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Peripheral Nerve Excitability/Severe muscle spasms

Started by MiracleMan81 on 09/15/2020 11:55am

Hey guys, I deal with severe PNH(Peripheral Nerve Excitability) .. Or debilitating muscle convulsions, is the only way to really discribe it.
I got a second chance at walking and life. Unfortunately I'm currently struggling with a couple debilitating issues, and was hoping you could steer me in the right direction once again. A little history of myself. On Sept 15, 2001
I was a passenger in a motor vehicle accident and I had a mild brain injury, and shattered my c6-c7 vertebrae and severely damaged my spinal cord, and was diagnosed an incomplete quadriplegic. I was air lifted by helicopter from Huntsville to Toronto Western Hospital. According to the medical team at the time I had zero chance of every walking if I was left as is. And then a research team approached my parents with regards to a new surgery still in the research phase. because my injury was less then 24h old and because I was young 19 years old that I would b a great candidate to try this newer surgery procedure, but that there was serious risks involved, and still had a less than 5% chance to walk after surgery. Everything went great and I was discharge to a spinal cord injury hospital. That is where I eventually slowly started to regain movement back, first starting in my right leg and after couple months moved into my left leg and so on. I was in a power wheel chair for 7 mths and transfered to a manual chair for 1 and 1 & 1/2 years to a cane for 7 years to nothing, no devices period. Over the course of 20 yrs hard work and determination. 8-9 years of physio and other wellness related activities and here I am. I worked my ass off for almost 10 years and am very grateful for where I am. It will be 20 years now, Unfortunately I am left with a few debilitating issues and could really use your help and advise. So I've done a lot of research over the course of 20 years trying to figure out my body and the complex puzzle it is.. For 20 years now I've been told what I deal with is muscle spasms but there not, and have been on strong muscles relaxants for the past 6 years with absolutely no change or benefit.. And I have always described them as inner muscular spasms because I didnt know what else to call them.. I know the difference, but this effects every muscle fiber from my neck down. It's hard to explain but I will try my best. If my body is 50% curled into itself like if I was sitting but in a laying down position on my side with my legs bent up, my muscles forcefully try and crush me into a ball, my hands and wrist curve in as hard as they can, and if my legs are 50% straighten like if I'm about to stand up from sitting it forcibly extends my body beyond straightness, my ankles and toes extend and point down as hard as they can always trying to bend itself backwards. My hands curl up and in and I fight like hell to combat it until it releases usually 5-15 second intervals and it repeats itself all day everyday. It severely effects my walking, sleeping, sitting ect. I resently came across an article while I was researching my symptoms once again and think I have figured out part of the puzzle, it's called peripheral nerve excitability (PNH) Over the course of 20 years I have found things that minimize this dramatically almost eliminating it all together but they aren't sustainable. It's similar to convulsions from my neck down. There has been 3 things in life that I have noticed make a difference, mostly opiates. Them being oxycontin (pain meds) metadol (pain meds) and alcohol. From what I have learnt these 3 drugs act as a depressant on the nervous system And slows down the neurotransmitters that allow the brain to communicate with the rest of the nerves in the body. I stopped pain meds 6 years ago and don't drink often so I suffer quite often. My question is for you, is whether there are any other meds that might relax the peripheral nerve and these inner muscle spasms that aren't opaites? I worked so hard to get off of them and stay off. Maybe like anti depressants or anti convulsion medication? That might relax the peripheral nerves. I'm willing to join any kinda of study or new drug test that might help myself and others in any way with regards to our bodies. Unfortunately muscle spasm meds like baclofin and Zanaflex or flexiril have absolutely no benefit for my main issue. And the problem that I found with oxycontin over the years was yes it worked great for PNH and pain but eventually my body would get use to that dose and the PNH would return and effect my body and muscle again, so we'd increase the dose and the cycle repeated itself..My 2nd issue is chronic pain and has been for 20 years. Curious if there r any studies or colleages that treat pain without opiates. I got off them 6 years ago and would really like to stay away from them if I can.. Unfortunately every year the pain increases, and so it's getting harder to decline them. I just do more natural stuff for pain management like essential oils and red light therapy etc.. Any advise or help would be greatly appreciative.. What a roller-coaster my life has been.. Lol I could write a book

Jeremy Finch

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Sorry for the long story.. Just wanna know if I'm alone in this fight.. Or what

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Hello, no you are definitely not alone. As to the PNH I have no experience, however chronic pain I do. Had a couple of construction accidents about 20 years ago. It left me in the most unimaginable pain. Twenty years of all the opiates, muscle relaxers and more. In 2020 I because of covid and doctor access , and the fact all those meds only masked the problem. I using the internet taught myself how to read my MRI's , then diagnosed myself with Adhesive Arachnoiditis, my neurologist confirmed after I told him what to look for, also I developed DDD from poor diet and all the meds. So it was up to me to solve my spinal issues on my own. This is what I did, pain is mostly inflammation. So I quit eating all things that cause it ie sugar, processed foods, meds, alcohol. Then I took Bio-k to restore gut flora destroyed by meds so the new diet my body could process all the nutrients. THen I took supplements every day anti-inflammitory anti-oxidant ones ie curcumin+berprine, quersetin, fish oil, bosweila, collagen, D-ribose the last two are for other things but my pain level went from 9out10 to a 1out of 10 as well as intermintent fasting. It took several months but my entire life took a 180 degree turn for the better, my only wish is that someone had told me this twenty years ago. Good Luck hope this helps, please consult your doctor , because I was able to eat these things and they worked for me does not mean they will work for you. I started with one thing at a time to see how I responded. Then added other things one at a time to get to where I am now. Patience is key , it most likely is not one thing of great quanity, but more of several things of smaller quanity is where you will see the greatest benifit. Forgot to mention its been 9 months medication free incl. otc meds.

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