Restless Legs Syndrome (RLS) Discussion Board

Veldon, I was just wishing the same thing. I wish, wish, wish I was normal. WED interferes with so much. I'm in the mountains right now with my daughter and grandson -- coming up here was hideous. But the next day and night, with lots of distractions, and today and tonight, with even more distractio...

I've gotten the sense that some (many?) of us are on machines at night -- CPAP, APAP, etc. I even use extra oxygen at night. I just hope a lot of research is really being done. Not just: well, try this pill. I was thinking I want to have lunch with the reporter I was telling you about -- he's so hel...

I think this is REALLY a stupid question. But, what's new. I live in Denver at 5,280 ft, am staying the week at 8,000. I know at least one member lives at 8,000. I took at six week trip to the sea-level South and WED hardly bothered me at all. It was easy to control with various methods. The day I g...

I needed desperately to stop taking Methadone--I would fall asleep driving, talking, etc. but it didn't help with WED. Some docs in our "behavioral health" dept put me on Suboxone. Actually, it worked fine. But they insisted on treating me like a drug addict -- counting out pills for me, m...

I used to keep a "sleep diary," looking for those coincidences, some pattern, anything that made sense. After years and years, I gave up. The closest I've come to a theory is this: pain sets my WED off. I have arthritis and I know that you just have to keep moving or it gets worse. Two thi...

I lay on the floor, on my stomach. Have no idea why that works.

It's not reading, but when I know I'm about to get RLS, I lay on the floor, turn on Netflix and watch an engrossing detective movie.

Thank you for all that. PLEASE keep us posted about how it's going. Sounds promising. Just in general, I'd like to be on as few drugs as possible; I'm sure we all would. Especially this summer, as I hung out with old friends, I could see some of the holes in my memory. ("Remember when we came a...

Ann, are you taking it now? I've forgotten what you said. If one is taking Mirapex, do you just stop that and start the patch? I looked it up and don't see any connection to Neurontin.
Anyone have experience with it?

Ann: Of course you like Luther!! I'm on the second season. I hope it doesn't end. Fascinating. On the Neupro patch thing: I asked my doc about it and he wasn't excited, said it was expensive. And I think we've talked about this before, but I'm worried that it is close to Neurontin, which I'm allergi...

It seems like every time I cut back on Mirapex, then start it up again, I do fine for a while. That's where I am right now -- thank goodness. I'm finding diversions that will put off my RLS in the late afternoon -- so interesting. I lay down on the floor on my stomach (that always helps a little) an...

Often, drugs are prescribed and then forgotten (by the docs), I think. I remember Klonopin was the first drug of choice for a while (after the Sinemet disaster). Just a tiny pill, etc. Way after I thought it did no good, I would ask "should I still take that? What if I just stopped it? What doe...

Beth, I pretty much just backed off, and am now taking pram at a lower dose. My intent was to have a "drug holiday." I wish I had been reading Jakesmom before I tried it and I think I would have gone cold turkey. Instead, I reduced the amount I took and didn't sleep for a couple of nights....

With your determination, good support from people who understand, and a doctor who is really good and listens and learns -- you're going to be okay. When I first read your post, I couldn't imagine a way out. The doses scared me to pieces. You obviously have a good brain and a job where people trust ...

The next time I go on and on about this, will Ann or another moderator please tell me just to look next door? This afternoon, I read the whole saga of Jake's Mom....OMG, that poor woman. And she did it. I really do think many of us become experts in withdrawing from drugs. I learned a lot from that ...

I love this place. I'm reminded of what others go through -- and, unbelievably, hear the hope these people still have. It helps so much. Nobody else understands. When I went on a recent trip, when I stayed for a week with 11 old friends I worked with in the '70s, I wasn't sure what to do. At first I...