Any Tegretol advice?

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

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Any Tegretol advice?

Postby tacketr65 on September 15th, 2004, 9:30 am

A web posting that I saw suggested Tegretol (an epilepsy drug, I believe) has helped BFS at times...My rheumo mentioned it along with neurontin.
Anyone have a comment?
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Postby Heater on September 15th, 2004, 2:04 pm

I have been on neurontin for most of the summer at a dose of 1200mg per day (3-400mg doses), which seems to have reduced the twitching somewhat. It seems the amount of cramping, muscle tightening and muscle pain were reduced as well. Other benefits I believe I experienced were more restful sleeps and a mild tranquilizing effect. Overall my energy levels were as good, if not better than before.

I have recently decided to go off of neurontin, mainly because I just don't want to be depending on prescription drugs. There is also no evidence yet of what long term usage effects might be, and at 37 I have a lot of my life ahead of me that I don't want to compromise with potential ill effects unnecessarily. I'm down to 400mg a day, and will go off of it completely after tommorrow.

I think I can live with this thing without medication. Going off the neurontin is posing some challenges so far, which include more difficulty sleeping through the night, an increase in twitching (not sure if it the amount, or just the intensity, but I do notice it a lot more) and a bit more muscle pain.

My neuro recently gave me a prescription for Tegretol, to try if I wished, but after reading about the potential side effects, I am not going to be filling the prescription.
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Postby traveler27 on October 7th, 2004, 4:04 pm

I have been taking Tegretol since last December (200 mg. twice daily). I don't have any side effects from it. It seems to calm the trembly feeling that I have in my body, but doesn't help with my ability to exercise, things like that. I also take 1/2 of a 5 mg. klonopin at night, since I wake up exhausted if I don't. I really don't want to take any pills - but I've tried stopping both of these, and I definitely felt worse. I hope this isn't forever.
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