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    Originally posted by WonderDerek
    ****************************NOTE****************** ***********
    THE PAIN I AM HAVING IS NOT NEUROPATHIC PAIN. The problem I'm having is with the NON-neuro pain

    One thing that I have just read is that people seem to overlook that I'm not looking for something to control my neuropathic pain. My neuro pain is more often than not bearable. The Fentanyl does, however, help with the neuro pain as well. I forgot to add earlier that I am now on the 50mcg patches and they work fine most of the time. I have one on now and although it is helping ease the pain it is not allowing me to sleep. I do not plan on upping my dosage either. Also, will someone ban the dejerine prick?
    Hi WonderDerek,

    You take a shot of heroin (purest form of opioid??) and you fall asleep so fast you dont have time to get the damn needle out of your arm. But with all the synthesized "opioids", Big Pharma must put something in them to keep you awake.... aside from all the ear ringing you get from all the damn aspirin/acetemetaphine they include in the mix. They probably don't want people falling asleep at the wheel (if driving) or falling and getting hurt at home or wherever. Lawsuits. If I'm taking oxy or hydrocodone (Percocet or Lortab whatever) I can't sleep for as long as I'm taking them..... well the first 3 or 4 days. They're almost like speed.

    So you may want to wait awhile (until you're ready to sleep) before taking your neuro-pain meds like Neurontin/gabapentin. These will help you sleep.... they're like sleeping pills to me if I'm in bed. If I'm up and in my chair I can tolerate the drowsiness... if I'm concentrating on something they don't make me tired at all.

    I don't know what dose of Neurontin/gabapentin you're on (I'm on 500mgs x 4) but you could double the dose at bedtime to help you sleep. Cut back on the opioids (although kinda hard to do with the patch I imagine... without testing it) a few hours before your bedtime and take the Neurontin/gabapentin when you want to sleep. It may help. Or take your Neurontin/gabapentin with 5 or 10mgs of Valium/diazepam after laying off the opioids for a few hours. Maybe remove the patch a couple/few hours before you want to sleep.

    Long term users of pharma opioids don't have this problem... but the pain relieving properties reduce as well.

    Opioids make my neuro-pain worse by relieving all my other aches and pains leaving me to concentrate or focus on the stabbing neuro-pain in my right side. I don't have a prescription for any opioids but do them once in a while when I can get my hands on some. I do them more or less to get high on.... a "stay at home" mini-vacation as I refer to it as.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria


      Hey Derek ....
      I've been following this thread and just thought I would pop in with my 2 cents worth here. My husband Bill is on a 25mg fentanyl patch as well as 20mg oxycodone. He takes extra strength tylenol for breakthrough pain. He is a 6'1 ex-logger, pipeliner, heavy equipment operator, hunter bushman type .... and I have seen him crushed by his pain on bad days. He was the type that wouldn't take a pill for anything (not manly you know) pre sci ..... he would absolutely agree the pain is the worst part of living with this injury. I could be wrong here but I think dejerine was making fun of the idea that you were only after a cheap thrill by looking for stronger pain meds ... and yeah you went out and got sci so you could get good drugs to get high ...... right . Of course we know that's not the case ... he/she was just making the point ..... you need to do whatever it takes to stay sane and lead as "normal" a life as possible .... it sounds like you've found a doc that understands the nature of this injury so you can do that.
      Derek this forum is one of the most valuable here at CC ..... everyone here comes from a place of experience that is invaluable. Remember knowledge is power .... Don't be scared off ....
      Good luck with school ..... you're an amazing guy and I'm so sorry this happened to you .... hang in and stay strong and remember you're among friends here always !

      ~ Be the change you wish to see in the world ~ Mahatma Gandi

      " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
      Jane Siberry



        I am glad you finally found the correct dosage to somewhat relieve your pain most of the time. I hope you also find a way to get some sleep. Don't stop posting here. This, as obione said, is a very valuable thread with lots of useful information.

        I am looking forward to hearing you do great things in college. I really hope your pain gets to a tolerable level so you can enjoy all the things you deserve. But given that you cant sleep, you may be the one to outlast your buddies at all those frat parties. LOL

        Good luck......
        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown


          Derek, I 'm glad to hear you found a dosage that works for you. For someone with the kind of pain you're facing that's a HUGE accomplishment. And it comes at a perfect time before your fall classes start. That must have been a hellish night without your patch, hopefully your dad got the message on just how vital they are for you.

          I realize this is a sore point for you, but Dejerine has a pretty sarcastic sense of humor that comes out of a lot of bitter experiences very similar to yours. He's been coping with full-body, severe neuro pain for something like 20 years and has had doctors insist that the pain isn't real and he's crazy, literally yell at him and rip him a new one because their treatments didn't touch his pain, and had friends and family and many other ignorant people run him down for his efforts to get his pain under control. If you read some other Dejerine's other posts you'll see him use this sarcasm to attack research funding issues like how NASA is getting a huge budget while pain research is starving, and other injustices. He also has a lot of valuable knowledge to share that's helped a lot of people better understand what's going on with their pain. He definitely was not attacking you and if you read his post again you'll see that he's using sarcasm to sympathize with your plight because he's been there for a long time, so hold off on your attack, OK? I didn't appreciate the accusations against you, but I don't want to see them going the other way, either.

          BTW, as a side note I'll mention that I sometimes watch House on TV and one thing that really bugs me is how the other doctors run down House for being "addicted" to drugs for his pain. It annoys me to no end (and that's putting it politely) that they're equating legitimate dependance with addiction. There's a big difference, people!!!
          Last edited by David Berg; 17 Aug 2006, 12:03 PM.


            Derek, I was one hundred percent being ironic, not sarcastic. I am like you. I have heard so much about "secondary gain" etc. from people who didn't know about pain, that I thought I would show sympathy by poking fun at all the ridiculous accusations people make toward us, by "putting a little English on it", and exposing the ridiculousness of their claims. I meant to help you smile and to make you LESS vulnerable to their judgings.

            I guess when you are in pain, you deal with it differently. I try to use humor. No one would deliberately subject themselves to spinal cord injury or CP. I love you man and am sorry if I hurt your feelings. I meant the opposite of what I was saying, you know, IRONY. If you follow my posts, they usually are jokes, not serious. This one backfired. Sorry.

            When you have CP a long time (I think I have had it longer than you have been alive), and have spewed out all the serious frustrations, you sometimes find you have nothing left to say but humor, kind of a gallows humor, but humor nonetheless. I find Bob Clark can get me laughing when no one else can, when he decides to let out a little humor (You will also find he has insightful clinical information you can't get anywhere else).

            For reasons I cannot explain, the ones here who display a little humor occasionally remind me I am human. Often they are the very sickest ones. When Alan said "whinefest" it made me smile, and I still think of it, because Alan is so sick, but still had that little bit of humor in him. I can laugh at my own predicament a little more easily. Thanks, Alan.

            Even your anger leaves you because you realize your language on the unknown condition of CP cannot be heard, so you either withdraw entirely or sometimes like me you reach that point where you go into the hospital for something and smile at the ineffective pretense of some teeny bopper, just out of school, nurse (who turns out not to be a nurse, just a clerk) trying to write down your history, then you repeat the same symptoms to the doctors as before, and then you leave saying the whole business is a joke.

            I consider it a good day if I refrain from including spoof symptoms just to wake them up, like "the episodes of spontaneous combustion are growing worse" or "I think my mitogen activated protein kinase level is increasing--how did my test results come out", or "How do you feel about Schlepeldigger's ideas on this condition?", or whatever.

            I think maybe it is the medication that does it to me. Silly, drunk, isolated out of my mind, whatever you want to call it. Life is easier to endure if you try to look at it sometimes as an episode of "MASH".

            I don't have enough energy to get upset much. I am actually glad to see you still do, although I apologize for causing it. I think what I was trying to say is "Don't waste energy trying to defend yourself because the accusations are so silly and don't make any sense, so why respond." Anger kept me going for a long time too, but eventually, it was too exhausting.

            When a person feels impotent, sometimes they think anger preserves some power to them, but it winds up backfiring. People get tired of sacrificing animals to the angry God, and leave.

            You need the help of your family, so try not to show your anger to them, eventually they give up.
            Last edited by dejerine; 17 Aug 2006, 3:18 PM.


              Derek -
              Excellent that the fentanyl is producing some results for you.
              My wife used 150 mg patches (actually, a 100 and a 50) for about 6 months before switching to methadone.
              Bob suggested removing the patch a few hours before sleep. That's probably not a good idea, as once removed, the patch will dry out and be unusable. I assume the patches you use are intended to be replaced every 3 days; it would get real expensive to replace them daily.

              Bob -
              That's a nice tip about the gabapentin; we might try changing times of gab dosage from morning to evening. Thanks.

              - Richard



                I find that the percocets that I take for breakthrough pain keep me awake as well. Reaing this thread I am realizing that I shouldn't let my pain get to the point of needing them at bedtime, or I will be awake until 4am. Haven't solved this myself yet. I don't thing playing with taking the patch off and on will help, as the meds take a while to get into your system, and your current pain is being relieved by meds that got into you body several (supposedly 12) hours earlier.

                Good luck with this. Hope your issues stay resolved and school goes well.
                T7-8 since Feb 2005


                  Originally posted by sjean423
                  ...I am realizing that I shouldn't let my pain get to the point of needing them at bedtime, or I will be awake until 4am. Haven't solved this myself yet.
                  Our pain specialist said her goal is to get the primary medication tweaked until breakthrough meds are needed only once or twice a week.

                  Originally posted by sjean423
                  I don't thing playing with taking the patch off and on will help, as the meds take a while to get into your system, and your current pain is being relieved by meds that got into you body several (supposedly 12) hours earlier.
                  Yes. It takes many hours to ramp up its effectiveness, and longer to ramp back down. It's intended to be long-term.

                  - Richard


                    Originally posted by rfbdorf
                    Our pain specialist said her goal is to get the primary medication tweaked until breakthrough meds are needed only once or twice a week.

                    - Richard
                    Sounds like I need more tweaking ...... am using the breakthrough meds twice a day, or more.
                    T7-8 since Feb 2005


                      Morphene Hummmm

                      I always thought that Morphene was the real big near last resort pain med.... at any rate, Im on Morphene , Avinza and Lyrica... Results??? eehhh.. OK.. Not great, Just OK. But Im going to try a stimulator. Trial Soon . Constipation ? Big Time. Solution: Lots of Stool Softners with Active Laxitive additive. Thaniks., Mike, FLA
                      Mike (Florida)

                      Cant we get 1 do over?


                        Morphine is quick acting, better used for breakthrough pain than maintenance.
                        - Richard


                          Originally posted by rfbdorf
                          Morphine is quick acting, better used for breakthrough pain than maintenance.
                          - Richard
                          Morphene does have an extended release version as well...The combination of Morphene extended release(I can't remember the letter attribution anymore) and short acting Morphene was the only thing that worked for me when in rehab...
                          L-1 inc 11/24/03

                          "My Give-a-Damn's Busted"......


                            Fentanyl and pump

                            I am new to the board, my name is Jani, and I was once on three 100 mcg Fentanyl patches. Now I have the Synchomed pump with Dilaudid in it ( I get itchy with morphine and Dilaudid is stronger ). I have arachnoiditis, which is extremely indescribably painful, constantly.

                            Do not take your patches off in the 72 hour period. Sometimes you can change patches in a 48 hour period with your doc's permission. I had a hell of a time keeping them on, with getting a breakout, etc.

                            The pump works better for me. I am glad I have a great pain magmt doc who also prescribes breakthru meds. I take Baclofen for spasticity, Reglan and Nexium for stomach problems, Effexor, Colchicine, etc. I have been through so many pain meds I could prolly help anyone who has questions.

                            Hello to all of you, and Derek, please don't mix any alcohol with Fentanyl and Vicodin, it's a great way to end up dead. That's all the preaching you'll get from me. When you wean from the patch, it's hard, you'll get cold sweats, etc. Enjoy your time as a student, good luck with the grades while on the meds, it does complicate things.