Carbamezatine for small fiber neuropathy

Hi @cwallen9, Another member, @susanacary, shared her experience with Carbamezatine in another neuropathy discussion here but I don't think she is still following Connect - https://connect.mayoclinic.org/comment/921229/. Here is a search of Connect listing the different comments from members on the drug - https://connect.mayoclinic.org/search/comments/?search=Carbamezatine.

Here's some information from Mayo clinic on the drug and side effects - https://www.mayoclinic.org/drugs-supplements/carbamazepine-intravenous-route/description/drg-20310900.

@cwallen9
I’m taking Carbatrol ER (Carbamazepine extended release brand name) 1,000 mg but I take it for seizures. Although I do have neuropathy but only numbness. I have been taking it for about 15 years. Many seizure medicines are notorious for causing drowsiness which may decrease as you continue to take it. I haven't had any side effects.
Take care,
Jake

Thanks for the reply. It is good to know that you have been taking it for a long time without any side effects.

I wrote a long epistle about my positive experience with Tegretol, you can search under my name. However I didn’t send the recent update.
My (new, inexperienced) neurologist had me on high doses, 1000 mg/day because that is what my pain required. Over time, two things happened. I started having pain even on the high dose, and at the same time I was basically disabled by a bunch of neurological issues. Mainly every morning, two hours after taking my meds, I had seizure-like activity, then horrible dizziness, followed by a ruined day with bouts of dizzy spells, grogginess, etc. I had all sorts of tests done for Dysautonomia, seizures, brain issues …. in retrospect, I can’t believe it took so long for someone to figure out it was the Tegretol.
I am now on 300 mg twice a day. All the neurological stuff went away. However, my pain is controlled just a bit, not great. My toes burn constantly. I am also on Vimpat 50 mg twice a day. I’m supposed to be gradually increasing it with the goal of eliminating the Tegretol completely, but I can’t handle the grogginess with higher doses of Vimpat.
So here I am. Enjoying being somewhat “normal “ regarding my ability to function, but poor pain control. But I am a big fan of Tegretol. It works when nothing else does. I just can’t tolerate the dose I need.

Thanks for sharing your experience. The only bad side effect so far is a bad headache. Hopefully, that will get better with time. Just so everyone knows, the correct spelling is "Carbamazepine". Sorry for the confusion.