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Thread: ? For those who have gone down/off neurontin

  1. #1

    ? For those who have gone down/off neurontin

    I have recently been trying to do this to help with some side effects I'm experiencing and to see where the threshold is for how much it is actually helping the pain. Long story short I was on 3200mg/day for a few years then got down to 2000mg/day for a few years and have now made it to 600.

    Each time I go down some I have a few days to a week where the pain is much worse but eventually levels out, and then I go down again. Well I have finally reached the dose where the pain is almost unbearable. It's been almost a week and it has not leveled out yet.

    So my question is in your experience how long should I continue to wait to see if it gets any better, and how do I know that the pain level I'm at now is just how it's going to be at this dose?

    Also, I have been working with my doc to do this and am waiting to hear back from him on this same question, but I wanted to get feedback from others who have done this as well. Thanks

  2. #2
    Senior Member NW-Will's Avatar
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    Very similar to Lyrica.
    Takes like 5 weeks before you cross the Rubicon and things improve, especially when you stop taking it completely.

    I was told that and it sounded nuts at the time, but is pretty much how it worked for me.
    Best advice is mind distraction, just keep yourself distracted, as soon as you're left pondering you'll go crazy.

    This should keep you distracted for a while ... http://sci.rutgers.edu/forum/showthr...ghlight=lyrica

  3. #3
    Initially after my injury I was on 1800mg/day. After about a year, I started to reduce it and got down to 600/day and I've been taking that much for about 4 years but I can't seem to go with any less. If I felt confident that it would get better after some amount of time, I think I could get off of it completely. I've only made it three days without any Neurontin and it was so miserable I don't want to just see how long I can go. I strongly believe that the Neurontin is the reason for my fatigue, lack of concentration, and memory loss so I really want to get off of it.

    Will, did your nerve pain get much better after 5 weeks or do you think you just got used to it?

  4. #4
    Senior Member NW-Will's Avatar
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    The pain never gets better!
    I have learnt to deal with it a little better.

    But do I think the lyrica/gabepentin made any difference to my pain.... NO! The pain I have now and the pain I had on lyrica/gabepentin is the same in my mind. The worst pain though was getting off the damn stuff.


    Quote Originally Posted by STOLhorse View Post
    Initially after my injury I was on 1800mg/day. After about a year, I started to reduce it and got down to 600/day and I've been taking that much for about 4 years but I can't seem to go with any less. If I felt confident that it would get better after some amount of time, I think I could get off of it completely. I've only made it three days without any Neurontin and it was so miserable I don't want to just see how long I can go. I strongly believe that the Neurontin is the reason for my fatigue, lack of concentration, and memory loss so I really want to get off of it.

    Will, did your nerve pain get much better after 5 weeks or do you think you just got used to it?

  5. #5
    Quote Originally Posted by NW-Will View Post
    The pain never gets better!
    I have learnt to deal with it a little better.

    But do I think the lyrica/gabepentin made any difference to my pain.... NO! The pain I have now and the pain I had on lyrica/gabepentin is the same in my mind. The worst pain though was getting off the damn stuff.
    I agree, and STOLhorse to answer your question I was eventually able to got totally off the gabapentin, tramadol, and Percocet. It took about 4-5 months to do, but I haven't had any pain meds in my system in a few months now. While I was still on the meds, my average pain level was a 7/10. During the time period I was slowly lowering my doses the pain jumped up to 8.5-9/10. I had many days/weeks that I felt like you and it was unbearable. But I had made it that far so I kept going. Since I've been totally off the meds my pain went back down to a 7.5-8/10. So it's still slightly worse than when I was on the meds but not enough to make the side effects worth it. It was the process of tapering off that was the worst part.

  6. #6
    Senior Member NW-Will's Avatar
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    Mirrors my experience.
    There is an end in sight... and it will slightly improve, the big improvement is I have a clear head.

    Quote Originally Posted by Brad09 View Post
    I agree, and STOLhorse to answer your question I was eventually able to got totally off the gabapentin, tramadol, and Percocet. It took about 4-5 months to do, but I haven't had any pain meds in my system in a few months now. While I was still on the meds, my average pain level was a 7/10. During the time period I was slowly lowering my doses the pain jumped up to 8.5-9/10. I had many days/weeks that I felt like you and it was unbearable. But I had made it that far so I kept going. Since I've been totally off the meds my pain went back down to a 7.5-8/10. So it's still slightly worse than when I was on the meds but not enough to make the side effects worth it. It was the process of tapering off that was the worst part.

  7. #7
    Thanks for the replies. You guys have renewed my motivation to try again. Now that you've been off of it for a while, when you're having a rough day, do you take some gabapentin as a one time dose or do you use something else to get through?

  8. #8
    Senior Member pfcs49's Avatar
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    I don't have much experience. I was on Lyrica a week before I stopped because of what it did to my mind.
    I tried gaberpentin a little longer-3 wks?-and when I stopped cold turkey, I went through a week of hell, but I got my mind back.

    I felt the gaberpentin had some efficacy, but it wasn't worth what I had to give up to have it.

  9. #9
    Quote Originally Posted by STOLhorse View Post
    Thanks for the replies. You guys have renewed my motivation to try again. Now that you've been off of it for a while, when you're having a rough day, do you take some gabapentin as a one time dose or do you use something else to get through?
    I don't take anything when it gets really bad, I just deal with it. I used to take a Percocet for times like that but had really bad withdrawal symptoms when I was getting off of it that I don't want to risk dealing with that again. Distraction is the best thing for me, especially watching tv shows or movies that keep my attention.

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