Opinions on Neurontin

[kahndee]

I'm new to the RLS drug scene. My MD wants to start me on neurontin. Does anyone have any opinions or experiences that will help me make this decision?

Thanks

[Rubyslipper]

I was on Neurontin for awhile and it was okay but I switched to Mirapex, lost 20 lbs and did a lot better. I know several people did not do well on it and others have. See what others say; if you give it a try, keep track of any side effects then discuss it with your doctor. Good luck!

[ViewsAskew]

My opinion is to follow the Mayo algorithm. It's the best place to start, because what they have you do is based on having the most probability of working based on the particular symptoms you have.

It's in the New To RLS section in the 'sticky' post "Start Here".

As an aside, Neurontin seems to work best for people with painful RLS, and less well for those with non-painful RLS. It is also not a first choice by the RLS researchers. That doesn't mean it doesn't work for some people - it does. But easier to start with the stuff on the algorithm that has a higher percentage of working. Less trial and error that way.

Ann

[Peperiobird]

Kahndee,

I was prescribed neurontin this year due to nerve damage from a severe hand injury two years ago. I'm supposed to take up to 900 mg/day. Frankly, I can't handle it.

It doesn't do anything for my RLS which I've had since I was a child. I had not heard of it being prescribed for RLS, but with its description, I did ponder whether it might help with that as well once I started taking it.

The neurontin only makes me sleepy, then wide awake after four hours. In the morning, I look and feel like I've been drugged. When my hand gets real bad, I will take 300 mg for the nerve damage pain; it does help relieve the discomfort of this. My coworkers even mention how tired I look the next day.

I thought I'd build up a tolerance to it so it wouldn't make me look and feel so drugged, but even after four months of taking it as prescribed, that never happened.

Hopefully anyone who takes Neurontin has insurance, as it is very spendy!

One thing that works for me is a bit of tonic water at bedtime (cheap, too!). I posted my personal results of taking that for RLS on another discussion here.

[Marvin]

After using tramadol for several years, I asked me doctor to let me try neuronton for my RLS. He wrote a prescription but I got no relief. Went back to tramadol, which I am still on. It's the only drug that has helped me. I take 50 mg each evening about 2 hours before bedtime. So far, I've seen no adverse side effects.

[georger]

I was on neurotin for a year and it does a good job for me on rls, however I gained weight......does anyone know how to deal with this successfully....got any advice?

So my neurologist put me on mirapex, which works also for my rls, but oddly gives me hotflashes in the night and nausea...I used it for about two months and had to stop.....not a single good night of rest.

Any one have advice on stopping nausea?

S

[ViewsAskew]

S, some people have successfully used ginger to combat the nausea. Others find that taking it with food helps. Per the weight gain, that is a problem that no one knows how to control, I don't think. It's a side effect of stimulating the neurotransmitters. I gained 50 pounds while on one drug and lost 35 while on another. Still, I'm heavier than I was when I started .

Most of us find that if we choose to take drugs, we have to find the right combo - what works for us. Some of us also still use things like vitamins, exercise and other lifestyle changes to help lower our need for drugs. And many people take two or even three or four drugs at a time - low doses of all, rather than high doses of one - and it helps reduce or minimize side effects.

If you have some time, read through old posts. Lots of good wisdom in them. You may pick up some good ideas. There is excellent info in the "sticky" threads in the New to RLS? section, too. Glad you're here. Hope to see you posting around in other threads.

Ann