Restless Legs Syndrome (RLS) Discussion Board

I am a very new person on here but not new to RLS (17 years). Finally had enough and told my Neurologists I was suffering from augmentation even though he said I wasn't. I wanted off of the Requip 12 mg XL a day and I wanted to see someone that had more than an occasional RLS patient. I started this on Monday of this week and Wednesday I reduced my Requip to 8 mg xl daily and added 75 mg Lyrica. I must say that Wednesday and Thursday nights were HELL! Maybe 2 hours sleep each night and no quality. It is Friday night and looks like it will be the same. On Monday I also did an online request to the WED speciality clinic at Mayo and Wednesday morning received a phone call from a very nice lady at the Mayo Clinic telling me they had received my request for an appointment and walked me through the steps to make it happen. My physician was to call a special number to refer me. I sent my physician all the info Wednesday and around noon Thursday my physician sent me a message he had called and sent my records to the Mayo Clinic and they would review my info and would then contact me if they felt it was appropriate for me to see a physician there. Less than 2 hours after receiving the message from my physician that he had gone through the process I received another call from the MAyo Sleep Center wanting to schedule my appointment. I was extremely happy to get that call and I now have an appointment the first week of December wit see Dr. Michael Silber. If anyone has any experience with the Mayo RLS Clinic and/or with Dr. Silber pleas share. During these nights from HELL and coming off of Requip I focus on my appointment and hope that something will be found to make this better.

I hope someone here has seen him. I recall a few people over the years saying they have seem him, but I don't know if they still post here.

But, I honestly am not sure you should be reducing the ropinerole on your own. At your higher dose, you definitely need to go slow. As important, this is often very difficult and most people cannot do it without additional drugs to help.

I actually am not reducing my Requip on my own. My Neurologist is the one who prescribed the 8mg for me to switch to. I really thought that going from 12 to 8 was too drastic of a change. It hasn't been fun.

I can imagine that it has not been fun at all! I am so sorry you're going through this.

That name sounded familiar so I did a search on the board for "Silber" and came up with several posts recommending him! Here is a video of him discussing treatment options for RLS/WED:
https://www.youtube.com/watch?v=HRuX3cWUOnE

It sounds like you will be in good hands!

I just watched the video, it's excellent and I recommend it.

I have no experience with the Mayo Clinic but my sleep doctor where I live recommended two hospitals when my RLS became out of control and it was Johns Hopkins or Mayo Clinic. I ended up going to Johns Hopkins but he highly recommended either. The two best in the country according my sleep doctor here and he is a great doctor himself. I can't remember the name of the doctor at Mayo but no doubt it was him. I think you have picked an excellent doctor.

Silber co-authored the algorithm on WED/RLS treatment. He's got a good reputation, though I don't know of anyone who has personally seen him. He certainly is one of the big names in WED/RLS research.