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Hot water, Tegretol, gabapentin

Posted: Mon Dec 18, 2017 8:58 pm
by Jimgpe
Hello to all! New to the site, but more than 40 years of symptoms.

I wish I could say I have suggestions for non-drug solutions. I tried chiropractic, exercise, magnesium, homeopathic solutions, stretching, etc. etc. The only non-drug treatment that gave me any relief was a hot shower on my lower back. That would buy me 1/2 hour of relief, and if I could get to sleep that fast I was good, but if not, I was a night walker. Long plane rides were torture.

Tegritol worked for a while, then I switched to Ropinerol. Ropinerol worked for a while, then it didn't, and my symptoms got a lot worse. It is called augmentation, I came to find out.

I'm now on Gabapentin (since July of this year), and my life is good again! It has eliminated 98% of my symptoms. There are some minor side effects, including drowsiness and blurred vision until my daily dose wears off, but the sleep I now get is WORTH IT.

(If you have any experience with Gabapentin and have come to find out it only works for a few years, PLEASE don't tell me. I'd like to enjoy this relief for as long as possible, and if trouble is on the horizon I'd prefer it just sneaks up on me all unannounced!)

Jim

Re: New to Site; hello to all

Posted: Mon Dec 18, 2017 9:58 pm
by Rustsmith
Jim, welcome to the board.

You are one of the fortunate ones if gabapentin is helping with your movement issues. I recently saw a comment that it helps about 60% of us.

Although it doesn't help with my movement issues, I have been using it for a number of years as a sleep aid. It is the only thing that I have found that allows me to fall asleep "normally". All the rest of the prescription sleeping pills that my doctors had me try either left me wide awake but staggering around the house or else they did nothing.

And like you, I found that a hot shower works to quiet my legs for a while. I started out with the water on my lower back, but now I find it works better if it hits the lower part of the back of my head and my neck. I also find that when I am having problems, I will wake up with movement issues about an hour after I fall asleep. In those cases, I soak in the tub with just enough hot water to cover my calves. That usually does the trick and allows me to get back to sleep without having to go out and wander the neighborhood.

Re: Hot water, Tegretol, gabapentin

Posted: Mon Dec 25, 2017 6:54 pm
by badnights
Hi Jim
I've moved your post into a new Topic so that you can get more-targeted replies.

I'm glad you got off the ropinirole; it can be brutal to do.

I'm glad the gabapentin is working! It does work for a lot of people, though we don't get many of them posting here, probably because when it works, it works well. A few people have had success with carbamazepine/Tegretol too - it's similar to gabapentin, and both are commonly used for nerve pain.

I don't find a hot shower is enough, although it can help - my go-to is usually a blazing hot bath. Sometimes I wonder if I might not accidentally cook myself someday (just kidding! you know - put a frog in boiling water and he'll jump out, but put him in cold water and heat it gradually and he'll stay in and get cooked) but it needs to be that hot to overcome the WED/RLS sensations.