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  • Neurontin work for anyone else?

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    Old 05-19-2006, 11:39 PM   #1
    linkin01
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    Neurontin work for anyone else?

    I have severe RLS and per limb movement. I take several medications for anxiety and pain including Risperdal. The sleep doctor put me on Mirapex and also Card/Leva but both of them interfered badly with the Risperdal (they all act on dopamine). I couldn't take them.

    Later my psychiatrist put me on neurontin for anxiety. Neurontin is an anti-convulsant but has many off label uses. Well turns out it cured my RLS. I needed a very high dosage (4800 mg/day) but it works like a charm.

    Curious about the B12 suggestions. I just tried some B12 supplements for fatigue. If I take 500 mcg sublingual every couple of days it works miracles for fatigue!

    However, if I take 1000 mcg I get very bad anxiety and insomnia. It actually made my RLS come back one evening when I took 1000 mcg. Strange how the experience is different.

    Mike

     
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    Old 05-20-2006, 05:14 PM   #2
    pjc46
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    Smile Re: Neurontin work for anyone else?

    ABSOLUTELY!!! The first Dr. who finally believed me about my restless legs (and didn't think it was all in my head) started me on Neurontin. It literally restored my sanity, and I've been on it ever since.

     
    Old 05-20-2006, 11:22 PM   #3
    linkin01
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    Re: Neurontin work for anyone else?

    Quote:
    Originally Posted by pjc46
    ABSOLUTELY!!! The first Dr. who finally believed me about my restless legs (and didn't think it was all in my head) started me on Neurontin. It literally restored my sanity, and I've been on it ever since.
    What dosage? How many x per day?

    Mike

     
    Old 05-22-2006, 08:31 PM   #4
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    Re: Neurontin work for anyone else?

    Mike,

    I take 300mg. every 6 hours, combined with one Carbidopa/Levodopa 25/100 for the 3 daytime Neurontin doses and one Carbidopa/Levodopa 50/200 SA with the bedtime Neurontin dose.

    This seems to work for me most of the time. However, if I'm having a really bad night with break-through sympyoms, then I will also take .5mg of Clonazepam. I can only do that on nights when I don't have to be up early the next morning, because that REALLY knocks me out!!! (Sometimes that can be a blessing. When my symptoms get on a roll, I feel like this little green guy jumping up and down on the right of my screen here - I can't stop moving!)

     
    Old 05-22-2006, 11:39 PM   #5
    linkin01
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    Re: Neurontin work for anyone else?

    Quote:
    Originally Posted by pjc46
    Mike,

    I take 300mg. every 6 hours, combined with one Carbidopa/Levodopa 25/100 for the 3 daytime Neurontin doses and one Carbidopa/Levodopa 50/200 SA with the bedtime Neurontin dose.

    This seems to work for me most of the time. However, if I'm having a really bad night with break-through sympyoms, then I will also take .5mg of Clonazepam. I can only do that on nights when I don't have to be up early the next morning, because that REALLY knocks me out!!! (Sometimes that can be a blessing. When my symptoms get on a roll, I feel like this little green guy jumping up and down on the right of my screen here - I can't stop moving!)
    Do you wake up in the middle of the night to take the fourth Neuronin dose? I do. (I set an alarm for the middle of the night. It's good to go to the bathroom and take my arthritis medication too.)

    I've noticed the hypnotic sleep meds (I assume that's what Clonazepam is) help my restless legs too, when I was having them---

    But my restless legs are completely utterly gone now. The neurontin is a miracle. It also helps my anxiety and fibromyalgia.

    Mike

     
    Old 07-14-2006, 09:10 AM   #6
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    Re: Neurontin work for anyone else?

    I started with neurontin (gabapentin is the generic) maybe six months ago, on 100mg at bedtime. Then I had to raise it to 300mg, and now I am on 1200 mg at bedtime. My doctor did some research before she let me go that high, but she did let me. At bedtime I also take one 25mg tablet of benedryl (generic TOC sleep medication: dyphenhydramine, I think.) Each one by itself does not work but together I get about six hours sleep. It's not enough but it keeps me going.

    I twitch during the day too, especially if I get upset, but my job is very left-brained and that seems to help with the RLS. I get sensations of pain and creepy crawlies, but mostly what I get is jerks and the muscles in my right thigh tense up all by themselves, almost rhythmically; if I lower my meds my entire body will jerk every four seconds. If I weren't on these drugs I'd have to shoot myself, really. When this was getting bad and I hadn't found anything that worked, I went without sleep for about three weeks, and I was truly crazy at that point. Fortunately I become a comedian when I'm that out of whack, and not a serial killer.

    My doctor become convinced that RLS was a symptom of low adrenal function and started me on an IV/acupuncture adrenal treatment. The first one, I went home and was totally relaxed, not a hint of a jerk, for six entire hours; the second one, she raised the amount of adrenal in the injection, and it went the other way and I went home and jerked uncontrollably for a day and a half. I tried just one more treatment, and nothing at all happened. I'm inclined to think the reason why the first treatment worked was because of the B vitamins in the IV, and I may try megadoses of B vitamins for a while. I may also try going completely off gluten for a few weeks (gluten free diets are hard to stick to.)

    One doc told me way back to try folic acid but she said you could not get enough orally and had to get it by injection for a while to get your levels up. I did one injection, it was really painful, and I didn't go back for more because I saw no effects. I maybe should have gone back but I didn't.

    I'm just about ready to try one of the dopamine agonists; I haven't wanted to do those drugs but I'm getting almost desperate to get this fixed. I had hoped to find a natural way to overcome it without heavy pharmaceuticals.

    Dither

     
    Old 07-27-2006, 06:37 PM   #7
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    Re: Neurontin work for anyone else?

    Thanks for the tips on the B12 etc. Mike. I was on Neurontin and several other anti seisure medications before for my fibromyalgia. It didn't help the fibro nor my RLS (of course I didn't know I had RLS at the time). I hated being on it because it made some of the good signals to my brain get messed up too...I would forget all the time what I was talking about right in the middle of a sentence and it would make me look like a moron at work etc.I think it was 3700 mg a day I was taking (3 pills 3x dialy) which I thought was the max one could take. I had Weight Loss Surgery a few years ago and do not absorb everything now because of it. I am anemic (which can also cause RLS to be worse if you are not getting enough iron) and I beleive B12 deficient. I have gotten B12 shots a couple times and they helped a lot. I thought I was not absorbing the B12 w/o the shots. I tried the pills & the sublingual liquid but it didn't seem to be making my muscle pain any better. It was like 1,000% more than what a normal person needs so maybe I was taking more than I needed and it was making it worse. Maybe I will try taking less more often. I take Lunesta now and if I can take it before the RLS syndrome starts it works really well.

     
    Old 07-27-2006, 06:43 PM   #8
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    Re: Neurontin work for anyone else?

    Quote:
    Originally Posted by MandyPandy
    Thanks for the tips on the B12 etc. Mike. I was on Neurontin and several other anti seisure medications before for my fibromyalgia. It didn't help the fibro nor my RLS (of course I didn't know I had RLS at the time). I hated being on it because it made some of the good signals to my brain get messed up too...I would forget all the time what I was talking about right in the middle of a sentence and it would make me look like a moron at work etc.I think it was 3700 mg a day I was taking (3 pills 3x dialy) which I thought was the max one could take. I had Weight Loss Surgery a few years ago and do not absorb everything now because of it. I am anemic (which can also cause RLS to be worse if you are not getting enough iron) and I beleive B12 deficient. I have gotten B12 shots a couple times and they helped a lot. I thought I was not absorbing the B12 w/o the shots. I tried the pills & the sublingual liquid but it didn't seem to be making my muscle pain any better. It was like 1,000% more than what a normal person needs so maybe I was taking more than I needed and it was making it worse. Maybe I will try taking less more often. I take Lunesta now and if I can take it before the RLS syndrome starts it works really well.

    I seem to do very well on 250-500 mcg oral B12. I even use a time-release form. I haven't tried the shots. I've seen that they sometimes inject 3000-5000mcg. If I need so little in oral form, and I get pretty bad side effects from taking too much oral (like 1000mcg in one dose), I can't imagine what a 5000 mcg shot would do to me. Probably cause hallucinations.

    Mike

     
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