Every night, when I take my 10 mg of Methadone (plus 5 of Klonopine) I get very sleepy, it's a nice feeling and it lasts about 3 hours. I wake up with RLS....the wave finally washes over me and I busy myself with something. I go back to bed and wake up 2 hours later, same thing. I know it's strange, but then I usually drink coffee and can sleep another two hours.
I can't take anymore of the Methadone, because I'm afraid I'd nod off at bad times. It aleady happens sometimes (I've gone to sleep standing up reading the paper!). But what I wonder is if the Methadone doesn't just help me get to sleep but does nothing for the RLS?? I'm still getting RLS, at least two or three times a night.
I'd like to hear your thoughts on this. I'm retired now, and usually have the luxury of sleeping those extra hours.
Are more people combining this with Mirapex -- and how are you doing? Are you avoiding the augmentation problem?
I'm just afraid I've gotten addicted to one more drug that really isn't helping the problem. Or maybe I'm deluding myself -- certainly something I've done before!
One more on Methadone
Hi D, Although I am not on "meth" thought I'd just check in. Sorry your not sleeping through the night. Was a little confused on the sleep vs rls question. But, if I get it right, somewhat the same thing happens to me with my PLM and the neurontin and ultram/vicodin I take. That is, I may sleep wake up with plm, sleep wake up with plm or what's worse...I lay in bed with the plm/rls being very quiet and still cannot sleep (chronic insomnia). And even if I sleep/wake, sleep/wake it is not nearly as long as your cycle. When I sleep, it's usally best after 5 am..so I think it's related to the circadian rhythm or sleep cycle (for me). I suspect we all develop physical dependence on a drug but does not mean we are psychologically addicted.
You're lucky the coffee doesn't keep you awake more.
Guess I want to be on the positive side and say, "WOW D, you get that much sleep a night." Just kidding but I am jealous!
Other "meth" users will chime in I'm sure. Maybe it's the combination of Klonopin and Methadone although I would think that would make you more sleepy. Wonder if taking one at bedtime and one after your first awakening would make the sleep cycle last longer. Of course increasing one or the other might make the sleep better too. But, if you are sleeping during odd times more might not be better. I think the 1/2 life of Klonopin may possibly have something to do with those episodes or at least make lots of others sleepy after they awaken. Maybe the methadone too. Don't remember your history or what else you tried so apologize for that.
Mostly, wanted to say hi and wish you luck. But, am quite happy that you are getting some sleep. What's your doc say about this?
M.
You're lucky the coffee doesn't keep you awake more.
Guess I want to be on the positive side and say, "WOW D, you get that much sleep a night." Just kidding but I am jealous!
Other "meth" users will chime in I'm sure. Maybe it's the combination of Klonopin and Methadone although I would think that would make you more sleepy. Wonder if taking one at bedtime and one after your first awakening would make the sleep cycle last longer. Of course increasing one or the other might make the sleep better too. But, if you are sleeping during odd times more might not be better. I think the 1/2 life of Klonopin may possibly have something to do with those episodes or at least make lots of others sleepy after they awaken. Maybe the methadone too. Don't remember your history or what else you tried so apologize for that.
Mostly, wanted to say hi and wish you luck. But, am quite happy that you are getting some sleep. What's your doc say about this?
M.
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ViewsAskew
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Doety, could it be that this just isn't enough for you? If I remember correctly, the study about methadone and RLS said the average dose was about 16 mg with the range from 5-30 mg. So, at 10 mg, you are below the range.
Would your doctor be willing to give you and additional dosage for a month to allow you to work with it to see what actually eliminates the RLS?
Per the sleepiness, I get no sleepiness from methadone by itself - I don't doubt that you do, but maybe it's for other reasons. Maybe it's more the K causing it. Or maybe it's that you haven't slept well and it initially takes away the RLS and you are just plain tired and want to sleep. Maybe you could talk to the doctor about taking things at different times - maybe taking the M, say, at 7 PM, then the Klonopin at say 11 PM about an hour before sleep so it helps make you sleepy. Those are obviously just "made up" times, but you get my drift I hope.
I started at 10 mg of M, but it wasn't enough for me. When it's not enough for me, I can stay awake easily at that dose and even fall asleep, but wake up after one sleep cycle - about 90 minutes. It sounds much like what you are experiencing. After awhile, we went to 15 mg. That worked for me for about 2 years. Just recently, I went to 20 mg. I actually take 17.5 each night and then if I wake up, I take the remaining 2.5 mg I have left.
Per your worries about addiction, I have had similar worries. I have been reassured by Dr B that he has no problems in his patients regarding addiction OR dependence when they take only one dose a day. It's the multiple doses that creates a problem. I don't know what splitting a dose would do - because this might help, too. Maybe a letter to Dr B is in order to find out how that changes the potential for a more difficult withdrawal due to increased physical dependence.
Hang in there.
Would your doctor be willing to give you and additional dosage for a month to allow you to work with it to see what actually eliminates the RLS?
Per the sleepiness, I get no sleepiness from methadone by itself - I don't doubt that you do, but maybe it's for other reasons. Maybe it's more the K causing it. Or maybe it's that you haven't slept well and it initially takes away the RLS and you are just plain tired and want to sleep. Maybe you could talk to the doctor about taking things at different times - maybe taking the M, say, at 7 PM, then the Klonopin at say 11 PM about an hour before sleep so it helps make you sleepy. Those are obviously just "made up" times, but you get my drift I hope.
I started at 10 mg of M, but it wasn't enough for me. When it's not enough for me, I can stay awake easily at that dose and even fall asleep, but wake up after one sleep cycle - about 90 minutes. It sounds much like what you are experiencing. After awhile, we went to 15 mg. That worked for me for about 2 years. Just recently, I went to 20 mg. I actually take 17.5 each night and then if I wake up, I take the remaining 2.5 mg I have left.
Per your worries about addiction, I have had similar worries. I have been reassured by Dr B that he has no problems in his patients regarding addiction OR dependence when they take only one dose a day. It's the multiple doses that creates a problem. I don't know what splitting a dose would do - because this might help, too. Maybe a letter to Dr B is in order to find out how that changes the potential for a more difficult withdrawal due to increased physical dependence.
Hang in there.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Interesting.
I know my doc expected I would be between 15 - 25mg, and right now I do my best to make 15 work. I usually take it all at once.
I don't have problems with nodding off, personally, but without getting more detailed info from you it's hard to say if the methadone is really causing the problem, especially if you have been on steady dose for some time.
Since you've mentioned getting interittent hours of sleep, drinking coffee when you wake back up sometimes, etc.. I would you simply suffer from lack of sleep and when you do take the meds and they work for that short while, that is why you are able to fall alseep.
I've fallen alseep standing up and things like that, but this is because I was engrossed in some task and refused to go to bed.
Have you tried taking more than one dose? like 5mg spaced out throughout the day, and like has been mentioned, you may simply need to increase your dose a little bit too.
I've never personally had problems with it wearing off a couple hours later. Usually I would take some, and symptoms would diminish, sometimes taking just a little more until they finally went away. Methadone and other narcotics usually cause insomnia as a side effect as opposed to making you nod off. The only way to consistently get that effect is if you are taking intoxicating doses on purpose, in my experience.
I think maybe its your lack of sleep catching up with you, and hitting you when the methadone does provide some relief, as opposed to the methadone itself making you nod off like that.
I know my doc expected I would be between 15 - 25mg, and right now I do my best to make 15 work. I usually take it all at once.
I don't have problems with nodding off, personally, but without getting more detailed info from you it's hard to say if the methadone is really causing the problem, especially if you have been on steady dose for some time.
Since you've mentioned getting interittent hours of sleep, drinking coffee when you wake back up sometimes, etc.. I would you simply suffer from lack of sleep and when you do take the meds and they work for that short while, that is why you are able to fall alseep.
I've fallen alseep standing up and things like that, but this is because I was engrossed in some task and refused to go to bed.
Have you tried taking more than one dose? like 5mg spaced out throughout the day, and like has been mentioned, you may simply need to increase your dose a little bit too.
I've never personally had problems with it wearing off a couple hours later. Usually I would take some, and symptoms would diminish, sometimes taking just a little more until they finally went away. Methadone and other narcotics usually cause insomnia as a side effect as opposed to making you nod off. The only way to consistently get that effect is if you are taking intoxicating doses on purpose, in my experience.
I think maybe its your lack of sleep catching up with you, and hitting you when the methadone does provide some relief, as opposed to the methadone itself making you nod off like that.
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SquirmingSusan
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Hi Doety. Methadone doesn't make me sleepy, either, so I don't know what to tell you. But I agree that maybe you aren't taking enough to wipe out the RLS. Or maybe it just doesn't work for you?
To me, methadone seems like it would be the perfect RLS drug IF it made me sleepy. I wish SOMETHING would make me sleepy at night! (and keep me awake during the day)
The coffee thing is interesting. But then again I think that most stimulants do raise dopamine levels, so why not?
To me, methadone seems like it would be the perfect RLS drug IF it made me sleepy. I wish SOMETHING would make me sleepy at night! (and keep me awake during the day)
The coffee thing is interesting. But then again I think that most stimulants do raise dopamine levels, so why not?
Susan
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cornelia
I'm not on meth, but OxyContin and Oxynorm. Between 2400 and 0400 I wake up lots of times because of PLM's. After that, I sleep continually until 0800. I still have massive energy problems, but I don't think that will ever get much better. I also take 900 mg Neurontin. I am not tired when I get up.
I personally think that what drs Montplaisir ans Winkelmann said on the Discovery Health video: for many people with severe/refractory RLS a bit of a narcotic and a bit of a DA work best. I also think that, contrary to some research says, that narcs do not work that well for PLM's.
Corrie
I personally think that what drs Montplaisir ans Winkelmann said on the Discovery Health video: for many people with severe/refractory RLS a bit of a narcotic and a bit of a DA work best. I also think that, contrary to some research says, that narcs do not work that well for PLM's.
Corrie
I agree with what's been said so far-- D, it may be that 1) your sleepiness is from the klonopin and not the methadone--in which case, maybe lowering your klonopin and increasing your methadone slowly will help with your RLS and lessen your fatigue 2) your leg movements are not responding to narcotics (which isn't uncommon) and you may need a small dose of DA or neurontin. You will just need to be careful about sedation--methadone, that large of a dose of klonopin + neurontin sounds too sedating. 3) methadone may not be the narc for you? There are genetics at play with how some people react to drugs. I did a bit of research today and found this online:
"It is estimated that about 5% of methadone patients are what is called aberrant metabolizers (Payte and Khuri, 1992). Each time methadone passes through the liver some is lost. For the average metabolizer the loss is minimal but for fast metabolizers the loss can be immense. Liver disease and alcoholism can cause a reduction of the liver's ability to perform normal metabolic functions, resulting in aberrant metabolism. This condition is very difficult to correct and the only way to help the liver would be to eat a low fat diet to allow the liver to rest while increasing the dosage of methadone. Split dosing can also help to correct aberrant metabolism."
Not saying you're an alcoholic but it does appear from a scattering of small reports that there ARE some patients that for genetic reasons chew through this drug very fast. Food for thought...
"It is estimated that about 5% of methadone patients are what is called aberrant metabolizers (Payte and Khuri, 1992). Each time methadone passes through the liver some is lost. For the average metabolizer the loss is minimal but for fast metabolizers the loss can be immense. Liver disease and alcoholism can cause a reduction of the liver's ability to perform normal metabolic functions, resulting in aberrant metabolism. This condition is very difficult to correct and the only way to help the liver would be to eat a low fat diet to allow the liver to rest while increasing the dosage of methadone. Split dosing can also help to correct aberrant metabolism."
Not saying you're an alcoholic but it does appear from a scattering of small reports that there ARE some patients that for genetic reasons chew through this drug very fast. Food for thought...
Josh
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ViewsAskew
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Interesting post, Josh. Thanks.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I've been taking 10 mg methadone 3 times a day for several years. At first it made me sleepy but as I got used to it the sleepiness stopped. Recently, though, the dosage didn't seem to be enough but rather than increase I decided to take a vacation using mirapex (which I used about 6-7 years ago). My wife said, you will be sorry. You don't remember but I do. That drug made you feel miserable all the time. After a week of mirapex I remember. She's right. With methadone I feel like a human, with mirapex I feel like a creature pretty much drugged out with a not very nice drug.
You can tell that boy went to college. Thanks so much for all the thoughts and opinions and suggestions.
You're probably right that I might not be taking enough; I will call my neurologist. Up to now, he's been very cooperative (he's the one who sends me two months worth though the mail.)
I think that little episode in the mountains where I had to walk around all night freaked me out. I do promise to take every precaution next time and keep them in several places!
About the coffee -- I know it sounds crazy, but there are a small group of us who can take stimulants like that and it helps. I guess it makes sense -- almost everything affects us differently from others. I think about the antihistimines, that makes others sleepy and put most of us on the ceiling.
I'm certainly getting more sleep than I did at one time, but not as much as I did while I could take Mirapex. Same old story --I would just like to get some sleep straight through and not wake up so often, then have to get up and ride out the wave of RLS until I can go back (if I can go back).
Ann -- I thought I remembered you saying that the M did make you sleepy; I must have misunderstood. It could be anything, but in any case, I conk out in funny places. As long as it's not while I'm driving.
One thing that hurts is that I'm exercising way more than in the past, on my way to losing weight so I can get a handle on diabetes. I know, with RLS, you're going to pay for it if you push yourself too much. And I've been doing about 1 1/2 hours a day.
That was quite an ad by Consumer Report. I did write them. Is there a place on the board that we're talking about it. It was so snippy!!
You're probably right that I might not be taking enough; I will call my neurologist. Up to now, he's been very cooperative (he's the one who sends me two months worth though the mail.)
I think that little episode in the mountains where I had to walk around all night freaked me out. I do promise to take every precaution next time and keep them in several places!
About the coffee -- I know it sounds crazy, but there are a small group of us who can take stimulants like that and it helps. I guess it makes sense -- almost everything affects us differently from others. I think about the antihistimines, that makes others sleepy and put most of us on the ceiling.
I'm certainly getting more sleep than I did at one time, but not as much as I did while I could take Mirapex. Same old story --I would just like to get some sleep straight through and not wake up so often, then have to get up and ride out the wave of RLS until I can go back (if I can go back).
Ann -- I thought I remembered you saying that the M did make you sleepy; I must have misunderstood. It could be anything, but in any case, I conk out in funny places. As long as it's not while I'm driving.
One thing that hurts is that I'm exercising way more than in the past, on my way to losing weight so I can get a handle on diabetes. I know, with RLS, you're going to pay for it if you push yourself too much. And I've been doing about 1 1/2 hours a day.
That was quite an ad by Consumer Report. I did write them. Is there a place on the board that we're talking about it. It was so snippy!!
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ViewsAskew
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You can find the Consumer Reports thread here: http://bb.rls.org/viewtopic.php?t=5405
Hmm, I could have said it made me sleepy....but I don't remember saying that. At least at this time, for me it's more net neutral. I'm not sleepy or awake, though sometimes slightly more awake (I think the RLS is gone and I am finally functional about 8 to 9 PM, so I feel awake for the first time all day). But, really, pretty neutral. Then, as the evening wears on, I can sleep when I want to because I don't have RLS. But, I still fight with going to sleep. I can stay up until 5 AM (and prefer to) but try to make myself try for sleep by 2 AM.
My best friend is like that with coffee - she drinks it in the evening and she immediately goes to sleep. And other drugs don't work in her system like you'd expect them to.
Hmm, I could have said it made me sleepy....but I don't remember saying that. At least at this time, for me it's more net neutral. I'm not sleepy or awake, though sometimes slightly more awake (I think the RLS is gone and I am finally functional about 8 to 9 PM, so I feel awake for the first time all day). But, really, pretty neutral. Then, as the evening wears on, I can sleep when I want to because I don't have RLS. But, I still fight with going to sleep. I can stay up until 5 AM (and prefer to) but try to make myself try for sleep by 2 AM.
My best friend is like that with coffee - she drinks it in the evening and she immediately goes to sleep. And other drugs don't work in her system like you'd expect them to.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Okay, maybe I'm just sleep deprived (ya think??) but I don't understand "I'm not sleepy or awake." You must sleep really late since you get to bed so late -- how do you feel the rest of the day...is it the "neutral" you referred to?
My body is just in full rebellion right now and it feels like I'm up all night. Not even coffee has been working lately. I know it's the extra exercise -- I keep hoping my body will accept it and adjust, but not so far.
still, I'm so happy about losing weight and will swap that right now.
My body is just in full rebellion right now and it feels like I'm up all night. Not even coffee has been working lately. I know it's the extra exercise -- I keep hoping my body will accept it and adjust, but not so far.
still, I'm so happy about losing weight and will swap that right now.
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ViewsAskew
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One of the things about this board (at least for me) is that it's really easy to think you said something and have no one understand what you thought you said! As you noted, sleepyness, anxiety, and other emotional states that happens when we're sleep deprived and drugged all contribute to making us less than lucid at times.
Um, let's see if I can answer your questions - implied and stated.
Time I get up: I tend to get up between 10 AM and 2 PM. It depends on how much work I have and if I have to get to a client for a meeting. I try to keep those to a minimum and schedule them in the afternoon, but.... I have never been able to get by with a small amount of sleep. Mirapex helped in that regard, but, I still don't feel any differently when I awaken (with Mirapex, I just couldn't go back to sleep).
How I feel during the day: For the first 2 to 10 hours that I am up, I simply function. I am not awake, but not really sleepy. It's more perennially non-optimal functioning, lol. My head is foggy, my brain doesn't work well, I don't communicate well, etc. But, I'm not really sleepy, just not functioning very highly. I've been this way for many, many years.
How I feel in evening: I finally wake up. I am motivated. I do things I stared at earlier in the day. This happens somewhere between 4 PM and 10 PM, though not at all on a bad day.
How I feel after taking methadone: usually I feel just like I felt prior to taking it, whatever that was, though more relaxed physically (the pre-RLS buzz is gone). So, maybe what I should have said is that the effect from it is neutral. In terms of not being sleepy or awake, by late evening, early morning (when the methadone is working), I guess that I mispoke - I really am usually more awake in my brain. There is an underlying physical restfullness, however, to my body. It's like now the RLS is gone, the anxiety is gone, and I can now sleep.
Does that make ANY sense at all????
Um, let's see if I can answer your questions - implied and stated.
Time I get up: I tend to get up between 10 AM and 2 PM. It depends on how much work I have and if I have to get to a client for a meeting. I try to keep those to a minimum and schedule them in the afternoon, but.... I have never been able to get by with a small amount of sleep. Mirapex helped in that regard, but, I still don't feel any differently when I awaken (with Mirapex, I just couldn't go back to sleep).
How I feel during the day: For the first 2 to 10 hours that I am up, I simply function. I am not awake, but not really sleepy. It's more perennially non-optimal functioning, lol. My head is foggy, my brain doesn't work well, I don't communicate well, etc. But, I'm not really sleepy, just not functioning very highly. I've been this way for many, many years.
How I feel in evening: I finally wake up. I am motivated. I do things I stared at earlier in the day. This happens somewhere between 4 PM and 10 PM, though not at all on a bad day.
How I feel after taking methadone: usually I feel just like I felt prior to taking it, whatever that was, though more relaxed physically (the pre-RLS buzz is gone). So, maybe what I should have said is that the effect from it is neutral. In terms of not being sleepy or awake, by late evening, early morning (when the methadone is working), I guess that I mispoke - I really am usually more awake in my brain. There is an underlying physical restfullness, however, to my body. It's like now the RLS is gone, the anxiety is gone, and I can now sleep.
Does that make ANY sense at all????
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.