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Awake periodic breathing/ desats, otherwise healthy? (+sleep apnoea)
Hi everyone - first post but I have been lurking for a while and am amazed at the communal knowledge here. I have been on APAP 6 weeks, for what I think has been lifelong sleep apnoea.

I'm wondering if anyone else has idiopathic daytime desaturations as part of their "sleep" apnoea? Apologies in advance for the long post to try to detail my unusual situation. I have been told I have sleep apnoea plus "awake periodic breathing", but no-one seems to have a good explanation for it.

I seem to be a mystery to my physicians, with awake desaturations as low as 92% in the absence of any other physical problem, apart from sleep apnoea. I have been specifically advised that I don't present like someone with central sleep apnoea??? I still haven't got a coherent explanation of whats going on, beyond, "it might get better with APAP"

I developed severe fatigue late last year (I have had long, lesser episodes of this life-long) and was found to be desaturating cyclically as low as 92% on room air while laying quietly awake. Full cardiac/ respiratory/ neurological workup was clear (cardiac and pulmonary angios/stress echo/ VQ scan / full pulmonary function tests/ MRI head). So no emboli/lung disease/ heart shunts and so forth. All blood work normal (including atypical haemoglobin). Cardiac MRI is pending, but expected to be normal.

My saturations at rest on room air (at sea level) still typically cycle between 93-97%, with a deep breath or two easily getting it up to 98-99%. I have had no altitude exposure.

Desaturations are confirmed on multiple professional/ hospital/ Resmed oximeters, and absolutely confirmed with arterial blood gases. My actual arterial oxygen on the blood gases was a bit better than it should be for the saturation (like normally happens with high altitude acclimatisation), but still a bit low. Normal blood carbon dioxide and pH.

The subsequent in-hospital sleep study wasn't all that great as I slept very poorly compared to usual (I don't suffer insomnia). There was only 80 minutes of level 1-2 sleep, 10 min level 3 sleep, zero REM.
Final diagnosis "moderate obstructive sleep apnoea with a respiratory disturbance index of 24", but events were almost all hypopnoeas and a single obstructive. Given I got almost no deep sleep, I guess it was presumed I probably would have a lot more obstructives normally, and I was put on APAP.

I started apparently effective APAP 6 weeks ago (AHI/ OI/ HI/ CA/ RERA -1.1/ 0.2/ 0.2/ 0.7/ 0).
Fatigue is starting to improve, but only to some degree. No leaks issues or significant comfort problems. 100% Compliance, 8.5 hours. My oximetry on APAP (Resmed) for a couple of days showed Min/ Med/ 95%/ Max - 90/ 93/ 95/ 98% asleep. Most flagged CA's are usually preceded by increased respiratory volume so artifact/ normal I guess. I get occasional OA's.

Much of the night flow-rate shows a cycling pattern (attached) but mostly not enough to trigger flags in Sleepyhead. The volumes seem to match O2 drops and pulse-rate rises that I guess might muck up my deep sleep??

I do have some periods of an hour or so early in the evening, where sleeping flow rates and tidal volumes are quite steady, albeit at around 93% sats, so I'm hoping that means my brain stem isn't irreversibly fried. My awake oximetry is still weird and not improved.

Otherwise, I am mid 50's, previously very physically active, BMI 33, no relevant regular medication. I have had long periods of unreasonable fatigue life-long, but never before to the point of becoming non-functional. There is no family history to suggest congenital hypoventillation, albeit genetic testing for Phox2B is pending.

Adding 2L oxygen into the circuit, and a 7 day one-off lot of zolpidem seemed to help fatigue enough so I could get back to work, but this could have equaly been coincidental. Nevertheless I am still not as good as I was, say, 6 months ago.

I do have another sleep study coming up at a different lab/ different physician soon to try to iron this out better.

It'd be nice to hear if anyone else has this idiopathic awake desaturation thing "that might get better with APAP" as I was advised, or does it just stay the same, or even get worse with time? It's kind of a worry to me - I'm too young to have to retire due to some problem that might get worse?
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I personally can't help you with much, but pretty sure others will chime in tomorrow.
My periodic breathing is worse than yours, my O2 is usually higher but does drop to 92% sometimes at night.

What I did notice is you heart rate is much lower than mine (70ish BPM at rest) and I think some were talking on this forum about the effects of low heart rate on O2 levels.

My father in law had a very low heart rate, kept falling asleep in a chair. He got a pace maker implanted and is doing great now. Just something to think about.
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Hi PoolQ. Thanks for the comments. My low heart rate was from keeping fit - resting heart rate used to be in the low 50's, but gradually rising now I haven't been able to exercise much due to fatigue.
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Hi Carbon,
WELCOME! to the forum.!
I don’t know the answer to your question but hang in there.
Much success to you with your CPAP therapy and getting your problems straightened out.
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Welcome aboard Carbon

I also have been using APAP for about 6 weeks 45 days to be exact. I have been using this forum to under try and understand this form of therapy I have found the responses very helpful, I read the forum every day.

Getting set up to look at your own data with sleepyhead will really help

I had a similar experience in the sleep study. I have had two of them and could not sleep in either...Nevertheless I was given a prescription and direction to apply the therapy. I am finding that almost all of my "events" occur while I am waking or going to sleep, in my sleep studies all my "events" were while I was awake.
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Just a follow up on my awake periodic breathing.

My full exercise pulmonary function studies were normal - sats 97% plus while exercising, and I was able to complete the full protocol. As I only desalt to 92% (average 94%, range 92-99%) or so when sitting or laying quietly when awake, and there are some old incidental medical records in retrospect showing I looked to do same thing almost 20 years ago, it has been deemed "normal for me".

My fatigue is gradually improving after 2 months APAP, so it seems reasonable to leave it at that.
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In my case I started considering Sleep Apnea after having my Gall Bladder removed and not waking up well from the anesthesia. The nurses asked about SA since I came in with low O2 levels. I monitored O2 on and off for a couple of years with a daytime figure around 93%. Sleep studies were inconclusive. Self monitoring at night was difficult with the setup I had (spring loaded finger tip) so I eventually bought a new unit and started wearing it at night last fall. Lots of desats (IMHO), so I asked my primary about downsides to just trying a CPAP. He didn't object so I bought one off Craigs list and new masks using the non RX route (separate headband). The desats at night got a lot better and I'm no longer wanting to fall asleep at my desk in the afternoon. Although you will get flack from some members, self prescribing worked well for me and was less than the out of pocket cost of another sleep study.

Best of luck on your journey
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Hi cpetku. Glad to hear its working out. Did your awake saturations improve with time after you started CPAP?
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