Topamax and migraine

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

I recently started taking topamax for migraines. After increasing my dose to 75 mg twice a day, I am almost migraine free. However, my hair is extremely oily and having to wash it with a clarifying shampoo twice a day. Nothing else has changed other than my this medication so I am assuming it is a side effect of the Topamax. Has anybody else experienced this?

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've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.

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 was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!

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!!!!!

i have bee on topamax for 2 years started out low amounts now i am up to 100mg at night and 50mg in the morning and i will take 50mg when needed for a headache if i get one thru the day . that is all i love it. no more in the bedroom all day missing life sick. no more head splitting open just shoot myself painful headache. i feel great and i function raising three boys two teens and one pre teen. im not saying that they don't give me a migraine but i can control them thanks to topamax. i hope it never loses its effectiveness because i will lose my piece of mind. oh before i go ,weight gain ! i am an semi-active person. i did not gain the weight at first but as i got older i did . but i work it out and keep going. i would rather 10 lbs more on my tush than a migraine busting my head open. so work out a bit ,go for a walk ,choose a good eating regimine, and lose your headaches.

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

I took Topamax for my migraines following a significant car accident. All I can say is this medication didn't help me at all. In fact, it made my migraines 10x WORSE! Before, when I had a migraine, they were debilitating and would last up to 48 hours. Once I was on Topamax I had a migraine that would not go away. It was almost a month of me being out of work so that I could be weened off this medication and feel better. Now I take something called Axert which you take at the first sign of a migraine. It is my miracle drug. It is not a narcotic like every other doctor seemed to want to give me and would make my migraine go away within an hour. However, I have noticed I have built up a little bit of a resistance to it!

I've been on Topamax for a few months now........this is the second time. The first time was in 2002-2004. I was up to 400mg for migraines & depression. It was supposed to do double duty. Well, I was stupid, to put it briefly. I couldn't remember anything. I would stop mid sentence because I couldn't think of the word I wanted to use. I lost a lot of weight, too much. I had needed to lose a little....baby weight. But I looked anorexic. So out to buy a new wardrobe. $$$ I lost a ton of hair!!!! So off it I went. The weight came back very fast....too fast I think. My friend says the same thing of her experience. THIS time I'm on 250mg.....no more than that, as per me. I was stupid for a little while, but it seems to have gone away for the most part. My hair is still falling out, so not much longer on this one for me. The reason I went back on it was for the weight loss ( and it does help the migraines). I was on some migraine meds that made me gain 40lbs over a 2 yr period(Abilify,Cymbalta). NOTHING could get off the weight. Not exercise, not diet. I've lost 21 so far, but my progress has slowed because of Wellbutrin...it makes me crave sweets. And my willpower is nil. lol So off the Wellbutrin I go. I also learned my nastiness could be from Topamax. I snap at the kids. Who knows which drug it's from! I also take Singulair. That's a story in itself. That one's gonna go too.

I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!

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 have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.

I only started Topamax three days ago (25 mgs, but it will be increased to 100 mgs over an eight week period to help me adjust), and I've already experienced the loss of appetite, crazy mood swings, insomnia, eye aches, and head aches. I haven't had a migraine, though, so that's nice, I guess.

I took Topamax for 6 months. I am a control freak by nature and really liked the drug at the start when I took 25 mg.; however, like most people who take Topamax know, you increase the dosage until you get to 100 mg. By the time I got to 75 mg. I was a basket case. I did lose weight and I was really calm; however, I thought I had Alzheimer's. My short term memory was shot and was slowly effecting my long term memory. I was constantly at a loss for words and stuttering all the time. For someone like me who is extreme control freak this was very debilitating. I also had constant tingling on my nose (I know weird) and my fingers. My husband begged me to stop taking Topamax because he could see the difference in me. Like everyone else my Migraines completely went away and so I thought the benefits outweighed the side effects.. The doctor said that maybe 75 mg. was to high so he put me back to 50 mg. It didn't change. Finally after 6 months I was almost a vegetable. I stopped talking which is extremely unusual for me. I stopped hanging around my friends and family and wouldn't deal with my kids. My daughter finally came up to me and said I don't know who you are, but I want my mommy back. That was all I needed. I weened myself off and within 2 months was back to normal. Unfortunately, my migraines came back full force 4 days a week. The good news is that about a year later I was having a physical and the doctor said that my thyroid was off and needed to start taking Synthroid. I have to say I couldn't believe it, but ever since I started taking Synthroid my migraines have completely gone away. From having them 4 days a week to maybe have 1 or 2 a year since being on Synthroid. I have been basically Migraine free for almost 2 years. I highly recommend that people, especially women, talk to their doctor to see if their thyroid could possibly be causing migraines. I have had migraines since I was in college 20 years ago.

One thing I do have to say is that the company that manuf. Topamax listed all the side effects. It did say that Topamax could possibly cause Neuropathy, loss of memory, weight loss, etc... It also stated that the symptoms should disappear after 6 weeks; however, it some cases they didn't. I respect that they were honest with their research and were very clear in the side-effects. I have many friends who use Topamax and thank g-d for it everyday. They had no side effects from the drug and have been living happy lives.

After taking Topamax for six months, I found my self different person.... I started feeling this way just in the first few weeks after I started the medication, but the simptoms incleased with the time....Anxiety, nervousness, panick attacks, negative thinking and depression....crying, making up problems from nothing, hair loss also....I decided to stop it, slowly and without any concequences I thought I am out of it....But just a couple weeks I stop it is I noticed some red spots on my skin on the lower legs, soon they became more and stronger..... Two months later I was in abnormal stress that I am going to be sick from a terrible desease... Read so much on Internet.... I can explain how terrible I felt and even though I did blood tests (everything was in normal range!!) and spoke with so many doctors, nobody could tell me what exactly is wron with me. One Dermatologist named the skin problem as Progressive Pigmentary purpura and gave me a cream for that. Thanks a lot for that because the spots started desapearing, but it may come again.... nobody knows for sure.... I think this is another side effect of Topamax, that nobody had before..... Please tell me if somebody else had the same situation... I will feel much more relieved....

I began Topamax in August after 6 months of ongoing severe migraines. They stopped immediately. My DR had warned me of weight loss but I thought who cares? I weighed 130 at the time. I have had a fatigue problem for years so I really can't attribute that to Topamax. I did become very sick (exhaustion-couldn't get out of bed) after Christmas and had my DR take my ANA which was 1280 (high). I have also experienced hair loss but I did not find that on the "side effects". I called the hot line to see if there were other reports of affected the ANA count and they had no data on this. Has anyone else had this experience? Meanwhile, it is 8 months later, I am down to 96 lbs and worried, have lost all fat & muscle - no migraines!

I've been taking Topamax for a couple of months now to help with my lifelong (I'm 47) migraines. I had been taking at least 10 Axerts each month, using Amyltriptyline about twice a month, and had completed one lifetime's supply of Aleve (my belly revolted so it's only Tylenol for me from now on). I'm on 100mg and have very mild tingling, which I tell myself is a message that I don't have a migraine (hooray!). For me, this is a wonder drug - it nearly completely prevents my suffering. The problem is that I have absolutely raging diarrhea. I've spent weeks on the BRATTY diet & using probiotics to no avail so I've begun dropping my dosage to 75 mg to see if that helps. I would do nearly anything to continue taking Topamax.

Interestingly, I had more fuzzy brain problems taking excess Axert & Amiylriptyline than I do now on Topamax. I feel much less like I have ADD now. Amazing how differently meds affect different people.

I have been on Topamax for 4 months and so far the migraines I have suffered for 40 years are gone. Great Some side effects like can't stand carbonated drinks. Reaction time is a little slower. I stress out a little more then I used to. I get really tired at the end of the day. I used to be a night owl but now love my sleep. Question to you all. Any one had problems with their teeth? Such as pain, fillings falling out? Let me know.

I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?

I was on 200 mg/day of topamax for migraines. It did lessen the frequency and severity of the migraines. I lost 20 lbs and looked great. I felt horrible. I was suicidal and paranoid, cried frequently and thought that I was going to die. I was very tired, probably due to the topamax and the fact I was only eating about 500 cal per day on a good day, I was only rarely hungry and then would feel full after a few bites. I loved being thin, but was too tired to enjoy my life. I'm a nurse and couldn't remember anything, so I wrote everything down. My husband said that talking to me was like playing charades, because I couldn't remember the words for what I wanted to say. People would talk to me and my comprehension was very poor - it was like they were talking in another language that I didn't understand very well. I had always been sharp and quick witted, but on Topamax I was lost in a brain fog. I went off the drug under an MD's care. It took a while to feel like my old self, but life is now normal.

I was considering going back on it to lose the weight I put back on, but after reading all the other posts, I realize it's just not worth it. No, not everyone experiences all the awful side effects, but the side effects are not rare and some of them are horrifying. One of my friends who went on it couldn't even remember her children's names and she was on just 25 mg. I think this drug can make you feel like you are dying - just like a cancer patient at end stage. You don't want to eat, there is little enjoyment in life, your brain is foggy like you've been going through chemo and you feel incredibly sad as if you're going to die.

My advice would be to use the drug only if absolutely necessary. Try acupuncture, other migraine meds or seizure medications before this one. If you are taking it and notice that you are having extreme side effects, ask your doctor to be taken off it. If you can take it and the only side effects you get are a little pins and needles and an aversion to soda, go for it! But please note if you have strong emotional changes and try to eat healthy while on topamax.

Been taking Topamax 300 mg a day for the past 4 year. I also take 450 mg of Wellbutrin. This is to help with migraine. Although my total count of Zomig pills I took last year was 120 pills and some of those I broke in half so I wouldn't have to use a whole pill for a migraine. So that mean, with the Topamax and Wellbutrin combined, I still had at least 123 migraine this past year. Three months of migraines. That's insane. I can't stop the "Dopamax" because my doctor says it would be really bad with it. I have terrible memory loss, forgetfulness, and loss of words that is embarrassing. The nurses did not inform me of the side effects when I first started taking it and I thought I was going crazy. I started looking up ADHD on the computer thinking I had developed it as an adult. I was made at the nurse when she asked me how I was doing remembering things and and if I was stumbling for word......I wanted to slap her off her stool.........at that point it was NOT funny.

Has anyone experienced hypersomnia with Topamax? My son just started taking it a couple of weeks ago and now I can't wake him up in the mornings. Not just tired... but literally unwakeable. Then he has sleep drunkenness once he eventually wakes up in the middle of the morning. I have taken him off it to see what happens.

I've been on Topamax since Sept 2007 and the only side effects I have had were at the beginning were the tingling in the hands and feet when I was brining my dosage up. Soda tastes awful but I no longer drink it and that is a godsend after being a heavy drinker of it for years. I do find there are time when I can't find the right word to say, or I forget what I was doing, but I deal with it. I have lost 20 pounds since being on the medication. After being on it for 6 months the tingling is gone, I usually counteracted it by drinking plenty of water in the morning, that got rid of it. The drug has taken away the migraines, and regular headaches I have suffered from for years. It has also stabilized my moods and taken away my anxiety issues. I'm 36 and have never felt better. Topamax is definitely not for everyone. For those that are suffering, please do contact your doctors and try to get off the medication.

I have been on Topamax for a year. I am on a low dose of 25mgs morning and night for Migraine prevention (instead of the Verapamil I had been taking for years). I am pleased with the results. No migraines. I do not drink soda any more due to the after taste but thats fine. I think I am a little more "hazy" in my thought process but not to an extent of it interfering with my life. I will see how I continue.

2 yrs ago I was diagnosed with peripheral neuropathy. I have been on Topamax since, because of the severe pain it causes. I have never experienced weight loss and I was on up to 400mg a night. I am now on 200mg a night. My tastes are fine and my drinking sodas were never like metal. But for the fatigue of the disease I also take Provigil in the morning. I have noticed my eyes have changed. Never gave it a thought to be Topamax. Plus I just got new glasses again 3 months ago and am seeing a change in my sight again. Also there is a noise in my ears,not ringing,but sounds like crickets. Never had that before. I was on 2 other meds but I took myself off of them because I really don't like taking so many. The others had worse side effects. Until they find a cure for this disease it looks like I'm stuck with Topamax. This is one pain I will not and can not live with.

I'm on Topamax, Atenolol, and Citalopram...all for migraine prevention. We added the Topamax to the regimen (100/day) about 6 months ago. The first 6 weeks were the worst for side effects, especially the metallic taste, tingling hands, 'stupid' feeling, and fatigue. However, I did eventually adjust, and the migraines did decrease in frequency and intensity. They were not completely eliminated, but when I still get them, I find that I can abort them with the 'rescue' drugs easier, and they don't last as long.

If you like soda's and are upset by the 'flat' and metallic taste caused by Topamax, there are some sodas that don't taste quite as bad. Coke Zero and Diet Pepsi Max seem to be a little more carbonated and have a 'zingier' taste. After about 3 months, some of the carbonation 'feel' came back and I could drink things like beer again, without it tasting like I was sucking on a rusty nail.

I use to get the 'stupid' feeling to for about the first 2 hours after I took my morning dose. I couldn't remember words, and would forget what I was talking about in the middle of my sentence. I started taking my meds at 4 am, so that I had a chance to sleep the 'stupid' off by the time I got up at 6 and left for work by 7am. Then I'd take my evening dose after dinner, because my kids don't care if I'm an idiot...just as long as I'm not cranky :-)

When I have a migraine, I usually want to drive a pick-axe into my head, so all-in-all, these side effects aren't too bad in comparison, and make me a much more pleasant person to live with.

I have been taking this for about two weeks and have just ramped up to 50 mg. I had a closed head injury last November and have been suffering from balance, headache and memory issues since. Doctor put me on Topamax for headaches and I have had the eye checks after experiencing eye pain but I was fine. Have had slight tingling in my feet and my right eye has been red off and on since starting. My right eye has also been constantly hard to focus.

I have read over and over that the side effects usually go away after about 8 weeks, so I'll see how it does till then. I'm still waiting to see if it helps my headaches, it hasn't yet.

It seems to have made my balance issues worse, and I am constantly dizzy now, although in Topamax's defense, I have been having more dizziness since my injury.

The spinny thingies that used to be there when I close my eyes are gone now, at least they have been since I started at 50 mg.

I'd say the most disconcerting issue I'm having is a feeling of being doped up and becoming more afraid of doing things, like driving a car.

I was prescribed Topamax with Wellbutrin in combination by a Psychiatrist to aid with an eating disorder. He told me how this was an "off-label" use of the drug and warned me about side effects like the tingling hands and feet, but assured me that drinking plenty of water and making sure that I get enough Potassium in my diet would be enough. He never once mentioned anything about my eyes.
When I picked up the medication, the Pharmacist went over the information and asked if I had questions. He did not once say anything about my eyes, vision, or glaucoma.
I started with 25mg on Dec 18, 2007 and went up to 50mg on Jan 9th, 2008. On Jan 26th, anytime I would stand up from a sitting position, I would get an intense pressure in my head, ears, and a very forceful pressure behind my eyes, and also rainbow circles popping up in my vision when I moved my eyes around. If I stood still and waited anywhere from 30seconds to 2minutes, the pressure would go away and I could function just fine until the next time I sat for more than 10-15minutes.
I called my Psychiatrist and he recommended that I drink more fluids and take a multi-vitamin. No mention of glaucoma.
The next day (yesterday), the same "head rush" was happening only it lasted longer and felt like a mini-migraine. I started looking online and WOW, there is info everywhere about the side effects.
I did not take the Topamax last night and this afternoon I have an appointment to see my eye doctor. I will also be looking for a new Psychiatrist. The way doctors are bribed to push meds is frightening.
The drug combo he prescribed really did help the way he said it would, but I would never have risked my eyesight!!!!!

I had been dealing with numbness in my hands and feet for about a month (I've been on Topamax for maybe 2 months now, maybe 1.5 months...) and I am happy to deal with that. Anything is better than the migraines that I had, and anything is better than waiting for the next migraine to start.

But for the past few days, I have been dealing with a total shortness of breath. It's like I can't catch my breath, in a way... or, as my mom put it, can't really get a "fulfilling" breath. I am constantly yawning, but that's how I am getting to that deep breath, although it takes me 3 or 4 tries to get there. It's frustrating, and SCARY!

I called the Topamax number today, and the nurse said that the side effects should only last 3 months total, but 1.5 more months of this?! I can barely imagine 1.5 more hours!!!!!

I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.

I was put on Topamax around thanksgiving time 07 for Bipolar disorder. Over a week my dose was raised to 100mg/day. Immediately I began experiencing muscle cramps in my Legs that were intermittent. It wasn't too severe so I decided to give it time. Also, I was an inpatient at a Psych facility when I was put on Topamax and was also placed on a few other things at the same time. Recently, the pains in the legs have become severe and I have been getting pains in my arms as well. In addition to this I have been getting tingling in my face and hands and numbness in my throat. It has been difficult to breathe at time, especially if I really relax, then I suddenly realize that I am not breathing at times. My eyes feel like they are going to pop out of there sockets. I tried talking to my Psychiatrist and was told to go to the ER. At the ER I was told to goto my Psychiatrist. No one will listen to me!!! Finally yesterday I decided to take myself off of the Topamax. It's hard to tell if things are any better yet and I imagine it will take time. I have noticed what I believe to be improvements though. I guess the moral of this story is sometimes you have to use your own brain and do what you know is right for you.

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 am a 32 y/o female that was put on Topamax 10 days ago for migraines. I am taking 25mg twice a day so far, and the side effects I have experienced are all carbonated drinks taste flat; including beer, and if I take it close to bed time, I cannot sleep. The medication actually revs me up! Nothing i cannot handle. I have not had any problems with loss of appetite, nausea or diarrhea. Sure, sometimes I feel a little spacey, but I did that even before I started the medication. My doctor did tell me that you do need to drink plenty of water and eat plenty of protein. Also, when I start to feel a little spacey, eating a small amount of sugar seems to help with that... I have had a few headaches since starting the medication, but I haven't had a full blown migraine!!! I will continue to keep you posted. So far, I haven't had any side effects that i can't live with and by reading the posts and talking with several other people on the medication, it seems like the side effects are temporary and improve as your body "adjusts" to the medication. I am a nurse and I guess I am at at advantage because I am educating people on daily basis about this very issue!

I have only been on topamax for a week and have not had any crazy side effects thank goodness. I went on all the websited before I started taking it and I thought I would bald by now or throwing up all my food! Anyways, I am a 22, F taking it for migraines. I, of course, have only been taking 25 mg since this was my first week. When my dose goes up this next week I am sure crazy things will start to happen! Ha hopefully not though. But, I just to write something NOT HORRIBLE about topamax on here. The only things that I have noticed is the soft drinks and beer, sadly, not tasting that great and I have a gross metal taste in my mouth. But I never drank soft drinks in the first place and I am a college student so I am used to Keystone beer, which doesnt taste that great, anyways! My migraine that I had for 6 days finally went away, so that was good. I haven't even had the tingling yet. Keeping my fingers crossed. Hopefully all goes well after my meds are up-ed;) I just wanted to write something possitive on here for those about to start topamax because I know when I was reading things on here before I started it scared the hell outta me. Good luck. Think possitive.

I have been taking Topomax for quite some time.Tried it several years ago, the mgs were not high enough (only 25mg/day).My doctor didn't really know the prpoer dosage.It didn't help the migraines.My new doctor has me on it again.50 mgs/day.Here's the good - NO MIGRAINES! Here's the bad: Acne at 45 years old, tingling doesn't even describe my legs or face, ringing in the ears, remembering names and places just doesn't happen, I'm eating less but gaining weight quickly,& one last thing- Itchy spots that I would describe as "hot spots" if I were speaking of my dog. Still sticking with it because I don't have the migraines.I tried to slowly take myself off and the headaches came back.What choice is there?

I started with 25 mg for migraines and upped dosage by 25mg pweek for 4 weeks till I reached 100 mg per day. Right away this didnt work because you cant half the pills because the taste will kill you. but once I adjusted to the 50 mg it was ok. There are side effects. I have cured my life long addiction to coca cola. I can no longer drink soda, it tastes gross, really vile, and I have lost almost twenty pounds sfter one month. The no soda gave me incentive, so I have been dieting, but the topamax only seems to help. I have only had one migraine this month, on the monring of my periods arrival. This hasnt happened in twenty years. Ive been on all sorts of meds throughout the years. I love topamax. I have had some other side effects. I am diagnosed as bipolar, and do not take medicine because the depakote made me a zombie. Life has been much easier, although on the days I up my dosage I was a bit hyperemotional. Nothing too bad though. I was, however, unable to drink two glasses of wine on this medication. I did have some spacey moments, and tingly fingers as well. Like I said before, nothing compared to Depakote, and nothing that I wouldnt trade for ONe hormonal migraine a month. I love this stuff.

I started Topamax October 12 my Neuro said start at 25 mg and work up to 50mg in the morning and 50 mg at night. The first week I was tired like most people have mentioned. Almost instantly Diet Coke tasted terrible. I was a little dizzy and light headed. DC still taste flat but the other symptoms have gone away. I have never experienced the tingle or weight loss. I am on a low does. No stomach problems for me. One thing is my cramps this month were 2x worse than normal . I am 45 and on Topamax for migraines mostly I think hormonal. I am going to give this a fair shot. I really have not felt more energy. I really wish it would help in that way. I am also taking wellbutrin and prozac for depression that runs in my family all the way from my Great Great Grandmother. I too have have a mild headache off and on when I would normally have a migraine and a advil took it away. I had to take an imitrex last night, and am hoping that is the end of this hormonal headache for the month!

I first posted about 6 weeks ago when I began taking Topamax at 25mg a day. I'm now up to 100mg a day, 50mg am/pm and surprisingly it seems that most of my side effects have subsided. I have the tingling in my fingertips and feet now that I didn't have before, but it is rare and not something that keeps me from any normal activity. Sodas still taste flat but I've adjusted to that, beer is something that also tastes flat and that is rather disappointing. The only thing I've noticed is that I tend to have a slight headache most of the time that taking Advil will cure. I don't know if this is caused by the Topamax. When I do feel a migraine coming on, it seems to take days and never fully matriculates and I have to get a shot of Toradol. All in all, this is much better than the weekly migraines I was having.

Hello, everyone. I didn't know there was a page like this, but I'm glad there is. I've been on Topamax for 3 weeks because the medicine I was on for 2 years didn't do anything and the headaches weren't going away at all anymore; they were continuous. The first week at 25 mg I had the tingling for a day or two, the involuntary muscle twitches, the terrible mouth taste, and the chest pain. All but the terrible taste went away by the second week at 50 mg but I started getting wobbly legs and dropsy. I read an article somewhere where a person on Tomamax called the drug Stupamax or Dopamax and said anyone on it turned into a box of rocks. The box hit me at 3 weeks and 75 mg. I'm not wobbly anymore, I'm still irritatingly dropsy, and I am doing things that only a person with half a brain would do. Plus, my ears have been ringing for two days, and today I feel like I'm in a tunnel and everything is far away. I'm getting ready to call my doctor. On the OTHER hand, I haven't had a headache that lasted for more than a half hour in 3 weeks. So what's best? Going back to headaches or continue to evolve into a box of rocks?

I've been on Topamax since just Tuesday, 10/9/07. I find that I get very tired a couple hours after taking it and I have horrible nightmares and very dark thoughts, too. Diet coke tastes so HORRBILE which is bad because I loved my diet cokes, but then again I guess that's good b/c I need to stop drinking them anyway. My worst side effect is that I have horrible mood swings. Is this normal? Is this going to go away over time? Because if not, I'm going to stop taking it now. This is not like me and I am not going to subject my family to this - losing weight is not THAT important to me. Thanks for any help. :(

P. S. I'm taking 25 mg in the morning, afternoon and evening.

I have been on Topamax for about a month now. I take it b/c I have suffered from migraines since the age of three. I have not had a migraine since, and would normally have one five times a week. As for the side affects, the soda being flat was one that I noticed right away, and I had already done my research, so it was no surprise. Heartbreaking, yes, but expected. The tingling of the extremities is a big one for me, one of which I am slowly getting used to. I could stand to lose a few pounds, but have not seen if the weight loss thing really affects me; I think it really depends on the individual. Thankfully, I have not experienced any of the memory loss or blackouts. No major mood swings. My appetite has stayed the same. I have noticed that I seem to have some bumps on my lower leg that are not bug bites that I am going to ask the doctor about. I am a smoker, and wonder if this somehow could play a part with the Topamax and the bumps. Anyone? Overall, it's been a short time, but I have had amazing results for why I am taking it! I wish everyone well

Started out with face tingling about a week taking it primiraly on the right side of my face. About 3 weeks into taking the medication I experienced Experience weakness on left side of body which included unable to lift left arm and left leg, unable to stand by self, involuntary tremors to the hands, fingers, legs and mouth, difficulty speaking, very emotional, very tired. Was hospitalized because emergency room doctor felt that the effects were due to reaction to an MRI dye 6 hours before. Was released next morning with slight improvements in left side of body strength, speech slowness cycled from normal to extremely slow, additionally the involuntary tremors with the hands, fingers, legs and mouth continued as well as the emotions, actions like eating and bathing required a lot concentration and caused extreme tiredness.

I'm starting my fourth week on Topamax. I'm not sure if I really need to be on it though. My doctor sent me to a neuro for an EMG because I have bulging discs in my spine. Well, the neuro seems to think I have migraines and put me on Topamax and he added "this'll really make you lose weight". Well, I don't think I've ever had a migraine...just sinus headaches. I'm supposed to start 100mg tonight but I'm afraid to keep taking it. I keep getting double vision and tingling in my feet alot. I don't feel like myself and I'm not sure if there have been studies of the effects of this drug long term??

Hi, my 14 year old daughter was prescribed Topamax about 6 months ago due to migrains that started when she had Mono. The mono lasted a good five months and the nuerologist to whom we were referred prescribed Tomamax after nothing else worked.

This morning as she was leaving for school, she said " I will take Aleve twice a day for the rest of my life, the Tomamax has made me stupid and I can't take it anymore!" With that my beautiful, brilliant daughter was out the door.
I am sick that I didn't look into this drug sooner. I found this site and am floored at all the side effects that sound exactly like hers. She has always been an A+ sudent who works hard, she lately has been saying she feels dumb, can't remember things, her knees hurt, her hair is falling out, she can't think, she is depressed etc. I have been downplaying her symtoms and blaming it on the mono. I am outraged at the craziness this drug has obviously caused and my failure to recognize the cause.

My questions now are, can she quit the Topamax immediatly and when, if ever can she expect her cognitive ability to return?

Please tell me the effects are not life long and what my next step should be to help relieve her of these symptoms.

Peace, Becky

I took Topamax for a week about four months ago for migraine. I stopped because I felt so dopey. It did help with the migraines and I noticed it mellowed me and evened out my mood. Despite that I don't suffer from any mood disorder.

Three days ago I started again because I had been experiencing frequent migraines. I am only in the 25mg at night phase and have already decided to quit again. The side effects are just too much. I awoke this morning and my extremities were completely numb.

After I showered, I caught myself just standing in the closet spacing out. I find it difficult to concentrate and focus (I was just staring out the window a moment ago!). I sound like an idiot when I talk to people and try to explain things. I left work early today because I was feeling so uneasy and depressed that I thought I was going to shake apart. That is totally unlike me. (I'm a cop) And this is after only three days back on at a minimal dose. So, I'm glad it works for some, but it's definitely not for me. The migraines are actually preferable.

Hi
I have been on topamax for 5 months now. I first learned of this drug after holidaying in USA (i'm from UK!) and after suffering from horrendous migraines for years, with no relief, finally this drug has really helped. However it is certainly not without its side effects. One thing that i have noticed but no one else seems to have noted, so i'm not sure whether it is peculiar to me or not....is dry eyes??? My eyes are so dry all of the time. I am using eye drops 3 or 4 times a day and this is only since i've been on topamax. I'm interested to see if anyone else has noticed anything similar?

Also, noticed facial tingling..(pins and needles like) and feel like i have a chest infection all of the time. I also am very forgetful and where once i was incredibly articulate, my memory is definitely impaired. VERY frustrating and embarassing in business situations....BUT i rarely have a migraine and for that i am thankful!