Tegretol (Carbamazepine)

Information about how to manage or reduce the severity of BFS symptoms

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Tegretol (Carbamazepine)

Postby crotwich on March 17th, 2015, 8:51 pm

Has anyone had a long term relief from fasciculations with Tegretol? If so, on what dosage? What about the side effects? Thanks in advance.
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Re: Tegretol (Carbamazepine)

Postby TwitchyDoc on April 8th, 2015, 12:34 am

I have, usually 400-600mg daily was enough. No side effects for me.
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Re: Tegretol (Carbamazepine)

Postby crotwich on April 8th, 2015, 7:05 am

Thanks Docen, that's good to hear. Anybody else? :)
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Re: Tegretol (Carbamazepine)

Postby Ghayes420 on April 8th, 2015, 11:30 am

I have not gone this route as of yet, but many report relief. Of all the ALS specialists I have seen, they all agree that there is not any one drug that will stop the fasciculations, but there are several that can reduce symptoms. Here are the specific ones that were recommended from various specialists:
-Tegretol
-Trileptal (some say better than Tegretol)
-Nortryptiline
-low dose Librium (this was the latest offering, "new studies show effective...")


PS- Docen, I sent you a PM, did you disable?
A very proud fasciculator since 8/14/2011. :)
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Re: Tegretol (Carbamazepine)

Postby TwitchyDoc on April 11th, 2015, 1:14 am

Greg, last PM from you came 5th March. I am off any medications and things are not really good - very frequent twitching in both arms, hands and trunk. In addition, I feel as if I aspirate but modified barium swallow was within normal limits (did show mild delay in laryngeal closure) - I cannot medically explain why I feel hoarse and get this sore throat feelin after eatin or drinking and not aspirate.
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Re: Tegretol (Carbamazepine)

Postby garym on April 11th, 2015, 8:00 am

TwitchyDoc wrote: I cannot medically explain why I feel hoarse and get this sore throat feelin after eatin or drinking and not aspirate.


Try to shift your focus off of your body and see if that helps....hyper vigilance and focus on the body can lead to strange issues, and anxiety. you know this, I'm sure, but sometimes it helps to hear it from someone that's already been through it. Believe me, I've been there.

By the way, getting back to the op, I never tried tegretol, trileptal did not improve my sxs, neurontin helped me feel better but didn't quite the fascics. I didn't experience any major side effects from either. Good luck.

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Re: Tegretol (Carbamazepine)

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