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Thread: Neurontin for Pain Anyone?

  1. #1
    Senior Member smokey's Avatar
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    Neurontin for Pain Anyone?

    I've been experiencing pain down my right arm, elbow, wrist, hand and fingers for 36 years or the entire time I've had a SCI. I've also had a brachial plexus injury on the right upper extremity as well. Either the pain has increased or I am less tolerant so I went to see a pain Dr. at Mass. General in Boston. He seemed alright and prescribed Neurontin! 300mg, 3 x day. I've only been on it for about 10 days but I've neither experienced any reduction in pain nor any of the potential side effects. I'm sure some folks here have taken Neurontin. Can you tell me if you experienced any relief or had problems or what dosage you were on? Thanks.

  2. #2
    Will move this to the Pain forum, but that is a common starting dose of Neurontin. Neurontin (gabapentin) is the most common drug used for both central neuropathic pain and peripheral nerve pain. Doses as high as 4500 mg. daily have been used. Generally your dosage would be increased every 7 days until you 1) get some significant reduction in pain or 2) start to have significant side effects. Another similar drug that can be tried is Lyrica. When do you see the pain specialist again? Can you call and ask about increasing the dosage?

    (KLD)

  3. #3
    Senior Member smokey's Avatar
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    Thanks KLD, I don't see the Dr. again until Feb.6. I suppose I should call him and ask about increasing the dosage. Boy, nobody seems to come to this new Care/Cure website anymore. The format or layout is a little quirky and at times I can't even get on the site. You must have seen a huge drop-off in visitors here...yes?

  4. #4
    no kidding this site doesn't see much traffic anymore. In all honesty not much has changed in ten year that directly affects my paralysis the cure form is a ghost town and as far as taken gabapentin or lyrica or neurotin .. i've never erperienced any relief just side effects.. not worth subjecting yourself to..

  5. #5
    Taking gabapentin or lyrica really depends on the person, and how it works for them. I take gabapentin, 800mg four times a day for some relief. Lyrica worked for me, but the side affects weren't worth it. My eye sight became blurry and also swelling in my legs became worse, so I went back to the gabapentin. For some, neither drug works, you just have to give it a try.....and don't give up too soon. I don't like the drugs, but if they help, it can be worth it. My neuropathy is chronic and progressive, so I do appreciate the help it gives. KLD is right, if the lower doses don't help, you have to let your doctor know. My family doctor wouldn't up the dose from the 300mg. She wasn't familiar with the drug, so I went to my neuro surgeon and he upped the dosage, and now my pain clinic handles it. I knew from the info I had received on care cure that larger doses were possible and they worked. In the beginning I was on three times a day, but when we got to the 800mg and it was helping, the doctor changed it to four times a day for a better result. I've been on this dosage now for about three plus years.

  6. #6
    Senior Member ChesBay's Avatar
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    I took Neurontin about 12 years ago. I was going to a pain clinic . I don't recall the dosages the doctor was trying to ramp me up to but I clearly remember being in a significant fog. It wasn't like a buzz or a high just a fog that I found unpleasant . Looking back I can recall taking some long driving trips for work and I really should not have been driving because I was out of it.

    I don't remember if it helped with pain, if so not much. I stopped taking it ( about two months) because the doctor I was seeing stopped taking the private insurance I had.

    That's probably not a very helpful answer to your question. Bottom line, I didn't like the reaction I had to it at all and didn't feel it helped with pain. I will add and I 'm sure you know every ones reaction to medications is very individualized. If you are still taking I hope it''s giving some relief from pain.

  7. #7

    Need help with suggestions on pain, plus a great neurosurgeon in california

    I need advice, badly! I have SCI L-2, going on 10 years. I woke up from surgery (10 years ago) in pain and it hasn't let up since. In fact, it's getting worse. I take zanax, Norco Macrobid and Lexapro. I can't even remember all the different drugs i have taken over the years, some caused me to sleep my life away, some just didn't work at all, others, i couldn't function. So?.. I don't have a neurosurgeon, haven't seen one for over 8 years! I could really use some names of neurosurgeons in California, familiar with spinal cord injuries. I walk with a cane, no motor below my knees, but i wear AFO's that make walking possible without falling so much. I ride horses, unfortunately i always pay dearly in pain, (worse than normal) but can't conceive not riding anymore. If anyone has advice for a great neurosurgeon, please let me know. Probably a good idea to see if all is still in place. I have harrington rods L-1 to L-3. I'm truly at my wits end with my burning butt, some days i burn from my butt down the backs of my legs to my toes. I use ice, helps temporarily. Thanks for any suggestions

  8. #8
    It looks like you aren't on any neuropathic pain medicines right now. Those would be better for your burning butt and other burning symptoms. These can include Neurontin or lyrica, nortriptyline, cymbalta or effexor, and others. Often a combination of a neuropathic pain med + a morphine family pain med (Norco) is helpful. You should keep a detailed list of all the medications you have tried, the doses, how long you tried them, and any side effects. That is the best way to help a doctor you see in the future help you. Try to reconstruct that it if you can, or be flexible and ready to start "fresh" when you see a doc.

    Can you get to UCSF? The best neurosurgeons are there. But it sounds like you aren't planning for more surgery, so a Neurosurgeon is actually less helpful. Honestly, Neurosurgeons do not want to manage pain... they want to do surgery. You need a physiatrist with experience in spinal cord injury and possibly a pain doctor. Santa Clara Valley Hospital in San Jose is the best place for SCI in your area, but I realize it is far. Maybe you could go there and see a physiatrist for an opinion and they can refer you to someone local.

  9. #9
    Thank you for your suggestions. Hopefully not planning on surgery. Only reason i asked is i thought most SCI injured people probably had one that kept up on their backs, changes, possible rod, screw changes, someone that could be causing more pain than the normal SCI pain. Cauda Equina Syndrome, etc. Is it irresponsible for me to not have seen a neurosurgeon for the last 8 or more years? Basically, just saw them soon after my injury, different opinions etc. But never since. I went off Cymbalta to Lexapro at the suggestion of a SCI pain management study going on in Boston. They said it proved to work better. I don't notice a difference. I'm thinking of trying Neurontin again. It's been years.

  10. #10
    I agree with UCSF - I went there 5 years ago and underwent my third and final (hopefully) spine surgery revision. I highly recommend UCSF Spine Surgeon Sig Bervin. Although I am still fried daily (with burning pain below my L1 level) ever since my SCI 12 years ago, Dr. Bervin got me upright through highly aggressive anterior and posterior approach. If there is anything to be done surgically - he is the one to get it done. Glad you have horse riding. I think it is good to return to meds that you tried before. I found Neurontin not as helpful as Lyrica personally. I know all the meds I take have CNS side effects but I can still work , kayak, etc. Good luck to you.
    Last edited by arndog; 02-20-2014 at 11:57 PM.

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