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Thread: Just Curious...

  1. #1
    Junior Member jackiegarriga's Avatar
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    Jan 2011

    Just Curious...

    I am a C6 incomplete(<---bad diver)quad.I am just curious as to what other people w/my injury are taking for nerve pain.I take 1200 mg neurotin,but I'm still in a lot of pain.I don't expect it to disappear,but this is all consuming!!

  2. #2
    Hi Jackie,
    I don't have the same type of injury as you, but I have plenty of nerve pain. Two years ago a virus migrated to my spinal cord and caused inflamation and swelling to my spinal cord, leading to lesions along the length of the C & T sections. This seemingly healed after large doses of steroids, but I was left with sensory nerve damage on the left half of my body from neck down.
    I've been taking Neurontin for a year and a half and am up to 3600 mg/day. So, you still have a while to go to reach the upper limits of what is considered safe. I would call your neurologist and tell him the situation and ask if you can up your dosage.
    The only effects I have had are intense sleepiness and my memory seems to have gotten a little worse. The only problem with Neurontin is that your body begins to get used to it and then the dosage isn't as effective anymore. I'm at this point now and am not sure what my Drs are going to do. I'm a little worried because they may need to switch me to something else that could have more side effects. Good luck!

  3. #3
    I maxed out on the effective dose of gabapentin and switch to pregabalin about five years ago (75mg three times a day). That made a huge difference. I also take Percocet as needed, but just started to increase pregabalin to 100mg. I'm hoping that gives more relief because I find the side effects of pregabalin not as bad as the side effects of narcotics.

    Good luck.

  4. #4
    max dose you need to find a good pain management doctor who understands SCI pain, well understands it better than a regular PM doc, cause don't think any really understand it,as there is no real permanent management.
    myself i found neurontin worked well, but dose had to be raised about every 6 months, i have only taken the brand name, too many people here lost pain relief in this community when the generic was available.
    i was switched to lyrica and i found no relief , nada, i found my PM doc at the time believed the pharmaceutics sale people and medical device sale people ,not his patients
    i was taking 4 x900mg a day, i found and had also read at other pain forums that 4 times ws better than 3 times fpr PAIN. many times your dose spread every 6 hour will work when spread over 8 hours = more pain
    the max doses i knew of were for the on label seizure use ,not off-label pain use, 3x a day may be fine for anti convulsant use
    Last edited by metronycguy; 05-02-2011 at 12:24 PM. Reason: max dose
    cauda equina

  5. #5
    I started taking Neurontin along with 50 mgs Amitriptyline 1999, switched to Lyrica in 2006. It helped for a while. Side effects were brain fog and weight gain. I stopped taking Lyrica(I had terrible withdrawal symptoms even though I tapered off very slowly) in 2009. I now take 30 mgs Cymbalta in the morning and 75 mgs Amitriptyline at bedtime and it helps a lot. Cymbalta is an antidepressant that's also used to treat several types of pain.

  6. #6
    Senior Member
    Join Date
    May 2010
    Chesapeake, VA
    Ryan was taking 1600 mg of Neurontin 4 x a day and not getting relief. Tried Lyrica and it messed with his head (not in a good way) and stopped after a day and a half. The high doses of Neurontin caused stomach problems so doc put him on Nexium to protect his stomach from the high doses. Nexium inhibits mineral supplements from being absorbed so he had significant bone loss.

    He is now taking 300 mg of Neurontin 2 x a day and 60 mg of Cymbalta in the morning for the nerve pain and was able to stop the Nexium. He has percocet for break through pain but it does not work for nerve pain. He uses it for ortho pain when he pushes therapy too hard. He is also taking Forteo in hopes of rebuilding the lost bone density. He knows this is risky since at only 19, he is still growing. After talking to all his doctors, they decided it was worth the risk since he hopes to walk again.

    Bottom line, high doses of Neurontin can cause stomach damage and the meds to protect the stomach can cause other issues.

    There are several meds available for nerve pain and everyone seems to respond differently. You need to work with your doctor to find a drug or combo of drugs that will work best for you. It is rare that all nerve pain is eliminated but you need to invest the time to find what will make you pain tolerable.--eak

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