Different OTC for neuropathy

Posted by peggyn @peggyn, Sun, Jul 14 10:06am

Have any of you tried or still use any of the nerve pills out there. I'm talking about,, nerve renu,,,, nerve align ,, protocol, etc There are so many different ones out there.It's overwhelming..I take a lot of supplements that are listed in these products, but not the product itself. Please tell if you use any of these and have they helped you like the adds say they will ???

Hi @peggyn, I believe those OTC supplements contain polyunsaturated fatty acids. You may want to try flaxseed which contains alpha linolenic acid. Omega 3 fatty acids help with brain function. I currently started taking flaxseed oil along with the fish oil which I have been taking for 2 years. I have read that the pain from neuropathy occurs from the nerve irritation and the tingling sensation is from the nerve regrowth. How long for the repair seems to depend on the degree of injury. Has anyone tried exercise for help? Supposedly when exercising, the endorphins released are a natural pain killer.

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Hi, @peggyn@johnbishop @artscaping @wilcy @cbnewpain @cocodab also may have some input related to OTC supplements for neuropathy — whether they have read about them or taken them, and if so, how it went.

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@peggyn — I think I shared with you before that I've been taking the protocol from the closed Facebook group Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/SPNPD/) since 2016. I'm still taking it although I only have numbness with my neuropathy. I believe it has slowed the progression of my small fiber PN so I'm happy with my new normal. They also have a website – http://solutions2pnpd.com/. The group is a 501c3 organization and has grown considerable in size since I first joined. You can read my neuropathy story posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

As far as the Nerve Renew and other varieties I think they are overpriced vitamins and supplements that may or may not work for everyone with PN but that's just my opinion based on my own research. Whatever you decide, I urge you to do your own research. Here are some links that will help you determine what's legit and what may be a scam.

Labdoor – Supplement Rankings (when comparing vitamins for best quality)
https://labdoor.com/rankings

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

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Hi John,

I think I tried to follow your links once before in order to follow the treatment protocol but could not follow it. Is there anyway you could post the protocol?
Barry

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@jager5210

Hi John,

I think I tried to follow your links once before in order to follow the treatment protocol but could not follow it. Is there anyway you could post the protocol?
Barry

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Hi Barry @jager5210 — The website has links for everything I take here – http://solutions2pnpd.com/products/ and they also have instructions on the website here — http://solutions2pnpd.com/instructions/. I would suggest joining the closed Facebook group (http://www.facebook.com/groups/spnpd) if you want to try it and read all of the new member information to get up to speed on how it helps you and what you can expect. It may or may not work for everyone but it is an alternative way to treat neuropathy symptoms vs using drugs that have a lot of side effects. I would urge everyone to do their own research.
John

Liked by cocodab

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Thanks John,

I'll let you know if I have difficulty following the links. Sounds like you've had tremendous success with the protocol.

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@avmcbellar

Hi @peggyn, I believe those OTC supplements contain polyunsaturated fatty acids. You may want to try flaxseed which contains alpha linolenic acid. Omega 3 fatty acids help with brain function. I currently started taking flaxseed oil along with the fish oil which I have been taking for 2 years. I have read that the pain from neuropathy occurs from the nerve irritation and the tingling sensation is from the nerve regrowth. How long for the repair seems to depend on the degree of injury. Has anyone tried exercise for help? Supposedly when exercising, the endorphins released are a natural pain killer.

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@avmcbellar Tingling can also be nerve irritation from physical compression or caused by stretching a nerve. I've had that, and the tingling stops when the compression is released by physical therapy and/or surgery. I've had tingling in my arms and hands from thoracic outlet syndrome, and tingling along with sharp nerve pain in my body from a spine problem caused by compression of the spinal cord, and that went away after surgery. The sharp nerve pains like stabbing or electric shocks, are the nerves that may be damaged and that in turn causes muscle atrophy when the nerves are not delivering the electrical impulses that the muscles need to contract and function. A problem like that needs to be evaluated and treated as soon as possible. Strengthening exercise can help by helping the body build better mechanics and posture which reduces pain when it stops compressing and stretching nerves because the muscles and bones are aligned where they are supposed to be. It took me 2 years to find a surgeon willing to help me, and I finally came to Mayo for spine surgery, because I got worse for 2 years because the local surgeons wouldn't help me. I did have muscle atrophy in my arms and shoulders from my spine problem, and since my surgery a couple years ago, I have been working to rebuild the muscle that I lost. Some has come back, but not all, and maybe this takes several years for peripheral nerves to regrow, or maybe I'll just reach a level of recovery and plateau. I am not as strong as I used to be, but I keep doing things that need strength, like kayaking and horse back riding which includes getting the horse ready which is physical work. It all helps core strength too which helps everything. Omega 3s help reduce inflammation which is great for health and helps prevent disease that is caused by inflammation, and exercise, endorphins and stress reduction go a long way too toward good health. Good for you!

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I’m following the protocol works. Was skeptical so did much looking into each supplement and I definitely feel better on the protocol. John I added turmeric and actually after mentioning my weak nails previously I added zinc. What goes into your body with this condition really seems to matter and really make a difference on how you feel.

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@jager5210

Thanks John,

I'll let you know if I have difficulty following the links. Sounds like you've had tremendous success with the protocol.

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I still have the numbness but it hasn't gotten any worse the past 2+ years which is what my neurologist told me was going to happen so I consider it a win for me. For others it has also eliminated the pain which I didn't have with my neuropathy.

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@cocodab

I’m following the protocol works. Was skeptical so did much looking into each supplement and I definitely feel better on the protocol. John I added turmeric and actually after mentioning my weak nails previously I added zinc. What goes into your body with this condition really seems to matter and really make a difference on how you feel.

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I also added turmeric. I had tried to make my own paste early on and mix it with smoothies but have switched to using a liquid turmeric.

Liked by cocodab

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@jenniferhunter

@avmcbellar Tingling can also be nerve irritation from physical compression or caused by stretching a nerve. I've had that, and the tingling stops when the compression is released by physical therapy and/or surgery. I've had tingling in my arms and hands from thoracic outlet syndrome, and tingling along with sharp nerve pain in my body from a spine problem caused by compression of the spinal cord, and that went away after surgery. The sharp nerve pains like stabbing or electric shocks, are the nerves that may be damaged and that in turn causes muscle atrophy when the nerves are not delivering the electrical impulses that the muscles need to contract and function. A problem like that needs to be evaluated and treated as soon as possible. Strengthening exercise can help by helping the body build better mechanics and posture which reduces pain when it stops compressing and stretching nerves because the muscles and bones are aligned where they are supposed to be. It took me 2 years to find a surgeon willing to help me, and I finally came to Mayo for spine surgery, because I got worse for 2 years because the local surgeons wouldn't help me. I did have muscle atrophy in my arms and shoulders from my spine problem, and since my surgery a couple years ago, I have been working to rebuild the muscle that I lost. Some has come back, but not all, and maybe this takes several years for peripheral nerves to regrow, or maybe I'll just reach a level of recovery and plateau. I am not as strong as I used to be, but I keep doing things that need strength, like kayaking and horse back riding which includes getting the horse ready which is physical work. It all helps core strength too which helps everything. Omega 3s help reduce inflammation which is great for health and helps prevent disease that is caused by inflammation, and exercise, endorphins and stress reduction go a long way too toward good health. Good for you!

Jump to this post

Hi @jenniferhunter, thank you for the information. Sounds like you went through a lot before finding the right care. Glad you did research to help yourself. It has paid off. Keep trying to regain your muscle loss. I also try to keep active although it is difficult to do with balance issues. It feels like motion sickness with which I get the nausea and sometimes vomiting. I do things often with breaks in between. Good luck!

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@avmcbellar

Hi @jenniferhunter, thank you for the information. Sounds like you went through a lot before finding the right care. Glad you did research to help yourself. It has paid off. Keep trying to regain your muscle loss. I also try to keep active although it is difficult to do with balance issues. It feels like motion sickness with which I get the nausea and sometimes vomiting. I do things often with breaks in between. Good luck!

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@avmcbellar Thank you. I did go through a lot and I was caring for my elderly disabled parents at the time I was looking for medical help for myself. I have a biology background and was able to understand the medical literature I was researching. I also went through some vertigo episodes prior to spine surgery that happened when muscle spasms were moving my vertebrae around in my neck. C1 and C2 would often twist or tilt which was enough to set it off. It happened when I looked up at birds migrating overhead because the back of my skull was jammed into the top of my spine that was out of alignment, and when I leveled my head, the dizziness didn't stop. I was seeing a physical therapist who worked on the muscle spasms and gently realigned the vertebrae and that stopped the vertigo. A cause of that can be a physical problem where the mis- alignment of the vertebrae can alter the arterial blood flow to the brain in certain positions. An example of this is bow hunter's syndrome where the rotation of the upper vertebrae interfere with blood flow to the brain. I don't have a diagnosis of that, but if I sleep wrong or lay on my stomach with my head turned to the side, I can cause muscle spasms that start rotating C1 and C2 which causes muscular head aches. I had spine surgery at Mayo which resolved a lot of that and I don't have dizziness anymore. I mention this in case you might have a physical cervical spine issue contributing to dizziness. When I looked at the birds, it literally looked like the world was spinning and it was easier to close my eyes, and a few times I would hold onto the walls while walking if I felt dizzy. It would be difficult to live with that all the time. Perhaps you have consulted with doctors, but if there is a physical cause for your "motion sickness", maybe physical therapy could help. You may want to have MRI imaging of your cervical spine to check it out. I do know that dizziness and vertigo are symptoms in medical literature of a cervical spine problem. Here is an abstract that describes it. https://www.ncbi.nlm.nih.gov/pubmed/17128668

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@jenniferhunter I am glad you can concentrate on less health issues after resolving your dizziness. Vertigo is difficult to deal with especially in enjoying activities of daily life. I walk like a drunk person. Thank you for sharing your medical experience. With PT did you request vestibular therapy? I get headaches as well. I did have surgery to correct my ruptured AVM (Arteriovenous malformation). I feel the tension at the base of my skull where I had the brain surgery. My neck muscles do hurt at times. I do not know if C1 or C2 are involved. I can always ask the surgeon or my PCP. For 3 years now, since my surgery, I have had the dizziness. The rupture occurred at the cerebellum where my balance is affected. The dizziness has been the same although slowly I have learned to walk again. I can now use a cane. For long distances, I use a walker. I am very careful not to fall. I need more practice on unleveled surfaces like the lawn. I plan to utilize PT home care when it gets cooler in Florida to be outside. Thank you for the insight. I will keep that in mind to ask the medical experts more questions. In the past any questions I asked, the answers came with uncertainty.

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@avmcbellar Wow, I didn't know your story. Can I ask what the symptoms were when your AVM ruptured? I also wonder if your surgery could cause scar tissue that may be problematic and cause dizziness by affecting other things. I think they can do some arterial studies and see if anything is kinked. Did your doctor think the post surgery brain could be the source of the dizziness? You can ask about having an evaluation of the circulation to the brain. Does anything change it, like a different head or neck position or by turning your head? There is a lot of literature about insufficiency of circulation to the brain that is positional in spine injury patients. My gut feeling is the tension at the base of your skull may be putting pressure on the area and there would be surgical scar tissue there that would tighten everything up. Do you have another issue that causes compression like Thoracic Outlet Syndrome? I have that, and by turning my head, it does stop my pulse in my neck. That was one of the tests to evaluate it when I came to Mayo before my spine surgery. I didn't have vestibular therapy. My issue seemed to be physical and mechanical and by realigning my spine so the bones were back where they belonged, it temporarily fixed it until another muscle spasm started moving things again. I have a slight bit of movement or slipping between vertebrae when I change my neck position between flexed or arched, and something like that can be part of the equation for dizziness. The muscle spasms pulled it out of alignment and caused the problem. I haven't had any issues since my surgery and my neck is pretty happy unless I do something to aggravate it. I am working on TOS in physical therapy now and doing myofascial work. I wonder if myofascial release could help you, but I think that would need to be cleared by your surgeon first. It can help stretch out tight tissue and get fluids circulating again and relieve pain. The dura that covers the brain and spinal cord is also fascia which could be pulled on by surgical scar tissue in the fascia. Here is our discussion about MFR. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I hope you find something that can bring improvement.

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Hi @jenniferhunter. I didn’t have any symptoms prior to the rupture. At the time, I felt something was wrong as I lowered myself to the floor to vomit. I later passed out. I woke up in ICU at a Tampa hospital after being in a coma. I was told I wasn’t expected to survive. I had no definite answers so I didn’t know what to expect. I had to have additional surgeries to correct the AVM. Luckily the 2 involved going in through the groin, no incision. My last repair in January 2017 left me with the neuropathy on my left side of my body. From my very first surgical repair, I felt my neck in the back being tight at the base of my scull. In time it became less tight as it healed. My neck muscles did hurt and feel tight and still do with less intensity. I had a cerebral angiogram in the fall 2017, recommended by the neirosurgeon. The results proved there was no reoccurrence of an AVM. I did not need to get authorization from my neurologist to take any OTC medications or supplements. Although I was told I no longer had an AVM, I am dealing with the after effects. There has been some progress like with the walking but I still am feeling dizzy no matter where I move my head. I still have the neuropathy, headaches, and double vision. Eliminating the motion sickness would allow me to take part in activities again. I no longer see the neurosurgeon regarding the AVM. I now do have a PCP for general exams. I don’t think anyone wants to deal with my symptoms. Other than the symptoms of a ruptured AVM I am healthy. Prior to this I had annual exams and was not on any medications. My physicians had no alarm for any concerns since I ate healthy and followed an exercise program. After my hospital stay, I was briefly on Keppra until I got it discontinued. My neurologist had agreed with me so I was never on any medication again since then. The neurosurgeon had no answers for me because I was told that not enough people survive to collect any data. I have stopped with the questions and feel that I need to figure things out by trial and error. I appreciate the emails. It has given me an insight to ask my PCP in Tampa questions. I don’t think he knows either but I will try.

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