hi again everyone, I just want to give a quick update for anyone who may be considering methadone.
After trying many other drugs, and after augmentation and withdrawal from dopamine agonists, I started mid Feb on 2.5 mg methadone and have titrated slowly over 4 months to allow my body to get used to it, to 10 mg. It’s not perfect - I do have to carefully manage constipation, go to bed super early, and feel I have lost a lot of my “drive”. I don’t feel my brain is as sharp as it was - experienced severe cognitive decline during my long period of sleeplessness and may still be suffering the consequences. This has improved but not as much as I had hoped and i have a suspicion it won’t improve much more on methadone. My appetite is returning and my weight loss slowing. I have lost the feelings of hopelessness and feel almost normal again.
And I the prize - I CAN SLEEP!!!
I am sleeping 7-9 hours most nights with only minor breakthrough symptoms.
I’m in New Zealand and have a young GP who is happy to accept the information I take him from RLS.org and the Mayo clinic etc.
So a big THANK YOU to everyone here who has shown me how to educate my doctor ( and myself).
Hope this helps someone who may be considering what to do.
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That is great that you can get a great night's sleep and you feel almost normal again.
Can you give me the name of your doctor and his location so I can add him to my list of doctors in case anyone else needs a referral as there are so few good doctors,
It's great that you're sleeping so well, and that you've found a progressive sounding GP that prescribes something that works for you! Hopefully some of the less desirable side effects continue to abate.
That is wonderful. I feel the same way about methadone successfully controlling RLS. I sleep so well and can manage the constipation with a few sips of Smooth Move tea. I am having some brain fog but have not identified the cause. Interestingly, I had spinal surgery a week ago and I have not (yet) had brain fog since then. I will continue to monitor and report back. Thank you for sharing g your experience!
Thanks I will try the smooth move tea. I have just about got the constipation under control with laxsol, plus pears, figs and beans for extra fibre but I am taking more than the recommended daily dose to do so , so if I can find something else natural and reduce the amount of laxsol tablets , that would be good.
That's ggreat to hear RL has settled well and you are getting precious sleep without too much bother from side effects. I'm very happy for you. I'm also feeling settled with methadone. What a relief. I can get a decent night on 7.5mg but also can go to 10mg when needed. Hurray for the doctors who listen and help us with this awful syndrome.
I also have started methodone on June 9 -10 mg. I am not sleeping thru the night. Prior to this I was going thru withdrawal from mirapax. Now withdrawal is gone. but I still wake with rls. I am slightly constipated. Never heard of smooth move tea. I am in the United States. Where would I get it. I wake up a lot during the night sometimes with rls. Not horrendous rls but annoying. I am very tired during the day. Lately I have been taking a nap. Never did that before. I thought being on the methodone would cause the rls to go away. It has gotten better but I still have rls. Am I expecting too much. I also have sleep apnea and my dr said I must use the cpap machine every night. That will also help with rls. Sorry to go on so long. Thanks for all your help.
hi lorries, in the first 3 mths of taking methadone I was also very sleepy and dopey and lacking energy. I've been taking it since Jan and there's a big improvement and side effects are almost zero. The RL at 7.57.5mg breaks through sometimes and I'll up the dose by 2.5 for 3 nights and then come back to lower dose. I hope your side effects settle soon and the most effective dose is established for you so you get best benefit. I feel like I'm constantly learning and changing to find what's best for me!
I took 5 mg methodone for 3 days starting 6/9 then went to 10 mg.-- 2.5 mg at 1 pm. 2.5 mg at 6 pm and 5 mg at 10 pm. now i am noticing i have numbness in my feet and legs and when I urinate it comes out much slower. I have to talk to my neurologist about this. That is amazing that you get a good nights sleep. I don't sleep thru the night and still have some rls. do you think that will get better?
I also have slow urination,. No numbness in my feet but I do in my hands. I am usly in bed for 11 -12 hours as I go to bed around 8 pm, but my Apple Watch app now tells me I am getting 7-9 hours sleep most night. When I wake with mild RLS, I go to toilet then watch a mindless tv show on my ph ( I like Coro!, as it doesn’t matter if I close my eyes or drift off ) or play a game of “ classic words ( scrabble) on my ph. Usly I drift off to sleep again. On the occasions the RLS is worse, I get out of bed and do a low squat for as long as I can hold it, then hop back in bed and go right off to sleep.
I find if I do nothing but try to go back to sleep, my RLS just gets worse.
Hi Lorri, wow did you go straight to 10 mg? My side effects were too much so I had to go very slowly. I was waking too, with RLS , and was worried that it was not working as well as I had hoped, but now at 10 mg I find that although I still wake a couple of times a night with RLS, it is fairly mild and it doesn’t take me too long to get back to sleep. Methadone does take a while to build up in your body and for your body to get used to it. But if you are still having trouble sleeping in another two weeks I wonder if you will need to increase your dose a little. It may be that your withdrawal symptoms are still very strong. But I would only increase by 2.5 mg and see how you go on that. However I am not an expert only going off my experience and what I have learned through this site and RLS.org. Best of luck to you.
I also had naps in the day, after every meal, but now the sleepiness is not so bad and I can get through the day without a sleep. But I am in bed at 8 pm every night!!
Everyone's story sounds so familiar to me. I want to hug us all. Smooth Move tea is in the grocery stores in the United States. Amazon has it too. I occasionally need an entire cup, but usually a few sips work and I refrigerate the rest.
CPAP greatly helped with extreme fatigue.
Insomnia is a separate problem. I found some sleep gummies that contain CBD and Delta 9 that are awesome for insomnia. I use half a gummy every night.
All of those were awesome, but what I call brain fog set in. I'm not sure what caused it. So 2 a.m. with RLS and I am awake with symptoms. I've had 5 mg of methadone. It is time for my second dose. I haven't taken the sleep gummy either. I'm pondering the cause of the brain fog. It has been reduced the past two weeks since I dropped the sleep gummy and reduced methadone to 5 mg.
I don't mean to distract from your story, but hearing yours and others helps me so much.
I have a strong suspicion methadone causes brain fog . I just cannot seem to concentrate on anything that takes brain power for very long at all. It’s as tho my brain is tired. Yet I can do paint by numbers for hours. But as soon as I try to do anything intellectual, I only last about 10 minutes.
And I agree wholeheartedly that sharing helps so much!
CPAP is a device worn at night to treat obstructive apnea. I did not even snore but testing for it was part of the work up by my neurologist. I has severe apnea! It isn't uncommon to have sleep apnea and insomnia along with RLS.
drs name is James Moodey, manurewa medical centre, manukau, Auckland. He is young and inexperienced in RLS but saw what a bad state I was in . He was prepared to look at the research I took with me.
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