Tegretol for Length-Dependent Small Fiber Neuropathy

Posted by julbpat @julbpat, Sep 27, 2022

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Sep 27, 2022

Thank you for starting this discussion @julbpat and sharing how doing your own research and being a better advocate for your healthcare has made a difference. It's good to hear your doctors were willing to give it a try!
Was this one of the research articles you found?

-- Carbamazepine for acute and chronic pain in adults:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160789/

julbpat | @julbpat | Sep 27, 2022

In reply to @johnbishop "Thank you for starting this discussion @julbpat and sharing how doing your own research and being..." + (show)

Hi John. When I was preparing for genetic testing, I did a lot of reading about voltage-gated sodium channels, and genetic mutations. That's where I saw the reference to Tegretol (carbamazepine) - buried in an article about treatments for certain genetic variants. Turns out I didn't have one of those variants, but since the Tegretol therapy has been kind of amazing, maybe it means something!

26sabrina | @26sabrina | Jan 12, 2023

I am also a nurse. I am going to research Tegretol and maybe suggest it to my neurologist. Thanks for the information.

julbpat | @julbpat | Jan 13, 2023

In reply to @26sabrina "I am also a nurse. I am going to research Tegretol and maybe suggest it to..." + (show)

I am on 400 mg twice a day now. Still having slow weight gain, but the burning pain is gone. With good physical therapy, I’m starting to resume more weight-bearing activities, like walking in my neighborhood. It is still painful while and after I walk, but I don’t have hours of red, burning toes and feet that keep me awake.
I’m also scheduled to go to a Dysautonomia Clinic for a full assessment. I’ll keep you guys posted on that. I’m skeptical but agreed to go. I guess Dysautonomia could be a new discussion thread!

krayanmd | @krayanmd | Dec 17 7:39am

Your story has been inspiring to me, just started tegretol last night for my diabetic neuropathy.
May I ask how long did it take while taking tegretol to be pain free?
Thank you

jandy88us | @jandy88us | Dec 18 9:20am

Hi there,
Are you experiencing canker sores in your mouth as well,?
We have very similar symptoms!
I will ask my neurologist about the Tegretol!
Praying for you!!🙏🏼

julbpat | @julbpat | Dec 19 7:13am

In reply to @krayanmd "Your story has been inspiring to me, just started tegretol last night for my diabetic neuropathy...." + (show)

@krayanmd I’m glad you are trying Tegretol. As to p: How fast did it work? I would say I noticed improvement within the first week.
However this was written two years ago. Things change. I ended up on too much Tegretol (for me) and developed episodes of dizziness and confusion. It took over a year to realize it was from 1,000 mg Tegretol a day. I am now on 600 mg/day. That helps with my pain, but doesn’t take it away. However it’s been so long since I was unmedicated for this that I can barely remember how bad those days were.
But … the new miracle drug is Journavx. It is a new non- opioid pain medicine that works directly on peripheral nerves. I have been trying it for months now. If I could take it more often, or a higher dose than 50 mg, it would be amazing. That is the drug of our future for peripheral neuropathy sufferers. Read about it then see if your doctor will give you that as well. But be prepared to get your credit card out - it has cost me several thousand dollars so far.