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Neuropathy pills: How to avoid scams?

Neuropathy | Last Active: 1 day ago | Replies (732)

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@bigjohnscho

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.

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Replies to "I am new to this forum although I have been suffering with peripheral neuropathy for 2..."

I have had Neuropathy for 4 + years. Knee Surgeon made diagnosis when I asked why feet tingled. Internist said it was a nuisance- and finally gave prescription for 100 mg and sent me to Neurologist. He says there many people will take your money. After insisting I was aggressively searching for results he told me me: order EB-N3 -which is an enhanced B6 B12 (EBM Medical, LLC Chesterfield, MO 63005 1-636-614-3152 /requires Doctor's Prescription) and possibly Scrambler Pain Therapy aka Calamare. New England Medical Journal indicates it may be beneficial.) Found provider in Chandler AZ and went for initial evaluation for $59 or $100). Evaluated and hooked me up to the Scrambler for 1/2 hour and light therapy. Immediately reduced pain for few days/ Prescribed treatment: 5 1 hr sessions for 2 weeks may be effective for months or longer. $200-250 per session. Couldn't pursue as headed to MT for summer. Expected to get MRI for Back Pain in MT, but can't get in to an MD until 8/9/24. Pain drove me to a Chiropractor who also specializes in Neuropathy. His treatment: Rebuilder (similar to Tens), RED LIGHT -LZR UltraBright LZRUltraBright.com, foot vibrator, Supplements: Fenix, A-KLM Cream, Zan-Mag, N-Acetyl-L-Cysteine, Alpha Lipoic Acid +Acetyl L-Carnitine, Omega +D, ZAN-MAG Magnesium, and two office visits per week. After 4 days results unknown. Barely feel electrical stimulation. This is where I my be throwing money away/ but back pain weekend my resolve. Summary: Scrambler replaces Gabapentin and blocks nerve pain to brain; not a cure) MT Chiropractors program presented to rebuild blood vessels and nerves - partially curing neuropathy. P.S. I tried to go to Phoenix Mayo but they denied me because my insurance is UHC Medicare Advantage (PPO)

I find that. even w/some supplements there can be hidden allergies that are not apparent at the beginning of using them but after time this can happen. After taking alpha lipoic acid for a year or more my lips started swelling. Scary

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.

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.)

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!!

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

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.

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.

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.

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.