Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

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

@skipneuroathy

After getting to the point when I was taking 3200 mg of gabapentin daily, I told my doc. about double vision. He had me gradually reduce the daily amount until I was raking no gabapentin at all. That took about a month. As I reduced the dosage, the double vision gradually faded until I have it no more. My brother was also taking it at the same time as I was and he did not have the same side effect' My best wishes to you to get your vision back. Your concluding statement tells me that you are a person who will deal with neuropathy as best as you are able. GOOD LUCK!!

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Although gabapentin is used for treating diabetic neuropathy and non-diabetic neuropathy it's original creation is an anti-seizure medication you take that kind of dosage you're going to hurt yourself p

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I take 2700mg of Gabapentin broken down into 3x per day. So far, after 2 months, I have some relief. Albeit, I feel sorta "high". I take Cat's Claw to see if that helps. Marijuana enhances the pain relief.

Cheers all!
Jill the Pill

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I am not sure what is fake or a scam and what is real with nerve pain. My understanding is if a nerve is actually damaged then it will never return to normal. I take 100mg Pregabalin (generic Lyrica) twice daily. I am not exactly sure it works or if I just got used to certain types of pain. Right now I rub my feet with as high percent of a menthol based rubs. Plus I wear certain brands of shoes with an extra memory foam inserts. Plus I massage my feet when they do extra time on my feet daily. I keep active and I found it helps reduce the pain. I tried multiple treatments with a TENS device and it seemed to help a couple years ago. I am not diabetic but have had 2 liver transplants over the past 24 years. Doctor thinks my neuropathy is from taking Tacrolimus (Prograf genetic), a immune surpressant medication. I have an older sister who had been diagnosed with Parkinson's around 10 years ago. She is now 87, I am 68. I do use THC at nights that helps me sleep since marijuana has been medically legal in my state for the past 4 years and is now legal for adults 21 and older. My sister has had neuropathy and that is how she found out about Parkinson's. She has tried Red Light treatments to help stimulate her blood vessals in her feet. But, she felt this did not help her a lot. Plus she tried acupuncture and she felt it helped some. I read a lot about neuropathy and have not found any one thing that helps 100%. I still have some feeling in my feet but it's been rising up my legs now. I can feel some numbing and tingling.

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I have tried sooo many things including several narcotics, marijuana, rub-on analgesics, NSAIDS, gabapentin, pregabalin, duloxetine, and others. Nothing has worked. Hope you have better results than I have.

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@bettyg81pain

What is your Tylenol-Tramadol regiment? Am taking 50 pregabalin in morning and 125 at night; but, still have to take Tramadol.
Thanks

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After much trial and error (mostly error), I take 1000 mg (1 gram) Tylenol an hour or so before I go to bed which (usually between 11 and 12. I take 50 mg Tramadol about 1/2 hour before bed. That combo usually lasts 2 to 2 1/2 hours before pain returns. and I awaken. I am usually up for abut I hour during which I repeat the Tylenol-Tramadol combo. Often, I find that I might have to take 500 mg Tylenol a couple of hours later. Thus, in general, I get about 4 to 5 hours sleep although broken up. Again, I repeat, I DO NOT take any homeopathic meds, nor do I use any devices sold by the ESO people. ESO means Electronic Shake Oil). Also please be careful to not overtake the Tramadol and Tylenol. Best of Luck.

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@antonintampfl2009

This supplement has ingredients that supposedly help regenerate damaged nerves and include folic acid, alpha lipoic acid, lions mane mushroom, vit B6 &B12, Benfotiamine, etc.? And if so has it done some good?

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My Home Health nurse swears by a product called Cool Cayenne sold on Amazon for very reasonable price. He says that he has seen big improvements in his neuropathy patients and even more serious situations over his career.

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@northoftheborder

My neuropathy is weird because I suffered nerve damage both from from the cancer lesion on my thoracic spine and from the emergency surgery to debulk it.

I was on Lyrica (Pregabalin) for a couple of years — which did make a big difference when we finally got the dose right — but then I decided, in consultation with my medical team, to titrate off it because I already had weight gain as a side-effect of my primary cancer meds, and I didn't want to compound that with Pregabalin and end up dealing with type 2 diabetes as well. It took three tries over more than a year.

Now, my body and brain have learned to ignore or block enough of the nerve pain that I can just live with the rest. When it flares up I take a Tylenol — Ibuprofin is contra-indicated with my main meds — but I try not to do that too often, because it seems to become less effective the more often I take it. Staying active also seems to help (the pain, of course, says "Stop!", but if you can move through that, it seems to diminish a bit).

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My Axonal Neuropathy is so Severe I’m told there is no help. I do believe my US military did this to me. I don’t believe in any of those Scams out there I have been in concise severe pain prior to 2003.
VA has been trying in surgeries implanted a spinal cord stimulator. Now the pain is getting worse and the only way I’m able to get around is in a wheelchair. I hear some people say they have wonderful success from the procedure.

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I think one challenge is that pain is a very personal and subjective thing — my 2/10 might be someone else's 8/10 (or vice-versa).

Some people dealing with nerve pain get great relief from CBDs, for example, but they did nothing for me when I was in hospital, and opiods just gave me weird, intense dreams (to the point I was afraid to close my eyes). Tylenol, Pregabalin, and Voltarin (ointment) were the only things that helped me, along with stretching and flexing as much as I was able.

That's why I doubt anyone's going to The Right Answer in this thread. There are just too many variables, and too much variation from person to person.

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@paulbse

Spinal Cord Implants for Peripheral Neuropathy: Has anyone had any experience (good or bad) with spinal cord stimulators? How well did it work? What percentage of pain relief did you realize? Were you able to come off your pain meds? Did you experience any infection issues? Brand of the device you had implanted? Based on your experience, would you recommend an implant to relieve neuropathic pain?

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I am 8 weeks post op with scs by Abbott for PN. Worst decision ever! My trial was successful so I had the scs implant. Abbott rep has tried at least a dozen programs and none have worked. Pain is worse than the original pain. I am taking twice as much pain meds as before. They include Amitriptyline, gabapentin, CBD Delta8, Tramadol, Vicodin. I don’t take them all every day but the pain is bad even when I turn the scs off. The surgeon is no help. Says he is just the installing technician. I would love some advice.

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Oh my goodness, so sorry to hear. My pain management doctor pulled the tramadol by stating "they don't do that anymore". Then offerred SCS, and some kind of compounded topical creme of Gabepentin, Lidocaine, and ketamine. I was afraid to get the SCS, and the topical is only marginally effective. I also have Gabapentin capsules. and this med doesn't work well. I have to keep it to 600mg only at night with the Gabapentin. I'm very sorry to hear of your experience with the SCS. Every other day, I contemplate getting it but choose not to. Thank you for reporting on it.

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