Day 14 without Ropinirole, does it ever get better?

[Hazuki]

Hi all,

Thought I'd leave a bit of an update here for others to see who are going through this.

Day 1: The first night and the following day were not as bad as I expected, the RLS was maybe 5 out of 10, plenty enough to stop me from sleeping but it didn't spread to my arms and chest like it had been doing during the weening off period. Vaped prescription cannabis and took a small dose of kratom to get to sleep. Could only sleep for 30 minutes to an hour at a time but at least I could just vape some more cannabis and then get another 30mins to an hour - tiring, pretty crappy, but there were no nasty surprises. RLS: 5/10

Day 2 - 5: Worse RLS symptoms during the day and the night, mostly awake through the night then sleeping for a few hours from about 05:00 to 12:00. RLS: 7/10

Days 6-14: Low level RLS at all times, kratom relieves it for about 4 hours at a time. At night the RLS is worse but the cannabis/kratom combo helps me get to sleep for about 3 or 4 hours at a time, so a big improvement. RLS 4/10

However, the improvement seems to have stopped, how have others experienced this period of ropinirole withdrawal? I would love to know!

I'm taking Gabapentin each day, 300mg morning, 400mg at about 18:00 and then another 400mg at about midnight.

Others with experience, do you think this is normal, will it continue to get better or is this looking not so great? I would love to be able to go to bed and go to sleep without all this life-ruining hassle!

Thank you!!!

[grassgree]

I don't think it's out of the ordinary. I only took ropinirole for two months, but it took six weeks to return to normal after stopping. Things began to slowly improve after about three weeks.

[Joolsg]

That's perfectly normal. It can take several months for the withdrawal symptoms from Ropinirole to settle. The D1 dopamine receptors have been overstimulated and need time to settle and repair.You may want to change the timing of the gabapentin. Now you're off Ropinirole, the RLS will revert to follow the dopamine cycle. When dopamine is lowest ( 6 or 7 pm until 6am) the RLS will be at its worst.

So take 500mg around 7 or 8pm and 600mg 2 hours later. You can adjust the timing but take it in 2 doses , 2 hours apart. That might give you better evening and night time coverage.

If it doesn't settle within a month, you still have room to increase the gabapentin. The average dose is 1500-1800mg but some need higher.

[Hazuki in reply to Joolsg]

Thank you, I will try this and see how it goes, I wish it was a bit easier and quicker to get off this awful drug

[Joolsg in reply to Hazuki]

Sadly, many doctors are still prescribing it and increasing the dose instead of recognising augmentation and helping patients get off it safely.Stay strong, it should settle and gabapentin should hopefully cover your symptoms.

Let us know how it goes.

[Hazuki in reply to Joolsg]

Thanks for your encouragement, because the whole process can only really be described as 'hell' or 'torture' and because it lasts so long you can't help but feel sometimes that :

"This works for everyone but maybe it won't work for me"

I guess you have to silence that voice!

Thanks again

[Fingerandus]

hi dear i have had RLS for years and have been taking pramipexole for the best part of ten years the best i have ever done withdrawing from pramipexole is 26 days then i had to start back on them my nights were horrendous i also take 150mg of pregabalin but only sleep about 4 hrs a night because i also have peripheral neuropathy so my feet are pins and needles. it doesnt get any better i only take a very small dose of sifrol. but am now doing no sugar and low carb diet my RLS has improved im 3 weeks on this way of eating.....