starting methadone for RLS… was looking for a little advice.
I’m going too take 5 mg morning and night. I have another 5 mg just in case..
Anyone who takes methadone on here I was wondering. What time do u take it in the morning? Do U have any withdrawal in the morning before U take the first dose?
I was just wondering what it’s been like for you guys on methadone.
thanks!
Hi. I probably told you this but I took 5-10 mgs of methadone every night before bed. It worked all night for RLS. I didn’t have any withdrawal during the day, nor did I have daytime symptoms.
Methadone lasts a lot longer than oxycodone.
I would easily fall asleep during the day without warning-if sitting down. But not when active. I also had all-over itching that could get pretty bad, constipation all the time, as well as hot flushes that were intense.
I only started withdrawals when I went a couple of days without it. Then it was hell on earth.
Good luck and I really hope you find relief with this-I know you have tried everything else. Hopefully your side effects are minimal/manageable!
Hey! I have had similar side effects from methadone and am going to ask my doctor if I can taper off of them and onto something else. What are you currently taking? TIA
I have been taking it for about a year and a half and it's nearly taken all of my symptoms away. I had augmentation from Tramadol so I had symptoms 24/7 and in my whole body. The difference in my quality of life is enormous.I take 5mg about 8:00am. And 7.5mg about 8:00 to 10;00pm. Until 3 months ago I was taking 5mg at night but started getting some symptoms in the middle of the night so my neurologist added 2.5mg at night and I'm back to virtually no symptoms.
I don't wake up with RLS. By the time 8:00 pm rolls around I occasionally do start getting symptoms. But it isn't bad and the meds work pretty quickly.
The only side effect I personally had were headaches and getting really hot and sweaty several times throughout the day. But they both went away after a few weeks.
Good luck! I hope it works as well for you as it has for me.
Hi I'm on 250 ml of trammadol at night for the last 10 years how long was ìt for you before augmentation happened l wonder if l will need methadone in the future have refractory rls Regards
Yes I have refractory RLS as well. I’m not sure but I think at least a few years into taking it is when I’m guessing the augmentation started. I took Tramadol for about 12 years. I started at 100mg at night and by about 5 years in I was getting worse and worse (augmentation but didn’t know that for another 7 years) I was up to 100mg 4 times a day. About the last two to three years my symptoms would start about 3 to 5 hours after taking it. With it being much worse at night.
Once I found out about augmentation with Tramadol and found a neurologist who actually knows a great deal about it and was willing to treat me my life changed entirely.
She titrated me down from the Tramadol pretty slowly while titration the methadone up to the dose she wanted me to take and I didn’t have any issues at all with stopping the Tramadol.
Oh, I missed a part. About a year and a half before I found my neurologist my dr retired and the new doctor wanted me off the Tramadol. It took about 8 months and lots of sleepless nights but I did manage to get down to 200mg a day instead of the 400mg a day.
I was absolutely miserable but was able to do it and eventually it stopped getting worse. But I was still having symptoms most of the time.
With my very first dose of methadone I slept through the entire night and was woken up by my alarm at 7:30am not my my RLS at 5:00 or 6:00.
I literally cried when I realized I had slept the whole night and wasn’t woken up by me kicking my legs in my sleep. It was amazing.
What is your methadone dose now and how long have you been on ? Any side effects ?
I started it in April of 2021. I started out at 2.5mg a week and over a few weeks slowly went up to 5mg twice at day. After ax while I was still getting some breakthrough symptoms at night so she had me add another 2.5 mg at night. So I’m now taking 5mg at about 8:00am and 7.5 around 8:00 to 10:00pm. And I’ve been great on that dude ever since. The only side effects I really had were headaches which I just took Advil a few times a day for a couple weeks until they stopped. And the worst one was getting extremely hot and sweaty off and on throughout the day and especially at night. That also only lasted a few weeks. And I did get both of those back when e went up from 5 at night to 7.5. And they only lasted about two weeks.
So the 7.5 mg gives u full coverage? I took 5 mg yesterday it helped the tiniest bit I’m Gonna take 5 mg again today and do that a couple days he’s take 5 mg twice daily. Even 5 mg makes me so tired an drowsy I’m trying to take my time
I take a total of 12.5 a day. 5 in the morning and 7.5 before bed. If i don’t take it in the morning then I will have daytime symptoms. I didn’t really have any issues with tiredness with taking it but I’d assume that eventually as you get used to it that will go away.
But I was at such a high dose of Tramadol for so many years that I don’t really get tiredness from opiates anymore unless it’sa very strong one at a pretty high dose.
My dr started me on 2.5mg before bed. Then the next week I added 2.5 in the morning. The third week increased to 5mg before bed then the fourth week I was taking 5 am and 5 pm. I stayed on that dose for an while until I started getting symptoms in the middle of the night. It wasn’t bad but she said I could go up to 7.5 at night and that’s been perfect.
Hi, I take 10mg of methadone at night along with .25 mg of mirapex. ( was on 2 mg mirapex and was able to reduce down from 2mg with the help of methadone) I sleep pretty good but fit during the afternoon my rls kicks in so I may look into taking another 5 mg at like noon to see if that helps
This may not apply to you as I have a crazy sleep schedule, from around 5 AM to 2 PM!
I take 10 mg per day: 5 mg just before sleeping, and 5 mg about four hours previous to that. This medication has saved my life - I hope it works as well for you. I have never experienced any type of withdrawal with it. Have been on it for 4 years with no need to increase dosage. Best of luck!
I sleep 5am to noon or 1. I think many retired people with RLS have this schedule. Seems to be no choice. I am hoping my new doctor will give me methadone and then I can get back to a more normal schedule. I was always a "morning person". I love walks in the morning and breakfast. My husband is a retired jazz musician and always worked late nights, so he doesn't mind my schedule. In that regard I'm lucky!
Well, I never was a morning person; more like your hubby. Nonetheless, I'd prefer to get up a few hours earlier, just to get more daytime stuff done. Thankfully, I'm retired!
I'm on methadone now! Yay! I was taking tramadol - 200 mg spaced out over the night. The doctor said to quit tramadol (cold turkey) and take 5 mg. methadone daily. He didn't suggest what time of day, so I took a half tablet 8pm and then another half at midnight. I was up 3-5am with symptoms and I feel stupid and dizzy. But I'm not depressed! I'm very hopeful this will work for me and I just need to adjust the timing/dosage. Methadone has a long half-life, so maybe it's just a matter of being on it a couple of days. Also, my RLS experience last night was not severe and was quite manageable. Looking ahead to better days (and nights!).
I will be very interested in following this thread, particularly if there is improvement in RLS symptoms by continued use of Methadone. I have been taking Tramadol 100 mg (modified release) for several years and I would not ‘survive’ the night without it. However, I am now dependent on the drug and swapping over to an alternative would involve very gradual reduction. I am nevertheless very interested in the overall benefits of Methadone, if taken alone or along with a dopamine agonist?
Pierre J Hervé.
I just started taking methadone about a month ago. I only take 5mg at 8:00pm. It’s working ok, but I am experiencing mild symptoms. My neurologist told me that I can take an additional 2.5 when needed. I have only done that about four time and it was taken in the middle of the night when symptoms were knocking on my door. I have not experienced any am withdrawal symptoms. However, I’m really concerned about QT prolongation so I’m trying to stay at a very low dose.
Yeah I took 5 mg earlier today it did help a tiny bit. I’m supposed to take another 5 mg tonight and He said I can go up to 15 my RLS is so severe. I need more Because sitting down is a pain still walking helps but I need to sit still!! What did h mean Qt prolongation?
I’m going to take 10 mg total Tom row instead of tonight to try and avoid opiate side effects 🤨
QT prolongation can be a side effect of methadone. It is when the heart muscle takes a longer time to contract and relax than usual. It can increase the risk of developing an abnormal heart rhythms and can lead to sudden cardiac arrest. My neurologist required an EKG one week after taking methadone. I will need another one if I increase the dose. You might want to ask your prescribing physician about this.
Yeah he mentioned it however I have taken it for a week before and was fine along with other opiates but you are correct people need to be careful. I wish these doctors can find a non opiate that makes u feel normal and not a. Zombie
I’ve been on 3.5 ml of liquid methadone for a few years. I take it at 7pm nightly and works wonderfully. I have recently developed a problem with the need to urinate at night bringing on some RLS.
I take 5mg of Methadone in the evening at 6PM and 250mg of Pregabalin around 9PM. I started Methadone 10 months ago and it almost completely eliminated my RLS symptoms. I noticed that Methadone started working better after a few weeks/months on it. I got up to 12mg but went back to 5mg because I didn't notice a difference in efficiency in terms of RLS symptoms, but I had mild nausea and shortness of breath especially when exercising at peak dose (12mg at night). With 5mg I have no noticeable side effects and I sleep tremendously better. I can now go to sleep without having to stretch for hours and I don't wake in the middle of the night with the urge to move.
From my experience, from what I understood from the scientific literature, and from what my sleep specialist explained, you should only take it at night except if you have RLS in the day and you should have started at a very low dose. If you just started Methadone, you should have started at 0.5mg and gradually increased. I'm saying this based on the short description you provided above. You shouldn't base your treatment on what I said, I'm no doctor. But you could discuss your treatment with your doctor.
But how do you know which drug is working if you take 2 drugs ?
Also, did u feel the methadone didn’t take all the symptoms away at first and worked better over time u said or just met the side effects got better
First question: I have been taking Pregabalin for 5 years. It helped my RLS, but I still had a lot of trouble sleeping. As an analogy, it was like putting ear plugs in a concert. I went as high as 400mg of Pregabalin, it wasn't more efficient, but I had a ton of side effects. I also tried Pramipexole for 6 months and started having augmentation (RLS during the day and RLS worst than ever at night). It took 3 months of weaning to get off it. Of course I tried all the different diets, supplements, stretching, massage, etc. Nothing works. After spending a night of monitoring at a sleep clinic, the sleep scientist prescribed Methadone and since then I've been sleeping.
As per your second question, there's two things. First, since I started Methadone, my RLS symptoms got less intense over a period of months. After 6 months on it, I noticed I stopped waking in the middle of the night. Second, I gradually reduced my dose to 5mg because the side effects (nausea and shortness of breath) at 12mg (my max dose) were too much. So I never got "used" to these side effects, I reduced my dose because of them. 5mg is the minimum working dose in my case. I tried going down further, but the RLS was too much.
I take 15mg of Methadone two hours before my bedtime of 11pm. It is not a great cure by itself for me. I also take 1mg Nepro patch. Together it helps about 70-80%. Methadone seems like it reduces the intensity of the RLS symptoms but not the frequency. I think of it as palliative rather than therapeutic. Methadone doesn't make me feel much different except a little sleepy. I suspect it is very addictive.
Last week I forgot my meds while travelling. It was horrible for three days. I was able to secure some Sinemet 10mg (DA) but it didn't seem to help. I then tried some Kratom and Pot because they are legal in Colorado otc. It helped about 30%. I can only speculate that the some of the high intensity and frequent RLS symptoms (10 hours straight) were from sudden withdrawal. I welcome any comments about coping with withdrawal of Methadone and/or Neupro patch.
I was just prescribed 5 mg once a day. From your experience, what is the best time to take a dose? I have to quit Tramadol concurrently. I will start after 12/8/22 when I get a baseline EKG to make sure my heart is normal.
I've been taking 5mg Methadone at night for about 4 months. Z E R O episodes since. Z E R O side effects. Ropinerole worked OK, but the nausea....well, nausea!
I started 5 mg methadone on 12/8/2022 and I tried increasing to 10 mg but my ankles have swollen. Is this concerning, you think?
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