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Reducing nerve pain without cognitive impairment

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  • #16
    T12 L1 incomplete here. I have disabling pain in my butt and on down to my toes. I say disabling because there is no way i could work, let alone drive very far. Others say there butt burns like mine, but i don't under stand how you can sit on it all day. I have tried to push through the pain and sit longer, but it's impossible. No one can stay sitting on the stove when it's on. For six years if been getting very small bit of return. Sounds good, until one realizes that my nerve pain follows all around every bit of return. Had four very small bit of return in my gluts, so maybe that's why I can't sit for very long.

    I have not found any relief without a foggy head. On lyrical I could not remember my own name, no luck with the rest of it either. After a year on opiates, they started to make my pain worse.

    So I got creative, and make my own meds. Make cannabis oil, which I mix 50/50 with coconut oil which I take 2x a day up the rear end. By far the best way to take the oil, way less head affect, but a very strong body tranquilizer. Take kratam sparingly, so as not to get the opiate negative affect. For a clear head, an energy boost, plus over all feeling better about life, I take micro dose mushrooms about every forth day.
    T12L1 Incomplete Still here This is the place to be 58 years old

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    • #17
      I've got severe hypersensitivity across my chest, possibly this https://en.wikipedia.org/wiki/Allodynia and after all the pre gabalin, gabapentin, amytryptilin etc have started using lidocane patches on the sensitive area. It is painful to apply but I have noticed a reduction in nerve pain and light touching no longer hurts anywhere near as much. If it continues to improve things I'm going to try and get it via IV. A friend is having this done and is getting 3 months pain free between IV's which seems to be a reasonable price to pay for 6 hours in hospital every 3 months.

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      • #18
        Originally posted by Jim View Post
        I'm C5/6 incomplete and have had 'burning butt' since soon after my injury 21 years ago. The burning is always there, when bad it feels like i'm sitting on a hot grill. Elavil (Amitriptyline) has been very effective for me, 20 mg in morning, 20 bedtime.
        I have sacral paresthesia/pain almost constantly. Ranges from low intensity pins and needles to bristle brush up the backside and vice crushing the left nut. All in the spinal cord of course. Lovely feature of my paraplegia.
        T3 complete since Sept 2015.

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        • #19
          Originally posted by mrb View Post
          I've got severe hypersensitivity across my chest, possibly this https://en.wikipedia.org/wiki/Allodynia and after all the pre gabalin, gabapentin, amytryptilin etc have started using lidocane patches on the sensitive area. It is painful to apply but I have noticed a reduction in nerve pain and light touching no longer hurts anywhere near as much. If it continues to improve things I'm going to try and get it via IV. A friend is having this done and is getting 3 months pain free between IV's which seems to be a reasonable price to pay for 6 hours in hospital every 3 months.
          More likely a variety of dysesthesia: https://en.m.wikipedia.org/wiki/Dysesthesia

          For me there's a region on my chest and back that corresponds to the transition from sensation to paralyzed, where I get both dysesthesia and sensation-translation. The dysesthesia is like signals of pain, heat, cutting, tickling, etc. all simultaneously. Very sensitive to certain fabrics. Lidocaine helps some. I have a compounded Rx cream with baclofen and ketamine that helps lots but has a rebound effect. Try capsaicin too. This works pretty well for me by replacing the scrambled sensation with mainly heat.
          T3 complete since Sept 2015.

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          • #20
            Originally posted by Mize View Post
            More likely a variety of dysesthesia: https://en.m.wikipedia.org/wiki/Dysesthesia

            For me there's a region on my chest and back that corresponds to the transition from sensation to paralyzed, where I get both dysesthesia and sensation-translation. The dysesthesia is like signals of pain, heat, cutting, tickling, etc. all simultaneously. Very sensitive to certain fabrics. Lidocaine helps some. I have a compounded Rx cream with baclofen and ketamine that helps lots but has a rebound effect. Try capsaicin too. This works pretty well for me by replacing the scrambled sensation with mainly heat.
            That isn't what I get, Allodynia is almost exactly describing the stimulus and sensation. I do get something similar hands/feet but I guess we are all greedy collecting the side effects of SCI For now the lidocaine is effective, if it continues to help I'll look at IV that might assist with other areas of pain as well.

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            • #21
              Whoa. You can get that from SCI stem cell therapy according to Wikipedia. Bummer.
              T3 complete since Sept 2015.

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              • #22
                Quick update on my progress. I upped my Lyrica to 300 mg, 2x/day. The first two days there was no change in pain levels and I definitely felt loopier. Days 3-6 were great. Substantially lower nerve pain levels and the fogginess cleared up. Unfortunately, today is day 7 and my nerve pain levels are back to "normal" levels. I'm hoping it's just short term and a result of my imbibing a bit more than I should have yesterday evening. If I don't get back to days 3-6 pain levels within another 2-3 days then I'm afraid the higher dose just creates a new baseline for the brain to adjust to and, once again, start hurting. Stupid brain.
                T3 complete since Sept 2015.

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                • #23
                  Thats sucks Mize. I've kinda came to a point were I'm feeling pretty raw most of the time with meds. I thought it was bad enough that I'd ween off it. No luck. I'm taking Lyrica 50mg, 6x/day. I also take the same of Tramadol.
                  I thought of upping my Lyrica but even one more seems to bring the fog. I've would like to take it twice a day. Would 150mg 2x/day pretty much have the same effect?
                  I can feel the meds wearing off at about 3 1/2 hrs., so it's kind like an alarm clock.

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                  • #24
                    Originally posted by lonecoaster View Post
                    Thats sucks Mize. I've kinda came to a point were I'm feeling pretty raw most of the time with meds. I thought it was bad enough that I'd ween off it. No luck. I'm taking Lyrica 50mg, 6x/day. I also take the same of Tramadol.
                    I thought of upping my Lyrica.
                    I'd love to wean off both lyrica and baclofen.
                    Lowered my baclofen once and the morning hip flexor spasms were insane.
                    T3 complete since Sept 2015.

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                    • #25
                      Update: the increased Lyrica has definitely reduced my overall nerve pain level. I've been journaling my morning nerve pain levels (along with prior day's activities) and excursions above a 4 have been infrequent with nothing over 5. That's a worthwhile improvement.
                      T3 complete since Sept 2015.

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                      • #26
                        I've been reading through this and kind of drew some parallels with what I've been seeing with myself. Now with me, all the neuro pain levels and weird translocation of pain (mostly feeling like getting stabbed in the upper back in severe instances) is wholly related to how much I need to take a dump. Same goes for spasticity. Take a dump, all is well, (or at a level that isn't debilitating over time). No need for any drugs.

                        One thing that kind of irks me is how the medical profession insists on SCI people to ram some nasty chemicals up your butt to trigger taking a dump. The yearly doctor visits to renew cath Rx's always ends up with me explaining how just triggering a reflex to take a dump is sufficient for me to do #2 (the usual method...I hate this subject to explain more). No getting corked up doing this, not unplanned evacuations either. Heck, you don't even need a time table, just go whenever things get sketchy. The 'experts' seem rather perplexed. Heck, eating crap actually is good when you get the 'power dump' effect, lol. What I am getting at is my early experiences of doing the "medically recommended" methods of #2. My colon would be generating mucus hours after getting the treatment, maybe even longer if my leaking bunghole didn't continue to notify me of the effect.

                        I cant help but wonder if the neuro pain issues experienced here are related in similar fashion to my issues. Where constant colon irritation caused by whatever chemical treatment is creating the neuro issues? Any tries to experiment in this area done?

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                        • #27
                          Originally posted by Andy View Post
                          I've been reading through this and kind of drew some parallels with what I've been seeing with myself. Now with me, all the neuro pain levels and weird translocation of pain (mostly feeling like getting stabbed in the upper back in severe instances) is wholly related to how much I need to take a dump. Same goes for spasticity. Take a dump, all is well, (or at a level that isn't debilitating over time). No need for any drugs.

                          One thing that kind of irks me is how the medical profession insists on SCI people to ram some nasty chemicals up your butt to trigger taking a dump. The yearly doctor visits to renew cath Rx's always ends up with me explaining how just triggering a reflex to take a dump is sufficient for me to do #2 (the usual method...I hate this subject to explain more). No getting corked up doing this, not unplanned evacuations either. Heck, you don't even need a time table, just go whenever things get sketchy. The 'experts' seem rather perplexed. Heck, eating crap actually is good when you get the 'power dump' effect, lol. What I am getting at is my early experiences of doing the "medically recommended" methods of #2. My colon would be generating mucus hours after getting the treatment, maybe even longer if my leaking bunghole didn't continue to notify me of the effect.

                          I cant help but wonder if the neuro pain issues experienced here are related in similar fashion to my issues. Where constant colon irritation caused by whatever chemical treatment is creating the neuro issues? Any tries to experiment in this area done?

                          Totally agree. If I'm gassy, or ready to drop a deuce, my "neuro" leg pains go through the roof. Excruciating thigh spasticity and spasms too. Everything peaks while I'm taking a dump, I don't think my body likes me rooting around in an "exit only" hole, but then the pain scales back to its 'normal' levels (which is bad enough I still let it impair me more than I'd like).

                          Been on 'all' the go-to meds they push on us, as well, but nothing really helps.
                          "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                          "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

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                          • #28
                            Originally posted by Mize View Post
                            Update: the increased Lyrica has definitely reduced my overall nerve pain level. I've been journaling my morning nerve pain levels (along with prior day's activities) and excursions above a 4 have been infrequent with nothing over 5. That's a worthwhile improvement.

                            Glad it works! How are the cognitive effects? That stuff (and gabapentin) left me whacked out at doses close to max allowable.
                            "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                            "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

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                            • #29
                              I have a somewhat similar pain issue. But my pain goes from a steady 7 to a steady 6 after a #2. I do not use chemicals or insertions. Its a simple two finger swirl for about 15 seconds as the pooh drops down a little. Then I just go in and fish it all out. I used to think that I was doing it wrong, but after years of doing it this way I guess not. However, my extreme pain is only minimally due to "rectal excavation".

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                              • #30
                                My Dad takes high dose gabapentin 800mg four times a day, cymbalta 60mg once a day, tramadol 100mg once a day, hydrocodone/tylenol 15mg once a day and as needed. It helps, but it isn't enough, and he does think the gabapentin makes him more tired/less sharp. He has burning bad butt pain (T11-T12 fracture - now L3 ASIA C). He really can't sit in one chair for more than a couple hours without much worse pain.

                                What helps his butt the most when the pain is bad? Sitting on an ice pack like one of these, which he keeps in his freezer and ready to go at all times...

                                https://www.amazon.com/Elasto-Gel-Ho...py%2Bknee&th=1

                                And doing things/getting out/moving/reading etc.. to try to distract himself.

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