Topamax and hair loss

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'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.

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..

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 was put on topamax for migraines back in aug 07.

well, i stopped it like 5 months ago. (2june 08) i still feel "out of it" like i'm here but im not. headaches came back but i would rather deal with them than all these side effects. i got severe panic attacks and nervousness, MAJOR HAIR LOSS, AGORAPHOBIA (FEAR OF LEAVING MY HOUSE CUZ IM SCARED TO HAVE ANOTHER PANIC ATTACK), i constantly feel dispatched from my family (i have 3 boys and a husband) every day i feel sick or tired, or both. which led me to stop the meds. (25mg am and 25-50mg pm) i weaned off over like 2 weeks (on my own cuz the neuro told me not to stop it and its all in my head.

i had to quit my job cuz of the panic attacks that just happen for no reason.

i still feel all the side effects even though i have been off topamax. hair loss, panic attacks, depression, "high" feeling all the time, cant hold a normal conversation. i have changed soooo dramatically from when i first went to the neuro and started this HORRIBLE DRUG. poor concentration, i don't feel like i want to be involved in anything- i just wanna lay on the couch with an ice pack on my head. i don't know what to do. my neuro doesn't know i stopped the drug and i was so mad at him for putting me on it that i didn't go to my last appt. now i have to wait until January to see him.

I have been on 200mg of Topamax for almost a year, which helped my headaches immensely so I tried to ignore the itching. The itching got so bad (especially when I get hot and would sweat) that I had to go off of it. I have been off of it for about 4 weeks and I still itch, does anyone know how long this will last or if it will ever go away? If I am going to itch without the drug anyway, I might as well take it and have relief from my headaches.

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.

Topamax makes things taste yucky!! things like soda, beer, etc. And I've typed a whole report before or listed something on ebay and only looked back later and called myself a STUPIDAS# because of all the misspelled words- should of used spell check- which if you take Topamax make sure your spellcheck is on! Don't know why but the med will slurr your speech and brain. I do still get the occasional migraines while taking it so I'll stop it, plus tired of the spelling probs I have while on it. But my doc says I should be persistent with it, just like everything else out there... there's always a price to pay! Other than that, no side effects like stomach pain or weight loss like I've heard in others. Oh but it will make you tired..especially at first..very tired!

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 have been taking Topomax for migraines for about 3 years now. Staying at the 75mg at night dosage. Going to 100mg just does not work for me. GI disturbances too severe. Diarrhea mostly. Early on same as a lot of the other reports, tingling in hands, bad tasting soda, some hair loss, and intermittent upset stomach and diarrhea. Memory not as good as without the med and balance a little off. All of these have diminished in intensity and frequency. Up side, weekly headaches that forced me to go to bed gone. Being an irritable wretch because my head hurt, was about to begin to hurt, or just got over hurting gone. At this point in my life the pros still outweigh the cons and as long as that is true I will continue with the regimine.

My psychiatrist started me on Topamax 2 yrs ago for depression from being 75 lbs overweight. Started at 25 mg/day up to 50/day for 2 yrs. Lost 70 lbs and kept off with only minor side effects. Also took 150/day Wellbutrin during this time. (For being kind of a neat freak and washing my hands a lot.- didn't affect my social or work life much) Have slowly started gaining the weight back (+12 lbs). Seem to have built up an immune to the 50/day dosage over the 2 yrs. So he added 25 in the am in addition to the 50 I've been taking in the evening. (1 mo. ago) Having some strange reactions. My memory seems to be taking a real hit. I am a CPA (passed these exams 15 yrs ago) and now I'm studying for the Cert.'d Internal Auditor exams. I am having a great deal of trouble trying to memorize for these 12 hour long tests! I feel fatigued every day. My blurred vision (that requires reading glasses) has gone crazy. I can't read the song book at church at all. And I'm only 47!. I've had acne like bumps all around my nose and face. How could such a slight increase cause so much change? Also sometimes my heart feels like it is going to beat out of my chest. And I'm losing patience w/my 13 yr old son who's pushing my buttons to see how much he can get away with. He seems to sense that I'm not at my best. But if I go off this Topamax and gain back my 70 plds I know I will plunge into a DEEP depression. Has any one talked to their doctor about the possibility of these side effects going away after time? My tingling hands and feet did and my slight hair loss did. And my weight loss is trying to go away but I don't want that. I'm majorly concerned about the memory loss and blurred vision eventually going away. DALIAL

I was wondering if topomax causes high blood pressure? Also I'm on 350 mg a day plus 1600 mg of tegretol a day . I was wondering if any one was on such a high dose?

ok i have been taking topomax for about roughly 7 years. at one time it got so bad with the memory loss they put me on the alzhimers med. that they proscribe for about everyone with alzhimers. i have had clumps of hair fall out so they put in a prescription for hair loss. i once weighed 100 lbs size 0 im 5 ft tall and i am usually about a 7-8 . the topomax i was taking it for my toruretts syndrome and every so often it causes a clich ill have face freezing that will last for and hour to 3 days or make it worse. ill get hives i get aggressive angerd very easily at the drop of a pin and wont eat at all because i forget i forget everything i once stared at a wall for 3 hours i couldn't move my body or eyes my mind went blank like someone shut off the electricity . plus bad acne ( um when i first took it it was like i was getting high with my entire body tingling like when ur foot has fallen asleep even my eyes felt like that) i have sufford some vision problems everyday and forget what and where i was going it has made me have some psychological problems increase
i have now recently stopped taking it i still get rashes i am always cold hair is still falling out still hear a ring in my ears i see things that aren't there like little firecrackers going off in my vision or blackouts like when u get a migraine i am always itching tingly all the time aggravated all the time
but now i eat i have gained like close to 20 lbs but i am more focussed in some things it helps when i am in class to stay focussed but not really because im not used to being so alert but i think i like not feeling foggy anymore

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

I've been taking Topamax now for about 6 weeks, and my headaches are still just as bad as ever, except now I have headaches with the thrill of numb fingers, confusion, weight loss, memory loss, an absolute horrid taste in my mouth, and now the latest.... my hands feel dirty all the time. Has anyone experienced this?? I just feel like my hands are dirty. I wash them, and a half hour later, it almost feels like there's a film on them, and I have to wash them again. Almost ocd-ish. So 6 weeks in.... Anyone have any advise on how much longer I should give this topamax before I give up on it & try something else? My doc said it should have worked by now if it was gonna - but I have read on here, that it sometimes can take months...? I just don't know if I can take these side effects, AND the headaches for much longer without going NUTS! {grin}
Any advise?

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 take 200mg a day (100mg in the morning and 100mg at night) for seizures. It has been my miracle drug. Granted the side effects were awful. But I did my research before starting it again. I had taken it previously for migraines and couldn't tolerate it. If you take the appropriate vitamins while taking it you can help to alleviate a lot of the side effects that you may have. Topomax can absorb some critical vitamins out of your body which causes some of the side effects. The vitamins that I take are: a high dosage of a Super B Complex (tingling, numbness, fatigue, speech). L-Carnitine (memory loss), Biotin (hair and skin). There is another website with postings similar to this which is where I discovered other patients taking Topomax that had discovered using the vitamins helped. Once I got on a good regimen of vitamins it made a big difference. I still experienced and am experiencing weight loss (but I just had a baby) so I am not really upset about that. LOL Anyways, I hope that information helps someone out there. It sure did help me. If I can find the research link that had the vitamin listing that it depreciates I will post it.

I am also experiencing hair loss and have been on Topamax about 2 months. I had no idea this was a side effect. I initially lost weight which was wonderful, but then my weight dipped so low my family and friends thought I was anorexic. I was finally wearing a size 3 pants. I normally am in size 8's. I am on it for bi-polar and to help with binge-eating. But I cannot deal with the hair loss. I don't think that being skinny is worth losing my hair for. No other meds have helped my depressive moods without making me gain weight and at this point I just don't want to take any drugs. I would rather try some therapy...that has become less common. The doctors just want to give you a pill now-a-days.

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

Hi so I've only been taking Topamax for five days now and I have a question? I am black and I also have a problem where I woke up this morning and instead of hair loss per se, my bangs on either side were cut straight across about 4 inches missing (this is a lot for a black person, maybe even to anyone trying to grow their hair for their upcoming wedding). It's like someone used scissors to cut off 4 inches, of only the front of my hair (breakage). Has anyone else heard of this? Please help.

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

I have been happy with the pills because they have taken away my migraines! I began on Topamax this May 2007 at 100mg per day until this Aug when I starting to have migraines again and my doc increase my dosage to 150mg a day.However, I think the increase in dosage has caused me to have nose bleeds. I was awakened by nose bleeding on two nights this past week. I see my doctor tomorrow to see if there might be another reason for the nose bleeds. The sleepiness was only a problem in the beginning, until I got use to the pills. The weight loss side effect is one I could use. However I have only lost 1 pound since I have started taking Topamax. Tingling in toes and heels, thirsty, taste change, upset stomach (must take a anti-acid with pill). No hair loss that I have notice. I am a bit depressed and right now don't want to have much to do with hubby. But he has gotten us into some serious trouble with the IRS. Which would cause depression, weight loss, anger, & loss of sex drive all of the things mentioned as Topamax side effects. I'll wait to see if any of these things increase before I stop the Topamax. Good luck to all!

I have been taking Topamax for approx. 8 months now - 50mg in the morning and 50mg in the evening. Was found to have a Cevernous Haemangeoma
on the front left temporal lobe which caused me to have Epileptic symptoms however never has full fits - just stroke like syptoms.

I have tried Epilim and all the other drugs. After taking Topmax i felt good for some time then the weight loss kicked in, some hair loss, pains in the right knee, tingling in the hands and under the feet. I could live with these however
i have been really battling of late with my urinary system. It is always as if i have a bladder infection, pain in the lower abdomen etc. Done scans etc. to check for stones - zero. Have decided to wean off Topamax and see if these
effects go away. The drug did wonders for my brain problem but the side effects have just gotten too much.

I too had chest pains!! That is something that they do no tell you.

This medication definitely needs to be re-evaluated by the FDA, to determine what damage it may do to your heart.

I was already seeing a psychiatrist for Panic disorder so I had valium at home. However, I still ended up in the ER for my chest pains after getting no call back from my dr for two weeks telling her that I was having all of the other side effects ( except the hair loss), tingling in the hands and feet, fatigue, moodiness, different tastes of things, especially colas.

Nevertheless, I was diagnosed at the ER with having a panic attack....DUHHHH, how could I possibly be having a panic attack when I had taken about 2 1/2 10 mg valium to try to get my chest to stop hurting. I explained to the ER dr. that I had started taking the topamax 3 weeks prior...There absolutely needs to be better education of this drug and its terrible side effects!!!

Hi Everyone,
I have been taking Topamax 25 mg for 1 week. I can't stand it. Today I am to up my dosage to 50 mg.I am not sure if I want to do that. The side effects suck.. I think I would rather just deal with my migraines, at least I know how to do that since I have had them for over 25 years. I have tried everything and nothing has worked so the Dr. and I thought we would give this a try.
I am trying to keep my place of employment happy with trying to cut down on the migraines but nothing works.
Most days I just want to give up.
Hopefully we will be able to figure something out.

I can't stand the pickhands and feet, the stumbling like I am drunk( and I dont' drink) nothing tastes right anymore, I have the shakes and I ache.
And all it does is makes me sleepy and like I am in another world.
I went to work today and made it half an hour before I came home because I stumbled and almost fell over. And when the boss talked to me it was like I wasn't there. So I came home. I don't know but I don't like it at all.

Topamax is TERRIBLE... works great for migranes, but losing SOO much hair. I have been off of it for 4 1/2 months ... hair loss is slowing, but still going. My gorgeous hair turned to brittle straw... Also T affected my liver and nervouse system. It is AWFUL... not worth it.

I have been on topomax for about 10 days(50 mg for first week and 100 mg since then). I have severe hair loss, loss of apetite, memory loss, loss of words, confusion, not able to think clearly, mood swings and depression. I am worried at all these side effects. I sometimes think, if I have to chose between severe headaches and all these, is it worthy to continue Topomax? My Doctor only warned me of tingling effect on fingers and toes and nothing else. Today I had been to another doctor for second opinion and he actually asked me a few question as part of check up and the it struck me that all these things are happening to me. I was kind of ignoring these effects so far thinking they are part of post partum depression.

Hi All,

I have been taking Topamax for about 3 years now for migraines, and it has been a godsend. I am taking 200mg a day, 100mg in the AM and 100mg in the PM. I experienced all the usual side effects, confusion, dizziness, bad taste, tingling, blurry vision, etc. but these do go away with time. Here are a few things that can be done for some of them. For the dizziness, your doctor can prescribe for you Antivert. For the tingling, your doctor can prescribe for you, I think it was called HZTC or something like that, it was a water pill, I am not sure of the name, but ask your doc, I am sure they will know the correct name when you ask them about it. All of the side effects will go away with time. I did not experience the hair loss, so I can't say if that will go away, but the others will. If you do decide that you want to stop taking Topamax, please do not go off it "Cold Turkey", I have read up on it, and you could put yourself at big risk by doing this, seizures, etc., remember, this was first a seizure med. Please wean yourself off.

the mood swing side effect is very real. I'm currently taking a very small dose of prozac to counteract it. it doesn't effect everyone that way, and from what I understand, it can be just a temporary side effect due to the titration. once you stablize on a dose, it should lessen I'm told. after I nearly bit the head off a produce guy at nearby market for no reason at all, I knew I didn't want to wait and see, lol.

i've been on it for about 10 months now and i've had plummeting potassium levels, so much so the doc prescribed prescription potassium supplements and a excellent quality multivitamin plus minerals. that seems to be doing the trick.

I am showing hair loss and extreme weight loss too (so far over 30lbs), problems with gums. I can treat the gum problem with biotene, but the hair loss is a problem and the weight loss, well, i can stand to lose a few lbs.

I also have night sweats which are just weird and have problems with body temperature regulation.

all this on a whopping 45 mg a day!

still, I love my topamax. it's the only thing that's eliminated most of my every other day migraines.

hair loss frontal..
been on topomax for 3 years 200mg nightly to control migrains. Went to all types of Dr and did all types of blood work finally it was decided that the Topomax is causing the hair to fall out. Yes I take vitamins and fish oil and super omega-3. It is hopefull that the hair will start to grow back I would hate to be bald at 36.

I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.

I HAVE PERMANENT SENSORY PRECEPTIN LOSS IN MY MOUTH, MY DR NOW WAS IN ON TESTS AT BEGINNING AND HE SAYS IT IS A SIDE EFFECT OF TOPAMAX, I WONDER IF ANYONE ELSE HAS HAD THIS SIDE EFFECT AND IS AFRAID TO TELL ANYONE BECAUSE PEOPLE WILL THINK THEY ARE CRAZY, MY DR THAT I HAD EARLIER WHEN THE SIDE EFFECTS OCCURED DID THINK I WAS CRAZY AND GAVE ME DRUGS TO MASK THE PROBLEM AND THEY MAKE ME FEEL CRAZY. I ALSO HAD ALL THE TYPICAL SIDE EFFECTS, WT. LOSS, HAIR LOSS, ETC.

Im only 16, and ive been on topamax for about 6 months. Im on it because i have epilepsy, and because of my headaches. Just recently in December i got put on 100mg and ive been noticing alot of hair loss. I also get alot of tingling in my hands and feet, sometime in other places. Sometimes it is really painful. Yesterday, i was wondering if hair loss was a side effect of Topamax so i decided to look it up on the internet and i found this website, and i read what everyone else had to say, and now im kind of scared to see if any thing else happens. I haven't had anything like Soda Pop tasting bad but yeah.

<3 Sarah :)

I took Topamax for about two years. It was prescribed for problems sleeping and for my migraines. It helped me sleep but never touched the migraines. I also lost 15 to 20 pounds which made me happy so I kept on it, thinking eventually it might kick in for the migraines. I was taking 50 to 75 mg a day. Three months ago I realized my hair had become much thinner on the top. I searched the web and saw this is a side effect. My dermatologist confirmed that Topamax can do this. I went off it as soon as I made the connection. I was never warned about this as a side effect. The only other side effect I had was a strange twitching in the muscles around my right eye. My question for others who have experienced hair loss is how long does this take to reverse and for the hair to grow back?

I have just discovered this site and was amazed to find out that Topamax caused hair loss. I have been on Topamax 100 mg. for about 1 1/2 yrs. now and started to lose my hair, and didn't know why. Also I just recently in Nov. started to get ringing in my ears called Tinitis and contacted the Tinitis Assoc. and they sent me a list of medications that can cause ringing in the ear. Yes Topamax is one of the drugs listed that can cause ringing in the ears. I'm definitely going to stop taking Topamax and try the B vitamins that have been recommended. Thanks.

I have been taking Topamaz spinkles (30mg a day) for 3 months. I can't tolerate higher doasages. Migranes have lessened in intensity, although I still have a least 2 a week. I have toruble with my memory and hair loss. I have had a slight wt loss. I have no sex drive. Food does not interest me.
I started taking topamax because migranes were interferring with school. Catch 22 - I failed last semister due poor recall. I am taking myself off topamax. I may have migranes, but at least I will enjoy sex.

I've been on Topamax 3 weeks now, and I've read all you side effect comments and I agree with all soda taste terrible! I have not experienced any hair loss as of yet, very little tingling in my hands or feet, my biggest problem is aching legs, it's literally waking me up in the early morning hours and can last a couple of hours, has anyone experienced this? It has started since I've started 75 mg on my 3rd week. But my migranes are completely gone and my appetite has lessened which is another plus! Thanks for any feedback.

Hi-new here and new to Topamax! I am taking Topamax for BiPolar. I have tried a dozen different drugs and they all seem to make me gain weight. Thsi seems to not have that listed as a side effect. As a health careworker I am very dedicated to being on top of knowing the side effect of my meds. I have been having issues with hair loss and thought it was again issues with my thyroid but must have been the Depakote-still hasn't stopped-guessing it's not going to huh?
Anyhow, I have tingling in my face-anyone else??? I have found that soda tastes HORRIBLE! Not such a bad thing though! I have found that my appetite isn't too vast either.
Anyhting I should be seriously worried about???

TOPAMAX HAIR LOSS and BIOTIN:

Recommend that anyone losing hair to immediately start taking large doses of Biotin (a water soluble B vitamin) in doses of 5000 mcg (5mg) to 10000 mcg (10mg). Since TOPAMAX goes after your nervous system I also recommend that you take B12 (it must be methylcobalamin B12 only) 5000 mcg (5mg) to 10000 mcg (10mg) and B6 25-50mg. See a doctor and if possible see a Naturopathic Doctor.

I have only taken the medication for 24 hrs and have noticed a difference. My taste buds are all messed up. Im a chocolote lover and it doesnt even taste right. I can taste the minerals in bottled water which tastes crappy to me - nothing i like tastes like it use to. reading all the posts kind of scares me - can anyone tell me how long it was when you first started to notice the hair loss? Thanks.

ALL, if you are taking TOPAMAX for migraines you need to read the article in last year's Science News where doctors have linked the migraines to a heart defect that is common in women and once corrected the migraines go away completely. Long term use of TOPAMAX may be detrimental to your health. I recently posted: My wife is experiencing massive hair loss. She had a metabolic panel ran on her to ensure it is not thyroid and is scheduled to see a specialist on hair loss next week. I just came off the National Institute of Health website at www.nlm.nih.gov/medlineplus/druginfo/medmaster/a697012.html where they list hair loss as one of the problems with the drug. They recommend that you see a physician immediately. My Wife's hair was literally coming out by the roots and since her hair is naturally thin it won't be long before she is bald unless she can get it stopped.

My wife is experiencing massive hair loss. She had a metabolic panel ran on her to ensure it is not thyroid and is scheduled to see a specialist on hair loss next week. I just came off the National Institute of Health website at www.nlm.nih.gov/medlineplus/druginfo/medmaster/a697012.html where they list hair loss as one of the problems with the drug. They recommend that you see a physician immediately. My Wife's hair was literally coming out by the roots and since her hair is naturaly thin it won't be long before she is bold unless she can get it stopped.

I started taking Topomax three weeks ago and have been feeling spacey, dopey and drowsy since. My sleep is interupted, my feet and legs are numb and tingely much of the time and I have a hrad time concentrating. My skin is very itchy, too. But, what disturbes me most are the postings about hair loss. My hair is thin and fine to begin with -- I can't stand to lose any hair. My doctor didn't warn me about this. Also, I've not lost any weight on the drug, although I did give up drinking sparkeling mineral water as the taste changed dramatically. I am about ready to ask to be taken off the drug, although I haven't had a single migraine since I started, and before I was getting 4 - 5 a week and they'd last 1 - 3 days (and some up to 8 days), so this is a big improvement.

I took Topamax for approx 6 months (25 ml / day). During that time I experienced severe hair loss. I have been completely off for about 2 months and am still loosing hair! Is this normal? Has anyone else out there experienced this side effect. Are there any vitamins I could take to counteract this?

I have been on Topamax for 6 years and the side effects that I have experienced have been dry eyes, dry mouth, muscle/joint aches, chest pain, memory problems, body odor, fluid retention, weight GAIN (not loss), head aches, mood swings, hallucinations, blurred vision especially at night, tingling/burning of the extremities, and the constant feeling of never being able to get warm. I was on 400mg twice a day, and since the hallucinations, I have been cut back to 100 mg twice a day. My headaches are worse, and I am now experiencing hair loss and hair breakage.

I took topamax for almost a year and stopped about one month ago, I noticed about 2 months ago how tired I was all the time and that I was losing A LOT of hair, I wish someone would've told me that this was a possibilty, I never would've taken it, now I just keep wondering when the hair loss will stop and it will start to grow back! I hope that its soon because its driving me crazy! I will figure out some other way to deal with the horrible migraines that I get, I don't need a medication that has so many awful side effects, hair loss is definately the worst, but it also makes you feel like you're a bumbling idiot that can't speak properly at all, DON'T take this if you have other options

I have been on this drup for about 6 months at 50 mg twice a day. Within the last two months, the effectiveness of migraine prevention has seemed to have worn off, and I have noticed an abundance of hair loss. Has this happened to anyone else out there? I have an appointment with my physician to see what can be done about the migraine issue because I cannot go back to 4-5 migraines a week! If any of you have any experience with this type of issue and Topamax please post or let me know! Will the hair loss taper off or get worse?

I'VE BEEN ON TOPAMAX FOR ABOUT A WEEK AN DHALF NOW, AND I NOTICED SOME HAIR LOSS, IM VERY TIRED ALL THE TIME, I HAVE ALMOST COMPLETLY LOST MY SEX DRIVE WHICH I SUSALLY VERY HIGH, AND I HAV EMAJOR MOOD SWINGS. BUT ON THE OTHER HAND IT WORKED WONDERS FOR MY HEADACHES AND IT CURVED MY APPETITE TREMENDOUSLY.

I've been on Topamax since 11/05 for migraines. I had the tingling in my hands/feet and soda tasted off but that went away after a month or so. Then about April I notice I was losing alot of hair and I started having migraines again. I've increased the dosage to 150 mg. I'm not sure I want to stay on this with the hair loss. I was glad to see that I'm not the only one experiencing hair loss. I didn't know that was a side effect until I started doing some research.