Methadone - Sleep Apnea - pls read

[doety]

I wish I knew how many of us have sleep apnea along with RLS.
When Mirapex started augmenting, I went on Methadone. It worked well, although lately not so well. My doc seemed more concerned about the sleep apnea I was diagnosed with in '03. I hadn't been wearing the CPAP. Just seemed so much trouble when I was up all the time. I'm discovering maybe I was up all the time because I had sleep apnea. Since I've been religiously wearing it, I barely get up at night. Whew -- can't believe it.
However. The doc insisted on a sleep apnea test. [u]Apparently I now have "central" apnea, which is caused by Methadone.[/u] That means I'm not even trying to breathe at night. Right now I'm so freaked out by this, and the doctor's very concerned tone yesterday when he told me, that I can't make myself do research on it. They're delivering oxygen today and I'll pick up the necessary machine today and start using that at night. When I talked to the doc, he asked if I had been using the CPAP while taking the test and I said yes -- he was surprised.
Of course, he wants me to back off the Methadone. I'm taking Requip now and so far, so good -- no nausea. I take 1/2 of of .5 at the beginning of an evening meal, and 1/2 before sleeping. I'll go slow, the last two times I messed with the Methadone dosage, it didn't work well.
I hope lots of people will read this. If your partner tells you that you snore -- you probably have sleep apnea and it must be treated. Color me stunned that it could be a bigger problem for me than RLS. Right now, I'm sort of in shock, don't know what to think. baby steps, do what's in front of me, try to wrestle with this thing.

[Polar Bear]

Its excellent that you have been getting better sleep when wearing the CPAP. I know nothing about this condition but can imagine how this would have been disturbing your sleep.

But you've certainly had a bit of a shock to hear that you aren't trying to breathe for yourself at night. I've read before about medications that suppress the respiratory system but to hear how severe your condition is brings home to me just how powerful some medications can be.

I am glad the Requip is working for you, your dose is pretty low and hopefully you can keep it low.

The shock will pass and your strength will come to the forefront again.

[SquirmingSusan]

Hi Doety,
Opiate painkillers certainly can contribute to central sleep apnea, but don't always cause problems that way. (Or methadone wouldn't have gotten such a great safety profile over all these years.) Over time people accommodate to that side effect to some degree.

My first sleep study, when I was taking Requip, showed a far amount of central apnea. This fall when I had my last sleep study, I was taking methadone for RLS, and I showed almost no central apnea.

I'm glad you're getting those issues treated! Hopefully this will be what it takes to get you feeling great!

[doety]

Susan, I know I have a lot to learn about it, but what you said is encouraging. I can't tell you how surprised I was when both the doctor and the nurse just flat out said: Methadone causes central apnea. And central apnea seems like a scary thing. I guess I wonder why the previous doc (in the same office) would give that to me without telling me what could happen.

As I've said way too many times before, I'm sick of all of us being guinea pigs, taking medications meant for other problems and so not knowing really what's going to happen. People are so aghast at animals being used to test drug safety. Well -- we're being experimented on all the time.

Still, God bless those people at the Mayo clinic and elsewhere who are trying to find solutions to our problems.

[Neco]

Everyone should remember, opiates have CNS depressant effects. That's how / why people die from overdoses - they stop breathing.

Methadone is particularly strong in this area. Even though I backed off my dose, I know that at times in the early morning at my weekday job, I breathe a lot more heavily.

So if you took a test with the CPAP and you still stopped breathing, your doctor is right, you have no choice but to either reduce your dose and supplement, or get off it completely before it kills you.

Its unfortunate, but sometimes things don't work out in our favor. I hope the Requip works out for you. Taking it with meals is good, also take your night time dose with some crackers or other solid food snacks. That will help keep the nausea away. I had the same problem, until I started eating with my meds. But the headaches are what did it for me.

You can still potentially take an opiate with weaker CNS depressant effects. You should ask your doctor if he knows anything of similar strength to methadone, that you could try switching to.

Also, if you do on ocassion. Stop any alcohol consumption, no matter how weak it may be. I know some of us feel a small glass of wine with dinner is something most can get away with. But the truth is, no one on Methadone should be drinking alcohol either, even on special ocassions. It will only intensify the breathing problems, and as someone with apnea, that increases the risk by magnitudes.

[Wayne]

I was scheduled for a CPAP test yesterday, but had to reschedule it for next week because of the super snowstorm we had in the DC area. Average of 25 inches! I won't be able to leave my neighborhood for another day or two

[doety]

Zach, as usual, thanks for those words of wisdom. I've used oxygen the last two nights. When they delivered it, I went in the shower and cried. I hate the way it looks. But I'm estatic to report I just got eight hours of sleep last night and woke up feeling great.

I'm still taking Methadone and know I will have to back off it slowly (but I will ask the doc about a substitute). Right now, what I have to do is balance it with the Requip. I'm now splitting a .5 pill, taking half before dinner and half right before bed. A good friend, who's been on Requip 9 years, told me about taking it with the first bites of a meal to avoid nausea (and I haven't had any). So sorry you got headaches and can't take it.

I'm very aware of how you're supposed to stay at a low dosage (and so is the doc). I think I understand that I start filing down the Methadone and if that messes up my sleep, (maybe after a couple of days), I should slightly up the dosage of Requip. I'll have to talk to him about that because I really don't want to get into augmention. The delicate dance.

I don't drink, have sworn off the weed, have signed up for a weight reduction clinic at Kaiser figuring that would help, too. I will keep you posted.

[Polar Bear]

I think I understand how you felt when the oxygen was delivered. Sort of like having to admit to yourself..... gosh.... I need this stuff. !

And then consider what happened next ?? Wonderful - 8 hours sleep zzzzzzzz........

[doety]

I hadn't read that long thread about Susan, and then Ann, going to see Dr. B -- and all the problems Ann was having (how is that going???). You do know that every one of you could have a degree in phamacology, don't you?

Could someone tell me what is considered a low dose of Requip? I want to be so careful.

[doety]

Okay, yesterday I had RLS for 7 straight hours. Finally, I fell into bed, using the oxygen and slept for 5/12 hours. Woke up with it. Still have it.

Coincidentally, I went to the Denver RLS meeting yesterday morning where the doctor talked about turning to "naughty drugs" when everything else goes sour. He mentioned Methadone (he has no problem with it, says it never augments, although he figures someday, someone will), "Date rape" drugs used by a doctor in the right way, and marijuana. He said he couldn't find ANY studies on weed except anecdotally. I told him that our board gurus found it worked only so-so (that is, fine for some, no help with others).

ANYWAY, I figure I'm augmenting on Requip already. We talked quite a bit about augmentation. Still, some people in our group don't get it. One poor guy is still trying to use the damnable Sinemet.

What do you think? I've only taken Requip for less than a month. Couldn't I just stop it cold right now?????????????????????????? Help.

[Polar Bear]

doety, I don't know a lot about the pharmacology side of meds, but I suspect that if you've only been taking it for a month, then although stopping it cold is likely to mean your symptoms are more severe for a time, perhaps this length of time won't be too long.

If you decide to stop the Requip - Do you have anything to help cover you during this time, you had mentioned taking Methadone. Or see your doc for his support and ask what he will give you to assist. You are going to need something to assist with the withdrawal, and also even when that time is past, to replace the Requip.

The easier-on-the-body way might be to reduce slowly but this then drags it out.

I am sure you have already thought of all of this yourself.

Others will no doubt have good advice on this subject.

[doety]

What I also meant to say is that I'm still taking 20 mg. of Methadone, and I had only gone up to 1.5 of Requip --and that was only one night. Otherwise was splitting a .5 mg. tablet, before dinner and before sleep. This is ridiculous.

I can't tell where I was before I got the oxygen. I thought the Methadone wasn't working well, but how would I know, since apparently the sleep apnea thing was waking me up all the time. I need a test period to see what's going on.

[badnights]

I started augmenting my first week on ropinirole (Requip). My doc just kept upping the dose, til I finally got up the courage to tell him about augmentation, then we switched. I didn 't tell him he was supposed to give me something for the withdrawal (couldn't overload him). So I stopped cold after 3 or so months and started pramipexole. I stopped 1.5 mg nightly, and started 0.125 pramipexole. It was bad for a while there, but not so bad compared to what I've been through since. In fact, it wasn't nearly as bad as the augmentation itself, except for inefficient sleep. I gave in to temptation after 4 days and upped the pramipexole to 0.25, but I don't know if I was still experiencing withdrawal by then or just my background RLS . So for me it was livable, really.

That was a long time ago. A whole year .

[doety]

polarbear, I think you're right. the doc yesterday was talking about what to do when you augment and he basically said (and I think we all know this) is that you can feel like hell for a little while or a long while. I've still got some marijuana on hand and I think, by damn, I going to try it again. Even if I still have RLS, I'll feel better. (We're having such a debate in Denver about all this. We have tons of dispensaries, I have my little "legal" card, and yet one of the federal agents just arrested someone and said he's coming for the rest of us. I want to scream -- you have your little glass of wine or your martini to take the edge off. I can't drink, so would you mind if I just took a puff??)

I've been watching for this, because I had been warned by many of you that if you augment on two dopamine agonists, you'll surely do it on a third.

Oh -- the sleep doc I was talking about said he was starting to tell his augmenting patients that a little marijuana might be good to ease the pain at this particular juncture.

[ViewsAskew]

I'd stop it just to see. If it gets worse, it gets worse and then you know.

I augmented on three: pramipexole, ropinerole and Sinemet. Yet, I can still take pramipexole IF I take a small amount only a couple days a week. I've experimented and I still augment if I take it regularly. When that happens, I've just stopped it cold turkey and all was fine. Whether that's my body or whether you don't get that increased awful period when you stop it as SOON as you notice it, I don't know.

I've been experimenting with how much pramipexole I can take and have it still be effective, because I hate the side effects, but it's the only way I can sleep when I take a break from the opioids. Dr B isn't *making* me switch 2 days week, but he suggested it, particularly until we find something that works. I tend to become dependent very quickly, so we're trying to minimize that.

At any rate, I've found that I can't sleep at all when I take only tramadol, but as little as 1/6th of a .25 mg pramipexole tablet with it is enough to let me get about 6-7 hours sleep. I find that amazing. I tried 1/8th and it wasn't enough.

Not sure that would work for anyone else; I never needed much of them anyway, but just wondering if, when combining, a person can get by with much less of the DAs.