Restless Legs Syndrome (RLS) Discussion Board

I am new to this forum and so happy to have found this site. I have had RLS at least 10 years, but lately I've required more ropinerol to control the symptoms. My doctor put me on Neupro but the side effects (nausea, headache and general malaise) where horrible so I quit and have been taking more of the ropinerol. My symptoms have been starting earlier, are much more intense and sometimes during the day. I feel like a need a doc to help me get off the ropinerol but my neurologist doesn't seem to know much about RLS. I have Kaiser but can't find a doc that specializes in RLS so I'd like to find a consultant outside Kaiser in the SF Bay Area. Anyone know someone?

Your symptoms sound a great deal like augmentation, which means that you need to get off of the ropinerole very soon.

The Stanford Sleep Center is one of the RLS Foundation Quality Care Centers, so that is your best bet. They can help you with your augmentation and get you onto a new med that is not a dopamine agonist (ropinerole, Neupro or pramipexole). But be prepared, this next med is most likely going to be an opioid.

I would suggest that you read up on our Augmentation Forum. See how others have coped coming off a dopamine agonist i.e. ropinerole. As you read and learn you will be in a better position to understand and to ask questions when you do see a doctor.

There are also a lot of detailed stories in the Prescription forum, dating from before the creation of the Augmentation forum. Try searching for "augmentation".

Also, arming yourself with information will help you in all your dealings with doctors, because the more you know, the better you can communicate with them. The Foundation publishes a very good guide, called RLS Medical Bulletin for Healthcare Professionals. In the page linked to my signature, there are instructions on how to get it. There are also I think 4 other brochures that deal with augmentation.