Hi Jake. I started having idiopathic complex-partial seizures in college and took Tegretol for around 25 years. I stopped taking it in 2014, as I was seizure-free. Within 6 months, my journey of pain (started in my toes) began. I never connected the two until about a year ago. In those 6 or so years, I was diagnosed with Fibromyalgia. Took Gabapentin (bad), Lyrica (not as bad).

When I finally got a correct diagnosis of SFN by skin biopsy (2 years ago) I reconstructed these events in my mind. It seems that Tegretol was controlling my neuropathy to some degree for 25 years. Actually I didn’t start having neuropathy symptoms - that was itching - until my 30’s.

I switched back to Tegretol a year ago. My burning pain disappeared pretty much immediately. I take 400 mg am, 600 mg pm.

Tegretol hasn’t stopped my SFN from progressing. I’m in pain pretty much 24/7, and now dizziness is a big problem. I’m weaker, have had to give up all my exercise except swimming, and now that is painful. But the trademark burning is pretty much gone. So it’s working.

I have no side effects from Tegretol.

Didn’t mention earlier I’m also on two antidepressants - Lexapro for depression, Effexor to try to calm those nerve signals. I’ve gained about 20 pounds in a year. I can’t pretend that life is good.