For the past week I've spent much of the time crying like a baby because of the severe nerve pain. Finally spoke with my neuro and being I have such bad reactions to so many meds, it was a challenge. Couldn't go with the narcotics being I take LDN, so he's trying the generic of Tegretol. It's mainly used for seizures, bi-polar, etc., but also for nerve pain. I've taken two 1/2 tablets so far and am feeling the most "pain free" in years. Seems to help with the spasms in my legs and back too.

Hope this doesn't "jinx" the results by sayng they're good so far!! There can be some really bad side effects. Has anyone had any experience with this drug?

My neuro did agree that I have Central Pain Syndrome -- damage in the brain, brain stem and spinal cord from the years of MS.....18 diagnosed and 14 years before that when Optic Neuritis struck twice.

Seem more tired, but worth it to finally have some of that "electric shock" pain gone for awhile. Isn't this disease a "hoot"? NOT!!!!

I take a sustained release version of it (was on regular Tegretol for many, many years). I can tell you that the tiredness and brain fuzzies (if you have or get that symptom) usually goes away within the first few weeks.

It can make you more prone to the sun so sunblock is a must. My MD and pharmacist also caution me against taking grapefruit or its juice as it will mess with the blood level concentrations. Make sure you let any doctor know you are on it, as some drugs can interact.

You have to get LFT (liver function tests, a blood test) done now and again. You can also take a bit to get the right dose as your body adjust to it.

Glad to hear it is helping you a bit and hope it only gets better!

My mom takes it in concert with Lyrica to stop the TN pain she gets

i am on it and lyrica and klonopin it did seem to help with the spascisty(sp?) and nerve pains

and thats very true about grapefuit it a no no on tegretol

I take Trileptal (anti-siezure) and it does help my hand tinglies like nothing else has.

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Jane, Greta, Frank and Beth -- thank you for your comments and experience with Tegretol. It sounds like there were no bad side effects!! YES!!! I need to call the Coumadin Clinic being I take Warfarin since the atrial fibrillation last summer. Was going to call today, but didn't get up in time. I seem to sleep pretty good in my recliner and am not so sore in the morning (my morning) as I am sleeping in the bed.

I haven't heard about the extra blood tests yet. Have to call the neuro back in a week or so to let him know how it's working, so maybe I'll hear about it then. The "bloodsuckers" come to check my coumadin level anyway so they can probably just take an extra vial.

You guys are the greatest! I can always count on some answers when I come to this site. Thanks again........Hugs..........

Hey Judy, although undx...I am right now taking neurontin for tingling nerve pain..and helping...but today at apt..she mentioned tegretol..sp? anyhow...just told me if neurontin doesnt do it....we could try that also...instead....good luck with less pain..and hugsss,sarah

Thank you Sarah for your comments. Neuontin and I didn't go together very well, but alot of people seem to do fine with it. It's good to hear another doc thinks tegretol is good for nerve pain!

Good luck to you in your journey with this lousy disease. I pray it stays in remission for a long time as mine did. At least I was able to enjoy my kids when they were growing up. They were adults, except my youngest, she was in high school, when the "real" MS reared its ugly head.