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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Topamax

A MyFibroTeam Member asked a question 💭
North Charleston, SC

I've been on topamax for about 3 weeks now and so far its been ok. I know its an antiseziure medication and was wondering if anyone else is taking topamax and what their experience has been on it?

April 14, 2016
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A MyFibroTeam Member

I have been on it for about 10 years. I started having kidney problems, so started tapering off last year. It worked wonderful for me, but my kidneys needed to heal. I was on 100 mg a day. That is just way too much. If it helps, like it did me, I would keep on it for awhile. I wouldn't advise staying on it 10 years unless you have your kidneys checked every now and again, which I didn't. Hope this helps!

April 14, 2016
A MyFibroTeam Member

I have had weight loss, fatigue and lack of concentration, as well as tingling sensations in my hands and feet. The only good thing I have noticed so far is the weight loss and the fact that I don't constantly ache. But I'm still working my way up to the max dosage

April 15, 2016
A MyFibroTeam Member

You are at 75mg at the moment. Weight loss is not always the case but good for you Raye! My son was treated for Intracranial Idiopathic Hypertension with Topamax and it controlled it after three months, he doesn't take anything anymore. Give it a good try who knows everyone is different. It may help your pain. Keep us posted!

April 14, 2016
A MyFibroTeam Member

The side effect that bothers me the most is the tingling sensation I get in my hands and feet. I do lose my concentration a lot and it drives me crazy. It seems to have gotten worse since I started the medication too. I've seen some articles where they use it for people with chronic migraines. I don't have migraines, I only have physical pain. I'm still working my way up to the max dosage which is 4 pills in the morning and 4 pills at night. Right now I'm at 1 in the morning and 2 at night so I still have a little ways to go. The only good side effect it has is weight loss. I've lost 5 pounds in 3 weeks of being on it.

April 14, 2016
A MyFibroTeam Member

They told me the maximum dosage for me is 200 mg a day. 100 mg in the morning and 100 mg at night

April 16, 2016

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