Supplements

@julbpat
That's a good reason to take it. Hope the seizures are controlled. I thought you took it for Neuropathy.l
Jake

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.

My neurologist refers patients to another office that is set up to do them. This was a pain doctor. He did three on each leg - ankle, knee and upper thigh.

I don’t know, but the compounding pharmacy would tell me if I asked. You can call a compounding pharmacy and ask what “ recipes” they have for pain cream. Ask specifically about the Lido. I don’t know if that will actually make sense, since it’s blended with other medications in a base. I’ve had two different recipes - one had so many ingredients that it seemed sticky.
I shared the recipe with my neurologist, he was happy to have that, and the phone number for the pharmacy.
Doctors really want to help!

I've mentioned this elsewhere but I take these daily
RN-ALA or just R-ALA 600mg
B-1 Benfotiamine 300-600mg
B-6 Pyridoxal-5-Phosphate (NO HCL) 80-100mg
B-12 Methylcobalamin 1000-3000 mg
B-9 5-methyltetrahydrofolate 400mcg
L-Citrulline (nitric Oxide) 1000mg
Acetyl-L-Carntine 1000-3000mg
I take this handful split for AM and PM... it's like 10-12 pills each time(I haven't counted 🙂
Remember...with the pills
NO FILLERS like:
Magnesium Stearate
Gelatin
Maltodextrin
Dyes or Coloring
Titanium Dioxide
These fillers only make things worse...

I find that sugar and mainly chocolate trigger the pain...

I just went through this several times.... Just the other day I ate several Herisey Halloween-sized (mini) chocolate bars..and a couple of Reese Peanut butter cups... and the nerve pain that late-night early the next day was so intense..Yes, the pain doesn't start that hour it starts hours later..."Sugar Is A Blow Torch to Nerve Endings"
That I decided that I might finally break down and take meds... Now remember the above supplements are meant to heal the nerves which is a long process...(RECAP-My Nerve pain started last Dec-Jan, went to the Doc in Feb he offered Gabapin but I didn't like it and it didn't help with the intense pain I was having so he put me on pregabalin, I kept upping the dosage until it kind of worked but I was unsteady on my feet and with my job walking up to 10,000(5miles) steps a day I couldn't do it so I quit the meds and went on a search to find a solution which lead me to the above supplements RECAP done)
So back to sugar but mainly chocolate for me.... I ate the sweets... and I had pain like in the beginning ..brought tears (Yes I'm a Man) and I had to lay down...but the pain wouldn't go away totally so decided to pull out Pregabalin 75mg I still had..took two and within an hour the pain was all gone.. 12 hours later I could feel it starting up... So I've been taking 2- Pregabalin 75mg twice a day/every 12 hours and I've been pain-free..
So my thought is this....While my nerves are healing with the above supplements, I'll take Pregabalin also so that I can be more productive at home and work.
I know the above supplements work because my feet are better and I'm able to function well with short breaks but with the Pregabalin I'm hoping for even more productive days with fewer breaks but we will see...

Thanks for that information. Question- Did or do you have any burning?