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Thread: Pain, Can't bear it much longer,HELP

  1. #11
    PLG,
    I have started to cut down on the baclofen cause I never had spasms but DR Donovan at TIRR put me on it. So now I have broken two of them in half to slowly cut back.
    Yes on the Neurotin, I started taking 800mgs qid and realized that the amount was to high so I will drop back down.
    I live on the state line of Shreveport LA. I have used the DR's at LSUHSC but am not impressed. The DR that took the rods out of my back was there and he moved to California. I have an app.at LSU with a Neuosurg. next week but I don't know if I need an Ortho.
    i wish I had lessoned to my Ortho cause he had told me that if he done the surgery he would take some rods out and maybe leave some. I have not seen him since I have had them out. I don't know if he will see me now that I chose another DR to take them out. He my take that personally.
    This is so complecated and I don't feel like going on another mission. It consumes me to chase DRs.
    I will keep you posted.
    Thank you very much
    Oh, I am not against a pump. Just another thing to worry with

  2. #12
    Senior Member Kaprikorn1's Avatar
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    Originally posted by SCI-Nurse:

    Oops, I can multiply. 800 mg 4 times a day (QID) would be 3200 mg/day! Is that what you meant? Way too much unless your MD has instructed you to do this. Usually Neurontin is not recommended more than 1800 mg/day although I have seen some patients on higher doses. Just wanted to clarify my math! PLG
    PLG...I take 600mg of Neurontin QID (2400mg/day ) as prescribed by my SCI Doc. He wanted me to go to 3200mg but I wanted to wait till the n/p pain got too much for 2400 to handle...so far 2400 is handling it for a year now.

    Kap

    "It's not easy being green"

  3. #13
    Originally posted by maryonwheels:


    Yes on the Neurotin, I started taking 800mgs qid and realized that the amount was to high so I will drop back down.
    mary did the higher neurontin dose give relief ?
    your doc may just raise the amount over the phone, and call in a higher amount to the pharamacy, saving you a trip

  4. #14
    Junior Member
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    Hey there,I used to take 900 M Neuritan 4 times a day..Cut back to twice a day b8ut think I'm going back to 3..It helps me..See your Dr even if you don't like to.I don't either.Wish you the best

  5. #15
    I had tried it only for three days so I'm not sure but I think that I was getting some.

  6. #16
    Thanks everyone. I too have had some of my patients on 900 mgs QID and that is not totally unusual although not recommended in the drug references.

    It was just that Mary originally posted that she was taking 400 mg QID and increased it to 800 mg QID. I wanted to make sure she discussed this with her MD first before doubling the dose. PLG

  7. #17
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    Smile morphine/baclofen pump

    Just thought I'd share my recent experience and see if anyone has had similar. I am t10/11 incomplete with severe neuropathic pain 12 years post. Also severe spasms. I opted for the pump and it was implanted on Nov 13, with both morphine and Baclofen. After about three days I began to experience serious hallucinations: i.e. seeing things, hearing voices, vivid lucid nightmares, ets. So I went back to the pain center (Swedish Hospital, Seattle) and they callibrated the pump back to zero. After doing a little research on the internet, I concluded that the hallucinations were from Baclofen withdrawal. AFter all, I went from taking 100 mg orally to 1 mg a day via the pump. Hallucinations are a known side effect of Baclofen withdrawal. Anyway, I see the pain doc next week and they will start the pump up again. While it was working, however, I did notice a remarkable decrease in my neuropathic pain, at least 50% less, but the spasms weren't much improved. I think it's just a question of getting the right mix in the pump, and since each of us is so different, it's not surprising that we all have unique reactions to this kind of treatment. I have not lost hope, however, I think it's just a case of fine tuning. If anyone out there has had similar experience, let me know. Thanks, Wheelady

  8. #18
    Senior Member alan's Avatar
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    I'd like to have a cyanidee pill available to use when I finally reach the point where I simply can't take the torture any more. I think simply knowing that option is available would make the situation a little easier to handle, as I'd know I have the power to end the suffering. As it is, I have no idea how I could euthanize myself (blasted useless fingers), so that's just another thing I feel powerless over.
    Alan

    Proofread carefully to see if you any words out.

  9. #19
    Senior Member NEWPARA's Avatar
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    Im sorry I cant help much I wish I knew what caused my pain.I cacelled my surgery to have my rods taken out for now.

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