. I'm worried and stressed beyond belief. I don't want to go through the body aches again. Has anyone else experience this? Am I maybe deficient in something that I could beef up on while taking the Topamax to decrease the body aches side affect?

sd

My 13 year old son took Topamax for 5 months for migraine prevention. The day he started taking it, the migraines stopped. We thought it was a miracle drug. After 2 months he was experiencing nausea and stomach aches for a couple days at a time. These then increased to 5 or six days of nausea and a couple days of feeling fine. He was prescribed medication to help with the nausea but nothing worked. On the fifth month he was in bed for 22 days straight. The neurologist didn't think it was the Topamax, but I insisted he be weaned off. After 8 days of no Topamax, the nausea finally stopped, the migraines returned. The migraines are more manageable than the constant nausea. So no more Topamax!

I have been on Topamax for about two years for migraines, and was very pleased that after the first month or two, most of the noticeable side effects (dizziness, flat-tasting soda, etc.) disappeared, and the Topamax has been very effective in cutting my migraines in half. However, I've recently begun to question whether other health problems I've been experiencing are actually Topamax side effects and I just didn't realize it.

The first is intermittent stomach troubles that have been ongoing for the last year. Starting last January, I started experiencing diarrhea, stomach pain, and other persistent gastrointestinal problems, and through online research, I decided that it was probably either a spastic colon or Irritable Bowel Syndrome. I lost 15-20 lbs. in the spring and summer, but the problems would always recede before I took them to my doctor, then resurface just long enough to irritate me before disappearing again. It never occurred to me until recently that these could be Topamax side effects.

The other possible side effect that I assumed was an unrelated problem is interruptions to my sleep pattern. I have been experiencing some occasional bouts of sleep paralysis, and which researching this, read that in normal sleep patterns, one is supposed to enter REM sleep (when dreaming occurs) after about 90 minutes. I frequently enter into dream sleep in as short as a 20-30 minute nap, which does not seem to be normal. Again, researching this, the only two explanations that came up were narcolepsy, which I obviously do not have, and that my normal sleep patterns are being interrupted "by medication." So I'm back to wondering if it's the Topamax. Has anyone experienced similar sleep symptoms?

I am a 21 year old female and have been on Topamax since October of 2006. I am up to taking 250mgs a day having a constant headache and getting a migraine about every week. I have had such a range of side effects and symptoms that I can't tell the difference nor know where to begin. The most recent is muscle spasms in my eye lid and leg that won't go away. I have spasms infrequently all over, but these have been pretty constant. I also tire very easily though I always get 8 hours of sleep a night. Though those are not always 8 full hours of sleep, because I do have boughts of insomnia. I have also dealt with the intestinal problems to the point of thinking that I had appendicitis. I have had multiple trips to the hospital for abdominal pain and severe migraines. I have had the vision problems - blurred, dizziness, vertigo, and the weird one were my eyes jerk back and forth. I rarely have all at once and they have come and gone throughout the 2 years, but they have come back

I think the most mysterious one of all are the lypomahs - these little painful nodules under the skin that just appeared. They are mostly on my abdomen, but have found them on my chest as well. Any one else heard of this?

Nov 5 2008
I have been taking topamax since april of 2008, about 6 months now. Just recently I was increased from 50mg to 75mg for my migraines. I have short term memory loss, nausea, no appetite at all, shortness of breath, trouble sleeping, and all of a sudden terrible anxiety and panic attacks which started out of no where. I feel like my heart is beating out of my chest and I am going to die. It is horrible I cant stand it. I went to the ER and got the standard tests and they said my heart was fine and to follow up with my regular Doctor. No matter what I do I cant calm my self down it is just aweful. I am not sure I can live with these side effects, its too muc

Hi all...I've been taking 25mg. of Topamax at night for 5 days now. Unlike most of you I have not experienced the tingling in the extremities or the weird taste in the mouth or even much tiredness at all other than what has happened as a result of my weird side effect. I was prescribed Topamax by my neurologist for my migraines. I've had them since I was 12 years old. I'm 49 years old. The got worse during peri-menopause which is kinda normal given the hormonal fluctuations, but was told by my neurologist that they would very likely subside significantly when I became menopausal. Well folks, I've been menopausal for 5 years and for the past 2 years my migraines have been the most horrific of my life. I have approx. 15 to 18 migraine days a month, some of the headaches lasting 3 bloody days. So it comes to this...Topamax. In the past I have suffered some pretty rare side effects from some very benign medications so I guess I shouldn't really be surprised that this is happening to me now. The first night I took it I slept like a baby. The second night I was slightly 'hyper' but managed to get to sleep. But for the past 3 nights it's been hell. When I lie down in bed, my body feels as though there are electric currents shooting through it and coming out my right leg. I have to move my right leg or go completely bonkers. Fortunately my daughter is away at university and so I can sleep in her room. So I lie there...on my left side...with my right leg hanging over the side of the bed swinging and swinging and swinging as hard as I can just so that I don't scream. It's awful. Last night was the worst. I saw dawn this morning. I just got off the phone with my pharmacist and he told me that I had described a classic case of RLS - Restless Leg Syndrome. And guess what? Topamax is used to trest RLS!! For bleep's sake! So nice people I am suffering a completely opposite side effect to the one that seems to be the most common one...tiredness. Has anyone else heard of this? Experienced this? It seems to all focus down to my right hip and leg. I have to move it vigourously or go nuts. I am so tired today but that's because I got like 3 hours sleep. I fell asleep from sheer exhaustion after my husband left for work at 7:30am.
A side note...I also take 75mg of Effexor for panic disorder and my neurologist told me that this is a very good mix of meds for migraine prevention. My top dosage for the Topamax will be 75mg taken at night.
I'd really appreciate any feedback on my side effect. Thanks in advance.

D.

I was only on 25 mg of Topamax for two months and had to stop due to the terrible side effects of mouth numbness, taste aversion and severe dry mouth. Unfortunately, the side effects have gotten worse and persisted now for six months after going off this medication. My personal thoughts: Topamax is the worst drug on the market, has negatively impacted my life, and my neurologist could care less. These symptoms are with me 24/7 and only mildly helped by expensive mouthwash and lozenges specially formulated for dry mouth. Actually, eating certain foods makes these symptoms worse and I am afraid this is permanent, but can find no scientifically plausible evidence to explain such lingering effects. If anybody else has experienced such long-term symptoms after going off this medication, please share.

I was started on Topamax late 2007 after a week long migraine that did not respond to my usual migraine medication, Relpax 40mg and Xanax 1mg and I needed the second dose 2 hours later. I was given samples of Topamax 25 mg with a schedule to slowly increase the dose. The first 3 days I noticed an improvement in my migraine. By the 4th day, I started coughing. As I increased the dosage of Topamax, my coughing got worse and more frequently. I had to return to the doctor a week later for the cough. I thought I had been exposed to bronchitis because I had worked in the church nursery.
However, the doctor heard a wheeze with my cough and stated I had asthma. This came as quite a surprise because I have never had any lung problems or asthma problems and I am 52 years old. I was referred to a pulmonologist who put me on 2 inhalers (one steroid, one rescue inhaler, nebulizer treatments, chest x-ray, Oxygen to be used a night.
I was still having severe coughing spells every time I moved or tried to talk. I would have to run to the bathroom every time I started to cough because the coughing was so violent that I experienced severe urinary incontinence every time I coughed. I checked the internet and with my pharmacist, both stated that developing a cough was very common with Topamax. After learning this, I slowly reduced the Topamax until I could stop using it. As I was reducing the Topamax, my cough started to decrease. When I mentioned to my doctor about my problems with Topamax, he stated that Topamax did not have any respiratory side effects. I had a brochure from his office for Topamax that stated Topamax should be used with caution with people with lung or asthma problems.
I am now taking 800mg of Magnesium, CoEnzyme 100mg, and Vitamin B 2 100mg twice a day as a preventative. These supplements were prescribed by my neurologist. Since starting these supplements, my number of migraines has decreased.
Kay/redpoppies

I started right out 3 years ago on 100 mgs. and within a couple weeks migraines were virtually gone! I thought it was a miracle! Only slight side affects for a couple years and only an occasional migraine but not a three day long one. So, I figure, small price to pay for all that relief, right? Now, for the last 6 months or so I'm falling apart! My memory is just gone! Sometimes I'm afraid to leave my house because I'm afraid I'll forget my way back home! I can hardly concentrate long enough to put a meal together and it just took me 4 tries to remember how to spell concentrate! Thank Goodness for spellcheck! I've lost 42 lbs. that I can ill afford to lose and I now I have started to have these anxiety things that I've never had before. I feel scared and nervous and no idea why. I was on a couple of drugs for allergies, a couple for arthritis and a vitamin. I dropped everything except the Topamax and the DR. put me on a 1/2 mg. Zanax twice daily for anxiety which seems to do nothing except make me sleepy. Now it seems all these side affects have just bloomed and I have this constant ache over my right eye which isn't a migraine but never goes away. I'm afraid to just stop the topamax because of what I've read about suddenly stopping. Doctors are no help, they won't even admit there is a problem. They just wanted to check my thyroid.It was fine.

I am almost 41, and have had migraine headaches most of my life which I could manage with 800mg of Naproxen Sodium, or a Norgesic Forte, and when Imitrex came out, I could just administer that. Six months ago, my headaches got so frequent that I had to start taking my Relpax (similar to Imitrex) and/or Fioricet more than 2X per week. According to my neurologist, this is a no no, as both of those meds can couse rebound headaches. He started me on Topamax, 50mg per day. It did nothing. He bumped it to a 100, nothing. Now I'm a 200 mgs, I am still have a migraine in left temple as I write this. I have the tingling, the daytime sleepiness, but my mind is fine, and my appetite is just swell (regretfully). What the hell am I going to do now? Ask him to bump me up to 400 mg? Now I have these headaches every "F"ing day, and I can't take anything. I just have to suffer.

Topamax is NOT working!!!!!

Initially, numbness and tingling in extremities which subsided, but memory loss and loss for words is very uncomfortable, and my neurologist suggested caffeine every AM to compensate, which helps some, but not enough. Difficulty reaching orgasm has become very frustrating as a side effect, but is better than the horrible headaches every day. What a choice!!1

Hello, I started taking Topamax a year and a half ago for my migraines ( I was getting them almost daily- still am). My neurologist started me out at the normal dose of 25 mg a day and kept raising it up until I was at 100mg twice a day at which point I just quit taking it because I felt like it was just making things worse. Anyway, in the beginning, I did lose my appetite and things tasted terrible... especially carbonated beverages. I lost probably 15lbs. I quit taking the topamax for about 6 months and gained about 20lbs. I just started taking it again about 2 weeks ago and my appetite has actually increased. Has anyone else experienced this? I am hungry all of the time. I did not have a problem concentrating or remembering things last time but this time I do. Funny how it effects you differently each time you take it...

I thought I had sinuses for years..got test for allergies and was founded to be allergic to nothing! Despite having at least 3 infections a year and on my 3rd nose spray, zyrtec, nyquil at night..ect..because I was contantly congested and had drainage & headaches..3-4 infections a year.. She ordered a cat scan and was told that my sinuses had spurs but was clear; my septum was severely deviated and I needed a ENT to have surgery to correct it...The ENT wanted to do major surgery which included a plastic surgeon... so I went for a second opinion to another ENT that was well known who told me I had rebound headaches..and referred me to a neurologist..my goal was to get off all the meds (nose sprays, nettie pot, antihistamines..nyquil..ect..) ..he was a dinosaur and was convinced that although I had a severe deviated septum~he didnt want to do surgery but wanted me to stop all meds I was on and to go to his neurologist that he liked *(another dinosaur) who put me on Topamax..50mg in the morning and 50 mg at night..I had panic attacks right away so he added 20 mg of klonopin at night to help with that and flexeril to help me relax...he hinted at me going to a pysch doctor which pissed me off right as if I was psychosomatic or something... and stiffled me a few times when I tried to talk to him about my drainage and congestion~he wanted to hear none of that because he already made his mind up what I had and "sinuses" didn't jive with his impression that I had migraines.

All of the sudden within days I really did have migraines..they just hit me! HARD...I had to call him and tell him I was in excruciating pain on the right side...he called in Imitrex inj. and they worked within 5 min. and my Topamax went from 100 mg total > 250 mg/day! I had at least 6 shots since and the side effects of the Topamax have profoundly changed my personality...I have no word recall..like being stoned in the 70's but worse because I have a special needs child and I need to engage her and am like a zombie! I have ALL the same sx that are mentioned but notice one that isnt noted which is my tongue is raw as well as my throat...all the way down into my stomach...I am having to take zantac for acid indigestion~it is like my insides are raw!
I am also having extreme constipation...I lost weight in the first 2 mos. where I couldn't eat nothing..but now I am eating cause it's there but it is not leaving me even when I take multiply doses of my old standby... I am drinking tons of water..at least 64 oz a day but it is not helping. My eyes are burning at times...I need my reading glasses all the time now. Some days my heart is beating out of my chest for no reason..at rest..I just feel ill like something is not right at all! I don't go nowhere & have become a hermit. My headaches are gone but I feel I am just a shell of a person and want to get off...I am slowly weaning off by doing it 25mg at a time for one week at a time....then another 25mg another week......I know I will have migraines but I will just bite the bullet and suffer through it till I am off this poison....I have some injections left..MY main goal was to be off meds and these side effects are horrible! Once I am completely off I am going to a good ENT that can do the surgery to fix my sinuses so that I can hopefully be drug free as I intended. I too wasn't told of these side effects at all. So much time & $$$$ wasted! I think if I stay on this too much longer it will truly do long term harm!

I started Topamax in November of 2007 the usual 25mg and worked my way up to 150mg. I have always had pretty thick hair and now have hair loss in the widows peak and top part of my hair. Needless to say I am devastated. I have cut myself down to 50mg in the am and 50 mg in the pm. My Neurologist states that she has not heard of hair loss but even this web site and the drug company states that it can cause hair loss. I have with the help of a very good massage therapist determined that my migraines are cervical so I am seeking a second opinion and taking myself off this drug. Not worth the hair loss if I don't need to be on this drug.

Ive suffered from migraines for about 5 years and never done anything about it until i seen a neurologist and found out i had a brain cyst. (not deadly) She prescribed me to topamax for migraines and immediately i started feeling change, i was moody and had no appetite, memory loss, chest/heart pain, short breath, paranoia, angry all the time, would cry at the drop of a hat, couldent concentrate, dizziness and it felt like a cloud was over my brain, i felt nothing all the time.

Ive never been suicidal and one day i lost it, i felt like everything out of me had been drained and it would just be such a relief to die right then. It was the worst 3 hours of my life, trying not to kill myself because i knew it was the topamax doing this. Definitely scared off it now, do not want that to happen again

I have been taking Topamax for about 6 months now. I have been on several different everyday medications for migraine prevention and Topamax has been the best one. I was first prescribed Relpax to help relieve the headaches. I eventually got to a point where I was getting migraines every day/every other day (insurance only covers 12 pills per 20 days). I was later switched to Imitrex - which is MUCH more effective (1 100mg tablet) but my insurance only covers 9 pills per 30 days (unbelievable).

Just wanted to give you guys some background on my situation. I have been through 2 MRIs and a CAT scan, visited a neurologist, done 2 sleep studies, spent 2 months on a breathing machine for possible sleep apnea causing migraines. My family doctor, my neurologist, everyone I saw was unable to determine the cause of my migraines.

THE GOOD NEWS is I was referred to an UPPER CERVICAL SPECIALIST by my old chiropractor. This may not sound believable but my headaches have decreased to about 2-3 per month since I've been treated by my new chiropractor. My old chiropractor was the type who did a complete adjustment on my spine/hips and cracked my neck both ways every time I visited. The upper cervical specialist focuses on C1-C2 vertebrae and uses calculated heat readings to determine where there is inflammation and there is no twisting/turning involved. Look up upper cervical chiropractic on google and see if these treatments will help with any of your headaches. It has helped my situation dramatically and I will continue seeing this specialist and probably come off of the topamax in the next few weeks.

I posted this on Mar 15th regarding my experience with Topamax...

I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

Since then, here is an updated on my side effects and what has been found by my doctors. I really hope this helps someone since this was very devastating for me. It got so bad I had to go on Medical Leave from work due to the side effects.

I had 10 tests run on my blood and tests and pictures done on my heart and everything checked out to be normal. Apparently since this medicine messes with the chemicals in your brain, it also has the capability of turning on anxiety, depression, panic attacks, etc. My primary care doctor, my neurologist, my cardiologist and a stated licensed counselor/therapist all have diagnosed me with anxiety leading up to panic attacks. Basically what I was told by my counselor was that my level of anxiety in my brain was turned on so high, it didn't know to come back down after I stopped the medicine. Now anything can set it off and it's quickly escalates into a panic attack without control. I was so bad that I was having anxiety/panic attacks about merging into traffic, going to work, going through the drive thru at McDonald's, going to WalMart and just anything in general. I started a medicine that controls anxiety and I have been on it for a week. Although I still get anxiety, I am able to control it and it's not escalating into the panic attacks. The best thing is with this type of medicine is that it can take "a couple of weeks" before it's built up into my system, so this should take care of it. I was advised with some counseling to learn how to control my anxiety and some medicine, this can be taken care of. I just have to allow my brain to get the levels of anxiety back down to normal levels and then I can eventually stop taking the medicine.

I started Topamax a month ago. My neurologist told me to start out taking 50mg in the morning and evening. I am a nurse and have read that this med needs to be started out on small doses and slowly increase every few days. When I questioned him about it, I was told that I should be fine. Although I did not follow his directions and start out small and increase it every 3 days. After about a week I was on the full dose of 100mg daily. All carbonated drinks tasted flat, I was having a funny taste in my mouth, and I was sleeping more. Within the past week, I have been having numbness in my hands and feet to the point that my hands go completely numb. The tighter I tried to grip something, the worse it got. I also am having severe dizziness. I am unable to stand and walk without feeling like I'm going to get sick and fall. Forget trying to drive. I work 45 mins away and have no other option on getting to work. During the time that I have started to have the dizziness, I have also noticed a drop in my blood pressure. I do not even have to be standing or moving to have the vertigo start, I can be laying down. When I called the Dr, I was told to abruptly stop the med. No weaning. Everything I can pretty much deal with but, my main concern is the severe vertigo (dizziness) and low blood pressure. Is anyone else having this issue?

I had what I thought was a sinus infection for three months, I was treated with various antibiotics and Prednisone. Finally a CT Scan was done and I had clear sinuses. I was having pain/tingling under my eyes, extreme tension in my cheeks, jaw, neck and shoulders. It turned out that I was having "involuntary muscle contractions" related to the medication. I had to take muscle relaxers for several days after getting off Topamax. It has been 3 months since I've been off and I am still having some tingling/discomfort under my eyes. I am seeing a neurologist soon to see if this is permanent nerve damage.

Here is the link to the information about vitamin deficiency and medications. You can search different types of meds so I hope it is helpful...this is where I was able to go through and figure out which vitamins would be useful for me to take to help with the side effects. Now this is good because these are vitamins that Topamax is absorbing ouot of your body so all you are doing is replenishing it into your body to help prevent the side effects. The only side effects that I couldn't really find a vitamin for was the eye strain (and after asking the pharmacist she said that is a nerve thing so there wouldn't be anything) if you are having that, and the weight loss. Hope this is helpful. I have been searching since my first post hoping I could find the link...

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I have been on Topamax for the last year for migraines but during the same time period, started having problems with my eyes. I thought it was an infection from my contacts so I stopped wearing them plus my eye make up. I have been to 5 doctors and they all seem to think it's "Dry Eye Syndrome" and I have been having them insert plugs into my tear ducts and I am constantly putting lubricant drops in my eyes to relieve the burning and itching. It dawned on me this weekend that this All started the same time I was prescribed this medication. I have stopped the pills since Fri.

My question to all: Does Anybody have been having similar problems and will it go away or is the damage done?? Will the doctor.s admit to knowing anything?
Thank you!

I was doing just fine taking 50 mg of Topamax but I was still having minor headaches. My doctor said to go to a neurologist because there may be a tumor to worry about. He doubled my morning dosage and added an evening dosage so now I am taking 200 mg. a day. I started the insanity on Friday. By Monday i went grocery shopping and couldn't remember what I was shopping for. Thank God i brought my husband with me...when I could remember that he was with me. And then when I remembered to ask him what we came for I needed to remember where it was. Upon returning home I offered to help my 7 year old grand daughter with her spelling homework. Do you how embarrassing it is to not remember how to spell first grade spelling words? Tuesday was Mardi Gras and we went to the movies so I was saved any further mind questions. Then along comes Wednesday and I returned to work. Well, I tried to get to work. I got lost. Here I was at Walgreen's trying to figure out what I was doing out at 6:00 in the morning. What day was it? The looks on other's faces when you ask them these question is not something funny. So, I get back in my car and aim in the direction I hope is work. Luckily, I remember where I habitually stop for breakfast. My memory comes back again and I make it to work. I am on time and all is well. Now, the day begins.

I haven't had a period since December. Here it is February. And no, I am NOT pregnant. I can't concentrate. I ate 2 chicken nuggets for lunch and am full (now that is a healthy lunch, huh?). I was addicted to Dr. Pepper and now can't even stand the smell of it. I can't walk and chew gum at the same time. I found a note that I wrote sometime yesterday that really scares me because I don't remember writing it. It says, " Headache @ 1:55 no known trigger jut sudden movement to pick up papers from bin over desk. Nausea as well. Need to go to sleep forever." Good feeling to have? Depression is kicking in.

I just called my doctor and he says decrease the medication down to 100 mg. Ummmm...How about I decrease it down to 0 mg and I take a Imitrex or 2 and a hot bath with a nap when I get home and live to see my grandchildren grow old! I think living with a migraine or 50 is far better than what I have been feeling this past week.

If anyone can tell me that it gets better in less than 2 weeks I will stay with it but 1 more week of this and I will be a patient in a mental hospital. I can't even play Nintendo with my grandson...NOW THAT IS DEPRESSING!

I'm a 26 year old female and I've been on Topamax since March 2007. It has completely gotten rid of the debilitating headaches I experienced 3-6 times a week. It also got rid of my anxiety. I got my life back, my antidepressant kicked in at the same time. I experienced all the usual side-effects, tingling hands and feet, forgetting words, memory problems, loss of appetite, but was COMPLETELY pain-free. I still am. However, I never remember anything now, forget whether or not I did something, paid my bills, etc, lose things constantly, and I have lost about 20 lbs. Not good. I look anorexic. I have bones sticking out. Eating is hard. I forget to eat and drink all day and food is just unappealing. I feel fuzzy and stupid and slow. Not sharp like I used to be. It has killed my confidence and self-esteem. But I was wondering if any women out there got yeast infections while they were on Topamax. I've had one monthly since I started it, and my doc said it's a rare side effect. Oh yeah, I've had mild hair loss and mild to moderate acne now. This drug, it is such a 50-50. Living with chronic pain, those headaches were awful. But doubting yourself is awful too. Anyone have similar experiences?

Hi All, I am a 37 year old mother of 4, with a history of severe Hemiplegic migraines (up to 14 a month). I've been on Verapamil and Topamax for 7-8 months with a gradual increase of the Topamax to 150 mg a day. Before I start writing this I have to preface it with two things: First, Before Topamax I was one of those women my friends refer to as a "Supermom", I home school my kids and used to love it, we normally have a lot of fun and I have a successful, happy marriage. Second, on Topamax, I went from 14 migraines a month to 0. It didn't happen over night, they went away as we ramped up the dosage, but for the last few months I have had no migraines, I can feel it occasionally when my head is fighting one off, but nothing an Advil won't stop, and for those of us who've lived with trying to care for kids while having migraines (especially Hemiplegic) you may understand why I initially put up with the following: I started out with the tingling in my hands and feet (that went away in a couple of months), word finding difficulties (which never really went away, I just learned to accept it),occasional blurred vision which never lasts very long but which has been an issue the entire time I've been on the med, and weight loss ...I am 5'4" and was only 118 lbs to start with, and have nearly "disappeared" into a size 0 and 105 lbs, and it doesn't matter how much I eat, I've been trying 3 meals, snacks, cookies, candy, you name it, I can't gain weight. I was never nauseous, no diarrhea, I just don't get hungry... I had to start wearing a watch at one point to remind myself to feed the kids, because if they didn't ask, they weren't getting lunch until 2:00 because I wasn't getting hungry! Soda does taste like metal (fortunately I don't drink it normally anyway), and you do get loopy with one glass of anything alcoholic.
Then to add to the lovely appearance of skin and bones, my hair is falling out. Before Topamax I worked out regularly, I am even on commercials for my gym (recorded a year ago), since Topamax, I was so tired, depressed, and so afraid of losing weight that I stopped working out. Now a woman who has always made it a goal to set a good example for my daughters that a fit body is the goal, not a thin body, has her mother in law telling her that she looks "bulimic"! In August I noticed I was crying a lot, then I thought well, maybe it's the Topamax, so I started drinking more water and it went away... so I've been very careful to drink A LOT of water and only decaf tea while on this med, but apparently that wasn't enough, because a few weeks ago my husband pointed out that I stopped showering every day. I have been crying at the drop of a hat for a couple of months again, and I have never been someone to cry in public, I have even started crying in front of my daughters friends' mothers and near tears in front of her teacher over the littlest things... then last weekend I found myself with four hours to myself in my house for the first time in months and I was thinking about how I might be able to use it for unspeakable things like running away, or worse... if those aren't signs of a pretty severe depression I don't know what are, fortunately I recognized them and put them together with the memory problems, etc. As for the memory loss, there have been problems with that for months as well, my daughter has been telling me I "have a bad rememberer" , This weekend everything culminated and other people were recognizing the memory issues that I had been keeping private until now (including my husband). Before that, I would be in the kitchen cooking and forget what I was doing, I went to drive to a party this weekend and forgot where I was going, so I called a friends husband and he had to tell me four times where to go before I could retain it (at first he thought I was joking) and then I still couldn't remember the name of the place, only the # and street, I haven't been able to remember routes to places I used to drive... I'll find myself sitting at a light not sure where to go, and making mistakes with our money because I forgot whether I did or didn't pay a bill (something I've never done, we have always had excellent credit). On Topamax I went from feeling like an attractive, successful, good mom,with a happy family... to constantly stressed, even by things I had previously enjoyed doing, and a completely depressed failure... but I had no migraines. I have now been weaning off the Topamax for a few days. I was playing phone tag with my neurologist... so due to the urgency of the problem I took myself down to 100 mg a day. I have since spoken with my neurologist and I am going off of it completely... by the way don't ever discontinue this med without ramping off of it, doing so can cause a seizure. I am unbelievably grateful that I put 2 and 2 together the weekend I had time to myself and got lost going to the party and I already feel more awake, less tearful and depressed... I know that things will be ok anyway. I hope that anyone reading this who is having memory or emotional issues on Topamax and just brushing them aside (because they don't want to risk going back to the migraines or whatever), will get off this med. Please realize that this med could have cost me, my kids and my husband a lot more than my migraines ever will. I have never experienced depression before Topamax, and I can't say that I'm completely back to myself yet, but I hope that when I am off this med I will find normal again, and I pray it will be without migraines, but I know that I wouldn't wish these past few months that I've put myself and my family through on anyone. Now, I need to go take a shower :) , then I'm going to my neurologist to pick up some 25 mg samples to continue ramping off! Good luck to you all!

After using Topamax for a week and two days for migraine prevention, I pretty much went blind. I went from having 20/20 vision to -6 in a matter of hours. I was diagnosed with Acute Induced Myopia, a "rare" side effect of topiate drugs. It was prehaps one of the most frightening experiences of my life. While this side effect is widely documented online and in numerous neurolical and other health journals, my neurologist failed to mention the possibility to me. From what I've learned, this is a fairly common, yet reversible side effect, and is found mostly in women ranging in age from 25-50, if topamax isn't stopped immediately, it can result in permanent glaucoma. In 2001 the World Health Organization released a warning describing this side effect and urged medical professionals to discuss it with their clients prior to taking the drug. Apparently my neurolgist missed that memo. Now, three days later my vision has returned to 20/20- much to the surprise of my new opthamologist (never needed one before). I urge everyone who takes Topamax to pay very careful attention to their vision and stop taking the drug if any decrease in vision or blurrieness occurs. I'd hate to see anyone cause themselves permanent damage.

I'm on my first month of Topamax and going to work for the first time in two weeks! Someone mentioned feeling like a box of rocks on this stuff, its true, but in my case the dosage increase might have been too abrupt. I take it for epilepsy, 100 mg. I was completely non-functional during the transition! Not only was I so tired I couldn't move, so sick I couldn't eat (I've lost a lot of weight), but I was constantly dizzy. I would often get icy to touch and pass out, mores after eating.

Cognitively, I was severely depressed, and had a constant "noise" sensation in my head which I started yelling at during odd moments. I believe I even hallucinated at one point that the room was expanding. Mostly, people thought I was stoned because I would just stare at the wall and have difficulty talking to them without slurring my words.

It's been a truly terrifying couple weeks, however I've settled pretty quickly out of the major side effects. I think thats pretty much what happens for everyone. I'm happy to have my brain back.

I have been on Topamax for two years had most of the side effects I am used to them. The only thing is I am freezing all the time . Anyone have this?? I am cold all the time!!! I also experiance, in the summer, the no sweating thing, that makes me dizzy in the sun, I have to stay under an umbrella at the beach etc. I never had to do this , I was always a sun worshiper and could take it.

I've been on Topamax for over a year for hormonal migraines, and it's working great for the headaches. I started out at 25mg twice a day and now I'm up to 100mg twice a day. I've lost 40lb (mostly due to the drug -- but my appetite is starting to come back) and have just recently started experiencing the anxiety and tingling in the extremities. I've always felt I've had trouble concentrating and "finding the word", but I attributed it to lack of sleep because I have two small children. My most recent side effect, however, is most worrisome, which is the reason for my visit to this website. I am experiencing severe abdominal pain, almost constant, and it seems to be increasing. I had abdominal pain and diarrhea when I first started Topamax last year, but it stopped after the first month or so. I'm just wondering if maybe long term use can cause ulcers or other stomach problems. Anyone have any experience with this? I know from experience that Topamax dosages have to gradually weaned up and down, so I'm considering decreasing my dosage to see if my stomach problems will stop. I'm just in so much pain, yet my migraines have almost stopped now with 200mg a day, that I'm reluctant to change my dose.

I just started Topamax for Bi Polar. I replaced the Seroquel I was on with it. I have been having some really bad headaches before I went on it, and I am still having them. I have lost 6 pounds in a week. Can someone tell me from their experience does the headaches seem to go away with more dosage. I was on 50mg of Seroquel and with the Topamax I am only on 25mg right now.

I took Topamax about 6 years ago for migraines, and experienced no side effects. Just started it up again 3 days ago, and I feel like I am totally drugged and my head is spinning, can not drive, can barely hold a conversation, only started with 25mg, and can say that each day I feel a little better, but the only difference this time is that I am on Lexapro and my Dr. said the side effects could be worse till I get used to it..anyone else take this combination? And how long till I can function again?

I have been taking Topamax for chronic headaches migraines. I am really frustrated after trying Topamax for the second time. I tried it for about four months early in the year and here I am again trying the drug once more. I am using 100 mg both times and see no results even this time around. I have only been on it for about two months. My neurologist tells me to be patient, but it's really hard to when my life is ruined and I cannot work as a hairdresser (product fragrances and chemicals that trigger headaches). My career may be over and I am only 23. I just don't understand why I am on epilepsy medication. All of these problems have lead me into depression, which is a whole other topic. My neurologist keeps scheduling me for followups about once a month which seems pointless and extremely costly. I feel like I am getting taken advantage of money-wise. I want to stop taking my medication and try chiropractic care. I know better than to quit cold turkey... Should I just call my neurologist and cancel my appointment and ween myself off my medication???

I have been a migraine sufferer for over 13 years and have run the gammut of medications to prevent and deal with them. My mother took Topamax a couple of years ago with disastrous results. I didn't realize, but I guess she was so loopy and forgetful that it was enough to cause my grandmother and stepfather to perfom an "intervention" to get her off of it. So, here I am a couple years later starting it myself, wondering if the side effects are worth the trade off. I'll be honest and say that I love Coke. I mean, loved. Carbonated drinks of all ethnicities taste like slimy metal now. How disappointing. And considering that if I went a day without drinking a Coke, I would get a wicked migraine, I've resorted to putting Crystal Light Energy (Wild Strawberry) in my water to give me the needed caffeine.

I've also noted tingling in my face, kinda like numbness. Nothing that is earth-shattering, but noticeable. I get dizzy a lot. I've also lost about 5 lbs since starting the medicine. And today, I could not find the word "prescription" in my mental warehouse. Not a difficult word on a normal day. I've only been on Topamax for a week though. I'm going to give it a good month to see if the side effects dissipate. But if I get any stupider, I'm going to have to go another route.

Do not stop this drug cold turkey. I am not a fan of Topamax but I see many people posting about wanting to stop immediately. I have had a really bad experience on this drug with side effects but you cannot just stop taking it. I am currently weaning at this rate: 25mg every 5 days. From what I've read, this is pretty much the standard when weaning off topamax but you should always consult your doctor. Cold Turkey stopping can result in seizures and all kinds of adverse side effects that can make your current topamax experience look like a walk in the park.

My wife has been on Topamax for 6 months and I feel our relationship is in the gutter. Lack of affection , no sex drive and she zones me out (like a zombie). Doe anyone have the same problems with their loved ones?

My 56 year old son. Jim, is Bipolar. He was taking three medications, one of them being Topamax. The Dr. that prescribed this medication died and the new Drs. thought Jim was doing fine so they continued on with the same medication. Jim became fecal incontinent. We did numerous medical tests to see if this had any basis. None was found. Over a years period (Jim's third year using Topamax) Jim began losing his memory. This doesn't sound too horrific unless you know that Jim has 160 IQ and total recall memory. He never had to read anything more than once and he could quote verbatim almost anything from any page. Total recall of phone numbers and names, etc. At first the Drs said this was early onset of Alzheimer’s. He was being cared for by this time with a battery of Drs. Neurologists, medical, psychiatrists and doing some very extensive testing. Finally it was judged that no, Jim does not have Alzheimer’s. However he continued to quickly decline. He by now was both urinary and fecal incontinent. His speech was slurred and he was unable to bath himself. He required around the clock help. He would ask me questions like, did I go to school? Did we live as so and so town? Then he asked, is my name Jim? This was hard to hear but then he quit talking altogether, was staggering and would respond to telling him walk this way or sit here but little else. Finally the Neurologist told me he was almost certain that Jim had a rare brain disease and it was always fatal within a year. He determined that Jim was in the advanced stages and probably had 2 to 6 weeks to live. I was devastated! Jim was sitting in the office when the Dr. said this and he made no recognition that he heard or understood anything.

I started talking to friends about this and one of them said call her friend a paralegal nurse practioner. I did and she asked me "Why is Jim taking Topamax"? My answer I consider rather stupid now but then it was the truth, I answered "because the Dr. prescribed it". She said, titrate him off Topamax and then call me. I went to his Dr. at the time and the Dr. was most reluctant to take Jim off this medication. He accused me of "playing Dr" and was most insulting. I persisted and said if he wouldn't I would change Drs. Later I understand he took Jim off much too fast and we did have really serious side affects. We halved his dosage every two days and in 6 days he was off Topamax. Jim went into a catatonic state for several hours at a time about four times. There was about 4 days and nights that neither of us got any sleep. He had repetitive thoughts that nearly drove him crazy (His words). The sixth day Jim started talking but then would go into these catatonic states for hours. When he came out of them he would talk and explain some things, then he would quit talking again and he later explained the thoughts were going so fast in his head this was the only way he could preserve his sanity was to just "blank out".
After about two weeks of this intense illness and no help from his Dr. and Jim refused to go into the hospital, in his talking moments he said they would just fill him with sedative drugs and he wanted to get as clear as possible from these. To make a very long story short this was one year ago, three Doctors ago and Jim was relieved from his repetitive thoughts by Fluvoxamine, but that spiked him into a manic phase and eventually he went into the hospital. He is on a complete new regime of meds now but we always research any new med BEFORE taking it. It will never be just "because the Dr. prescribed it" again. By the way, Jim was taking lithium at the time Topamax was originally prescribed and gaining a lot of weight. His original RX was for weight control~! It didn't work but it nearly killed him. I called the paralegal back to thank her but she had left the law firm and no one can locate her. Our Guardian Angel????