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Thread: Central Pain Questions

  1. #1
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    Central Pain Questions

    I sent a post titled "Questions" in July 2004 to which some of you sent extremely informative responses. Thank you. In particular, Dejerine's response was incredible. I've researched the articles he suggested, and now I have new questions.

    To reiterate / update: My son, Kevin is a C7 quad who is totally debilitated by extreme pain. Based on research, I think he has central pain however, we've yet to find a pain specialist / diagnosis.

    He describes it as feeling like he is beign struck by lightening all over his body while his skin is being torn off. Often during these attacks, all of his muscles tighten up into knots and he can neither move or call out for help.

    He is currently taking 1600 mg neurontin 3 x's day, 150 ugh duragesic, 2 mg xanax 3 x's day, valium, and up to 12 mg of IV Dilaudid every 4 hours. While the dilaudid and xanax help, I don't think anything is really relieving the pain.

    Now for my questions:
    1. I've read about tethering and DREZ surgeries at Craig and I am wondering if there are any statistics, or concensus as to their effectiveness?

    2. I also read many conflicting articles regarding narcotics. Some say that central pain requires higher doses. Others say that narcotics are not effective. Some say that with this type of pain that addiction should not be an issue. Yet, doctors tell us that narcotics will cause the body to actually create pain to get more. How can you tell which is the original pain and which might be caused by the narcotics? Is there any kind of consensus in the medical community regarding all these differing opinions?

    3. I see that many of you are extremely well informed regarding central pain. Knowing what you know now, would you seek out national specialist such as Craig, or the Nat'l Foundation for the treatment of Pain at Healthsouth Houston Rehab? Are there others that have a reputation for better results/care?

    4. Dejerine suggested we contact Donald Price at UFla. Is he well known in the pain management community?

    Thanks so much in advance,
    Anita
    Anita, Mom to Kevin, C7, June '03
    Central Florida

  2. #2

    My drug experiences

    I’ve been a C3 incomplete quad for the past year. And boy, my medication experience is a horror story. For six months I increased my neurontin up to 2700mg per day. As I increased, I kept getting worse. Then in addition I tried methadone for five months which made it even more horrifying. I admitted myself to the hospital to solve the polypharmacy problem quickly and safely. Upon discharged they were weaning me off of neurontin and methadone but added carbatrol (tegratol) which gave me nasty side effects. I have now weaned off the narcotics, the neurontin and am now in the process of weaning off carbatrol (tegratol). I have since but put on lamictal so we'll see how that works. Oh by the way, I have had horrifying tactile hallucinations, lasting for a year now. They have progressively gotten worse. I have been a RN for the past ten years and have been researching all of my meds to a tee.

  3. #3
    problem is if the pain is there, weaning off medications that are managing the pain serves no purpose? i saw the term polypharmacy however there a couple papers that are in the research forum that show using the 3 medications together for neuropathic pain works better than one med. if age is a factor , than polypharmacy would be a problem.
    using 3 meds synergistic worked well for me when my pain was at its worse.
    3200 neurontin 10 to 20 mg amitriptyline in evening and either percocet or ultram for breakthrough pain. i was very active and exercising every day and slept pretty well at night too
    of course i had memory problems and tiredness, but ill was doing more exercise than 90 percent of the non injured population, due to lack of pain.
    which in the long run really helps out with mental and physical well being.
    cauda equina

  4. #4
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    Central Pain & Craig Treatment

    >> Anita,
    >>I have central pain from a C5 injury on 6/10/2002 that resulted in no paralysis but severe pain. I am currently on 900 mg Neurontin twice a day (1800 mg), 20 mg Elavil, 5 mg Methadone, and 100 mg Ultram 4x a day (400 mg-max dose). I also take 300 mg Wellbutrin. Though this last is to treat my bi-polar disorder (unrelated), I have had significant improvement lately which may be due in part to its inclusion. I live in Denver and have visited Craig Hospital. My comments are below...

    Quote Originally Posted by Anita_J
    I sent a post titled "Questions" in July 2004 to which some of you sent extremely informative responses. Thank you. In particular, Dejerine's response was incredible. I've researched the articles he suggested, and now I have new questions.

    To reiterate / update: My son, Kevin is a C7 quad who is totally debilitated by extreme pain. Based on research, I think he has central pain however, we've yet to find a pain specialist / diagnosis.

    >> I had a great deal of difficulty getting a diagnosis. I learned a great deal from the CPS alliance (CPS_ALLIANCE@yahoogroups.com). It helped me to realize I was not alone.

    >> I found that my neurologist, neurosurgeon, psychiatrist, and PCP were of no help in diagnosing this problem. Luckily, we have a wonderful pain doctor here in Denver by the name of Rick Schwettmann; he has been tireless in treating my pain over the years. Not only is he dedicated, innovative, and very progressive, he also takes Medicare, which I needed since I am totally disabled. If you come out to Craig, you may want to contact Dr. Schwettmann and see if you can arrange a consultation--maybe he can at least finally diagnose the problem for you and give you some treatment ideas for your doctors back home. Contact me and I will send you further information.

    He describes it as feeling like he is beign struck by lightening all over his body while his skin is being torn off. Often during these attacks, all of his muscles tighten up into knots and he can neither move or call out for help.

    >> Interestingly, my lightening-like shooting pains were alleviated a great deal by Neurontin. My difficult area has been the chemical-like burning that I feel in my hands, arms, legs and feet. I think my leg and foot pain is related to spinal damage and potentially a second SCI at the bottom of my spine. I have lots of disk problems and cysts. My c5 injury was the result of an accident coupled with severe spinal stenosis, which has been corrected with surgery.

    He is currently taking 1600 mg neurontin 3 x's day, 150 ugh duragesic, 2 mg xanax 3 x's day, valium, and up to 12 mg of IV Dilaudid every 4 hours. While the dilaudid and xanax help, I don't think anything is really relieving the pain.

    Now for my questions:
    1. I've read about tethering and DREZ surgeries at Craig and I am wondering if there are any statistics, or concensus as to their effectiveness?

    >> I consulted with Dr. Falci about my central pain (and DREZ). He told me that there was "nothing" he could do for me, that my pain was due to nerve damage. You may wish to talk to him/his nurse in more depth about his injury before you make the trip. If there is a chance of a tethered spinal cord, he could possibly help. Also, my evaluation was two years ago; maybe some additional progress has been made. If you hear of any additional hope for central pain sufferers, pass it on!

    >>The day of testing was very hard on me. Pin pricks are unbearable. I was pretty disappointed when his evaluation was that there was nothing to be done and his only "solution" was narcotics. Since my injury was well understood at that point, I didn't understand why he couldn't just tell me there was no hope before all the testing. Again, I encourage you to talk to them at length so that you and your son aren't burdened more than necessary. I can find you an email if you don't have the right contact.

    2. I also read many conflicting articles regarding narcotics. Some say that central pain requires higher doses. Others say that narcotics are not effective. Some say that with this type of pain that addiction should not be an issue. Yet, doctors tell us that narcotics will cause the body to actually create pain to get more. How can you tell which is the original pain and which might be caused by the narcotics? Is there any kind of consensus in the medical community regarding all these differing opinions?

    >> I have not found most traditional narcotics to be effective against CPS. I, however, cannot tolerate most narcotics, which is why I take such a small dose of Methadone. The Methadone has helped some, but the Ultram and Elavil have helped more. Beware of Ultracet--it is just Ultram with Tylenol and costs a great deal more! I have found opiates like Percot to be completely useless in addressing pain and they can really knock me out. The Methadone doesn't seem to impair my alertness and such, though it may impact my memory. By the way, methadone is very cheap.

    >> I have tried several other psychoactive drugs to deal with my pain.

    >>Zyprexa and Abilify were somewhat useful, but I couldn't tolerate the side-effects. There is a new form of Zyprexa called Zyprexa Zydis that is supposed to be much better in terms of side-effects (Abilify was supposed to be better as well, but wasn't for me). All of these drugs are very pricey.

    >>I recently tried Namenda, an Alzheimer's drug. I experienced nose bleeds and dissociation. These are not common reactions. You should be careful to research all side-effects before trying a drug so you know when a strange one crops up. My father experienced aggression. My pain doc told me about a quad patient of his with very severe (8/10) pain who was able to get off Percocet after starting Namenda. There may be some real hope with this drug. If you start it, start slow and really watch for side-effects. Most docs can give you a sample to start.

    3. I see that many of you are extremely well informed regarding central pain. Knowing what you know now, would you seek out national specialist such as Craig, or the Nat'l Foundation for the treatment of Pain at Healthsouth Houston Rehab? Are there others that have a reputation for better results/care?

    4. Dejerine suggested we contact Donald Price at UFla. Is he well known in the pain management community?

    >> If you are in Florida, you may wish to contact the Miami Project to Cure Paralysis at the University of Miami. At least get their monthly newsletter. I haven't seen a lot of pain research going on, but they may be helpful to you(miamiproject@miami.edu).

    Thanks so much in advance,
    Anita
    >> I sure hope that helps! Good Luck!
    >> Robin

  5. #5
    DREZ, or dorsal root extirpation is intended mainly for "at level" pain. Since pain comes in from the adjacent level as well, DREZ also gets pain from the adjacent level. My experience is limited, with my friends who had it, having initial improvement, but return of the pain later in six months or a year. I do not know what role it plays in Central pain therapy since a C7 is theoretically injured in ALL the tracts below, so surgery at one level should only affect that level and the spillover into accompanying levels. I am having a hard time remembering but it seems to me that Wise has posted on baclofen as a muscle relaxant for the muscle tightenings. Your description of lancinating pains is ordinarily attributed to central pain carried in the posterior columns, which is supposed to be more treatable than the burning carried in the front of the cord, so I would try to find some medication to help. You could also try PubMed at the National Library of Medicine online or just Google to read about lancinating pain. Sometimes posterior cord pain is called lemniscal pain, because the posterior columns connect above to the medial lemniscus as it approaches the brain. I am glad you are concerned enough as a mother to keep after this. Don't drain yourself, Pace yourself in helping your son so you don't burn out. I think it is okay if you get drained to tell him you wish you had a dozen to help him but since it is just you, what are the very most important things for him, where does he need the most help and try to deal with that. I think of Alan's mother who has helped him with his burning pain for so many years. She gets my nomination for mother of the century, and Alan for hardiest soul on the planet. I have the terrible burning as well, worst inside my mouth, but bad at the distal ends of all extremities and sensitive areas where touch used to be important, but it is in my bladder more than my gut, so I don't have the degree of loss of appetite that Alan has. I do have constant muscle pain with the grippings, but in me they take more the form of constant rippling fasciculations that drive me buggy, along with the pins and needles. As a parent, I know you will do all you can, but with central pain, ultimately the person themself has to decide to live. This is NOT a one time decision or commitment. It must be made most days and on really bad days, several times. Once you have made the decision to live enough times, it get easier to keep on making it, but the affirmative for life doesn't come as a function of escaping the pain, it comes from finding some pleasure. I think in order of importance are !) Avoidance of stress 2) entertainment to keep your mind off the pain 3) Lowered expectations so you don't feel like a loser at being injured 4) Any actual physical pleasure. Here may be where you can help. Maybe a treat, a particular meal, music, clean arrangment of his room with items of interest to him, or massage. Massage may be different here, you might have to avoid rubbing skin as you push into muscle, he must guide you. Becasue SCI people sit all day, they tend to be pained in areas around their seat. If massage involves areas like his buttocks or front of his thighs, which make you uneasy to manipulate, perhaps even a professional can be used.I would talk to a good SCI nurse and ask them how they deal with this in working with their patients. Without sexual sensation, an erection really doesn't mean much, so I wouldn't get too nervous as you find what you can and cannot do by way of massage. The reflexogenic erection may have SOME sexual sensation. The autonomic system often retains some feeling where the somatic sensory system is completely gone, so it is a delicate matter and requires discretion and communication. I wouldn't mention it except that massage is often one area where someone with muscle pains can gain a little relief.Anyway, you can simply say I know you have pain in your buttocks and I would like to help that but of course I wish not to cause any male response, and some nerve take different routes in SCI, so we will work through it and you communicate with me. Although I will get booed out of here, I think if a single person lacks a sexual system, they are better off to get sexually stimulating materials out of their lives so they aren't reminded of what they cannot have (and start wondering who will ever love them), so I do think at some threshold, he has to let you know if massage is causing any feeling so you can avoid it, and it is probably your job to bring the topic up in a noncritical way. Even physical warmth from his mother can seem sissy to a boy, so make sure you can actually communicate. Don't be icky about asking him about this, just be motherly and matter of fact. I have seen two or three good posts from Wise on sexual matters in SCI, and although it is a private area, this is also something that is good to read about. The University of Miami has an online explanation which SCI nurse gave a link to somewhere here. Anyway, try to give him a little pleasure in life, maybe some humorous videos, maybe his surroundings, maybe music. Above all try to keep stress out of his life. Overstressing yourself won't do it and won't help him. Everyone in the home needs to learn to work on this. You need to keep stress out of your life too and then pass it on. You can only do so much, and it is not wrong to ask him to be selective so you can devote your energies to what matters most. This may surprise you. For example, when my son installed a stereo in my bedroom, this allowed me to distract myself from my burning and my mood improves when I put on some music that holds my attention. I also think a MOTHER can write to elected officials and attract attention. Your senators should know you want money to be provided for basic pain research at NIH, particularly for nerve injury pain. Keep reading, it will make you more annoyed when you go to a doctor's office and he doesn't know CP, but it is essential that you read. David's site and the others mentioned here have good info. There is an article on nerve injury pain in every copy of "Pain" but it is too expensive to subscribe. Go to the nearest medical library and read the articles every month. This will also tell you who is doing research in the area and they may be a good source for your son. Donald Price is very well known on CP, as is Ron Yezierski at the same institution. UFla, and should know what clinician is up to speed. Mass General/Harvard take CP seriously. You must realize there is no satisfatory cure right now, but you should be able to get help for posterior cord pain. As far as surgery for CP, I would get TWO opinions before you do anything. I am not aware of too many that are helped by surgery except where they implant some sort of drug releasing device. We would all have our cords severed if that helped, but the pain comes back in a few months. Ditto for removing the cingulum in the brain. Implanted electrodes have found some utility for people with SMALL or LIMITED areas of pain, but you need too many of them if the pain is over a large area of the body. There are posts here on cauda equina syndrome (central pain in the lower sacral spinal nerves) where the pain in the feet is benefitted from implanted electrodes.
    Last edited by dejerine; 07-28-2005 at 07:37 PM.

  6. #6
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    Thanks for your time. I can relate to your drug horror story. Kevin is currently taking 4800 mg of generic neurontin per day. He's alergic to elavil, and stopped taking the methodone because it caused dementia/hallucinations. Six months of tegretol did nothing so that was eventually stopped too.

    Right now he exists between one IV dose of dilaudid to another. It doesn't relieve the pain, but it does take the edge off a bit. He sleeps nearly all day everyday, waking in horrible pain for his meds and drifting back off again. On a good day he can eat, on a bad day he can't. He could never use the computer at this point. He hasn't had a good day since last thursday, so I'm growing increasingly concerned over that.

    There must be something we can do?!
    Thanks again,
    Anita
    Anita, Mom to Kevin, C7, June '03
    Central Florida

  7. #7
    Anita, has Kevin ever taken name-brand Neurontin? I've heard a number of people say that when they switched to generic their pain levels shot thru the roof, that the generic was much less effective.

  8. #8
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    Rrouch,
    Thanks so much for your informative response. It helps a lot. As Painonline says so well, I'm not certain that Kevin is able to clearly articulate all the parts of the pain he is feeling. That is something we are working on.

    His neurosurgeon at the time of his injury was Dr. Alan Levi (also one of the head researchers at Miami Project). I have asked him if he will see Kevin again to evaluate whether there may be physical causes / surgical interventions that would help. Keep your fingers crossed for us that he will agree to try.
    Cheers,
    Anita
    Anita, Mom to Kevin, C7, June '03
    Central Florida

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    Brand vs. Generic Neurontin

    Quote Originally Posted by David Berg
    Anita, has Kevin ever taken name-brand Neurontin? I've heard a number of people say that when they switched to generic their pain levels shot thru the roof, that the generic was much less effective.

    David, Yes he has been switched, but I am not certain exactly when it was. I will contact the pharmacy. This might help give us some clues. Thank you!
    Anita, Mom to Kevin, C7, June '03
    Central Florida

  10. #10
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    Can Kevin tolerate getting out of bed a few times a day for maybe half an hour at a time? It would be good for him to sit up, plus he'd be able to get to the computer and do some web browsing to keep his mind busy (it won't distract from the pains, unfortunately, as I know all too well, but it's something to do. You can also get a laptop to network to your main PC that he can use in bed, if he has a hospital bed with a back that raises.)

    So far, I am still getting out of bed and staying out, despite my back and abdomen telling me I shouldn't. It's not like I feel better in bed, anyway - that was true in the early years of the pains, but no more.)
    Alan

    Proofread carefully to see if you any words out.

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