Tegretol for Length-Dependent Small Fiber Neuropathy

Over the past 7 years I have tried Cymbalta and Savella ( no go), Gabapentin, and finally Lyrica for what was initially diagnosed as fibromyalgia, and now confirmed to be SFN. In my reading, I saw a reference to Tegretol as a possible treatment. Interestingly, I had been on Tegretol for 25+ years for seizures. In 2014, I weaned off Tegretol. Within six months I developed mysterious foot pain, swelling and weakness of various joints (symmetrical), fatigue, etc etc.

I was diagnosed and treated for fibromyalgia, even though I always knew there was something else wrong. Today I have full-blown neuropathy, with all the accompanying symptom. Also Dysautonomia, and various symptoms, such as dizziness, palpitations, burning pain, sore tongue, constipation, itching etc etc.

A few months ago I asked about trying Tegretol, as the Lyrica (75 mg four times a day) had erased my memory and made me very foggy. I am now on Tegretol 400mg twice a day. I swear, all of my neuropathy symptoms disappeared. What remains is overall pain and progressive weakness of my extremities, now creeping up my arms. This is handled with opioids, Baclofen, physical therapy. But this pain too is disappearing as we have increased my Tegretol!

Tegretol is not without side effects. I have gained over 10 pounds in two months. I had some mild depression and weird crying episodes as we increased the doses, but I stuck with it, and those went away.

So this might be helpful to anyone who is not getting relief with Lyrica or Gabapentin. I don’t expect this to do the trick indefinitely as my SFN progresses. But the theory is that Tegretol was masking my neuropathy symptoms for all those years.

I am a nurse, and discovered this myself doing some deep research. My doctors were more than willing to try it, and hopefully this will help other patients.