[Symptoms] Mysterious Arousals

[freakyfrog]

So about 3 years ago I was confirmed to have UARS via a watchpat study with an RDI of 13.7 and an AHI of 2. Since then, I’ve tried a CPAP, BIPAP and ASV with different pressures and have noticed only slight improvement when using a BIPAP. My flow limitations are resolved, but I keep getting heart rate spikes / arousals / awakenings without any sign of flow limitation or RERAs. These arousals and awakenings are why I think I still feel terrible and exhausted every day. Regardless of which machine I use or which pressure I use, I get about the same number of arousals and awakenings each night. 

They all look like these in the flow rate graph: https://imgur.com/a/Q264Vgf

Which got me thinking, maybe something else is going on here. So I set up a night camera and I got a pulse oximeter to get more data on these events. My pulse rate spikes match up exactly with these arousal events, but a strange thing is happening with my body at this time. My body kind of jerks, and my mouth does this weird thing which looks like it is expelling air. 

Examples: https://imgur.com/a/YwLmq1c

I thought maybe the CPAP is causing these arousals due to aerophagia? Nope. I recorded myself last night without a CPAP, and I got the same exact awakenings with this pattern at these pulse rate spike moments. The amount of pulse rate spikes is also similar to the amount I get with xPAP and my original watchpat study, (about 25 spikes per night). Also these patterns happen in every sleeping position, I just posted supine because it is easier to see.

Examples: https://imgur.com/a/0ELBZBF

What is going on here? Could these awakenings/arousals be caused by LPR? PLMD? I am stumped. I am going to see a sleep doctor soon and hopefully I can get a polysomnography and DISE to see what it could be, but I was wondering if anyone had any insight into this.

[joeblough]

your 2nd image is 404.

i don't have a lot to add but i suspect i have something similar going on. i need to scour my oscar waveforms for similar ones to yours; i didn't know how to read an arousal. i do know from somnopose + oscar that whenever i turn and fall back asleep, i have CAs. so it could be the case that i don't have any spontaneous arousals, as i usually only see the CAs in response to a position change.

[G. Szabo]

I have something similar: HR spikes associated with irregular breathing patterns, in spite of the fact that I successfully fine-tuned my treatment setting, leading to zero or close to zero AHIs.

[freakyfrog]

updated the broken 3rd link https://imgur.com/a/ONS2B0u Is it possible to edit my post?

[joeblough]

there should be a tiny edit button next to REPLY but it is possible it disappears after some time.

i still get 404 on your revised url...

[freakyfrog]

Imgur is being weird, and I don't see the edit button.

LMK if this works

https://streamable.com/7goaai
https://streamable.com/myua58
https://streamable.com/5c1qpb

[joeblough]

ok, i can see those. a couple of those seem similar to what happens to me. i start breathing thru my mouth and making plosive sounds. i'm not sure these are full-on apneas.

my sleep doctor thought that this sleep disordered breathing is directly leading to arousals, rather than an apnea causing a drop in o2 sat and an arousal to breathe again. i definitely woke myself all the way up as i was falling asleep with one of these in my last sleep study. for me, i'm still at the stage of initial CPAP use so i don't have any further info on alternative therapies other than what i've researched on my own. (bongo RX EPAP, iNAP)

maybe if you went to an ENT they could do that in-office sedation test where they put an endoscope down your nose and see exactly what is going on in your throat during these episodes. i need to convince my sleep doctor that i should have this done.

[freakyfrog]

ok, i can see those. a couple of those seem similar to what happens to me. i start breathing thru my mouth and making plosive sounds. i'm not sure these are full-on apneas.  

my sleep doctor thought that this sleep disordered breathing is directly leading to arousals, rather than an apnea causing a drop in o2 sat and an arousal to breathe again. i definitely woke myself all the way up as i was falling asleep with one of these in my last sleep study. for me, i'm still at the stage of initial CPAP use so i don't have any further info on alternative therapies other than what i've researched on my own. (bongo RX EPAP, iNAP)

maybe if you went to an ENT they could do that in-office sedation test where they put an endoscope down your nose and see exactly what is going on in your throat during these episodes. i need to convince my sleep doctor that i should have this done.

Yes, I am going to try to get a PSG and a drug-induced sleep endoscopy scheduled to see what is going on.

[BigWing]

I too bought an oximeter to see what exactly these events were doing to my oxygen. After all, that's one of the main reasons we put up with the PAP treatment, isn't it - because the "events" cause oxygen desaturation and that's bad for us?

Yet, like you, I am not really seeing any obvious correlation between PAP-marked "events" (OS, H, CA) and oxygen drops. My events are close to zero every night but my oxygen 'score' varies for no obvious reason from great to poor - from night to night and indeed hour to hour.

The main correlation I am seeing is between oxygen changes and arousals. In other words, most of the noticeable changes in my SpO2 graph - both up and down - coincide with an arousal (usually, but not always, without awakening). I guess that suggests some sort of positional obstruction is going on, though I'd expect that to affect what the CPAP machine sees in terms of flow restrictions and events - yet I don't think it does.

I have tried adding a camera to my overnight arsenal, to see if that might show me exactly what is triggering the arousals and the oxygen drops. I only used it once so far, and it stopped after a while, so there is still a lot of room for improvement of how exactly it does its job, but it already finally confirmed one thing for me. The frequent few-second 'blips' I see in the Flow Rate graph which are accompanied by a brief jump in the Movement chart and then a Pulse Rate spike are indeed arousals, as they coincide precisely with me briefly shifting position.

By the way, I synchronise the CPAP charts with the oximeter charts every night as soon as I get into bed with my version of the movie-maker's clapperboard - a large brief sniff accompanied by a quick twist of the wrist (the one containing the oximeter). The two events are easily seen on the charts, and I then use the "CPAP clock drift" setting to align them to within 1 second by adding or subtracting a few seconds.

In the absence of a camera, I use a similar technique to flag which side I am on whenever I wake up (in case that is a factor in the results).

So I'd now like to figure out (a) what causes the arousals and (b) what actually is affecting my desat level.

[G. Szabo]

By the way, I synchronise the CPAP charts with the oximeter charts every night as soon as I get into bed with my version of the movie-maker's clapperboard - a large brief sniff accompanied by a quick twist of the wrist (the one containing the oximeter). The two events are easily seen on the charts, and I then use the "CPAP clock drift" setting to align them to within 1 second by adding or subtracting a few seconds.

I want to yuse your excellent idea. Would you clarify the effect of a "quick twist of the wrist"?