Central and Obstructive Sleep Apnea

[debbluebird]

Just had another sleep study done. Confirmed that I now have central as well as obstructive sleep apnea. Originally my pressure was 20 in 2009. I couldn't tolerate that. So then I was at 18 and finally 16. Then in 2014 I had to get a new machine and they set it at 15.5.
Then in 2015 I felt that something was wrong. Had a study done in December which wasn't conclusive. Then this last one in March. It takes so long to get appointments. So now I'm supposed to get a Bipap machine and the settings will be 23 and 19. During tht last study they took me all the way up to 25 and something. I also have RLS and PLMs. I have been taking Methadone for the last five years. I also moved to high altitude in 2011, 8,200 feet. Those are the two causes. I can't move. So I decided to take less Methadone. I only take 15 mg a night. I returned to Gabapentin. I don't think this will work, as I lie here at 1:30 am.
I am at a loss.

[kteague]

Hi Deb. I saw on the RLS forum where you'd posted about your results. (I'm sleepdancer over there.) Did your doctor mention an ASV machine if the bi-level doesn't work as hoped? I encourage you to stay on top of your daily results so if it is problematic it doesn't drag on. Seems you are in a difficult predicament, where the very medicine that allows your legs to be calm enough to sleep may be contributing the central component of your sleep apnea. Do you know based on old tests if you had OSA without centrals before you went on Methadone, or were you already on it when your OSA was diagnosed? I wish I could offer some technical help, but my garden variety OSA leaves me totally unable to help with CSA issues. I do remember just recently seeings posts about what pressure support between IPAP and EPAP on a bi-level is generally considered best for using a bi-level with centrals. You will probably be asked here about the details of your settings and the results reported by the machine. It's the only way to get targeted replies. It can feel like a lot when one has been through so many years without much relief while combating multiple issues. Hopefully this recent change will be a step toward getting you some relief. Your situation has been one of the most intractable I've followed, and I wish you well going forward.

[debbluebird]

When first diagnosed, I was not taking Methadone and I didn't have any central sleep apnea.

[Julie]

When's the last time you explored getting off the methadone? It might be difficult, but relatively short term, and unless some change in your routine is made, whether this or another one, things aren't likely to improve.

[Sleeprider]

Deb, a standard bilevel/BiPAP/VPAP machine is not likely to remedy opioid induced central apnea, however most insurance requires that you "fail" at CPAP, then BPBP, before you are issued the machine that will work, bilevel ASV (adaptive servo ventilator). It is a more expensive machine that provides pressure to resolve obstructive apnea, but can also provide pressure support to cause you to breath during a central apnea. Please be aware that the likely solution to your problem is either one failure away, or try talking to your doctor and ask him to be honest about the options for bilevel therapeutic devices, and what is likely to work on your complex apnea. I have no doubt bilevel will be more comfortable given your very high pressure prescription, but without the ability to induce you to breath during CA, it is unlikely to be successful.

[debbluebird]

I stopped Methadone yesterday. Going through withdrawal.
Thanks for all info.

[Julie]

Wow, good for you, but are you supposed to 'cold turkey' methadone? Maybe talk to your doctor about doing it gradually... you don't want to sabotage the effort!

I hope you feel better fast though!

Do you know how long it takes before most of the effect of the Rx is gone? I imagine it will take a little time before the effects you do want are obvious.

[kteague]

I stopped Methadone yesterday. Going through withdrawal.
Thanks for all info

Yikes! I think I remember you saying you've been weaning down, hope I'm right on that. That took a lot of nerve. The thing this will tell you is if you continue to have centrals or not. If the centrals go away, you have some tough decisions to make. I think you've already been through the traditional meds for limb movements, and this is why you're on methadone, right? If there is no other solution to your RLS and limb movements, there is always the possibility of using the med along with an ASV machine. Keep us posted on how it is going.

[Julie]

Oh! That's interesting - I had no idea methadone was used for anything else but as a substitute for heroin! Really?

[kteague]

Oh! That's interesting - I had no idea methadone was used for anything else but as a substitute for heroin! Really?

Julie, I just learned that in recent times by frequenting the forum on the RLS Foundation website. Admittedly I was taken aback. I believed, and still believe, there is not enough oversight on the use of methadone in regards to the potential to cause central sleep apnea. I'm a bit extreme, but I wish EVERY patient on methadone was assessed for CSA once they've reached their targeted dosage. But aside from that, I know first hand how bad RLS/PLMD can destroy ones sleep and life, and the extreme cases live in daily hell as well as at night. Anything that eases suffering, I am not opposed to. I've read stories over there that make me feel like crying. They people have exhausted the gamut of meds generally prescribed, and most have gone through augmentation hell and withdrawal like I did. Prescribing methadone still isn't mainstream, but some recognized sleep doctors are staunch believers in its value and are seeing patients find relief. Had the TENS Unit not worked for me, I would have been forced to go to stronger drugs. I just don't think it should be the first line of treatment. But yeah, I was surprised too.

[Julie]

That is interesting because many decades ago I would help set up patients on TENS (neuro office) for various problems, but it didn't necessarily work all the time by any means... but it was still early days for that kind of thing.

[debbluebird]

I've been on all of the drugs. When I started Methadone, I was on five drugs at the same time. I had augmented on Mirapex. I was at the hospital at the time for knee replacements. My leg was jumping a foot off the bed, literally. It was Valium, ativan, darvocet, flexeril, and gabapentin. At some point they threw in a antidepressant. My current doctor at the time had no experience. I started a new sleep doctor and new PC. That was when the sleep apnea was diagnosed. It was a few months later that Methadone was started so I could wean off the other drugs. I was a zombie. I only ever took 15 mg of Methadone through the night. Drug addicts are given 100 to 150 mg a day. Weaning off of it hasn't been too bad, except I can't sleep. My RLS/PLMs are going. The doctor started me back on gabapentin the other day for it. I had taken one Methadone Friday during the day because my leg was bad. Then started the gabapentin that evening. Took another Methadone Saturday. I slowly increased the gabapentin.
I was able to sleep an hour today after lunch. But not since. Leg won't let me. I thought that by getting through the withdrawal it might get better. I don't know how long it will take.

[kteague]

That is interesting because many decades ago I would help set up patients on TENS (neuro office) for various problems, but it didn't necessarily work all the time by any means... but it was still early days for that kind of thing.

Right. Even now for me it is not always fully effective, but it nearly always helps at least a little bit. And sometimes the failure is on me - stubbornly refusing to use 4 electrodes instead of 2, or using electrodes beyond their effectiveness to save money. I read where one woman who said it didn't work well for her was taping her electrodes on to make them last longer. I've found that good contact makes the difference. If it's not sticking good, it's not working good. And the further removed I was from augmentation, the more effective it became. Some nights I have to repeat it if the night gets too long and miserable. I think out of the past 5 years I've had maybe a dozen really bad nights that nothing could help, many not-so-good but tolerable, but plenty of decent nights. After the hell I'd been through for 10+ years, this seems good. Just based on my experience, I think there's some cumulative effect. I have heard a few people say they tried the TENS but it did not help their legs. I doubt it will help everyone, but I wonder if perseverance might turn things around for some. Same as with CPAP - don't give up too soon. I have no confidence in TENS being of much help to those with augmentation, or even to a wide segment of sufferers. Just glad to be one it worked for. For the benefit of those reading this who may be struggling with RLS/PLMD, it takes a long time to retrain the brain. With this disorder, there's no clear across-the-board cause, so treatment is more trial and error than not. I cannot attribute ALL my "success" to the TENS alone. While using it I also embarked on efforts to become nutritionally sound. And it took a couple years to get my brain calmed down and re-learn how to sleep without constant arousal. That effort alone I could write a book about, but it was an endeavor that has paid off greatly. My heart goes out to anyone dealing with this.

[debbluebird]

I'm having a rough night. I think because I am so tired.

[Julie]

Hi, don't envy you right now, but please don't give up... you now have over a day's worth of effort behind you! And you've just come to this forum where you will get help - just need to get these few days overwith and then explore what's going on otherwise, if anything much - you don't know how you'll feel or sleep yet post the methadone. And there are lots of people supporting you.