September 24th
2008
6:48 PM
I have been taking 300mg of Topamax BID for 4 years. I also am Taking 300mg of Lamictal BID. I have had all The same side effects that have been listed. I still get some numbness and tingling in my hands, feet or legs from time to time. The weight loss eventually leveled off for me. (My Dr. said that would happen). I lost 30lbs and gained 10lbs back. the confusion and memory loss was a big deal for me, but I had finally found a great combination of meds that controlled my seizures. I found B12 shots and no caffeine really helped keep my mind clear and gave me back my "verbal capacity" (you guys know what I mean).
Overall I think it's a great drug. It defiantly changed my life for the better.
I Tried 4 others before I tried Topamax.
Nothings gong to be perfect.
Jessica, Tampa,FL
September 19th
2008
9:42 PM
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!
August 27th
2008
12:00 PM
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!!!!!
-- By coppertop | Reply | (1) replies | Private Message me
July 16th
2008
11:23 AM
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?
-- By cindyann | Reply | (3) replies | Private Message me
July 14th
2008
11:02 PM
I've been on Topamax for a few months now........this is the second time. The first time was in 2002-2004. I was up to 400mg for migraines & depression. It was supposed to do double duty. Well, I was stupid, to put it briefly. I couldn't remember anything. I would stop mid sentence because I couldn't think of the word I wanted to use. I lost a lot of weight, too much. I had needed to lose a little....baby weight. But I looked anorexic. So out to buy a new wardrobe. $$$ I lost a ton of hair!!!! So off it I went. The weight came back very fast....too fast I think. My friend says the same thing of her experience. THIS time I'm on 250mg.....no more than that, as per me. I was stupid for a little while, but it seems to have gone away for the most part. My hair is still falling out, so not much longer on this one for me. The reason I went back on it was for the weight loss ( and it does help the migraines). I was on some migraine meds that made me gain 40lbs over a 2 yr period(Abilify,Cymbalta). NOTHING could get off the weight. Not exercise, not diet. I've lost 21 so far, but my progress has slowed because of Wellbutrin...it makes me crave sweets. And my willpower is nil. lol So off the Wellbutrin I go. I also learned my nastiness could be from Topamax. I snap at the kids. Who knows which drug it's from! I also take Singulair. That's a story in itself. That one's gonna go too.
-- By robin43 | Reply | Private Message me
June 27th
2008
5:58 PM
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.
-- By summergrl | Reply | (3) replies | Private Message me
June 25th
2008
2:33 AM
I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!
June 7th
2008
4:25 PM
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?
May 28th
2008
9:19 AM
I began reading all of the blogs about Topamax and was surprised. I have been taking Topamax as a mood stabilizer since February 2007 at 200 mg at bed time (I probably sleep off the fatigue). The only side effect I am concerned about is the weight loss. Short term memory is not an issue. As a matter of fact, I am attend college and am managing a 3.85 gpa. I wish all of you the best of luck and hope you find something that works for you.
-- By angiepangie44 | Reply | (2) replies | Private Message me
April 26th
2008
2:11 AM
I dont know if it has anything to do with Topamax but i think i may be doing some weird stuff in my sleep or not sleeping as much as i think i am. i would call it cat napping. other than that, the first 2 months were horrible. i had the numbness in the hands and feet and i could never find what i wanted to say and i would stutter and feel like a dope. the doctor told me to wait it out for awhile and sure enough, the worst of the side effects went away. I still have problems finding things to say and im a bit more spacier but my seizures and my headaches and everything that was wrong is gone. Overall. its all good. I would just like to know what the heck im doing in my sleep and if its ever happened to anyone else. Maybe i should call my doctor. hah.
-- By blahblah1223 | Reply | (1) replies | Private Message me
January 27th
2008
9:32 PM
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?
-- By medgirl | Reply | (6) replies | Private Message me
April 1th
2007
7:41 PM
I have been on topomax for 2 years for seizures. They had my dosage up to 200-250mg at one time and now I am on 100mg 1x a day do to the side effects. Now being on the 100mg I just don't feel like the topomax is working or worth taking. So, I stopped taking all together 2 days ago. I have had no side effects and I feel great. I think that topomax is great in the beginning and then being on the med for a prolonged period of time messes with your body, mind, etc..
-- By m.karnatz | Reply | (1) replies | Private Message me
November 17th
2008
7:33 AM
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.
-- By purplerose81379 | Reply | (1) replies | Private Message me