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Thread: visit to pain center: many questions

  1. #1

    Unhappy visit to pain center: many questions

    Today I had an appointment at the interdisciplinary pain center at the local university for my nerve pain. I am not sure what to think of it yet. Maybe you guys can help to clarify some. They will try different drugs in new combinations and bigger amounts. I am not impressed by that since I have tried a lot and nothing really helped. About marijuana they said it only helps people with a lot of spasticity. Is that so??? They mentioned a medication "Ziconotin" from a marine snail in a pump or catheder in your spine. Has anyone tried that? They also gave me a tense device but had no clue where to place it. Anyone with full body nerve pain using a tense device and does actually know where to put the electrodes?? The worst was their psychologist. This might sound arrogant but do you know these certain psychologist who make you think you know more then them and they are the ones who need help? Yuck.
    They are considering to offer to come to their dayclinic for a few weeks. I really don't know... Has anyone done that and has it helped? Maybe it would just be fun to meet new people. But I am sure the almost knock you out with medication.

  2. #2
    On the Zinconotin, do a search here on Prialt. I believe that's the same stuff.

    The TENS devices can help, but you should seek out advice on how to use it.

    As for the day clinic, you might give it a shot to see what it has to offer.

  3. #3
    Zinconotide. Synthetic snail venom. I don't think its used much in the US because of a "black box" warning about psycosis and hallucinations at high doses.

    I put my TENS pads on areas where I have the most pain.

    Yes. I have met a few smug Psychologists and Psychiatrists so far. Their description of you in the medical records can alter your life and how other doctors perceive you.

    I am sorry that you are in pain.

  4. #4
    I had a horable experienc ziconatide (Prialt). LOTS of phsycosis. Real scary stuff. I would avoid if I were you. Check out this thread for my experience
    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.

  5. #5
    Moderator jody's Avatar
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    I have heard from an amputee with awful neuro pain that snail venom causes a really bad trip. I noticed some nodding and drooling too while she was on that. her family had an intervention to get it discontinued, however she was using other drugs that may have affected or interacted with the snail juice. she claimed it did cut down the pain though.
    Last edited by jody; 11-01-2008 at 05:27 PM. Reason: spelling err

  6. #6
    Moderator jody's Avatar
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    weed does help with spastic muscles and also is good if you don't get hungry because you cant feel your stomach.

  7. #7
    One thing I forgot to mention, if you smoke, it will amplify your neuro pain. After I quit smoking, I noticed a significant drop in my pain. Of all the things that makes it feel better, exercise has to top the list. I don't know if it's the distraction or the endorphins it gives off but it sure makes a difference. Other than that, the only other advice I can give you is to do the best you can to avoid narcotics or opiates. They may seem like they work, but before you know it, you're upping your dose to the point where if you really need narcotics they don't work for you.
    The pump the doctor is talking about is typically used for baclofen. I have one that I've had for years to help with my spasms and I've tried plenty of pain medicines in there also. Including Dilaudid and Prialt (I feel like I was a guinea pig using that stuff and had horrible problems, problems I don't even remember at this point and I'm still getting over some memory issues). Don't be afraid of the pump, as a matter of fact, we have a whole thread here based entirely on the pump that will give you lots of details on what it does and how it works. I'm currently on my third mainly because the battery dies out eventually, but the surgery is relatively simple to replace it and you can probably go home the day after it gets put in is not the same day. It really does open up the possibilities of many medications you can use that you wouldn't be able to use without it with much fewer side effects than oral medication.
    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. #8
    Thank you all for your input. I decided not to go there any more because I have a strong feeling that they don't have the experience to be able to help. If I go someplace for three weeks it should be worth that energy. A trial and error with drugs I can do at home. And the Prialt doesn't seem the thing for me... BTW I forgot to mention how they greetet me: "We lost your questionnaire (which had taken me 3 hours to fill out with no finger function), but we are sure we can do without."
    I think I will do some research on the biofeedback and persue that as a next step.

  9. #9
    I just had to go through the "psychological evaluation" to clear me for trying the pain pump. I had to pay out of pocket for a $260 oral questionaire and a $600, 1000+ question written test. Now I'm trying to find someone to do the trial injections.

    Seems like I'm paying a lot of money and spending a lot of time for something that may or may not work. Hopefully something will come through soon. I hope we both find something that works for us and SOON.
    No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
    Fredric Lieberman

  10. #10
    rybread - Do you mean smoking cigarettes or weed? My boyfriend has lots of neuro pain and is a smoker (cigarettes, no weed), so I found your comment very interesting.

    Thanks!

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