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Thread: After two years, i am finding out Nuerontin doesn't work for me

  1. #11
    Senior Member jb's Avatar
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    i take 2800mg/day. i would rather deal w/anything than not having my neurontin. i feel it's helped me tolerate the pain significantly. i do however forget EVERYTHING!! sometimes i get to the point where i can't finish a sentence or concentrate etc. i would rather that than deal w/the excrutiating pain. i guess it effects everyone differently.

  2. #12
    Senior Member Kaprikorn1's Avatar
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    The "mind fog" I don't have but the forgetting...now what was this thread about? Yeah, the feeblemindedness is a pain but I've learned to make lists and keep a note pad nearby all the time...but it's better than the "boiling in oil" foot pain anyday!

    Kap

    (This space available)

  3. #13
    Junior Member spike_man23's Avatar
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    nerontin

    pfizer has a new drug that supposedly treats "nerve" pain better at a lower dose. I take Gabapentin (generic for nerontin) 800mg 4x a day and have been stable for more than 2 years.

    Ryan

  4. #14
    it called lyrica, but for some reason the feds are slowing the process down by trying to make it a class 3 or sched 3 medication, like percocet

  5. #15
    Senior Member BeeBee's Avatar
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    Neurotin is used to treat "phantom" pain. Not physical pain. Meaning it can help with the burning, tingling, itchy stuff below the level of your injury. In a way, it re-tricks the mind into not feeling the discomfort. It won't help a bit for physical pain from the rods, an infection, menstrual cramps or whatever. So, Solar, cutting out the Neurotin won't have any affect on the pain caused by your rod failure and bone infection. You need more traditional pain meds, either narcotic or "asprin" reletives, for that. It would be more likely to help alleviate the burning in your feet. I think you'll find, after the initial surgical pain subsides, that your general pain level will be reduced. Also remember that the rods can cause pain elsewhere, because they are close to nerves and to the injury site.

  6. #16
    Senior Member BeeBee's Avatar
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    Meaning it can help with the burning, tingling, itchy stuff below the level of your injury.
    sorry, that's CAN'T help with this pain. Amazing what a "t" will do to your sentance

  7. #17
    neuropathic pain is physical pain, no doubt about that..

    neurontin can definitely help with the burning ,tingling stuff.

    thats its main use in neuropathic pain..
    i think you meant the difference between Somatic Pain and neuropathic pain,

  8. #18
    I have neuropathic pain from my neck down to the bottom of my feet. Its the burning & electrical hell of pain. Every time I wake up from sleep the pain is 10 times worse. But some days the pain is better than others. Most days its a 10 plus & the better days are about a 6.

    I took Neurontin for about 2 yrs. @ 4800 mgs a day and boy my head was foggy. I gradually got off of it and my pain was the same, no change at all. I've tried several other medicines with no help so far. So right now I don't take anything. But its good to know that Neurontin does help some.

  9. #19
    Neurontin hasn't helped my neuropathic pain at all. I haven't been taking it long but notice it can make a person {not all}, completely loose their minds. I'd like to see the pharmaceutical company crumble to its knees. [or its makers shot]

    I may seem hostile and that's because I am. Many Drs load a SCI patient up with drugs and smile.{un needed drugs even} The truth is, if I had never taken any of the drugs I'd be 100 % better off. I was fine, never on any drugs for 12 years, I met some dis folks online, they described how certain meds could relieve my aches and pains and how I could get the meds, then my whole world went to hell in a bucket.

    I was ok till I took medicines for pain, a good work out 2 or 3 times a day was the best medicine to relieve pain.

    --fast

  10. #20
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    Living with severe neuropathic pain is hell-ish. No doubt about it. I feel for you guys, the way a mom's heart aches when her kid suffers.

    Fastasaturtle, it might not surprise you to learn that the company that originally piloted neurontin did crumble.... Folks weren't shot, but some of the principals were at least discredited. There were scandals, hearings & lawsuits over alleged fraudulent (or at least misleading) clinical trials by its original manufacturer, especially when neurontin was prescribed for bipolar disorder.

    Some pain experts still think neurontin is effective for pain. (I'm a little skeptical, but that's just one person's opinion.)

    Neurontin is now distributed by a pharmaceutical company that bought out the original one that did the clinical trials.

    I was singularly unimpressed with neurontin's lack of effect on my son's neuropathic pain, even at high doses. No change in his pain when he weaned off of it, except he was less dizzy & groggy.

    IV dilaudid afforded him some relief in the ICU, but it was VERY sedating. And of course you can't stay on IV dilaudid once you're out of the hospital.

    Outpatient: Fentanyl patches with norco for breakthrough pain took the edge off, a little bit. The pain specialists wanted to implant a pump to deliver analgesia intrathecally. We were at wits end.... and desperate people do desperate things. So we went to Beijing.

    Chinese miracle? I know there is insufficient data to support my personal observation and an "N" (sample size) of "one" is hardly scientific, but my son's constant feeling that his body was "on fire" went away when he woke up from Dr. Hongyun Huang's OEC transplant. (he had some gnarly post-op headaches, but they went away). Dr. Huang makes no promises about pain relief. In fact, he says very honestly he doesn't guarantee pain wouldn't get worse with his procedure if the patient gets more sensory return.

    But something happened in China to the signals that were going haywire & transmitting the neuropathic pain sensations. I wish the researchers would more fully investigate OEG's potential.

    We're still waiting for the day when my son can move his limbs... but he's getting stronger day by day... and there is a bit more movement in the right arm. The waiting is a lot more tolerable for him without the constant excruciating pain. He was able to detox himself, with gradual titration, off all the opiates. He has never taken baclofen. Now once in a while, he will take an advil for normal musculo-skeletal pain in his neck (where all his stabilization hardware is).

    Pain relief is just one of the many things we can't give up fighting for.

    Matt's mom

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