How can I stop my legs please

[Bayhams6]

Iv’e had RLS for 15 years or so, no idea what caused it. Was given Ropinerole slow release 2 mg twice a day, which worked for a long time, then augmentation kicked in, doctor suggested coming off the Ropinerole and going on to Gabapentin 3 100g twice a day slowly reducing the Ropinerole I managed to get down to 1mg a day. My RLS is out of control and I’m going mental? I dread each night, walking around on a cold floor, this will go on for hours. Spoke to my doctor who freely accepts that he knows little about RLS - he said “ I’ll be guided by you” Where do I find a doctor who does understand RLS please I live in West Sussex Please please help me thank you.

[SueJohnson]

A month ago you were on 2 mg. If you reduced on the schedule I gave you it would take 8 weeks to get down to 1 mg. You are reducing at twice that rate so it is no wonder you are suffering. Go back up to 1.25 mg and let your symptoms settle before reducing further.

[Bayhams6 in reply to SueJohnson]

Sue I stopped taking ropinerole alltogether on 14th October, obviously not the right thing to do, I always think I know better than anyone else, obviously not - sorry!

What do I do now please?

[SueJohnson in reply to Bayhams6]

Go back up to an amount that stops your suffering and let your symptoms settle and then start the reduction at .25 mg every 2 weeks.

[SueJohnson]

You are not far from London. Dr Novraj Dhanjal National Hospital for Neurology and Neurosurgery - ask him to ask your GP to prescribe buprenorphine to help you come off ropinirole. He was recommended by Ephemera who you can message if you want to find out her experience with him.

[SiannaRae]

I went off ropinirole and on 700mg Gabapentin and it works for me. I take 100mg at noon; another 100 at 4 pm; 200 mg at 8:00 pm and 300 mg when I go to bed. I got excellent doctors care, by video conference, at the Restless Leg Center at the Pittsburg university medical center. I realize you are in the UK. Check the website at rls.org for more information about treatment centers. I think there is one in Austria an another in Switzerland. Maybe you could video with a RLS specialist there.

[Bayhams6 in reply to SiannaRae]

Thank you Sienna Rae x