Topamax and migraine

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 am decreasing my topamax meds now after taking it for 6 horrible months..
topamax? rather call it dopamax..
I took 100 mg daily
now i'm building of the topamax I can allready feel the difference..
I hope I become the joyful smart person again I once was before..
I lost weight during this six months, wonder if i'll gain it back.. but don't care. I must get rid of this drug.. I'm so sick and tired of the side effects!!
For me it wasn't a good solution for my migraines
They didn't stop.. the first month i took topamax, my god i could bounce my head against the wall due to the outstanding headaches i got; even worse then my normal migraine seizures..
i'm not gonna look for a replacer for topamax, i'll just take my migraine as i did my whole 22 years long.. That's life and I want MY life back
good luck to you all!!

I'm a 41 year old female in very good health- other than the obvious migraine problem that I have. I have been on topamax for 3 months and am now tapering off of it. I have had all of the side effects that others have experienced to the point that I can't continue taking the medication. My memory is horrible. I can't remember simple things, which is really causing problems at work. My mood is dull and lifeless, and all I want to do is, well, nothing. I'm not a big soda fan anyway, but now it tastes really awful. I noticed that almost immediately. And once in awhile I crave a coke, but can't drink one because it is nasty!!!
I have lost about five pounds, but I don't think I will lose any more since my appetite has returned. That's o.k., because that wasn't my goal anyway. The tingling in the hands, feet and face happens almost daily and feels like little tiny needles being stuck in me. It's actually quite painful sometimes. And, I have noticed blurriness in one of my eyes. This drug has not helped my migraines. We're trying something else. But either way, I would get off of this drug. It's not worth it to me. If you are considering it, I would think twice.

I've been on Topamax for about a month now for daily headaches/migraines with 50mg/day and will be moving up to 100mg/day in the next few weeks. So far I have noticed the tingly hands and the nausea but the worst is the dry lips and how every beverage tastes either flat or odd. The only thing that tastes good is water and I can't get enough of it because I am always thirsty. My urine has turned a bright yellow, which I noticed no one else has reported so I'm a little concerned about that. However the headaches and migraines due seem to be improving so I'm keeping my fingers crossed!

I have been on 50mg of Topamax for the 2nd time for about 8 months. This time not near as much weight loss but so many more side effects. I have had 3 kidney infections and just found out I have an ovarian cyst which is now being linked to this medication. It keeps the migraines away but I am not sure if the other pain is worth it, has anyone had any luck with other migraine medications? This had been the best for keeping them away but now I am at a loss as to what to do. A little toe and finger tingling I could handle....cyst that make me double over in pain, NOT SO MUCH!

I was put on Topamax for extreme migraines about 6 months ago... Started up slowly with 25mgs to 50mgs to 75mgs daily and now I am taking 100mgs (50 in the morning and 50 at night). Topamax did the job in taking my everyday headaches away but I still continue to get the very painful and extreme migraines that last 304 days.

I did have extreme tingling in the hands and feet for the first month but that soon tapered off. As far as my appetite - I never really lost that and my weight has stayed the same.

After reading all of your posts I can take a deep breath and believe that I am NOT crazy. I have begun to think so because of Topamax. I am constantly anxious (and being an over anxious person to begin with this is not good), my mood swings are horrible - I am a total bitch to my boyfriend, and my mind just does not seem as clear as it once was - struggling to come up with the simplest of words....

I feel like Topamax has made me very paranoid and has set me into a depressed state. It is just not worth it. There are many OTHER drugs out there that can deal with migraines - and trust me I know they are painful, but I am much more willing to get myself back than continue to deal with these side effects for the sake of getting rid of a migraine (which isn’t always the case for me).

After switching doctors (from the one who had put me on this drug to begin with) - she is helping me wean off Topamax and wants me to explore other options.

Has anyone experienced weaning off this drug before - how are the side effects? And will I ever be myself again?

I started Topamax over a year ago and titrated up slowly, 25 mg a week until I got to 125 mg a day, split dosing. I was started for migraine prophylaxis. Once it kicked in, it did an amazing job of keeping my headaches away. But, here is something really important: if you are going to have surgery, there are contraindications with Topamax and anesthesia. No one either knew this or told me this and I only found out weeks after I went through a really lousy experience. What I believe happened is that the combination threw my body's pH balance off. I felt like my insides were burning and it was only at that point that I started to experience the severe diarrhea and weight loss, fatigue, and general malaise. It lasted for weeks. All I could figure at the time was that it was just taking me a really long time to recover from my surgery (ovarian cyst removal and unilateral oophorectomy), but that didn't make sense. I felt like I had a horrible flu for weeks. I kept seeing my doctor saying something was wrong with the way I was healing (ie, i had an infection or something). Anyway, this eventually stabilized as I back off the Topamax. I was so weak that I didn't even realize the memory issues or word finding problems, but when I started to feel better physically, I did notice those. That REALLY bugged me. I like to be sharp. So, I tapered off. About 1.5 months later, my headaches started coming back. I decided to try Topamax again feeling that now I understood it much better and could watch it more closely. Maybe this time I could ride out the side effects. Well, this time several months passed at the same dose. My headaches were still there and I had no side effects. We upped the dosage. Still having headaches, but no diarrhea, no weight loss (in fact, weight gain of 15 pounds over the last 9 months since last Topamax round), no real problem with word finding, etc. Up to about 200 mg daily by this time. It has been about 6 months and I have started tapering down and about to give up, down to 150 mg daily right now. NOW, here is something interesting: I just have another surgery, but no anesthesia. It was oral surgery. I did, however, have to take a round of antibiotics. It seems that this round of antibiotics has kicked the cycle into gear because I started having gastric problems, perhaps because of the antibiotics (although in the past, I have not had problems with antibiotics before, ALTHOUGH I did have to take them last year with my in-hospital surgery), I don't know, but I have finished the round of antibiotics and I am still having diarrhea. My appetite is suppressed, and I have lost 5 pounds in this last week. Many people say you cannot lose weight if you stop Topamax and restart it later. That is an interesting. I wonder why that is. Topamax is such a strange drug. Why did it not work for me the second time I took it, or at least for 9 months? Is it just now kicking in with its side effects as the result of upsetting my gastric system? Will it start working now for my headaches, too? I think I will continue to taper off or maybe see if I can prevent headaches on a very low dose. Oh, another interesting thing: I found the first time I took Topamax, it made me feel energized. I found that this time, it made me feel the opposite. I sleep a lot more and feel more sleepy during the day.

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.

I conducted a search for "long term effects of Topamax" and discovered this site, and am so glad to have done so. I have been on Topamax for around 2 years now, at the 200mg level, for chronic, sustained migraines. I have figured out, through tracking, that I will get a migraine lasting 3-4 days during ovulation and again on my period. The Topamax has helped considerably with the headaches, although I do still get at least one per month. It is generally not of the same duration, though, and is fairly easily controlled with pain meds.

I've been a bit worried, though, about continuing the drug for life, as it seems I need to do to control these headaches--thus the search. I, too, have experienced the "mental fog," and general decreased cognitive abilities. I am an extremely intelligent person, a writer, a former English teacher. Why am I unable to pluck words from my brain when I need them?

I've also experienced the tingling and numbness in various extremities, sensitivity to cold, blurred vision, fatigue, and loss of taste sensation. I've also become a royal bitch to my husband and children--although I had no idea that this could be related to this medication. I feel relieved to know this now...to know that I can change and be the person I once was. I don't like myself very much right now, but it's like trying to stop a runaway train. I can no sooner prevent or alter my knee-jerk reaction to things than I can stop that train.

I've been off of the Topamax for approximately two weeks now, and have already gained 5 pounds, although I work out 2-3 hours daily and play competitive volleyball 2-3 times per week for several additional hours. I had initially lost around 18 pounds and kept it off, even when my appetite returned. I'm uncertain, though, why I'm gaining the weight back so rapidly. I'm eating fewer than 1500 calories/day and exercising like crazy. It doesn't make sense.

I don't care about the weight, though. My chief concern is the return of my cognitive function. Has anyone experienced a return to their prior cognitive state after getting off of this medication?

I am taking topamax for about 4 months now
it works for the headaches though i still have days that i have migraine
-still have tinglings in the soul of my feet
-lost weight .. not sure how much lets say 6 lbs
-mood swings.. very bad mood swings.. for example.. this morning at work.. a colleague asked me how are you today? I felt bad and just started crying my eyes out.. terrible..
after 2 hours I felt numb and now i'm feeling ok..
-allot of diarrhea
-very thirsty all the time
-can't drink as much alcohol as i used too and if I do I become a very irritable person.. and the headaches the day after are reallyyyyy bad!!!!
let's say i have my good and my bad days with topamax..

I was placed on Topamax, off label, for suspected bipolar illness (now disproven). My cognition, word finding abilities, memory has been so adversely affected that I am now on disability. I had 5 kidney stones due to the development of Renal Tubular Acidosis, nearing renal failure (a side effect doctors don't warn patients about). This in turn led to osteomalacia, softening of the bones, only discovered after I broke all three major bones in my leg and snapped off my foot stepping off the lowest seat of a bleecher. I've suffered tingling in arms, hands, legs & feet (nerve damage), lesions in the brain, muscle spasms, heat & cold intolerance, insomnia etc... Although I lost weight, I gained it back (then some) as soon as I reduced the dosage of 800 mgs. Upon stopping the drug to save my kidneys, thus my life, my kidney function returned to almost normal within a few months, although there is residual damage. All other side affects remain two years later. Losing weight is not worth dying! Beware of this drug being used off label! I would never trust this drug!

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!

Well, my Fiancee (Sandra) started taking Topamax a few months ago. Her side effects have included: loss of energy, tiredness, tingling in the feet, nausea, chest pain, appetite lose, rapid weight loss, and a severe decrease in her sexual drive. The worst of the side effects is her sudden and unpredictable mood changes. She verbally assalts me and her children all the time. She is aggressive and picks fights over anything and everything. I love her with all my heart but I can not live like this. So bottom line, Topamax has gotten rid of her migraines and/or decreased their frequency and severity. And the cost of that benefit is the destruction of the relationships with the people that love her most.

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.

Hey everyone
I am a migraine patient myself
I'm 21 years young and been having migraines since my 12 years.

i've started taking topamax 3 weeks ago..
first two weeks 25 / morning
25 / evening

so ok my headaches got worse

now i'm taking 50mg / morning
50mg / evening

so that's 100 mg a day

side effects: funny feeling in my sool on my feet
slow reaction, real bad headaches,
i have an implanon and haven't had my period for 2 months now i've suddenly had my period for 2 days..ok it wasn't much but it was there, never have acne now i have 3 zips on my face, always black spots in my view, coughing for 3 weeks, lose weight more easley (i'm always on a diet) , this weekend someone asked me if i lost an huge amount of weight (which isn't maybe 2 or 3 kg ) my appetite is also less, i can eat if i want to though.. i can choose it's up to me :-) hmm let's see what else is there.. i'm a telephone operator so the word loss isn't a good thing for me either i'm gonna see how far that goes..

so i've been on topamax 50 a day for 20 weeks
i'm taking 100 mg a day for over a week now
within a week i'm seeing my doctor again
if my migraines aren't better on this dose my doctor is going to sent me to a specialist..
whatever doctor that's going to be ? :-s

Hi...I've been on Topamax since October of last year. I take 50mg. in the morning and again at night. I haven't noticed any real significant decrease in the migraine frequency, just in the duration. Whereas sometimes I'd be in bed for an entire day, sometimes 2, now they only last until the early afternoon. A big plus. However, there are some side effects that I just can't live with. The dry mouth is a pain in the butt but that I can deal with. What I can't deal with is the almost complete loss of my short term memory. It's so bad that I will ask a person the same question numerous times in a 5 minute time period and have absolutely NO recollection of having asked the question previously. I have found myself walking down the street and not known where I am. I dial the telephone and not remember who is going to pick up on the other end. And I'm dazed and confused on a good day. On a bad day it's worse. I can't live like this. So...I was wondering if others had the same awful symptom that I'm experiencing. I have others that bother me but that one is the worst. Also, how do I wean myself off of this medication? Thanks for listening.....D.

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.

I am on Topomac for the last 10 days. I have been suffering from stress migraine for the past 6 months and I took professional help only a month os so back. The doctor started off with Sibelium, but this managed to reduce the occurrence. So instead of 4 headaches I now had 2 headaches per week. After a month of Sibelium, he started me on a 25 mg course of Topomac. I did not realize that this drug would be one which I would end reading so much about. Starting on this drug I immediately started feeling lethargic, sleepy and general tingling in the arms. From the 8th day onwards the dosage was increased to 50 mg per day with a review to be done on the 30th day. However other than the general lethargy, sleepiness, and slight lack of coordination, I feel that the drug has helped me get rid of the pain of migraine. I hope I am not speaking too soon, but I will keep all posted of the progress of my treatment with this drug.

I was on Topamax for migraine a few years ago and had to go off of it because my insurance changed. I was crushed!! I was on a lowww dose- only 25mg. morning and night. It helped soooo much- and really- the only side effect was some weight loss and the tingly fingers and maybe weird taste in foods.Also- and maybe it's because I;m relieved of constant headaches- I have MORE energy and even better breathing, seemingly!! ( just now had a problem spelling 'taste'- and have read where that is a side effect but think for me it's just being 51 and a tad flaky with menopause. :) ) I'm back on it now- 25 mg. morning and night- and am very happy. The several times a week migraines ( the real thing) are gone- as are the constant floaters I get in front of my vision, and the things like vertigo and photo-phobia that I have constantly even when I'm not in a full-blown migraine. I just don't get the fatigue, headaches, etc. other people do- in fact, almost nothing by way of side effects. That is no doubt due to the low dose and also because everyone's system is different. I am lucky to have found the one med which nails my migraines! I've read all the posts and am definitely upping my water intake, however- thanks for that head's-up! It never hurts! I would say that anyone with intractable migraine should at least try it- although at a low dose. My doc is very cautious and started at the lowest possible end luckily for me.If you're one of the fortunate people who toleates this med it definitely works beautifully to prevent the majority of migraines in chronic sufferers! It IS expensive, though-even in it's generic form- and I really hope to keep affording it!!
Blessings- A.

I first started on Topamax when I was 20 for seizures 100mg twice daily. But before that, throughout high/middle school, I was on Depakote 250mg twice daily to control my grand mal seizures, and Imitrex 100mg to control my migraines(about 3x monthly). When the switch was converted the only side effects I remembered was weight loss, I lost about 40 lbs in 1 yr. Also I was taken off the Imitrex and the Topamax also controlled the migraines. I am now 28, and in the past 8 yrs I have had only 1 migraine! I work in a health profession now and try to recommend Topamax for migraines as often as I can just from experience, but I can understand that everyone is made differently and it is not always going to work the same as it did for me. And one last note about Topamax, it just came out in a generic about 3 weeks ago(4/1/09) for anyone that is concerned about insurance copays and might want to give it a try.

As mentioned in a previous post, I started Topamax the end of October. Since then, I have lost 25lbs, I am 5'2 & weigh 90lbs.

I have been taking 50mg's, but as of last week, I have cut back to 25mg's. It has been really stressful for me because I am scared about getting my migraines again & possibly going thru the HORRIBLE side effects I went thru when I got on the pill.

In the last 8 days, my anxiety level has been really high. I have been taking more (sometimes 2x a day) of my .5mg of Xanax. I have felt myself gasping for breath from time to time. I think that my headaches come from tension/stress, my jaw tenses up. The headaches feel like brain freezes. I am also able to verbalize my thoughts better, so I don't feel so stupid.

My goal is to be more clear-headed, gain 15/18 lbs & hopefully my complexion will clear up. I will probably stay on 25mg's 2 more weeks before getting off. I will let ya'll know how it goes.

I am a 42 year old woman. I started taking Topamax in March of 2008 for severe migraines. The migraines often caused vomiting and for my body to jerk similar to having seizure. I have had migraines for the last 15 years, but prior to starting Topamax I was having migraines almost every day (for about 6 months). My life had come to a stop. I had been through all of the neurological tests, and CT scans, etc. with no results. Topamax has nearly halted my migraines. I have a severe "head-ache" about every 6 weeks now that last 3 days. A huge improvement! However, my doctor had said that I should not be on Topamax long term so I have tried going off of it twice in the last year, each time on the 5th day to be hit with an all consuming migraine. I had come to this website to find out why I should not be on Topamax long-term to discover that many of the other health problems that I have been complaining about in the last year are probably a result of Topamax and the doctor did not ever suggest that was the case. I have TINGLING IN MY HANDS AND LIPS...the doctor thought this might be my thyroid, but that test was normal. I have had REDUCED VISION, the doctor said it is due to age and working on a computer all day. I have had JOINT PAIN which they are treating with an anti-inflammatory and suggested it’s probably the onset of arthritis. I have had WEIGHT LOSS, SHORTNESS OF BREATH, and the PAIN IN THE BACK OF THE HEAD. These are all things that I see others describe as symptoms of Topamax! Wow! I wish my doctor would have told me this so I didn't think there was something else wrong. I WILL NOT STOP TAKING TOPAMAX. Even if taking Topamax meant that my life would be 2 years shorter or something like that, there is no living in that kind of daily pain. But I am grateful to know that the symptoms are normal. Topamax has giving me back my life.

I am new to Topamax. Just started for severe/horrific migraine pain - I have been getting migraines that lasted 8 days long without relief for the past few years, popping imitrex like m & m's. Mine seem to be related to a drop in barometric pressure as well as to being perimenopausal. They were ruining my life. I am currently on the 25 mg in the am dose and 50 mg pm dose schedule to titrate up to 50 mg twice daily. So far I have had only 2 migraines in the past 30 days instead of 8-16!!! I am a much happier person- I can't even describe it. People at work even tell me I LOOK different! I do however, have some intermittent tingling/numbness in my fingers mostly, passes quickly, little back pain, and some little headaches that come and go. I can so deal with these. I have only had to take Tylenol or Motrin on three occasions in the past month. I used to take two imitrex and still had take 400mg of Motrin and 1000 mg of Tylenol just to numb my migraines. Can I tell you I used to be somewhat non-functional and still go to work everyday- I am a nurse!
So far Topamax has given me my life back because I seriously considered driving into a tree one day on my way to work before starting it. Wish me luck.

Ok, so here is a new one for you. I have had migraines for a very long time, since I was a teenager, and never really sought physician treatment because in our family a headache was "nothing to cry about". So, now that I am married with 4 kids and an advancing career, having migraines on a weekly basis isn't something I can live with anymore. So I went to my doctor. He said what about preventing them with Topamax. I know what Topamax is, I'm a nurse, I know what the potentials are, but I had not really heard of the side effects when using it in a perfectly healthy person. ANd I must say it has to be my own fault for saying "sure" and not investigating first. WARNING= Topamax is a drug for seizures, effecting the central nervous system, and will have effects on a healthy person's central nervous system. Now, not doing my research I will also not have known that you are supposed to be titrated very slowly up with increasing doses, starting at a suggested dose of 15-25 mg per day for the first week the 50 then to 100, etc. I was begun at 50 mg/day for a week then 100 mg a day thereon out. Please, if you experience the symptoms the pharmacy warns you about, but they are exaggerated, go back to your doctor!! Here are my symptoms by day
Days1-3- Normal effect- tingling hands/feet, taste loss of some drinks, foggy unable to think clearly
Day4-5- horrible head pain, back of my head, not like my migraine pain, stabbing and pins/needles in hands/feet, still can't taste, nausea, dizziness, confused (like I couldn't find my way to my doctor's office confused)
Day 6- And I am entirely embarrassed to say this one because I am a nurse, and I know what it implicates... Pseuedoseizure. I was in the doctors office, in the waiting room and I could not control my muscles. I knew it wasn't a seizure because I could hear some of what was going on around me, but something was not right. I couldn't move anything and I didn't remember everything. And all the above symptoms, along with. But, naturally normal CT...
Day 7- It happens again... And this time I have some right sided weakness and all the above, that's it, it has to be the Topamax, we are done. It's only been a week, so cold turkey.

That is my experience with Topamax, and unless I am actually seizing, it is a journey I will never take again, I have 4 little ones that depend on me too much. PLEASE research before you try whatever is handed to you!!

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

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.

Topomax has been the only drug to keep my migraines under a reasonable amount of control with no ill effects. I really can't complain about anything with this drug other than its cost. The only thing I ever experienced was early on when I was still adjusting to it, sometimes if I was sitting still with my arms crossed, or I was laying down, my arms and hands would suddenly feel detached from my body and big like balloons...like they weren't mine or something. I'm not complaining though, I actually really liked the feeling -- it was accompanied with a slight light-headedness. :)

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

I have been using Topamax now for 8 years off and on. I stopped the Topamax about 3 months ago, something I do once or twice a year to try and feel 'normal' again. Then last month I went to see my regular doctor because of numb, pale, swollen, achy fingers, swollen ankles and feet, and for a papercut on my knuckle that overnight turned into a radical staph infection. The NP ordered a full blood panel and the results came back positive for Lupus. I have had so much pain in my hips and knees, more frequent headaches (not migraines), insomnia and vision trouble. The past two weeks I have been super irritable and nauseous. I still need to have a 2nd opinion and/or referral to a rheumatologist, but is all of this related to taking the Topamax? I take 2 Imitrex injections if a migraine comes on and am hesitant to start the Topamax if it has indeed induced Lupus. Am I crazy or is this common??? THANKS for the feedback...SM.

since starting topamax in may 08, 50mg twice daily, i have had constant pain under my right rib, feels like something is eating a hole straight through to my back where the pain wraps around. also have some trouble breathing, constipation. have had gallbladder ultrasound, hida-scan of gallbladder, endoscopy, cat scan of chest and abdomen and chest x-ray, along with a zillion blood tests all showing normal. no one can find the source of my pain, the only thing is how the time corresponds with my pain and when i started the topamax. can anyone tell me of any similar side effects they have had, is it the topamax causing this? and should i stop. i'm feeling as if i'm poisoning myself. i need help. thank you for anything you can tell me.

I've only been taking this drug for two days - 25mg in the evening - and I've already got side effects. I get tingling in my fingertips, and all down along the bottom of my fingers. I've been feeling nausea as well, and writing this, my brain feels a little blocked and slow. I also think I'm losing my appetite, which could be a good thing, considering that I do need to lose weight. But I don't think it is worth it if I end up getting side effects like the ones that have been posted by other people.
I'm a writer, and I cannot afford to lose my memory, or suddenly not remember how to spell words, or to communicate effectively. Should I stop taking Topamax?

Hello-
I am here to share my story about topamax in hopes that others may read this and not have to go through what I did. I went on topamax for the prevention of migraine headaches. It worked great to prevent my headaches but gradually I could not talk, I stuttered severely, and I have memory and other cognition problems. At my doctors recommendation I stayed on the medicine for about 6 months because he assured me that the stuttering would go away. I was in such awful pain that I agreed with him. Needless to say that 6 months was not me. I couldn't talk and I couldn't think. Now when I think back on it, I wish I had just endured the pain. When I went off of the medication I still stuttered. It was not quite as severe but it was bad. It effected my work, my personal life, and daily menial tasks. I could no longer communicate. I was devastated. My doctor was puzzled and said that he had never heard of this before. So to make a long story short I went to a speech clinic, bought casa futura techs small talk device, and tried some anti-stutter meds. My speech now, 2 years later, is much improved thanks to the smalltalk but guess what,? I still stutter. Manageable and not very noticeable to others at times but my speech has not returned to pre-topamax status. I looked into sueing the drug company to bring awareness about this issue but did not get much positive feedback from attorneys. IF YOU ARE ON TOPAMAX AND ARE STUTTERING, STOP TAKING IT. IT MAY NOT GO AWAY WHEN YOU DISCONTINUE THE MEDICINE. It is not worth it. You cannot put a price on speech. I don't care what the physicians desk reference says, what your doctor says, what the corrupt drug companies say. I know my experience and it has been a catastropohic effect from topamax. Find a different med if you have speech problems! Please, for your own sake. Thanks for letting me share my story.

Hello,
I'm a 38 yr old female who was prescribed Topamax about 8 weeks ago for Migraine prevention.
So far, the drug is working fabulously for it's purpose.
Here are the pros and cons that I have experienced:

PROS: No migraines. Yippee!, A small amount of weight loss. This did not happen until just in the last week or so. My mood has stabilized.

CONS: Flat tasting soda, Dry skin, Dry eyes, dry mouth, (drink LOTS of water to combat this). Blurred vision, bouts of memory loss and slurred speech, loss for words. Some of these improve as your body adjusts. Worst for me is that if I miss a dose or don't take it at the same time every day (50mg in the morning, 50 at night), I'll have middle of the night anxiety attacks or even amnesia.. short-lived attacks, but very terrifying.. I always think someone is out to kill me. But again, for me, it's short lived and it only happens when I'm not taking the meds on a schedule.

Overall, I am happy with the drug. I am not experiencing hair loss or tingling. I drink a TON of water because I hear kidney stones are common with this medication.
I will endure all of the above to prevent the wretched migraine....

I hope this helps someone...

Take care and remember, God can help in your healing.. ask Him for it.. :)

God Bless..

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 found that Topamax was the wonder drug for me. Thank God for it. I suffered with lupus related headaches for years and could not find anything to control them. They were horrible until my doctor prescribed Topamax. Three pills at night (25 mg) and two in the morning (25 mg) controlled the headaches completely. No more pain at all. While I did lose weight, I now get to eat whatever I want because I don't seem to gain any weight for the first time in my life, which is a very nice side effect. But more importantly, I have not had a severe migraine for quite some time.

I have been taking Topamax for just under a year for severe migraines, and at first everything seemed fine. I wasn't worried about the flat tasting carbonated drinks; I just cut those out. I did not experience weight loss but there again that's not why I was taking Topamax so I didn't mind. The Topamax did work to reduce the number of migraines I had each month although I still got maybe one a week. The fuzziness in the brain did bother me somewhat. I have always been good at adding up columns of numbers quickly and I could not do that anymore, and words often escaped me. These were worth it for the migraine trade off.

But about eight months ago I started noticing I was having these terrible anxiety attacks, mostly in the middle of the night. I would wake up and feel terrified about everything, something I had never experienced before. Even during the day I would often have this low grade anxiety all the time. Very unpleasant. I didn't even think to question that it was the Topamax causing this, Then about six months ago I began feeling extremely depressed even though I do take a low grade antidepressant to also help with the migraines. My Doctor switched the antidepressant but it did not help; the depression just kept getting worse. By last month the depression was so bad I was really a mess. Crying, feeling hopeless. Between the anxiety and the depression it was debilitating.

So I went online and really searched the idea that perhaps it was the Topamax causing these issues. Sure enough there it was; lots of people have problems with anxiety and depression while on this drug. Currently I have been weaning off the Topamax in the past week and unfortunately I'm having rebound migraines because I've had one every day for the past week, but I'm determined to get through this. The depression and anxiety were just too disturbing and debilitating.

For anyone who is considering Topamax for migraines I would say just educate yourself about these side effects and monitor yourself closely. It can be worth the try but it can have serious repercussion too. For anyone considering taking Topamax for weight loss I would say "don't be a fool". These meds were developed for serious neurological conditions like Epilepsy. To take them to merely lose weight is frivolous and irresponsible to your health.

I've only been on topamax for about a month and a half and already I'm feeling some interesting side effects. In the first week of taking the medication I had such pressure behind my left eye I thought it was going to pop. It eventually went away and has not come back (thank the Lord). I also experienced some pretty nasty numbness, tingling, and uncomfortable pins and needles in my fingertips and toes/sole of my foot. The tingling in my hands usually lasted a few hours and the tingling in my feet only lasted for a couple of minutes. This tingling is never predictable.

Eventually the tingles went away and I was tingle free for a while. But in the past few days they came back. It actually coincided with my PMS. The tingles came back and with intensity about three days before my period started. I was wondering if it was common to have a side effect return or increase in intensity around your menstrual cycle? My hormones are pretty nutty and the reason I'm on topamax is to stop severe migraine auras and slight seizures that are tied to my menstrual cycle.

The feet tingles are the worst. It feels like I'm being jabbed with needles and I hate when it happens while I'm sleeping because it wakes me up and I can't fall back asleep again until they go away... they are that irritating. The hands I can deal with because I'm used to my left arm going numb when I was having the auras.

My sleep patterns have been disturbed because of topamax... I'm not too peeved about that. I still manage to get enough sleep. However there are times when I'm out with friends or having conversations and I'll know the word I want to say and I'll just bust out the wrong one. Like for example saying symphony instead of sympathy. My friends have gotten used to it and know what I'm trying to say. It cracks them up when my word salad produces sexual innuendos on accident when I really mean something else. BUT it's really messing up job interviews at the moment. I'm a bright and articulate person who is getting her BA in Anthroplogy and Archaeology, minor in History and am trying to get research assistant jobs at museums and universities. It's really hard to get a job when you are sitting there sounding like an uneducated moron high on crack.

I haven't had problems with memory, thank the Lord. Even though I've got the word salad going on (and it's strange... the word jumbles are only when I'm speaking... I'm super coherent when typing) I'm not forgetful. I was able to make it through finals week perfect, while juggling a full work load. I hope I don't start losing my memory.

I haven't lost any weight (AW SHUCKS!!!!!). I was looking forward to that one. How soon should I expect to lose weight by, if I do in fact lose weight? I'm a difficult duck when it comes to weight loss. I've been at a stable weight since I was 13. I'm an athlete so my body is my temple sort of thing. But in the past two years I've put on a little bit of unwanted weight in certain areas when I stopped hitting the weight machines :( My question is, if I haven't lost it yet... will I lose any?

I'm also classified as type II bipolar, obsessive compulsive, and anxiety disordered. I've noticed my mood has stabilized. I'm not as all over the place as I used to be. My highs could get pretty high and when they would get up there my obsessive compulsive would almost go on a little joy ride. And when I was low, I was super low and my anxiety would take the depression out for a spin. But now I feel a calmness and a zen that I never felt previously. It's not an apathy I can certainly tell you that. I feel like I am in control of my life. I thank topamax for that.

Reading all of these posts I just worry that the honeymoon period of my medication maybe over. I worry about other side effects cropping up. I think that I can deal with my tingling extremities and that I can manage my word salads. I don't want the pressure in my eye to come back. I also don't want to start exhibiting the other side effects. What is the possibility that I will start exhibiting more side effects or are you generally stuck with what initially presents in the first month or so? My doctor also does NOT intend on increase my dosage. He thinks 50mg once a day will do me just fine. Oh and one last question, anyone else experiencing the side effect increase coinciding with PMS?

Sorry for the super long post! All replies are welcome!

I recently increased my dosage from 25 mg to 50 mg and noticed my hair has been falling out. I just feel tired all the time. I thought I was going crazy until I read this site! I will talk to my doctor very soon. I did not think there would be problems with a "low" dose.

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