Introduction - 1st Post - Small Fiber Peripheral Neuropathy
 

Hello folks… I’m a 67 year old guy living in the great northwest (Portland, OR area). I’ve suffered from pretty sore feet for 7 years. After extensive testing (including skin punch biopsy), I was recently diagnosed with Idiopathic Small Fiber Peripheral Neuropathy. I was basically told the disease was incurable and that pain management (drugs) was the only help they could provide. I was given a prescription for Gabapentin (Neurontin), with 1200mg x 3 per day being the upper limit. I was instructed I could ramp-up the dosage to find the level I needed.

Besides gaining 25lbs in two months and feeling sedated, I also didn’t feel any perceptible pain relief, and decided to quit. I was up to 2700mg per day when I quit, and was actually told by my neurologist that I could “cold turkey” Gabapentin if I choose. What followed was comparable to coming off a bad acid trip in the 60’s (not that I ever did that)… it felt like every nerve fiber in my body was “firing off” at the same time. Thinking I was going to die, I relented and took my normal dosage and began feeling better.

That’s when I began searching the internet for info regarding Gabapentin and SFPN. Finding and then spending a good bit of time on this forum, it seemed clear I didn't need to look elsewhere. Amazing wealth of information and an even more amazing group of people.

Anyway, I began to slowly wean myself off Gabapentin and am currently down to 300mg x 3 per day. However, at each new lower dosage, I felt nerve activity in my body I had never felt before taking Gabapentin. It’s like this drug can actually bring on neuropathy symptoms. I don't think I want to go lower as symptoms seem to become more acute even after a 100mg lower dose.

I've probably gone on long enough for a first post, so let me ask a question:
Can anyone recommend a neurologist, preferably a specialist in SFPN or PN, in the Portland, OR area? Seattle isn't out of the question…

BTW, my name is actually Jack… “Joe Duffer” is the name I've used on the many golf forums I hang out on. This name reflects my skill level. :wink:

Cheers,

ive read that going cold turkey off of gabapentin can cause seizures. gabapentin is an anti seizure medication. you may have come close.

gabapention
 

we are all different, I had no problem dropping down from 1800 mg after no relief. I have burning sensations sporidicly all over arms and legs, am trying Lyrica now, suggested by a Mayo neuro. Anybody had any success with Benfotimine?

Hi Joe,

When were you first diagnosed?

When did you first experience neuropathy symptoms?

Hey Jack,
I have SFPN. I can not imagine my life at this time without this forum or Lyrica. I hope that you get feedback about Benfotimine from someone here. Some people have complained of weight gain with Lyrica. So far my weight has stayed under control. My neuro stresses the importance of diet, with an emphasis on leafy greens and fish oil. I juice bags of kale. I also take more vitD and B12 (empty stomach for absorption).
The PN forum is priceless for keeping up with it all. I wish you good luck and I hope we get to know jack..

Welcome Joe/Jack & Joe. :wink:

Golf eh? A friend of mine wrote a book about it and it's now turned into a movie - so he's well chuffed. :cool:

Cold turkey is not a given, but the risk is real, so weaning off is always a good idea.

Benfotiamine is a more potent form of thiamine: vitamin B1. It was once the treatment of choice for some forms of PN, and there are a lot of members here who use it to great success. If is available OTC. I use it too, 300mg/day FWIW.

Hi Mel,

It sounds like your neuro is providing good advice. The info from this forum seems to support your doctors views. I too have adopted this diet, which has helped in loosing most of the weight I had gained.

Thanks for the well wishes,

Thanks for the note - I'm currently taking 150mg Benfotiamine 2x per day on an empty stomach. It's been about a month...

Welcome Jack. I have good integrative MD's so I get great advice about supplements and diet. I have Autonomic Neuropathy/Dysautonomia. Benfotiamine, Alpha Lipoic Acid, B12, l carnitine and others along with a very good diet with no bad carbs or gluten has been helpful.

Thanks Sally,

I have been taking the same supplements as you, along with other vit/sup recommended here by mrsD and others.

I'm still looking for a doctor/someone locally (Portland, OR area) who can personally give me some positive direction and hope. :)