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added versed to my pump

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  • added versed to my pump

    should clear the cath tonight and should feel it tomorrow. In the hospital trial it had a notable effect on the nociceptive side also with the baclofen clonidine seemed to further reduce the spasms but I may have just had a better than usual run with them.

    I've got my fingers crossed for some release. Was a real clusterfuck getting this combo compounded and it is not quite right and will be sorted before the next refill sept 24th. faster than usual but I think because of the poor compounding apparently versed is not normally available in the correct concentration or something so they think it is sorted and should be right next time.

    I'm so weary of the constant exreme levels of pain and praying this is going to help. The only downside is this is experimental and there is concern over long term efficacy and if it will need to be continually increased and there is only so much room in the pump. Medtronics is involved as it is not an approved med for their pumps but said okay and they're also sending a rep to question me at refills and every other refill a tech to listen and run full external diagnostics.

    seems my shit insurance is actually not going to pull the "unapproved for usage" BS and try to avoid paying or it.

    will update

    Last edited by ketamine kitty; 08-29-2014, 08:13 AM. Reason: tipe lyke shyt

  • #2
    Good luck on this trial. Keep us informed about how it works for you.

    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.


    • #3
      good luck KK. Let me/ everyone know.


      • #4
        I really hope it gets you some relief.

        Proofread carefully to see if you any words out.


        • #5
          I'd like to know too. Hang in there.
          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


          • #6
            Good luck ket!
            T6 Incomplete due to a Spinal cord infarction July 2009


            • #7
              My doctor added Bibucaine to the mix with baclofen. It's made a huge difference on my central pain. Maybe you can try that if that's the kind of pain you're having. I usually get boluses but just recently had my midafternoon bolus stretched out a little and my pain is much worse so I'm actually going to call my doctor right now and trying to get it set back to where it was
              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.


              • #8
                Update as in all things SCI nothing is easy. 2 steps forward one step back. The good news I've had horrific nociceptive lumbar pain knee buckling fall down pain. Basically a 10. This is where I have had the most help, on a good day 6 still bangs around up to 10 but I would say 6-8 on average. I find this remarkable.

                Versed (Midazolam) is in the benzo family. As Clonidine added to Baclofen is greater than the sum basic 2+2=6, Midazolam affects both Clonidine and Baclofen the same way so 2+2+2 could equal ???? not enough data. so the kind and good Doc D had to reduce the Baclofen and Clonidine for this first fill, wanted me in hospital for when they hit , but I glared my no, said I could dial 911 and would it kill me, she paused thought said I really doubt it.

                It hit Friday night while coming home from dinner with friends, two blocks from home I felt like I had consumed about 3 bottles of vodka, got home friends came in and I sat down and passed out. they could wake me thought I had too much to drink (which actually only had 1 splash of wine knowing the meds would hit). They left I went to bed, wife actually checked me several times as I wasn't moving at all and barely breathing. Should probably have called 911 but I'm here so... I had a real BP crash was like 70 over 45 or something the next day. Checked it when I stood up and went right down. Took an easy weekend and it has stabilized at about 110-120 over 60-75. Visual distortions, spins, but doing nothing didn't really matter. That is mostly gone now as well.

                However the cut in Baclofen / Clonidine has had a real negative impact on spasticity. As it is a benzo she's taken my diazepam away which I also used daily, so spasms are back to frequent ugly and painful. They also reduced my bolus count from 8 with a 2 hour lockout to 4. I need 7-8 per day so have been in the shits. Doc D said at next fill (25th) if all is normal she can raise everything to where it was and give me back all my boluses.

                Conclusions: Being a guinea pig is not without potential problems fortunately the BP didn't get any worse. There is notable lumbar nociceptive pain relief did not seem to extend up through the Thoracic region or the Cervical, I've boken my neck and back as well and while not the pain levels of the lumbar still a lot of pain. Doc thought the basic diffusion in the spinal fluid would help there as well, but seems not. I believe if we can get the Baclofen and Clonidine settled in this will have be the best I may reasonably hope for and good enough to keep me going, I'm also hopeful she can titrate up more and do even better. BFF said I'm calmer, more serene, Wife said I seem calmer, Mom even noticed via phone saying the same thing. So while I have not quite gotten what I had in the hospital trial it seems to be more than I may be giving it credit for. No regrets and think this has great potential.

                Ry. Bupivicaine and any opiates such as Dilaudid, Morphene, etc and I lose B&B and most right leg functions , tried them on 2 separate occasions in trials with the same results.


                It's a week now and all stabilized so unless someone asks something I'll not likely update this until after the refill and titrations


                • #9
                  Thanks for the update. It sounds like it's a mixed bag, but if I read this right it's still a net gain, albeit with a few drawbacks. I hope those negatives diminish as you're able to increase the dose.