My journey to date

[MountainWanderer]

I want to thank everyone who has taken the time and interest to advise me on dealing with my RLS. To update, I am fortunate to live near a clinic that deals with movement disorders and have begun seeing a specialist who treats RLS. She has prescribed gabapentin- didn’t work- and now has me on pregabalin (225 mg) which seems to be helping my daytime restlessness a little so far. She wanted to start this before tapering off the 2 mg ropinirole I am currently on, which I am very anxious to do. I’m beginning that tomorrow. I will do it slowly. .25 mg at a time. I was also able to get an iron infusion- just received the second of two parts.

She prescribed hydrocodone and Tylenol for airplane travel. That didn’t work and I had two unhappy flights.

I just wondered if anyone has any advice for me at this juncture? Thank you!

[SueJohnson]

Sounds like you are on the right path. The pregabalin won't help you much until you are off ropinirole and your symptoms have settled. You may know this but reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

[MountainWanderer in reply to SueJohnson]

Thank you, Sue. I am relying in equal parts on my doctor and on the advice from you and others on this forum.

[707twitcher]

I tried hydrocodone when I started my Pramipexole withdrawal. First 5mg, then 10, then 15. It worked at 15mg. After finding out about buprenorphine on this site I told my GP I wanted to try that. When she heard I was taking 15mg hydrocodone, and after reading up on the Mayo algorithm, she said the buprenorphine would be much better/safer so she gave me an Rx. That has worked for me from day 1. I'd strongly advise trying that. I'm surprised an RLS specialist wouldn't have mentioned it. The gabapentoid meds are not likely to work very well until you have the DAs out of your system. An RLS specialist should know that also.

[MountainWanderer in reply to 707twitcher]

Thank you so much for sharing your experience. I definitely need something better to get through 5 hour plane rides!

[707twitcher in reply to MountainWanderer]

Not just for plane rides - it will help with pramipexole withdrawal and might be a permanent alternative to DAs and gabapentoids if it works well for you.

[707twitcher]

read these and ask your doctor if she has:

mayoclinicproceedings.org/a...

calameo.com/sleeplabmagazin... - read the article starting on page 7

[MountainWanderer in reply to 707twitcher]

I will ask about buprenorphine next. Also thank you for the citations. I had not seen the article before.