Restless Legs Syndrome (RLS) Discussion Board

Beth, I am sorry for the loss of your dad. I hope your memories bring you some comfort. ((Hugs)). It's a hard thing to lose a parent. That's scary about your mom, too. You're having a rough time. It's very kind of you to be checking in on us. The sleep dr prescribed 10mg oxycodone three times daily ...

Ann, thanks for the info about Dr. B. I just spent about three hours researching LDN and, not only do I think it would make the RLS worse, I have little confidence that it'll help my pain fast enough. And, despite being told there were no side effects, I waded through posts of people experiencing in...

For anyone following this post -I saw the sleep doctor on Wednesday. She's brilliant about RLS! She's taking me off the ropinirole and suggesting trying the following in this order: 1. Opiates (but at a higher dose and different frequency than what I'm taking for the back pain) 2. Methadone 3. Horiz...

Grrr. The universe now owes me a a lot more than chocolate and flowers 'cause another post vanished. Legs, I agree on the "all or nothing". I asked the sleep do tor about doing a total reset - drop the ropinirole, oxycodone, and clonazepam. She said "one thing at a time." And, if...

I'm so glad I can deliver a little laughter to someone!

Madison, Wisconsin: Dr. Mihaela Bazalakova, UWHealth Sleep Clinic, is a neurologist who specializes in sleep disorders. She's a great doctor for RLS sufferers.

Hi, Prim, I'm a relatively new member so didn't know you before. Hi! I understand about the MS thing 'cause me, too. My right leg fell asleep months ago (not paralyzed but still hard to move because I can't really sense where it is or feel it). But, I can still feel the creepy crawly biting RLS sens...

Holland, how long were you on the LDN and what was your dose? Thank you for the suggestion about how to keep stuff out of the ether. I just figured it was someone's way of telling me to Get. To. The. Point.

I agree, too. I will caution against keeping too detailed a log for too long about medical stuff, though because it can make you focus on it too much. I only kept my sleep log so detailed because I felt my neurologist was dismissing me. I don't think that anymore. I think he just didn't know how sev...

Typed out a carefully written post and it got eaten so trying again: Saw brilliant sleep doctor on Wednesday - she totally gets RLS! Tapering me off .75mg ropinerole by .25mg a week. Started taper Wednesday night. RLS is skyrocketing. Managing with oxycodone. I want to use the smallest amount of oxy...

Beth, I was on sinimet in the mid 1990's. My current neuro put me on .125mg pramipexole in mid-August of this year. Initially it stopped the RLS completely. At about 22 days the RLS started waking me rlat 4-5am and then the pramipexole stopped working at all. He increased the dose to .375mg on 9/14 ...

I thought I'd read that iron wasn't the problem in familial RLS but I'm beyond knowing anything these days. I did send an email to my neurologist last night pointing out the decline and asking if I ought to try supplementing. Since I know he's learning about RLS (yay him!) I think I'll send him info...

Holland, thanks for the suggestion about asking the pharmacist for just seven patches. I'm not sure how that works with Medicare but it's a great idea! Ann, in August, 22015 it was 115. 0n September 20, 2016 it was 90. I do have familial RLS so would iron make a difference? Got a feeling I'm not sle...

Thank you, Beth and Steve. I'm going to ask for a reset at my December appointment and stay the course until then. I think. It depends on how bad things get with the ropinirole. The neurologist had suggested before the ropinirole stopped working that I add .25mg in the day. My sleep deprived brain t...

I hope that I haven't come across as unappreciative of all the support you all gave me about the nightmares. I lost this thread and have been really struggling with my vision so I've not been able to participate. Thank you for all your words of support! The nightmares are gone. Yay! The ropinirole i...