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  1. #1

    Ketamine Infusion

    Has anyone here had anything to do with a ketamine infusion for treating Central Neuropathic Pain? I've just finished my 2nd trial for a neuro stimulator implant (Boston Scientific and Nevro) with no success. My pain doc mentioned a ketamine infusion, but was unable to elaborate at the time. I don't know what else to do. I've tried all the usual meds and am on 100mg fentynal patches 2 daily, which is just dumbing me down enough to be able to live with the pain.

    Geoman
    "Wheelie Wanna Walk!"

  2. #2
    You're going to be in hell when you get off Fentanyl. The withdrawals are crazy. I was on 150mcg for a while(on Fent for 5+ years) and had to stop cold turkey. Even with weaning down you'll get some w/ds that'll drive you up a wall.

    I didn't know Fentanyl worked for neuropathic pain. I'm lucky enough to not have neuro pain, so I've not needed Neurontin/Gabapentin/Lyrica since 2007. Fentanyl works great for somatic pain but it kind of made me a zombie.

    I've had a spinal cord stimulator implanted before(had to come out bc got infected) and it brought my daily pain from a daily 7-9 to a 0 on good days. Absolute miracle apparatus for me and I know it works for many others. Ask doc if that's a viable option for you?

    Never heard of ketamine treatment like this before.

  3. #3

    ketamine

    I tried the protocol kept upping the dose til I fell in the K-hole without real relief for my pain.

    i have a stim that doesn't work as well search on the stim it seems it does not work for most and some have ahd significant problems. Also they have other implications long term.

    good luck

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  4. #4
    Quote Originally Posted by bollefen View Post
    I tried the protocol kept upping the dose til I fell in the K-hole without real relief for my pain.

    i have a stim that doesn't work as well search on the stim it seems it does not work for most and some have ahd significant problems. Also they have other implications long term.

    good luck

    ket
    Spinal cord stimulator? That's what you have that doesn't work?

  5. #5

    clarification

    sorry pain at 10 this week, wish i was dead type of pain.

    I tried the ketamine, nasally, upped dosage til I went into the black hole they call the k hole. did not get any relief

    I also have a spinal stim, and despite multiple revisions it does nothing for the pain. It functions, just does not provide any pain relief.

    kindly,

    bill
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  6. #6
    @WonderDerek, Geoman has already tried two different brands of the stimulator without any success.

    @Geoman, don't know anything more than a quick Googling can tell me, but I hope you find it works for you. Are you having low-dose or high-dose infusion? In-patient?
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  7. #7
    Quote Originally Posted by thehipcrip View Post
    @WonderDerek, Geoman has already tried two different brands of the stimulator without any success.

    @Geoman, don't know anything more than a quick Googling can tell me, but I hope you find it works for you. Are you having low-dose or high-dose infusion? In-patient?
    Thanks to all for your feedback.

    Hipcrip, thanks for clarifying. I haven't discussed how the ketamine infusion would be done at this stage, it would be in-patient though. It was just mentioned as an option when my second trial had failed. I'm not sure what else to do. It all sounds a bit scary to me as I'm very concerned about building up a dependence. I have tried to cut down on the fentynal patches in the past and it's not a nice thing.

    Bill, sorry to hear you're having a bad week. It will get better, there's always that to help us through. Can you expand on the side effects of the ketamine re the k hole.

    Geoman
    "Wheelie Wanna Walk!"

  8. #8

    Ketamine infusion

    hey, sorry you're doing poorly. Re the ketamine infusion and ketamine in general. Historically it is an anesthetist for babies and animals. In large does you become essentially unconscious although you hallucinate wildly. At high doses it also turns off some neural functions (need a doc maybe dej to clarify).

    there are a few modalities for usage. Powder, nasally. Spray, nasally or injection.

    There are trials utilizing ketamine to "reset" the brain to eliminate pain. They have been somewhat successful for phantom limb pain, somewhat less for mastectomy.

    My pain doc knows one of the fellows doing the clinical trials and inquired on my behalf. I have Cauda Equina and Central Pain along with nociceptive and neuropathic pain.

    The Central Pain and Neuropatic pain are the worst although the nociceptive pain can be bad enough to make me pass out or vomit.

    The doctor running the trials told my doctor that in all the trial to date there was ZERO efficacy for CP. My doc asked for a compassionate exception into the program as I was in a serious suicidal phase (guess that has not really changed). The Trials doctor sadly declined due to the lack of any indication it would help and the scarcity of funding and incredible scrutiny the trial was under.

    I tried the nasal spay protocols and I titrated up over time with no reults past the first time I hit a dosage high enough to cause some mental "changes" I continued to titrateup under med supervision. I reached a point where I essentially "blacked out" or entered an extreme disassociative state during which i had lifelike hallucinations, more realistic than LSD or peyote buttons.

    To me this was not fun and after discussions with the doctor i discontinued the trial. The good news is it is not physically addictive and the "trip" held no fascination for me so i simply stopped.

    So here I painfully sit, no relief and no hope left that i will ever find it except through death. Unfortunately it never gets better and continues to get worse.

    Re ketamine for you ... I don't know your exact pain and causality so can offer no thoughts.

    Personally I would try, I'd try anything.

    good luck, if you have any other questions feel free to ask and i will answer candidly.

    kindly,

    Ket
    Last edited by bollefen; 12-21-2011 at 11:25 AM. Reason: typos
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  9. #9
    Thanks for the info Bill, it's much appreciated. Sounds like it might be worth a try. I'll talk to my pain doc in the new year and find out more about what he's proposing. Thanks again to everyone.

    Geoman
    "Wheelie Wanna Walk!"

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