1. < Neuropathy

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.

areyoureal | @areyoureal | Jun 25 10:44am
In reply to @ramona51 "I have not been officially diagnosed with peripheral neuropathy, however, I have persistent tingling in my..." + (show)
@ramona51

I have not been officially diagnosed with peripheral neuropathy, however, I have persistent tingling in my toes. As a result of my acupuncture treatments for postherpetic neuralgia from shingles, I have experienced far less tingling in my feet. Perhaps acupuncture is something you might like to pursue for your neuropathy. I wish you well.

Jump to this post

Thanks when I am back to Phoenix I may pursue acupuncture after scrambler Therapy (which has some scientific basis)

I saw add for an Arizona Chiropractor for accupuncture but she did not seem to have any references

REPLY
suzva | @suzva | Jun 26 7:58am
In reply to @bigjohnscho "Is Pirenzepine approved in the USA. Has anyone tried it and what were the results. I’ve..." + (show)
@bigjohnscho

Is Pirenzepine approved in the USA. Has anyone tried it and what were the results. I’ve read quite a lot about it and it seems to be the first medication that offers a cure.

Jump to this post

From what I've read, pirenzepine is still in the final study stages. The drug itself had been around for gastric issues for a long time, but the topical form for neuropathy isn't approved yet.
I hope we see something soon.

REPLY
bettyg81pain | @bettyg81pain | Jun 26 1:22pm
In reply to @skipneuroathy "I'll start my message with : "What works for me, may not work for others and..." + (show)
@skipneuroathy

I'll start my message with :
"What works for me, may not work for others and what works for them , may not work for me.".
I have had chemo induced neuropathy since 2013; for 11 years. I have not tried nor will I try any of these so called pain relievers or pain curers using some kind of machine sold by the electronic-snake-oil salespersons.
I have never tried any homeopathic meds. My only meds are doctor prescribed.
I have done much research, most of it anecdotal, and have come to agree with long-term sufferers as well as many medical folks, that, THERE IS NO MURE FOR NEUROPATHY!". It is up to you and your doc to try to establish a routine that offers you the best sleep, least pain and balance relief. I have found a
Tylenol-Tramadol-time regium that helps me for most of the time. I'll end with a list of my failed attempts for relief; gabapentin - Google "Side effects of Gabapentin on line (I had 3 of them, the worst double vision)
Tylenol by itself - the maximum you should take is 4 grams (4000mg) per 24-hours )
Vicodin - another opiate that might cause you to use too much of it
DO NOT TAKE ANY OPIATE, VIDPODINE OR TRAMADOL,
WITH AMBIEN OR ANY OTHER SLEEP-MED.).
We are smart animals, so do not fight a dead cause, rather cope wity it and keep smiling!

(talk with your doc and/or pharmacist about this mixture.)

Jump to this post

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

REPLY
1 reply
rblogan | @rblogan | Jun 28 12:52am
In reply to @skipneuroathy "After getting to the point when I was taking 3200 mg of gabapentin daily, I told..." + (show)
@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!!

Jump to this post

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

REPLY
Jill Christine | @jillchristline | Jun 28 9:40pm

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

REPLY
bobweller | @bobweller | Jun 29 8:30am

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.

REPLY
srush | @srush | Jun 29 9:13am

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.

REPLY
skip | @skipneuroathy | Jun 29 9:49am
In reply to @bettyg81pain "What is your Tylenol-Tramadol regiment? Am taking 50 pregabalin in morning and 125 at night; but,..." + (show)
@bettyg81pain

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

Jump to this post

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.

REPLY
holdrege | @holdrege | Jun 29 12:12pm
In reply to @antonintampfl2009 "This supplement has ingredients that supposedly help regenerate damaged nerves and include folic acid, alpha lipoic..." + (show)
@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?

Jump to this post

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.

REPLY
1 reply
duaneh23 | @duaneh23 | Jun 29 7:19pm
In reply to @northoftheborder "My neuropathy is weird because I suffered nerve damage both from from the cancer lesion on..." + (show)
@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).

Jump to this post

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.

REPLY
View MoreView Less
Please sign in or register to post a reply.