Announcement

Collapse
No announcement yet.

Pain - giving up the search

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Pain - giving up the search

    This is a wrap up on my quest to reduce my pain levels to tolerable, I've thrown in the towel. Can't do this anymore and there is nothing left to try but deep brain and that's a no.

    My doc says I'm a multimodal complex pain patient. She was always up front there is nothing for CP but if I was willing would experiment and maybe learn or find something. Worth a short visit to the injuries to put some perspective on this, won't go into the details, old military combat. Broken C2-3 fused, Laminectomies in thoracic, Fused L3-S1. Stenosis, Degenerative disk disease. Clinical Diagnosis, Failed Back Syndrome, Post laminar Syndrome, Post fusion syndrome, Cauda Equina Syndrome, Central Pain. Net you have the CP, you're screwed, sorry folks, pray you have a regional or pain of a lesser God.

    I have a new pump and am near max of the new wonder trial drug, Midazolam, (Versed).

    There is good news about it, for the "chainsaw in lumbar" there is notable relief. I've had periods where it is down to 5, annoying. Totally off label usage, good luck trying to find someone who'll do it. If my main problem were of the Lesser God I might have found religion. I won't give it up any little bit helps.

    However, it does nothing for the Central Pain. I've detailed what it is like, no need to do it again. Dejerine, I'm done. Chased too long, I'm weary of the chase. What I find happens is one pain feeds another and then here comes the shitstorm. Still have major episodes a few times a week and sometimes for weeks at a time. The easy times ..aren't it is ever vigilant and always aggressive.

    I have the spasticity 60-70% controlled, still working on that but am reaching what they say is about it.

    I've found the best I can do is meditation, supplemented by alcohol and valium depending on time, bad combo.

    So there you have it. Hope all my friends are well. If anyone has any questions I'm happy to answer. There is no protocol other than the deep brain I haven't tried.

    Kindly,

    ket

  • #2
    Hi Bill - with a melancholy sense of relief, I am happy that the chase is over for you. That is so exhausting trying new regimes and treatments after all these years. Trying to decide if there is a slight uptick on the "miserable index" with each new treatment - "did you move from a 8.5 to a 8.25?" REALLY? It is so hard to quantify misery once it is beyond what a normal person could even imagine. You fought a good fight trying to medically treat your way out of the hole you find yourself in.

    Although you may be isolated at home from others who are fortunate to not experience such pain, there are still those right here, reading your posts who get the magnitude of this problem, including myself.

    Comment


    • #3
      Yep, some of us get it. You're a tougher man than I, Gunga Din.
      Alan

      Proofread carefully to see if you any words out.

      Comment


      • #4
        Man I'm still searching. Meditation is a part of the puzzle, but only a small part.

        Have you tried a sensory deprivation chamber? I've been looking for one to see if it could reboot my software.

        So even Ketemine was a dead end?

        Comment


        • #5
          I don't know I could handle sensory deprivation with the pain levels and spasms I have, I would likely self terminate. I don't see any literature that says sensory dep truly reboots your software. Ketamine does. CP is not imaginary or phantom it is a real physical phenomena so a reboot does not fix the nerve damage the is the underlying causality. So not knowing your issues I cannot comment on ketamine for you

          Ketamine was a no go. Could not get a bona fide ketamine coma, not covered under insurance, the study my doc asked for a compassionate exemption in said in all their trials with ketamine there was zero efficacy so they would not. I was prescribed ketamine and did enough to drop into the K hole. but nada, in fact it helped nothing for me. The efficacy for phantom limb, breast removal and similar is quite high.

          ket

          Comment


          • #6
            "Phantom" pain is also real. It's a person's brain misinterpreting signals from their spinal cord about a body part or parts. In the case of phantom pain, it's parts which have been actually been detached from the body. In my case, it's my brain misinterpreting signals from my remaining spinal cord about my body below the level of my injury which, despite remaing attatched to my body, have been disconnected (detached) from my spinal cord by the injury. In both cases, the areas in the brain which correspond to the areas of the body in question remain and, because of the lack of normal nerve signals from those body areas, interpret the messages from the spinal cord about those body areas as pain.
            Alan

            Proofread carefully to see if you any words out.

            Comment


            • #7
              I didn't mean to infer phantom pain is not real, apologies to anyone I may have dissed. But Alan, you and I still have the nerves intact but the traditional link is broken and fucked up so in a ketamine coma, the damage that continues to generate all sorts of shit in the system after reboot is still there and active.

              In a severed limb the brain remembers yes. But the ketamine coma can work as when the brain resets there is nothing there to reconnect to so it has a reasonable probability of working, nothing fucked up generating acids and shit that find their way to the brain etc as we have.

              ket

              Comment


              • #8
                "Phantom" pain can sometimes be treated therapeutically by using a mirror, by which the brain is tricked into thinking the amputated limb is still connected.

                Our brains can come up with all sorts of crazy sensations that words can't properly describe.
                Alan

                Proofread carefully to see if you any words out.

                Comment


                • #9
                  seems I'm over medicated and they will ratchet down my meds, dizzy, fall down, extremely poor gait, confusion, slurred speech.

                  never did much for pain but up comes the spasticity.

                  life sucks

                  ket

                  Comment


                  • #10
                    Hi Ketamine kitty,

                    I have some of the problems that you have with my back also. I've had 4 surgeries and the last one, WAS NOT SUCCESSFUL, AS MY BACK SHATTERED. I am currently taking Duragesic and Dalaudid for my chronic pain. I'm new on this site, so please bare with me. I find that the duragesic is much better than the fentanyl patch. Also, I just switched from oxycodone 10 mg to dalaudid 4 mg and my doctor told me that the dalaudid is twice as strong as the oxy, so be careful. Well, I didn't read before I took 2 of them. Now, I'm a little out of it and trying to get some answers before I retire for the night. If anyone takes these medications, please write about your experience with them. I am itching all over and believe that I am hiving up. I have an EPI pen also. BP is high but pulse is low. Also, I'm having an emergency surgery soon on my GI track, because I have bottomed out, if anyone knows what this means. Why? What? How? is what I need to know. Looking forward to a comment yall! Yes, I'm from the South'; South Carolina, in fact.

                    Comment


                    • #11
                      Phantom Pain is real! I have a friend that has it! It's pretty cool, actually.

                      Comment


                      • #12
                        Medication is freaking me out now!

                        Duragesic and Dalaudid, mixed, is getting me really sick. Checking out for now, but will come back in the morning. God Night Everyone!!!

                        Comment


                        • #13
                          Originally posted by Godbewithus2 View Post
                          Phantom Pain is real! I have a friend that has it! It's pretty cool, actually.
                          No one said it is not real, and how you can think it is "cool" is beyond me, unless you are some type of sadist.

                          Phantom pain though is primarily something that occurs in people with amputation. It is not the same as the neuropathic chronic pain that occurs in SCI (such as most of our members have), nor in the type of chronic pain found in failed back surgery, such as you describe.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #14
                            I have a baclofen pump with baclofen and bibucaine mixed in it. I get a pretty high dosage to keep my spasms from tearing me up but I do notice a huge difference when I have it turned down a little. I recently had them makes it a little more bibucaine with my baclofen which has made a little bit of a difference but with central pain every little bit counts. Living in Arizona is kind of nice because of the dry weather. I noticed during monsoon season when the humidity is high that my pain is much worse. I give up on trying to make a huge difference in my pain also and have learned to basically live with it. Percocet's can take the edge off of it but I've got a lot of other pain issues to. I have a very sore back (I have no idea how that happened) and arthritic hip so the Percocet helps significantly with my backbut not too much of my hip. Sometimes my back pain keeps me up at night. It's very dusty. I remember when I first started feeling it I thought it was kind of cool that I could suddenly feel it and that was around six years ago. Who knew? 14 years post and I still get little surprises here and there. A while ago when I tried Cialis it gave me feeling in my peepee when I was dating a girl. I haven't really tried dating anyone else because I've been on bed rest. I'm finally getting myself off bed rest after a couple of years so I think I'll give it another shot. Okay, I'm getting way off topic. LOL. Anyways, central pain and Phantom pain are two separate things. Hope you figure out a good remedy for some of your central pain
                            C-5/6, 7-9-2000
                            Scottsdale, AZ

                            Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

                            Comment


                            • #15
                              Itching can be a side effect of opiate medications, without it being an allergic response. If you develop other symptoms of allergy along with the itching, that's a problem.

                              Nausea can also be a side effect.
                              Alan

                              Proofread carefully to see if you any words out.

                              Comment

                              Working...
                              X