Prescribed Topiramate (Topamax) but worried about side effects.

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Just been prescribed Topamax (gradual lead up to 50 mg for 6 months) and after researching side effects on the internet, seems alot of people are complaining of extreme hair loss which doesn't stop even when you stop taking the med. Any input/experiences from patients in this forum would be greatly appreciated? Maybe this pill is not worth it. 

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  • Posted

    Hi Marie,

    Like you i was so worried. But i hope i can be of help. I started topirimate 3 months ago now and honestly its changed my life. According to my migraine tracker i have been migraine free for 53 days (from every 2 -3 days) i havent even upped the dose and am still on 25mg.

    Now side effects, i don't know if i've just been lucky but the main ones are pins and needles in the hands and feets, particularly if been inactive for a few minutes! Slightly fuzzy head and poor concentration - but i think that is getting better.

    I have found the best time to take it is around 8.30pm.

    Hope any of that helps and good luck xxx

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    • Posted

      Thank you Sarah, that's encouraging. I read so many posts, not on this site but others, of hair just falling out in handfuls which scared me. 25 mg sounds reasonable. The dr. I saw would like me to work up to 50 mg, not sure if I want to go that route. Did you get any gastric issues, gastric reflux?

      Take care xo

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    • Posted

      Yeah mine did too but as 25 is working we were in agreement there is no point. But if stops working will increase dose.

      I have RA and last year i lost so much hair on methotrexate and so i definitely know i am not losing any on this!

      No gastric issues really, heartburn sometimes but nothing unmanageable.

      I see in your other post you are worried about weight gain, and mine is also contributory to stress and RA too but in the 3 months i've been on it i've lost nearly 2 stone xxx

      Oh i just remembered that it can make bleeding irregular and makes the pill ineffective. I hadn't had a period in 4 years and then was bleeding lots. It does seem to have settled down now though within the last couple of weeks.

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  • Posted

    I didn't experiance any hair loss. Not that i am aware of. I do have lots of it. However i was on it for about 3 years. The main thing for me is that i was also on progesterone only birth control and combined with the toprimate my bone mineral density has reduced. I'm osteopenic and should have been taking a calcium supplement while on toprimate. If you do decide to take it then you should talk to your doctor about bone loss. The other thing is if you are of child bearing years. Be aware that toprimate is not compatible with pregnancy. It will cause birth defects if you fall pregnant on it. It also makes your blood more acidic and should be aware of metabolic acidosis especially if on other medicine and/or live in a hot climatem

    Ive pretty much been on everything at some stage. I have found endep the most successful, sandomigran was great but weight gain is terrible. Gabapentin is a bit more kind to the body than toprimate. I have found that better but generally reviews support toprimate. Good luck

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    • Posted

      Hi Rexington,

      Thank you for your reply. I am on amitriptyline now and although was on 20 mg found weight gain too much and have since dropped dosage to 10 mg. You gave me some other options so thanks. You mentioned that toprimate makes ur blood more acidic, is this possibly the cause of gastric refux, which I am told is another side effect?

      xo

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