Restless Legs Syndrome (RLS) Discussion Board

I am starting the process of weaning off 2 mg extended release ropinirole and an additional 1 mg of rescue ropinirole for break through symptoms. I have been on ropinirole for 10 years and my Quality Care Center Doctor said I have refractory RLS. My Quality Care Center Doctor has advised me to cut back 0.25 mg ropinirole every 2 weeks. How much sleep should I expect to get? Will I experience RLS symptoms all day long? If I am having break through symptoms, will they ease up towards the end of the 2 week weaning period?

Well sounds like you have a knowledgable doctor on your side during this weaning period, which is a blessing in itself....I recently went through the "dopamine agonist" weaning period and it was one of the worse experiences in my life. If you surf through the different posts on this board you will find that everyone that has quit with the dopamine agonist have tried different methods. If you read back through my recent post under "Reversing Restless Leg Syndrome" it will describe my journey up to this point, the withdrawals and effects won't ever be the same for everyone. I'm still having what I believe to be DAWS..dopamine agonist withdrawal syndrome...but I was taking 12-MG of Requip daily at one point, just read back through my posts. I'm no expert by any means but I'm willing to share my experience(s) with you and answer any questions that I can...stopping the Requip is hard but possible..good luck!!

Thank you Michael! I will do that.

I read your posts-extremely helpful. So it is going to get real bad but there is a huge light at the end of the journey. Just wondering what you did those long sleepless nights? Pace the floor? I know those are coming for me and need some ideas.
Again thank you so much!
Lisa

Those sleepless nights were terrible and involved lots of pacing, standing/sitting at the island in my kitchen surfing the internet, just desperately searching for any information about RLS. I found coffee to help me during the wee hours of the night/morning which seemed kind of strange since studies say coffee could worsen RLS symptoms, I found that it actually helped mine during that period. I tapered the Requip at a faster pace than most because thats just the way I do things, I can't quit things slowly... so just as long as you follow your doctors recommendations you should be fine. Once you taper down to 0.0 Requip you probably won't get any sleep the first 48 hours but after the first 48 you should start getting a couple hours of fragmented sleep. When you make it past the 5th day things should start improving drastically, or at least it did for me. Just find things to do that will keep your mind busy and baths (hot and cold) helped me a lot . Also, I found some cold therapy Gel at WALMART called "Hempvana Cold As Ice Pain Relief" that helped...and I found that smoking a little medical Marijuana helped during this period...I was willing to try about anything to keep from falling back to taking Requip ever again. It will be hard but if you put your mind to it and stick with it you can do it...believe me it will be well worth it in the end..Take care, stay positive and just keep marching forward...You can do it...

Hi. I just read your post and I am also weaning off ropinirole as we speak. I was on 1.75mg and am currently down to .50mg at night. I tried tramadol to help with the process but it gave me insomnia. I hope it gives you some relief. The .50 ropinirole is giving me about 3 hours of sleep at night. I tried some THC/CBD/CBN sleep minis last night and they did not help. I think it is a trial and error process. I do a lot of reading of posts on this discussion board in an attempt to find a solution that works for me. You asked if you would have symptoms all day long. I guess it depends on when you symptoms started before. I try to keep myself busy for most of the day and have only mild symptoms. It is the evening that is the worst. Good luck with your process. Hopefully you will be one of those that tramadol helps with the dosage reductions.

As a sufferer of 40ish years, I eventually ended up on 5mg ropinerole daily, symptoms still at 24/7. Only 2 or 3 hours sleep and working full time. I tried 3 times to wean myself off the ropinerole without success and so decided to do it my way.
My way, was very very slowly. I spent ten months weaning down. Fortunately, although my GP knew very little, he was willing to be led by me and was more that willing to discuss the document linked in my signature. At my request my doctor was willing to prescribe Cocodamol 30/500 for support as my ropinerole was reduced. It so happened that I was being prescribed Pregabalin for neuropathy which has the benefit of helping with RLS, and so this was increased as the ropinerole was reduced further.
Ten months it took and I managed it with ease. I had none of the awful withdrawals that are almost inevitable. Each pill was cut into pieces that got smaller and smaller as the ropinerole dosage got lower.
The day I took my last pill.... I'll never fotget my joy, my sense of achievement, and haven't looked back. Fortunately there have been no ill effects (that I am aware of) from the opioid/Cocodamol or the Pregabalin. I am sleeping 6 -7 hours each night. I can sit and watch tv. Today I travelled as a passenger in a car for 3 hours with no issue.
I wish well to anyone weaning off this drug and can only tell from experience what worked for me.