Hi there I wonder if any of the subscribers would give their opinions on their treatment for rls and what in their view works and what doesn’t?
Serious answers only please I know There is a lot of wacky treatment and some downright dangerous
I’ve tried a few myself over the years but if there’s something out there that helps people I would like to know. Do any of you follow a regime with or without the conventional drugs used to treat rls?
I find that over time drugs that help soon lose their potency and it’s a matter of trying to find something else but in my case I find I’ve run out of options!
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Hoochybaby
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I have read some of your earlier posts and note that you have taken Pregabelin. I take 600mg and also use the Neupro patch 2mg. In addition I take 200mg of Tramulief. It is a cocktail that has worked well but perhaps it is becoming less effective. Obviously what works for one person may not work for another.
Have you tried a drug holiday to tackle tolerance? I take Tramadol. Periodically it stops working. I stop taking it for a month and it becomes efficacious again. Good luck.x
This is a really good question and I hope you get loads of replies. The difficulty in finding a good treatment regime is twofold: first finding something that works at all; secondly, finding something that allows a reasonable quality of life taking into account drug side effects and symptom coverage.
The system I use now - after trying many options - bucks the current recommendations and will probably draw ire on here but it does allow me to sleep through the night every night in spite of my severe rls and I am more or less able to continue with my professional career. Primarily, I rely on:
(1) Kratom. I find kratom much more effective than opioids for managing my symptoms. It does not cause nocturnal alerting (which was profound on oxycontin) and seems to be kinder to my opioid induced central sleep apnea. Furthermore, I find it much easier to discontinue than oxycontin - the withdrawals are much less severe when I take a break. I take four or five doses of kratom through the day, concentrated in the afternoon, evening and bedtime. My total daily intake is about 12grams. I find that if I take it through the day, I don't need to wake through the night to take a top up dose. If I don't take it during the day I invariably wake with rls through the night;
(2) 0.88mg Pramipexole. I resumed pramipexole about 3 years ago. I take one 0.188mg tablet of pramipexole daily at about 9.00pm. Having gone through the nightmare of dopamine agonist withdrawal, I was extremely reluctant to return to pramipexole and I am vigilant to avoid any increase in dose. However, so far, I have not needed to raise the dose (apart from very early on when I increased from half a tablet). I am not sure why I have not needed an increase in the pramipexole dose to cover existing symptoms this time around. My theory is that my dopamine receptors were damaged by the excessive pramipexole dose a decade ago and now that one tablet is required to ensure that they are effective.
I do sometimes suffer from brain fog with the kratom and have definitely suffered a decrease in cognitive function but nothing like as bad as when I was on prescription opioids or was getting no sleep due to untreated rls.
I also ensure that my iron levels remain high and I take occasional breaks from pramipexole and kratom to avoid habituation and the need to increase the dose. Each time I take a break, however, I find I need to return to the same dose afterwards to get full coverage.
Over my many years with rls, I have tried the following: pramipexole (the usual story - 10 years on an ever increasing dose followed by a horrendous withdrawal 5 years ago and subsequent traumatic months trying to find something to cover overwhelming symptoms); oxycontin (needed 30mg to cover symptoms, had terrible daytime lethargy and exhaustion and profound nocturnal alerting); pregabalin (scary side effects which did not settle and in any event inadequate coverage even at a high dose); codeine (quite effective but central sleep apnea a concern and unpleasant side effects); dypyridamole (helped a lot with certain symptoms and daytime tiredness for some reason but was not adequate to cover all symptoms); iron infusion (sadly not a silver bullet for me but I think helps with preventing dependency on pramipexole); cannabis (usually as an edible - does not touch my rls symptoms but helped a little with nocturnal alerting when on opioids); temgesic (second best to kratom as a treatment), a relaxis pad (did not touch night time symptoms - in fact seemed to make them worse - but was useful back when I needed a rest in the day), many dietary and lifestyle changes and every sort of supplement ever mentioned on this and other forums (fora?) - none effective for my rls.
You can't get to sleep. You lie there in an pleasant opioid induced fug but sleep does not come. It affects some RLS sufferers when they take opioids to control their symptoms.
Many thanks for your detailed replyI too take 0.088 mg pramipexole at 9pm at night but it’s losses it’s effectiveness now I’m too reluctant to increase the amount because I went through the nightmare of augmentation in the past. I also take codeine twice a day but I’m struggling at the moment with severe rls at night leading to insomnia
I can’t think of much else I can try I came off Pregabalin a few months ago and I don’t really want to go back on to it
I’m waiting for an appointment with my neurologist but can’t get a slot at the moment
Hoochybaby, do you keep your iron levels up as high as you can het them? I think dr Garcia-Borreguero and colleagues have written that it may help deter tolerance and augmentation when on a DA. If you do, maybe you will have to build in medicine rotation or holidays. But then, what to take when you temporarily stop the pramipexole? Like involuntarydancer , my go-to escape is kratom. Previously red ones to deal with the RLS (currently well controlled by Temgesic 0.2mg in the evening) and currently white ones to deal with the brain fog and lethargy from the Temgesic (and previously from oxycontin). Unfortunately, kratom is illegal in UK, and not a controlled substance. It can however be ordered from The Netherlands.
I hope you get some new insights from the replies to this post. It sounds as if you soon need to tweak your approach to the RLS.
Hello LotteM Do you think that Pramipexole and pregabalin are a viable combination? Before I went back on to Pramipexole I took codeine and pregabalin together on a low dosage ie 75mg pregabalin and 30 mg codeine twice daily
You will always have to try whether it works for YOU. But I know the scientist do recommend combination therapy for refractory RLS, which is obviously what you have. All three classes of meds - DAs, gabapentinoids/alpha2delta ligands, and opioids - can be combined. All three types work differently. If you need back up for this to take to your gp I can track down the papers for you if you want. Let me know. The combination makes that each type if med can be taken in a lower dosage, reducing the chance of unwanted side effects.
Thanks to all who replied to my recent query regarding my severe rlsAfter trying various combinations of da’s and opioids I am currently taking pramipexole 0.088mg and two 75 mg codeine in the evening it’s far from ideal but the codeine at least takes the edge off the rls at about 7 pm
Insomnia is a big problem and most nights I don’t get any sleep TIL about 2 to 4am and something none at all I don’t contact my gp anymore because they don’t have a clue about rls or they don’t think it’s a big problem
I deal with a neurologist at an hospital but very hard to get appointment it takes months to have a telephone consultation
Hi Hoochybaby, I take 0.26 mg Prolonged Release Mirapex at 8.30 pm and at 9.30/10.00 pm take 2 co-dydramol (10/500) plus 1 high strength Senokot (to prevent constipation), then at 10/11 pm 0.5 mg of Clonazepam. This cocktail works for me. I avoid eating apples, pears, banana’s, grapes, raisins, garlic, mayonnaise, margarine, nuts, sweeteners. I sometimes still have a bit of RLS in the evening but after a hot bath before bed I sleep for 8-9 hours. Good luck.
I had SEVERE RLS - It was perplexing, scary, and very confusing. Docs tried to give me muscle relaxants - yeah - no help. It was 24-7 even in my arms, I thought I had Parkinson's. I discovered (after months of searching) Johns Hopkins Neurology Dept and the "iron hypothesis". What? My Ferritin was 49 - I started a Ferrous Bisglycinate Chelate supplement and never looked back. Ferritin went to 105 in 3 months. That said - still troubled with protracted insomnia. Check iron status first!
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