Hopelessly devoted

[Legs1970]

5 years on since chatting to a few professionals in controlling RSL and I'm still twisted as I was 5 years ago and yes still alive. Only difference to back then is I now see a neurologist every 3 months (4 visits in now) Brain scan can back all good checking block results coming up in November 2024. He's introduced me to Lyrica started on 25mg and he said I can self medicate up to 150mg if I feel I need to. End goal is to slowly come off Sifrol 1mg. So when unset of symptoms start I take 1 x Sifrol and 1 x 75mg Lyrica, if my restless leg symptoms continue to cause me grief an hour or so after I top up with 1 x 25mg Lyrica not another Sifrol tablet. That worked semi ok for the first few months, however in the last few months I'm finding I need to take another 75mg Lyrica and/or a Sifrol as well. Grrrrr pulling my freaking hair out.'Hopelessly devoted'

[Joolsg]

Interesting. So the neurologist hasn't told you how to get off a criminally high dose of Sifrol or that Lyrica won't help at ALL until you're off Sifrol completely.There's really no point starting Lyrica until about a month before your last dose of Sifrol.

And you need to drop half a 0.125mg sifrol normal release pill every 2 weeks. As the withdrawals start, your neuro should prescribe a low dose opioid, like 50mg tramadol or 10mg oxycodone to settle symptoms.

Look at Useful Resources on RLS-UK website. Withdrawal schedule and Iron.therapy can be printed off and shown to your neurologist.

[SueJohnson]

Lyrica won't help much until you are off sifrol for several weeks and your symptoms have settled.

Sifrol is pramipexole so just substitute sifrol in the following when I say pramipexole.

1 mg sifrol is twice the maximum amount so you are augmenting.

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

To come off pramipexole reduce by half of a .125 tablet (ask for a prescription of these if needed) 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 and the Neupro patch (Rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin (lyrica) are.The beginning dose is usually 75 mg pregabalin. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 25 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. 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.

According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 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 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.

[Legs1970 in reply to SueJohnson]

Wow thank you Sue so much for your information this has opened my eyes to a little hope. I will follow your advice and info and keep you updated on my journey into a better future for me.

[Insomniak]

Good luck Legs1970 - I am on a similar journey to you except that it is Ropinirole that I am coming off. It can be pure murder at times and a very lonely experience. However, Jools, Sue and the rest of the crew here are a tremendous support. I hope you manage to push through the last few stages and beat those horrible symptoms 👍