. I have had RLS for over 12 years. In the beginning, I could walk around the house or elevate my legs on the couch and the movements would stop and I could sleep. Now I take Ropinirole (Requip),Carbidopa levodopa, and clonazepam. I suffer beyond belief but have found some relief in the Relaxis pad. I have had it for some time but was never consistent in using it. I have decided to give it another try and it seems to be helping me especially during the day. Going to a movie has always been a miserable event but today when the attack started, the pain went away after a few minutes. I usually sleep better after mild exercise which is walking about 2 miles. I have tried acupuncture and am considering hypnosis. Has anyone tried that? Also, it helps to listen to music with earbuds at bedtime to relax and Grateful Dead music does help. The meds I take mess with my mind and I have such a hard time thinking of the things I need to say or do. I have reduced the drugs due to the Relaxis pad which is a plus. I welcome your thoughts.
Tried most everything: . I have had... - Restless Legs Syn...
Tried most everything
Hi I see you are taking 2 dopamine meds at once which is going to send you into augmentation fast! The Carbidopa Levodopa is no longer recommended as it caused augmentation quicker than the other dopamine meds. What dose of Ropinerole are you taking? Are you on any other meds for anything else? Will wait for your reply before going any further but I would put my money on augmentation x
I agree with pippins - it sounds like the dopamine agonists you are taking (ropinerole and carbedopa) are causing augmentation. Augmentation causes your symptoms to be much worse.
Unfortunately the only cure for augmentation is to come off the dopamine agonists which is a very unpleasant process and then you have the difficulty of finding an alternative treatment.
Often symptoms will return to pretty much the level they were at prior to starting on the dopamine agonist once the withdrawal process is complete. If you are finding the relaxis pad helpful now, then it might be that you could use it in its own if you came off the dopamine agonists.
At the risk of sounding like an evangelist, I recommend once again the pamphlet for healthcare providers from the RLS Foundation. It suggests tapering the dopamine agonists while beginning the alpha-2-delta ligando, eg gabapentin.
Kare, carry on evangelising.
My understanding is that one should attempt to come off the DA without adding another drug specific to RLS, but possibly with the help of an opiate, until the system is free. This is in order to know what your baseline is.
Otherwise, you can never know.
Then try other drugs. This way you will clearly know what is working and what is not, and your brain cells have a chance to repair themselves following the DA slaughter.
Thoughts?
Good advice, unfortunately too late. I started gabapentin in incremental doses 5 days ago, now at 200 mg and hardly sleeping at all some nights, always with codeine. This disease is awful. I may need to seek help at one of the sleep centers recommended by RLS Foundation. My dear friend PA has tried her best, and her best is very good. But this thing is big! And complex.
Thanks for your response, P.
Yes, it is much more complicated than was thought at first, and a little different for each of us.
I think a recommended Sleep Centre is a great idea. If you can do it, don't hesitate another day.
This disease eats up our lives, don't let it eat more than it already has.
You'll be better, for sure, with the right help.
Good luck.
Is that a sleep app that you listen to while sleeping?
Awesome news about the movie episode! I hope that continues! Way to go with the Relaxis pad, too!
I listen to music at night as well. Mine is whole tones healing frequencies and calming music at 432 hz. I've never heard of the Grateful Dead (sounds wonderful....)
Has anyone tried Melatonin Supplements?
Tried EVERYTHING, and now...
