Restless Legs Syndrome (RLS) Discussion Board

I’m a new member and would like to share my story. I’m 68 years old and I have had RLS for for close to 20 years. I started out on Mirapex and was on it for about 10 years at different dosages. I started augmentation and went off it cold turkey. It took me close to a week to get off it with several nights of no sleep other than what I could get sitting up with my feet firmly on the floor. I started ropinorole after that and started augmentation after about 4 years. I was up to 10 mg daily for a couple years. I have been slowly tapering by 1/2 to 1/4 mg every two weeks. I’m down to 3 mg now after 4 months of tapering off. I started gabapentin a month ago. I had side effects for about a week which were dizziness and sleepiness. I get a good 7 to 8 hours of sleep every night now which is great! I’m still having RLS symptoms but it’s seems to be day 2 and 3 after lowering my dose that are the worst. I’m not sure what will happen when I get off this ropinorole. I’m hoping to use gabapentin for now and maybe nothing after that. Dopi e agonists are horrible drugs. I would never recommend that anyone take it.

You should ask your doctor to run blood tests to check your iron levels, specifically ferritin, which must be specially requested. For some people, either taking an oral iron supplement for several months or getting an IV iron infusion is enough to manage their RLS although that is not common for those who have been through augmentation. But it is worth a try. If you can get your doctor to run the tests, don't accept a report of "normal". For those of us with RLS, ferritin levels should be over 100 whereas labs will report anything over 20 as acceptable.

As for what happens after you get off of ropinerole if gabapentin isn't enough, the answer for most of us has been a low dose opioid for the rest of our lives.

So sorry you went through that. It still frustrates me tremendously that doctors do NOT understand what to use to treat us.

So happy you got some sleep with the gabapentin. Rustsmith had great advice. Keep us informed as you go through your journey and ask us anything - we're here to help.