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.

@julbpat
When you say “seizure-like activity” are you referring to psychologically induced seizures?
Take care,
Jake

@cwallen9
When taking seizure medication it's best on every refill to use the same manufacturer. Doing so may also decrease headaches.
Take care,
Jake

I had complex partial seizures for about 25 years. They were controlled by Tegretol, until they just disappeared. This reaction felt like a complex partial seizures in some ways. I could feel it coming, and it “gripped” my brain. But it was also different from the “real” seizures I had.
My family that saw these spells said it looked like a seizure- my speech, gaze. It always happened two hours after my morning dose. Like clockwork. I would have to lie down and fall completely asleep to recover. Awful.

I was on cabamazepine, 200 mg daily. For trigeminal neuralgia. The middle nerve, maxillary,had had been worn by an adjacent pulsing artery. Dr said it makes liver hepatatic long term. I would need blood tested after 6 months. After a few weeks I took turmeric with black pepper included at same time. Stopped cabamazepine. Pain in teeth stopped. By accident, all symptoms stopped after lifting a 15 kg bar vertically and holding for 12 secs. Repeated a few times. Neck mussels extend into jaw mussel. That exercise has moved artery and nerve apart. The initial damage caused by playing sax many hours daily aged 82. Good luck. JAMES .NZ