Help with RLS meds

[jaime77]

Hi all! Suffered with RLS for 20yrs + currently going through augmentation with ropinirol! What I’m asking is does anyone have any success stories taking cbd oil for RLS? And if so which product is it that you use? Thanks 😊

[Joolsg]

I don't think CBD oil will help at all.I used cannabis when going through Ropinirole withdrawal & it was the only thing that helped. It gave me 30 mins sleep after 4/5 days of zero sleep & 24/7 intense, all over RLS.

Hope you manage to get off Ropinirole. Go slowly- 0.25mg every 2 weeks & you may need an opioid to get through it.

[jaime77 in reply to Joolsg]

Thanks, I’m booked it the doctors in a couple of weeks, I’m going to push for a referral to a neurologist, I can’t carry on like this it’s driving me up the wall 🙈

[Joolsg in reply to jaime77]

Neurologists know nothing about RLS sadly. Some are still prescribing dopamine agonists even when augmentation has happened.I suggest you read all you can, print off all the information on augmentation and ask your GP to help you through withdrawal by prescribing tramadol for the 14 day's withdrawal period and pregabalin to start about a month before your last dose of Ropinirole.

Once off Ropinirole, the intensity will ease.

Where are you? There are a few neurologists who express an interest in RLS but it's worth finding out if they know how to get you safely through withdrawal and what others say about them.

Prof. Walker at Queen Square does phone consultations and seems to know about RLS BUT he still recommends the Neupro Patch after patients have augmented, which is NOT good practice. The Mayo algorithm makes it clear these drugs should not be prescribed.

[jaime77 in reply to Joolsg]

I’m in Preston, I really want to get off the ropinirol, I also take 300mg Gabapentin at night, I’m a bit worried taking tramadol will make me feel drowsy the day after

[Joolsg in reply to jaime77]

Prof. Walker will do phone consultations. I don't know anyone near Preston.Gabapentin won't help your RLS until you're completely off Ropinirole and then you'll need to increase the dose to between 1200 - 1800 taken at night , split into 600mg doses.

Tramadol is used during withdrawal and believe me, you won't be drowsy in the day because during withdrawal the RLS is horrendous- you'll need to book 2 weeks off and have someone with you at night.

[jaime77 in reply to Joolsg]

It all sounds horrendous 😫 I think it’s a bit pointless taking the Gabapentin at the minute

[SueJohnson in reply to jaime77]

Joolsg has good advice. To elaborate on what she said: Start gabapentin at least 3 weeks before you are off ropinirole since it takes at least 3 weeks to be effective, although it won't help much until you are off ropinirole for several weeks. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) or 100 mg gabapentin (50 mg pregabalin) if you are over the age of 65. Once you are off ropinirole for a few weeks, increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. By the way I always suggest you start with gabapentin rather pregabalin as it can be increased in smaller doses (100 mg). Once you find the correct dose you can switch to pregabalin if you like or stay on gabapentin. They are basically the same except that you don't need to divide the dose of pregabalin but can just take one dose (Divide the gabapentin dose by 6 to find the equivalent pregabalin amount).

[Hidden]

I had same. I've been taking Methadone with Ropinirole. First use 10 mg Methadone only for 6 weeks, maybe a bit more. No Ropinirole. Then restart Ropinirole at o.25 mg and gradulaly drop Methadone to 8mg. When not enough titrate up to 2mg Ropinirole. Sould take about one year. Then reset again, but only 4 weeks of Methadone only. Start cycle again.I'm on cycle 9. 8 years without RLS. No change in dosage, Mehadone at this low level is safe, only side essect is constipation.

[Joolsg in reply to Hidden]

Methadone has never been prescribed for RLS in the UK so not an option here yet. Hopefully that will change as we try to get UK doctors to learn about RLS and read the Mayo algorithm.