Restless Legs Syndrome (RLS) Discussion Board

For those who have been on it, how well does it seem to work?

Emily-
I've been on neurontin for about 2 years now. I have slowly gone up over the years from 100 mg at night to my current whopping dose of 1200 mg before bed. I have definitely had the experience of needing more and more of this drug to combat my symptoms. The good news is that with each dosage increase, I haven't had an increase in side-effects. I haven't noticed any weight gain but the mental changes are definitely present. After my dose at night-I get very lethargic, slightly depressed and my thought process slows way down. Having said that, it has helped tremendously with my RLS (though I now have added narcotics to my regimen) and it has had the added benefit of preventing some of my migraines. I have had absolutely no augmentation from this drug like I had with requip and mirapex. I think the trials with neurontin in RLS have suggested that 1300 to 1800 mg/day is needed to treat RLS but I know alot of people use less. My neurologist said he trys to get all his rls patients up to at least 400 mg per day. Not sure if this helps.

I took neurontin for a little over a year. I was taking 300 mg 4X a day. The side effects were what prompted me to stop taking it. I gained at least 20 pounds. I was very sleepy during the day, foggy brained, unusually thirsty, and I have had two doctors since tell me they don't like the drug. They said too many doctors prescribe it like candy and that the side effects are bad. The doctor that prescribed it for me had no problems with giving me an ample supply and then some. I have not been able to lose all the weight I gained while on neurontin but I feel much better now that I am not taking it anymore. I did have to go through a withdrawal period where I felt lousy. That helped lose a little weight. Mostly I felt like I had the stomach flu. No appetite, tired, stomach upset and diarrehea (sp?). This lasted for about two weeks.

If there is a good side to this medication I would say it would be that it did help with the pain associated with the RLS although it was not working as well when I quit taking it.

Best of luck to you.

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When I took neurontin it stopped the need to move sensations as well as the pain.

Hmmm...

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Neurontin helps a lot. I was on 1800 mg, but it was awful for my brain. Couldn't think properly, terrible brainfog during the day. I couldn't stand it anymore and tapered down to 1200 mg, which really was quite difficult to do. My head feels much better, but of course RLS is worse.
I put on a lot of weight, 6 kg's (don't know the American equivalent).

I would give it a good try if I were you, because you never know if it will be ypur miracle drug.

Corrie

Same thing for me, Jenne.

I forgot to say one thing: Neurontin reaches it's full potential after 2 1/2 - 3 weeks, so pls don't say after one pill that it doesn't work.

Corrie

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Emily,

you could try and ask your neuro for another pill in the same anti-convulsant group, which doesn't have weightgain as a side-effect. Like Topamax, which is known for weightloss, but I don't know if it works as well as Neurontin. Maybe somebody else knows.


Corrie

[quote="Jenne1950"][b][i] What may work wonderfully for one of us may be like a miracle for others.

Would someone tell me where my brain is? I seem to have lost it again! I meant of course what may NOT work for one may be a miracle for others!