Changing from Ropinorol to Gabapentin.

[Jackyscooter]

I had a sleep study done and I have Mild sleep apnea. They told me to quit taking 1.5 mg Ropinorol and start taking 300 mg gabapentin. I can't sleep and I am miserable. I took 1 mg Ropinorol ast night after 4 hours of waiting for the gabapentin to work. Today the increases my gabapentin to 400 mg. But she said "no" Ropinorol. I have also developed poop incontinence. With this whole miss. I am going nuts not sleeping.

[SueJohnson]

No no no. You do not just stop ropinirole cold turkey. Go back up to your 1.5 mg ropinirole let your symptoms settle then and start over the correct way

To come off ropinirole , 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 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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin [Since you are over 65 if you are susceptible to falls beginning dose is 100 mg)] Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that 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 as the peak plasma level is 2 hours. 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. 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, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . 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? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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 uptodate 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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, 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, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[CathyJoH in reply to SueJohnson]

Agree 100% I was on Ropinrole - its a rough transition for a few weeks but worth it. Do it the right way as described by SueJohnson. You will get there!

[SueJohnson in reply to CathyJoH]

I think you meant this for Jackyscooter

[Joolsg]

I agree with SueJohnson. Getting off Ropinirole is more difficult than getting off heroin. Wealthy people go to rehab to get help with that.Withdrawal will be hellish. So slow down.

Most people need a low dose opioid to settle the severe RLS at each dose reduction, but it sounds like your doctor may be reluctant.

You could try to find a doctor who knows how hellish withdrawal really is.

Where are you? There are some great doctors in the USA, but they may not be near you.

[Oscarcat63]

Hi !Can you tell us where in your body your rls begins ?

Mine was very bad in the lower legs when I took anti depressants. However, it then began with a 'twinging, 'cattle-prod' feeling in my lower back and I basically sort of 'double up' (unsure how to describe it) to relieve it temporarily

I am concerned that you have developed faecal incontinence, because that may indicate a serious problem. Have you numbness or burning down your legs and or buttocks ?

I am not a Doctor, but this does sound as if you have a problem with your lower spinal nerves. I am 61 and found out (through mri) that I have compressed nerves and whilst I do not require surgery, it is very painful at times.

I take 300mg of pregabalin atm and just getting used to the dosage increase. I also have clonidine which aids in sleeping so I get 4-5 hours... before rls or pain wakes me up.

Jools and Sue are both extremely knowlegeable abot rls, and their advice is worth following. Augmentation on ropinerol and the like is very real and it is such a huge shame that it is still prescribed.

All the best