Efficacy of methadone for refractory RLS

[GuillaumeL]

Fellow RLS sufferers,

For a short bio, if you don't mind, you can skip to the second paragraph: I'm in my early 30s. Suffered mild RLS as long as I can remember I (didn't know it was RLS at the time). RLS increased in intensity and frequency during my 20s. It became a nightly thing around the time I was 25. I don't drink, don't smoke, I'm doing a ton of physical activities, plus yoga and stretching. I tried every natural remedy to help my RLS (vitamins & minerals). I've been taking 56 mg ferrous bisglycinate tablets once every other day for a long time. I've tried various restrictive diets. I stopped caffeine, sugar, etc. Nothing worked. Went through a whole serie of blood test everything is normal and my iron is high since I supplement. So I started taking pregabalin at 27 since I couldn't sleep otherwise. My dose has been stable for years (300 mg once before sleep). Pregabalin helps, but it does not prevent all symptoms. I still wake 2-5 times a night, with nights I can barely sleep. A GP suggested I try a DA (pramipexol). I knew I risked augmentation, but that I had to try it eventually alongside pregablin. I did suffer lack of efficacy and eventually augmentation after 3 months. Stopped taking pramipexol. A year later, I finally met a neurologist. She suggested I try pramipexol again. I did, same thing happened after 3 months. I was finishing my doctoral thesis and couldn't go through withdrawal, so I kept taking it for 6 months total. The withdrawal was brutal. It took me 3 months with little to no sleep. Cannabis oil taken orally helped ( a balance of THC/CBD from an indica strain).

After 2 1/2 years of waiting time, I finally met a sleep specialist. Spent a night at the clinic so they could monitor my sleep. In 7 hours, I woke 5 times and I had intense leg/full body spams 9 times per hour. So yeah, pretty intense RLS even with 300 mg pregabalin and cannabis. This sleep specialist was the only professional I met who knew about RLS treatment protocol (see the link at the end of this post). After seeing the result from my night there, he prescribed methadone outright alongside pregabalin. I'm slowly increasing my dose of methadone and diminishing my dose of pregabalin. It's only been a week, but I had to share this. I started at 0.5 mg, now at 1.5 mg + 225 mg pregabalin and I stopped taking cannabis oil. At 0.5 mg it worked somewhat. Then, at 1 mg, I started sleeping 8-9 hours a night and waking only once per night. Yup, I feel like a normal human being again. This is a ridiculously small dose. The eventual side effects can't be much worse than what I experience daily for years with 300 mg pregabalin + cannabis oil.

If you suffer from refractory RLS and meet a professional who doesn't follow this guideline, feel free to print it and shove it in their face. It's an open access paper, you don't need a license to get it: sciencedirect.com/science/a...

I'll keep the community updated on the long-term efficacy of methadone for my refractory RLS.

Cheers!

[Hidden]

Yup, 5 years on Methadone + Ropinirole. Reset annually with a month Methadone only. 8mg for 11 months 14mg max on reset. RLS Foundation algorithm for severe RLS, starting dose 4-20mg.

[DicCarlson]

Good for you! I'm glad there is a non-DA solution!

[Hidden]

Thanks for sharing your story. Long may the relief last. Do keep us updated on how it's going for you. There seems to be more and more posts about methadone these days....

[Guitarpickin]

Thank you for sharing your story! It’s great to hear you’ve finally found effective treatment. Hope the relief lasts a very long while. Please keep us posted.

[involuntarydancer]

So pleased for you. It’s great to hear the good news stories.

[Lolly53]

So happy you found success! I have been on 5-7.5 mg Methadone for three years now. It indeed has been a godsend and has revolutionised my health because I now sleep well.

[funnyfennel]

Sounds hopeful. My RLS is Raging since having open heart surgery six months ago , now I'm absolutely ragged , no sleep ,up and down all night. I've been on x2 pramipexole, plus Shortec 5 mg for a few years now which wasn't perfect but I would get a few hours sleep here and there. I think I'll buy some iron tablets and I'm going to ask the doctor for a few sleeping tablets to try as well any recommendations would be welcome.

[TheDoDahMan]

Glad to hear of another sufferer who has found low-dose methadone. I've been taking it for 3 years now and it has changed my life too. If only more doctors would get the message. My personal care physician would not prescribe it, saying that it was "off-label". Eventually, I found a specialist who would. Now I sleep 8 hours, EVERY night! I take no other meds.

[GuillaumeL]

Quick follow-up on methadone.

I've been using methadone for close to two weeks. My sleep is way better than it was under pregabalin and cannabis. I've stopped using cannabis entirely a week ago (which is good for my overall mood and capacity to function in the morning). I'm now using 200mg pregabalin alongside 5mg methadone. I've now reached the max dose of methadone my sleep specialist is allowing me to use.

I still wake up between 1 to 4 times a night to stretch due to uncomfortable legs. However, I start sleeping 15-30 minutes after taking methadone. So I start sleeping around 8:30-10pm instead of around 12:00/1am before methadone. I generally feel better and more awake. I can start my day earlier since I fall asleep earlier. Overall, a significant improvement. So far, I've had no side effect from methadone except constipation for which I was prescribed a powder.

I think I'll need to increase methadone a little to sleep better and to reduce pregabalin further. I'll keep you guys updated on the methadone journey.

Cheers!