up all night

[nannaof4]

I’ve been up all night ,I’ve been taking ropinoral for years 1.5 daily but tonight it’s been the worst for a long time. Went to bed at 11 last night and I’ve had no sleep at all,I take oramorph and loads of other medication and last night the pain got so bad I took another 5 ml of oramorph,it made no difference. It started in my left leg then at about 4am it started in my right leg,by 6 it was in both. I found myself walking around our garden with no shoes on. I’m going to ring my gp on Monday and see what they say,will let you know what happens if anything.

[Madlegs1]

Hopefully,they will inform you about augmentation, and grovel in front of you apologising for getting you to this point.

They will advise you to come off the Ropinerol,very slowly and by tiny amounts. They will promise to help you through this incredibly difficult process, with support at the end of the phone at all times of day and night, and have suitable medications to help you at all times.

They will organise low dose opioids such as tramadol for the last few weeks.

They will offer to start you on Gabapentin or Pregabalin about 4 weeks before you finally get to quit.

They may even offer you a 3 weeks holiday in the Canaries to help with the recovery.

This will all be normal practise when I become world dictator.

Sadly it is far from current practise.

But- give them a chance 😝

[Joolsg in reply to Madlegs1]

👍👍👍👍

[SueJohnson in reply to Madlegs1]

My laugh for the day "This will all be normal practice when I become world dictator."😀

[Joolsg]

As you've been on this forum since 2021, you know the reason you were up all night.I just hope your GP is knowledgeable.

You are suffering augmentation.

RLS has moved to your arms.

Just read any post headed Augmentation or Ropinirole or Pramipexole and follow the advice.

1. Reduce Ropinirole by 0.25mg every 2 weeks

2 Safely replace any trigger meds

3. Ensure serum ferritin is above 200ųg

4 Start pregabalin about 4 weeks before last Ropinirole dose.

Interesting that you have oramorph. Did your GP prescribe it for RLS?

[SueJohnson]

As the others have mentioned you are suffering from augmentation. To expand on why Joolsg said:

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

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.

Since you are suffering now I suggest you increase your ropinirole by 25 mg and let your symptoms settle. However don't be tempted to stay on it as you will augment quickly again.

Once your symptoms have settle for a couple of days 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 to increase your oramorph. But in the long run, you will be glad you came off it.

Ropinirole 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 but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] 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 you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) 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. (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, 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 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)."

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, C, 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 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.

[Eryl]

When you have one night that's considerably worse than most nights you've got to think of what you did and what you ate the day before. Common causes are birthday parties or other functions where you've eaten more sugary foods than on a normal day.