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Central Sleep Apnea / Auto CPAP Trial without Study
#21
RE: Central Sleep Apnea / Auto CPAP Trial without Study
I’m no expert, so this comment is a trial and error (vs diagnosis).

What if your O2 intuition has some truth?  Can you BORROW an oxygen concentrator and try and see what 98% SpO2 all night feels like?
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#22
RE: Central Sleep Apnea / Auto CPAP Trial without Study
What else was tried for RLS?
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#23
RE: Central Sleep Apnea / Auto CPAP Trial without Study
I mean, take it from me, even on nights I have relatively few apneas and those I do have don't drop low for long, I still feel like garbage if my oxygen level hovers around 90. If you don't mind spending a little extra, I got a Wyze camera with infrared for around £30. That makes it very clear that despite when the CPAP marks my apneas as obstructive, they're not because it's easy to see when I'm not breathing. It would, at least, show up if you're moving a lot during the night.

Even if it's not down to apneas, that doesn't necessarily mean you don't have sleep-disordered breathing that might be resolved with therapy. There are many, many more types of sleep disorders that can affect your oxygen levels (and your general feeling of crappiness) than just OSA or CSA. I do understand though - it's hard, you don't WANT to be sick, but you want something to explain WHY you feel like crap all the time and it's hard when you don't have that.
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#24
RE: Central Sleep Apnea / Auto CPAP Trial without Study
(01-07-2022, 09:36 AM)Ratchick Wrote: I mean, take it from me, even on nights I have relatively few apneas and those I do have don't drop low for long, I still feel like garbage if my oxygen level hovers around 90.  If you don't mind spending a little extra, I got a Wyze camera with infrared for around £30. That makes it very clear that despite when the CPAP marks my apneas as obstructive, they're not because it's easy to see when I'm not breathing. It would, at least, show up if you're moving a lot during the night.

Even if it's not down to apneas, that doesn't necessarily mean you don't have sleep-disordered breathing that might be resolved with therapy. There are many, many more types of sleep disorders that can affect your oxygen levels (and your general feeling of crappiness) than just OSA or CSA. I do understand though - it's hard, you don't WANT to be sick, but you want something to explain WHY you feel like crap all the time and it's hard when you don't have that.

Thanks for your input! But even if I had some other type of sleep disordered breathing, the fact that my blood oxygen is completely normal kinda tells me it wouldn't be much of an issue since even with other breathing issues, from my understanding it would still reflect in the oxygen numbers. Wouldn't it? 

I will see whether I will do one or not once my doctor decides to answer my mails, smh. But I don't think so. Kinda lost interest & hope now in exploring this topic much further tbh.
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#25
RE: Central Sleep Apnea / Auto CPAP Trial without Study
(01-06-2022, 09:37 PM)Geer1 Wrote: What else was tried for RLS?

That's a good point. Is the RLS controlled, beyond relieving discomfort, with the opiods? Do you suffer from PLMS at night (quite common with RLS)? Getting your RLS (and any PLMS) under control may improve sleep by reducing arousals.

Have your doctors tried Pregabalin?
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#26
RE: Central Sleep Apnea / Auto CPAP Trial without Study
Beyond kappa's comments I believe long term opioid use can cause numerous issues and the main reason I was curious what else has been tried is that perhaps there are newer options that might work and would allow you to come off opioids.

Have iron levels been checked?
Dopamine agonists tried?
Pregabalin or gabapentin?

My understanding is these are the main treatments now and that opioids are only considered as a last choice. Our understanding of how to treat RLS may have changed in the past 12 years so worth revisiting especially if some of these main treatments have not been tried. Not only may this treat the RLS as good or better but it may relieve other symptoms being caused by opioids (like say if there is a central apnea like effect present).
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#27
RE: Central Sleep Apnea / Auto CPAP Trial without Study
(01-10-2022, 12:27 AM)Geer1 Wrote: Beyond kappa's comments I believe long term opioid use can cause numerous issues and the main reason I was curious what else has been tried is that perhaps there are newer options that might work and would allow you to come off opioids.

Have iron levels been checked?
Dopamine agonists tried?
Pregabalin or gabapentin?

My understanding is these are the main treatments now and that opioids are only considered as a last choice. Our understanding of how to treat RLS may have changed in the past 12 years so worth revisiting especially if some of these main treatments have not been tried. Not only may this treat the RLS as good or better but it may relieve other symptoms being caused by opioids (like say if there is a central apnea like effect present).

Yep. Since I was diagnosed in my teens, I have tried absolutely every type of medication there is. Nothing even remotely works in my case, apart from opioids. Thanks for the input though!
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#28
RE: Central Sleep Apnea / Auto CPAP Trial without Study
The opioids themselves might very well be part of the issue. Even if you aren't having centrals, the general respiratory depression might be the reason why your levels are generally a little lower, but without the spikes. If you don't mind me asking, the opioids you take, are they a short-acting form right before bed, or are they a slow-release product?
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#29
RE: Central Sleep Apnea / Auto CPAP Trial without Study
Hi, I have no advice, just going through the same thing! Per my sleep study, I have more centrals than obstructive apneas, but they’re making me try an APAP first before I try ASV, probably because of insurance reasons. I have RLS as well, although nowhere near as bad as you and I don’t take anything for it, except medical cannabis as needed. I don’t know if you knew this but RLS is a symptom of sleep apnea! Though my AHI isn’t down to a new considered under control, it has gone down substantially and I haven’t had any RLS. Just recently my AHI has started going back up for some reason (going to talk to my doctor about that at my follow up in a few weeks) and my RLS came back. Just wanted to let you know, it’s definitely possible you will find some relief from the Rls when your apnea is under control! I know how miserable even mild RLS is, I hope it works out for you!
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#30
RE: Central Sleep Apnea / Auto CPAP Trial without Study
That's a very good point, a lot of other sleep disorders tend to coexist with SDB. Bruxism is another one. Various parasomnias like sleepwalking etc.

Hopefully, you can also get onto ASV at some stage and properly treat those centrals as well as managing your RLS.
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