I live on the West Coast of Canada and have suffered from RLS since earliest childhood. This past year I was put back onto Levodopa, as I had augmented on everything else available, and they decided to try an old treatment I hadn’t used in twenty years, It actually worked if I used it throughout the day in small doses with Tramadol and cannabis before bed. However this Fall I found it’s effects diminishing. Finally after much conversation and then research by my doctor and more conversation I was able to encourage him to try Methadone as a treatment.
We Scaled back from the other drugs except weed and began treatment at 1 mg a night, increasing the dose every week. Before each increase I had an ECG which was normal.
I am now on 3 mg of Methadone without any thing else but the occasional THC vape and have been RLS free and sleeping like a baby. Crying with relief! Hopefully can stay at this low dose but will see what happens.
Now I am praying this treatment will continue be effective for many years, as for the first time in decades I am not dreading the evening and the long nights!
I don’t know if others have had a different experience or more have had a positive outcome. If you can I encourage you to as your Doctor to look into this. My doctor also talked to a local sleep specialist who gave him positive feedback . So grateful!
Wishing you relief on your journey,
Teresa
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Brilliant news. I'm delighted for you. Dr. Winkelman's opioid study shows the dose of Methadone stays low & is effective even after several years. Unfortunately, the UK is about 10 years behind the top expert treatment in the USA so Methadone is not prescribed. However, several of us have had similar results with Buprenorphine / Temgesic, a similar drug to Methadone.Thanks for sharing your success.
Thanks Joolsg. Yes, it is the same in Canada, hence the one year battle till my doctor agreed. Since it isn’t recognized as a treatment in Canada I have to pay for the treatment myself. I will gladly sacrifice other things to enjoy this stillness and peace. I hope the Buprenorphine is also excellent. It was sharing the articles from this site that eventually changed his mind. Thank you thank you to all who contributed! Teresa
That is such good news. The Buprenorphine is miraculous as well for me. Zero RLS after years on Oxycontin and pregabalin. Let's hope more and more doctors begin to listen to us.
Sergi Ferre, the guy who with his group researched and published about the role of adenosine in RLS is currently working on this issue. Aided by a grant from the US rls.org foundation.
Opioids (laudanum at that time) were already used to treat RLS in the 17th century, according to a publication by Sir Thomas Willis.
The receptors for RLS are similar to pain receptors. No idea of the detailed bio chemistry involved but morphine was the first drug used successfully for RLS in 1670 by Dr. Willis in London.Lower doses work on RLS and the dose rarely needs to be increased.
Have you tried Requip?? It helps. Also, when my RLS kicks in…. It’s bad! It’s not just my legs: it’s my body too. Not sure how to explain it.
My doctor told me once that I probably am low in iron. Three or four days ago I was having a terrible RLS attack. Tried Requip and it helped some (although it took a while). However, I started taking iron and apparently it is working!!
Hi there. Yes I take absorbable iron, magnesium etc. I have always had full body RLS including arms and hands Hopefully that will take care of it. I have needed more do Methadone has decided be the trick!Terrsa
I had severe augmentation after about 10 years of Ropinarole 0.75mg, sometimes 1mg at the highest dose. Actually augmentation began a few years before I quit, but I thought it was the natural progression of the condition. Terrible insomnia and depression from quitting Ropinarole. Now I'm on 7.5mg to 10 mg Vicodin and doing about 95% better. Still occasionally some very mild RLS. I did my own research. My doctor didn't even know about augmentation. I'm SO happy to be doing so much better.
This is great to hear. My husband has only one more month on oxycodone, they are then switching him to Methadone. I hope he has the same success as you.
Happy for you. I began Methadone over a year ago and it was miraculous. Then, in January I developed crazy symptoms including all over muscle twitching and palpitations. I ended up in the ER for the first time in my life. They diagnosed me with a UTI and then had an allergic reaction to the IV antibiotics. It was a terrible time. After that was cleared up the muscle twitching remained and painful pins and needles. It was an adverse reaction to the methadone after a year of taking it successfully. I quit and switched back to hydrocodone never considering I might have withdrawals. It’s been a rough ride. Withdrawal symptoms last a long time and the hydrocodone is less effective now because my RLS is worse than ever. It’s in my arms now and happens during the day too. Everything I’ve read tells me I should start feeling myself in another week or so.
I’m hoping someone has a similar story that ends well!
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