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Thread: Prialt from the heavens

  1. #1

    Smile Prialt from the heavens

    I have suffered with neuropathic pain for almost 10 years now. The burning, stinging, pins & needles, boiling, and so on has been absolutely miserable during this time. Well, I think I've found something that actually works in the fight against this type of pain. The beloved drug by the name of Prialt, you know the synthetic cone snail venom, has come to the rescue! REALLY!!! I've tried many types of pain relief either orally or added to my baclofen pump (inserted into my abdomen to bathe my spinal cord with contained drug), mainly 'caine family' drugs of which did not work. I even tried the spinal cord digital stimulator that just managed to shock the snot out of me after several tweaks and 2 surgeries. The extra surgery was to reposition the leads for better continuity. I gave up on this technology after 2 years. I've been modifying my neuro-pills i.e. Neurontin, Lyrica, Cabatrol with little to no effect. And yes, I've tried even up to 3600 mg's a day of Neurontin.
    I've read that there are many types on neuropathic pain, in which I've truly become quite acquainted with. Well, there is this one really dirty most horrific pain inducing type. I'm trying to label type of 'hurt' to each. I'm thinking the worst one by far is dysethesia but I don't have enough data to run any sort of statistical analysis on it as I'm still trying to separate each according to pain equilavence. PRIALT zaps this worst one COMPLETELY!!! This pain comes with the burn/sting that accompanies a meal of adult portions, laying in bed at night biting your cheeks untill they bleed as a diversion tactic, and any other time where you'd rather be knocked out cold.
    I started Prialt with the lowest dose a week ago. It is added to my baclofen pump in which the only other drug besides the Prialt is Baclofen. I've since been relieved of the nastiest pain ever to reveal itself. Yes, I still have that moderate burn in my legs, feet, and hands but don't get discouraged....Please don't be detered by those words. That pain pales in comparison to the evilness that Prialt takes care of. During my next visit I will get them to amp up the dosage a bit to see what my remaining pain thinks about it.
    Anyway, I decided to write in this forum as it has aided me from time to time throughout my injury and in the hope that someone else tries it with the same results. The drug just plain WORKS!!!

  2. #2
    Congratulations ! You are very tough - good for you !

  3. #3
    Senior Member Fragile's Avatar
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    Have an appointment with a pain management Dr. on Nov. 10, planning on asking about Prialt. Just curious, have you had any negative side effects?

  4. #4
    Fragile, search here on Rybread's experiences with Prialt. Unfortunately they weren't as positive, so you should go into this as an informed consumer.

    73R, I'm thrilled that it has worked for you.

  5. #5
    I haven't had any sides effects yet.

  6. #6
    Senior Member Fragile's Avatar
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    Quote Originally Posted by 73roadrunner View Post
    I haven't had any sides effects yet.
    If you don't mind my asking, can you describe your injury (assuming SCI; level, years post, complete/incomplete)?

    At what point in your spinal cord/spine is the medication injected?

  7. #7
    Hmm, I thought I added this in my profile, it must not be visible--I'll check.
    My injury is c5/c6 incomplete. Actually they said I've just got a contunsion on my spinal cord which I suppose dictates incomplete vs. complete. I was in a wreck almost 10 years ago at age 20 and started receiving blacofen through the pump 5 years ago. It is injected in my lumbar area along with the recently added Prialt.
    No side effects yet!

  8. #8
    roadrunner, my first week was fine also, but after I had it turned up a couple of times I started having very bad memory problems which I still have. Check out this thread for my stuff and this thread for someone else's and a lot of other people's experiences. If it's working right now, you may want to leave it alone. And pay close attention to how your memory is doing. Good luck with it.
    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.

  9. #9
    I forgot to mention that very few of our spinal cords are actually severed, if anyone's here is, but that doesn't necessarily mean you are incomplete. That is determined by feeling around your anus. If you look around the forums some more, there should be a better definition of what it means.
    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.

  10. #10
    Thanks for the comments rybread. I'm glad to hear your comments as I was thinking about turning up the Prialt to see if I can rid myself of even more pain but seconds throughts are intervening now. I'll leave it as is for as long as possible. Did you keep turning it up because it would work for a bit than stop or you just wanted to reduce pain?

    Also, at what dose did you start realizing memory loss?

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