RLS out of control

[Bayhams6]

Hi, I’m on 300 Gabapentin and 1mg Ropinerole twice a day, from mid afternoon I can’t sit still, can’t sleep, have started hurting myself, worried I’ll go too far.Magnesium spray used to help, but no longer. I would be grateful for any help and advice please!

[Madlegs1]

You are suffering from Augmentation.

Check it out on this site, and read up on most any of Sue Johnson's (except the ones where she thinks I am her personal court jester 🤪💚☘️) answers to many posts on this issue.

The first thing you need to do is get off the Ropinerol -- very slowly and by very small amounts.

It will be a long road, but you are not the first to travel it, and many others will accompany you on it.

Good luck.

[SueJohnson in reply to Madlegs1]

You're starting off early making me laugh! 😂You're definitely my personal court jester. 💚

[Joolsg]

Bayham, has your GP arranged full iron panel blood tests? You are suffering the most COMMON complication of dopamine agonists.

They cause the disease to worsen severely.

It's called augmentation.

RLS-UK site sets out the withdrawal schedule so read it and follow it.

Basically reduce by 0.25mg every 2 weeks and ask GP to prescribe 50mg tramadol or 10mg oxycodone to settle the severe withdrawals at each reduction.

Gabapentin won't do anything for you until you've been off Ropinirole for a month.

And you will need a higher dose.

And report severe, increased RLS via Yellow Card Scheme. UK doctors need to stop prescribing dopamine agonists and that will only happen if everyone files a report.

rls-uk.org/useful-resources

bnf.nice.org.uk/medicines-g....

[SueJohnson in reply to Joolsg]

I swear we have some psychic communication going on. Often after I have posted a reply in the early morning, whether at 5 am or 6 am US time I will refresh the page and you have replied at almost the same time.

[Joolsg in reply to SueJohnson]

Great minds Sue! 😌

[SueJohnson]

As Madlegs says you are suffering from augmentation and were advised 6 years ago to get off ropinirole. I'm glad to see you are down from 3 mg. You definitely need to get off it since you have started hurting yourself.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.

Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin. Normally you would start it 3 weeks before you are off ropinirole but you are already taking 600 mg. It won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.

At that time switch to take it 1-2 hours before bedtime as the peak plasma level is 2 hours. You won't need to take it in the afternoon. 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. (You don't need to split the doses with pregabalin)

Most of the side effects 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. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[Bayhams6]

Thank you Jools , I’ll try and take that all in but to be truthful I’m so tired, how can I print your reply

[SueJohnson in reply to Bayhams6]

You can do a copy and paste it to your word processing program and then print it from there.

[Deborahok]

Hello: Boy can I relate to what you are going through. I was taking cardiopa/levodopa for almost two years and it finally stopped working. I’ve posted on the board before about my use of castor oil. I rubbed it on my feet before bedtime and it was amazing. I expected to calm down my neuropathy, which it did. Did not expect it to help with my RLS symptoms. They went completely away for about 6 days. I stoped the medication and did not have any withdrawal symptoms. After about 6 days my symptoms started to slowly come back but not like before at all. Someone on this message board suggested that RLS is caused by imflammation. The castor oil helped with that. I was watching a medical YouTube show and someone suggested taking olive oil before bed for better sleep and it reduces inflammation. I tried it and now am on my 5th day with no sleep medication and no RLS. I’m sure it won’t last. Nothing ever does, but it is so much better.

I have a few tips on what has helped me over the years. Now this is for ladies only. It’s kind of embarrassing, but it has been so helpful that I have to share it. Clitoral stimulation. Yup. It works. I got a vibrator just for that purpose and it helps calm down the sensations. Not sure why. I keep two by my bedside - fully charged. I’m 75 so I’m not doing this just for fun.

Another thing that has been helpful is jumping on my rebounder. I get up at night when I can’t lay there anymore. Sometimes it works like a charm. Other times it doesn’t.

My mother had RLS before anyone knew what it was. She referred to it as the “creepy crawlies” which is so apropos. I call it the “creepies”. I am so thankful that the creepies have calmed down to the point I’m not being driven mad and am finally getting some sleep.

Hope these suggestions work for you.

[SueJohnson in reply to Deborahok]

The vibrator works because orgasm increases dopamine.

[Deborahok]

Yes but no orgasm is involved. Unless of course I want it to. My main goal is just to go to sleep. It is not sexual at all. Just the vibration alone calms the creepies.

[SueJohnson in reply to Deborahok]

Ahh - understand.