Restless Legs Syndrome (RLS) Discussion Board

Hi Folks,

I started methadone last week. So far it's working pretty darn well. My doc had me start with a 10 mg pill but cut it into quarters and work my way up from there. I'm taking 15 mg and my symptoms are under control. I've been off the mirapex for 3 whole days!

My questions are: does anyone experience super sleepiness? I'm sooo tired. I'm wondering if it will get better once my body gets more used to the drug.

Do you have to take more methadone as time goes by or do you pretty much stay on a stable dose?

Any tips for getting used to the new drug?

Thanks for all of the past advice - Zach especially! You've all made my transition to opiods really smooth.

Kristi

Hi Kristi.

Methadone can make people sleepy. Were you taking any other opioids before taking methadone? Usually is the first few days on any of those drugs that are the worst as far a sleepiness. Gosh, I remember taking Vicodin after various surgeries and I was knocked out cold. It did the same thing when I started taking it for RLS. Then after about a week, it started doing the opposite, and keeping me awake and giving me energy.

When I switched to methadone, I no longer had that energizing side effect that kept me awake at night. But I've never had sleepiness from it either. Many people do have some sleepiness. Some people take methadone at night and a different opioid during the day, one that doesn't make them sleepy. I guess you'll find out over time how the methadone affects you, and then you can decide what to do from there.

It's great that you're getting relief from the RLS. It's a nice feeling isn't it.

wow 15 mg already. I started Methadone on Feb 11th, and I'm still taking 2.5mg and will until the 18th. In fact I wont get up to 7.5mg until March 25th. I've not noticed a difference with 2.5mg, in fact I thought I had an increase of pain after taking it, but who knows. I didn't grow a 3rd arm or have a foot growing out of my head. I'm happy to hear its been good for you that gives me hope.

I wouldn't be surprised if the dose was making you sleepy and that some of that will wear off once your body is more used to it.

Opioids seem to make me restless though, so I'm interested to get to 5mg just to see if that stops.

Yes, opiates make pretty much everyone sleep when they first start them, although 10mg is a pretty significant starting dose if you've never been on opiates before. Personally I started at 15mg but I also have built up a large tolerance to many opiates over the past couple of years due to my abusing them.

Originally I started out with #90/month with 3 pills a day. However since things have been straightened out I am on a relatively stable dose of 15 - 20mg per day depending on how bad it is.. Some nights I rough it and end up sleeping relatively well, while other nights I really need the extra 5mg.

I became leveled out at a consistent dose about half a year ago, with #100/month but recently did ask for an increase to #110 so I have 20 extra pills to carry me through the month. I made the request hesistantly, but I feel like it was a good choice as I can tell the difference between having more and less a lot easier now that my dose only tends to deviate by 5mg.

Unfortunately some people don't get over the sleepiness opiates cause, and methadone in particular. Some people just can't take high enough doses. Aiken had so much problems that he takes Hydrocodone in the daytime and his Methadone in the night/morning, and only ever a little bit.

If the drowsiness doesn't get better after one to two weeks, or reaches a point where you can't stand it before that time, you should ask your doctor about cutting down your total supply and then supplementing that with an opiate you can take during the day, such as Hydrocodone, or Tramadol (Ultram). Don't take Tramadol with SSRI's or anything that reduces the seizure threshold though.

Are you taking 15mg all at once? I take mine over the course of 3 - 4 hours at 5mg a dose.. Spreading it out over the day might give you better relief at a lower dose though, if you haven't tried that. It is possible you will see increases in the future, it depends on how bad your RLS progresses. Hopefully it will give you years of relief though - that's what I'm hoping.

Ack! I just saw this thread after I posted a somewhat similar intro. post in the other, longer methadone thread. I guess if anyone would like to respond to both of our experiences, just post in this thread and I'll look at it. Sorry for spreading out such a similar type inquiry to another thread.

emmettdigger wrote:Hi Folks,

I started methadone last week. So far it's working pretty darn well. My doc had me start with a 10 mg pill but cut it into quarters and work my way up from there. I'm taking 15 mg and my symptoms are under control. I've been off the mirapex for 3 whole days!

My questions are: does anyone experience super sleepiness? I'm sooo tired. I'm wondering if it will get better once my body gets more used to the drug.

Do you have to take more methadone as time goes by or do you pretty much stay on a stable dose?

Any tips for getting used to the new drug?

Thanks for all of the past advice - Zach especially! You've all made my transition to opiods really smooth.

Kristi

Hi Kristi - here's my experience.

I started at 10 and needed to go to 15 in about 4 months, but waited at least 8 months before I moved to 15. I was told I likely should have started at 15 anyway. About a year later, I started having breakthough. I waited several months as it got worse, then the doc increased again. That was about a year ago. Once again, I'm having breakthrough about 1/4 of the time.

I have read that few people need to increase. Apparently I am one of them. Few of us have been on it for long enough to know. I've been on it for 3 years.

When I started I was also withdrawing from a benzo and was very sick. So, I don't know if I felt tired from it. By the time I finished the withdrawal (about 7 months), I think I noticed only a bit of daytime fatigue, but not much. With each dose increase, however, I've felt worse during the day. More tired, low energy, with headaches (think it may be daily withdrawal). By now, as I approach year 4, I am sorta tired of it all. I am thrilled I have few RLS issues - almost none compared to before - but I just wish I could have more than simply freedom from RLS...I want my old life back. Greedy, huh?

The only tips I have are to carefully consider if you want to space your doses. One of the things I've been told is that if you take it once a day, your dependence issues are much less than if you take it multiple times a day. That's because it gets at least a good bit out of your system before you take it again. Not completely because of the long halflife, but a lot. If you take it twice a day, you change that.

If you are not worried about having to switch any time soon, thinking this will work for a long time, then take it however works.

One other potential thing you could do. Switch to taking 5 to 10 mg when you get up or sometime before noon (given that you work "regular" hours), and use a shorter half life opioid at night. You may not be so tired during the day, but still have good coverage. That of course is if you have RLS during the day. Another option: see if you can get away with 10 mg at night and use tramadol - lowish dose - during the day. It can be a bit energizing. You would stay "covered" all day and the tramadol might help with the tiredness.

Initially, I had no effect when I would take the methadone. Over the years, that has changed. Now it does wire me. Not sure if that is the right word, but when I take it, I finally feel OK for the first time during the day, so I want to stay up and accomplish things. This is getting very hard to handle, to say the least, as most nights I want to stay up until the next morning

I know what you mean, Ann, about wanting one’s real life back. I want to fix it and have it stay fixed. If it will help to add to the fund of knowledge, here is my experience with methadone and side effects I’m dealing with so far.

I’m lucky, as I mentioned elsewhere, that I don’t have daytime symptoms unless I’m stuck in the car or a meeting or have other aches and pains that can cause rls to act up, too.

Even with the side effects from methadone, I think I actually feel more like myself than I have for a while. I think the Mirapex/Ambien combination was contributing to some depression – although it could just have been the effect of several years of only 6 hours of sleep a night.

I started methadone in late January at 5 mg. 2x a day, then 7.5 once a day, and still woke at midnight kicking. I’ve finally settled in to 10 mg. a day taken sometime between 4 pm and bedtime – I’m still trying to narrow that down. After finding I could sleep pretty well with 10 mg, I decided to back off again and try 7.5 because I’m drowsy in the daytime. But, sure enough, at midnight I awakened kicking again. So I’m back to 10 mg.

Drowsiness: I’ve been taking naps in the car at lunch time and mid afternoon – 10 “at a time seems to help. And I pull over if I’m drowsy even if I’m close to home. When I try to get some real work done, I just want to close my eyes. I’m super sleepy when I go to bed at about 9- 9:30 and – except as noted below – generally sleep pretty well. It’s wonderful, and feels like much better sleep than with Mirapex/Ambien!

Extremely dry mouth: I wake up two or three times a night with my tongue stuck to the roof of my mouth. I’ve started using biotene products on my dentist’s recommendation. I’ll let you know how they work; I think it takes a few weeks to see an effect.

Also I’m pretty itchy, but that may have started to abate.

Thanks once again for each unique experience. You are all so gracious. I treasure your knowledge and advice.

Maria

my doc gave me a 10 mg tablet and suggested I take 2.5 mg and work my way up to 10 as needed. I started like he recommended but for the first few days, I needed 15 mg. I was transitioning off Mirapex and read on another thread that when you go off Mirapex, your RLS can get worse. I think that's what happened the first two or so days because now I"m taking 10 mg and doing pretty well. I do get the odd twitch around midnight but it's just one or two, then it stops. I take 5 mg around 7 and the rest at around 9. I don't have all day RLS just late afternoon and evening symptoms.

I do have experience w/ opiates - a lot of recreational use as a college student. I started on the oxycodone - doc gave me 5 mg but it would only work for a short time (max 2 hours).

I'm still sleepy but not as bad as when I first started. I notice myself getting tired in the afternoon even though I take it at night. I think it will probably get better.

Thanks for all the suggestions folks!

I think something else to consider is even though many of us are able to get to sleep, we may not be getting the best quality of sleep, still. It could be any number of reasons, like periodic limb movements, or just not getting enough restful state sleep for whatever reason, and that might also cause some of the daytime drowsiness.

Zack you bring up an important point, about quality of sleep, not just being knocked out for a few hrs. Does anyone know of a home device that can measure sleep, or limb movements while we sleep.
Thanks Bill

Bill, it's so true that quality of sleep makes a huge difference. Ever go to sleep and feel less rested when you wake up that you did when you went to bed? That's how I feel most days. It's like, why bother even sleeping at all?! I've got to say, though, that things have been better recently. I've made some huge changes in medication that seem to help. For me, I'm pretty sure it's the PLMD that makes me have horrible sleep quality.

I know we've discussed this device before here, but I don't think anyone has tried it. I think some doctors use this with patients to track sleep quality at home. http://www.sleeptracker.com/a/sleep-tracker.php?source=adwords&kw=sleeptracker

Someday I'm going to get me one of these. But I'm pretty sure the best indicator of how we sleep is how we feel after we wake up.

Back to the question of home devices - I was thinking that it's not the SleepTracker watch that doctors use. It's this thingy (thingy being a technical term for device): http://actiwatch.respironics.com/

or this thingy: http://pamrl.respironics.com/

Actually there is a whole list of thingies: http://www.minimitter.com/products.cfm

I have no idea where to get one of those Actiwatches or how much the accompanying software costs. It seems like sleep doctors should be using things like that for those of us who have PLMD, instead of hooking us up to 5000 wires in a sleep study, then no matter what the results are, telling us we have sleep apnea and trying to give us a CPAP machine.

Gosh, I should try to get back to sleep. My dog woke me up at 4am to go out, and I haven't gone back to sleep yet. Hmm, someone should do a study on dogs causing sleep problems...

And on further investigation (go back to sleep, woman!) I found this:

http://www.theactigraph.com/index.php?o ... &Itemid=87

Dr Rye ONLY has his patients use actigraphy. He send them home with one for a week. It's much less expensive and gives him much better data. I was just re-reading in the Clinical Management of RLS last night that PSGs (full fledged sleep studies) are NOT warranted in RLS.

I for one , felt like I had never slept when I woke up in the morning , and that was before I was taking any medication.

ONce I got on Requip, and while it worked, it handled not only my Rls but also the Plmd. and voila , I woke up with more energy than I had in years.

then the bomb hit and the requip quit working and now I am on other drugs, and the day time fatigue is back.

So for my 2 cents , if you can get anything that stops the PLMD, and can sleep thru the night , your gonna wake up refreshed.

Which brings me to. Is there any drug yet they use exclusivly to control the PLMD, or is that in the same boat as the RLS animal. no cure in site.

softtail