I did try to contact Matthew Walker as saw his name mentioned here but tried several phone numbers and emails with nothing back.
Just to mention I've tried ropinirole, pregabalin & pramipexole, none are long term solutions. Also just waiting for some blood test results from a recent medical and as mentioned here iron levels.
Thanks for any help.
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Legs-Eleven
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I recognise the names of Dr Alanna Hare and Dr Reddy. They both list RLS as one of their areas of interests but unfortunately I have no idea if they are up to date in their thinking on how to treat it.
If I were you, I'd ask first for their views on dopamine agonists. Dr Reddy is at King's and specialises in Parkinson's.My only concern is that King's College RLS clinic still prescribe the Neupro patch after patients have experienced augmentation on Ropinirole and Pramipexole. That simply prolongs the agony.
Ask first if they're prepared to prescribe iron infusions or low dose opioids for refractory RLS in accordance with the Mayo Clinic Algorithm. If not, they're not up to date.
As you say you've tried Ropinirole and Pramipexole, presumably you suffered augmentation on both? Pregabalin doesn't help if taken alongside Ropinirole/Pramipexole. It's only effective around a month after withdrawal from dopamine agonists.
2 years ago you said you tried pregabalin while you were suffering augmentation and stopped after a couple of weeks. Did you ever try it again when you had been off ropinirole for a few weeks and did wait at least 3 weeks for it to be fully effective? And the 150 mg you said you were taking is a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin daily."
If you haven't, check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, using a standing desk, listening to music, meditation and yoga.
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.
When you get your blood tests on iron, post them here and we can give you some advice.
Sue I did up the pregabalin to 300mg for about a year, might of helped a bit in the beginning. At the end the nights I took it didn't seem much different to nights I didn't so stopped. Then I didn't take anything for the best part of a year, which again meant every night my legs waking me up between 3-10 times.
Few months ago my aunt said she also had RLS and was taking pramipexole, so without even looking it up asked my dr for it and got 0.088mg tablets. Well 1 tablet stopped the RLS in it's tracks, I'd forgot what it's like to be completely rested in bed. Then to my horror when I looked it up saw it was the same class as ropinirole - coming off that was hell, 2 weeks of no sleep.
So for the last few months I've been limiting the pramipexole for about 2 nights a week just for some relief. I even took a pregabalin last week and that helped, so shows you can't take these tablets every night.
Just trying to book in with one of those consultants at the mo, also got my bloods back today???????
FERRITIN
Your ferritin is raised. This can be normal but can also be a marker of underlying inflammation or infection in the body.
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