Long time CPAP user, Don't know where to go from here

[lessbones]

Hi all--

I've lurked around these forums on and off for some years now, and figured it was finally time to be asking for help.

The short version of my CPAP tale is that I've had a machine for about 15 years. I'm 39 years old, so that means I've been on it since I was in my early/mid 20s. I've never been overweight, and generally had an active lifestyle (had more than have). In all the time I've had the CPAP i've tolerated it fairly well, but of course there have been ups and downs. I took a break for a couple of years and switched to a dental appliance, but all I really got out of that adventure was a chipped tooth. The only major way I've ever been able to tell that my CPAP helps at all is how much worse I feel when I'm NOT using it... otherwise never in my life have I ever felt "rested" after waking up from sleep-- could be 45 mins, could be 14 hours, it's always tough to get up.

The one thing that got me interested in looking into optimizing my experience again was that recently I had a day where I actually woke up feeling... decent. It hasn't happened since, but I woke up in the exact same position I fell asleep in, and I immediately felt that something different had happened, and sure enough, I checked my machine and my AHI was around 2-- the vast majority of the time I'm somewhere between 5-9.

Also about a year or two ago I went down the rabbit hole of the Airbreak jailbreak with my Airsense10, and I tried out a bunch of the different modes unlocked, but I wasn't able to find anything that felt more comfortable for me. The thing that seemed most promising would have been the VAuto mode, but I would constantly start gasping for air when I was about to fall asleep... maybe it was set completely wrong, but I know I tried a bunch of stuff at that stage, not completely blindly.

I haven't mentioned any doctors up to this point because I've generally always seemed to have ones that didn't seem to care very much. Never once was I showed any data or explained anything or even told to alter my settings or anything like that. It was basically here you go, take this machine and.... we'll see you when we see you. My first prescribed machine was so basic it didn't even have any breathe-out compensation, it was literally just constant air pressure, but I asked them to upgrade me to another model so I could look at the data in sleepyhead, and from there I decided I was going to take it upon myself to do any real optimization.

Anyway, if anybody has any insight I'm all ears : https://imgur.com/a/fS0pS9I

Also i'm sure I left a lot out, it's been so long and so frustrating I've definitely forgotten more than I remember... Also for some reason I was looking for a way to export data from Oscar in a way that would be importable and viewable (which i thought would be the csv export) but that didn't seem to be very useful as I couldn't figure out how to re-import it...

thanks everyone

[LSAT]

Your Oscar data shows an Airsense 10 Autoset, but in your post, you are mentioning various modes including VAUTO. Airsense 10 only has 2 modes...Autoset and CPAP.

[lessbones]

sorry, I should have sent links to the AirBreak project for the uninitiated:

https://airbreak.dev/
https://github.com/osresearch/airbreak

the original developers abandoned it after the pandemic lockdown (like so many other promising projects.... look what happens when the world is given an unexpected day off...) but it's still limping along in some capacity-- it basically was a discovery that all the ResMed machines of that generation were created with identical hardware and only limited by their firmwares, so the firmwares could be cross flashed to open up all the rest of these features on any of the 10 series units.

[ozij]

I didn't look at your link.

OSCAR is reporting your machine is running in APAP mode, using EPR at 3.

If OSCAR is misreporting stuff from the machine because of an attempt to make use of different firmware, then there's no way we can help you, because neither you nor we know what's really going on, nor will we know the effects of changes.

Was your good night on the same settings? Can you upload it?

[lessbones]

Don't worry about that link. The only reason I even brought it up was in case someone thought one of the other available types of airsense machines would be more appropriate, there are other modes available that I can try. I installed this modified firmware but put it back to the same settings I had originally, so yes it's running on Autoset/APAP mode.

I'll post the day that I *think* was the good one based on the general amount of time that's passed and the AHI i remember being reported tomorrow--

When i had played around with the different modes in the past, Oscar was correctly identifying them, but out of the years worth of data I have right now it doesn't have any of that short trial and error period (which was on a different SD card)

[loggerhead12]

sorry, I should have sent links to the AirBreak project for the uninitiated:

https://airbreak.dev/
https://github.com/osresearch/airbreak

Cool! We have long needed an open-source firmware update for these machines to guard against the manufacturers locking us out of our data.

[ozij]

I installed this modified firmware but put it back to the same settings I had originally, so yes it's running on Autoset/APAP mode.

Got it.

So the file you linked to is reliable. However it doesn't show all the info we need.
Please read and follow viewtopic/t172378/StickyIf-you-want-CPA ... Gquot.html
You can also create a free account on SleepHQ which lets you upload your data - and you can share public links that let us zoom at will to any point.

Whatever settings you use, stick to them for a week unless they're disastrous.

Since you're a technically oriented person, you might want to educate yourself about ResMed's various algorithms. It can help you understand the machines responses your breathing patterns, and you responses to the machine.

Try to keep a systematic sleep log.

[lessbones]

Thank you ozij--

I was looking for a way to make a copy of my Oscar profile that would only include the last xxx days, but sounds like I should try out sleepHQ instead--

this is the day I believe I had my "best sleep" in the last ~month: https://imgur.com/a/fINoThT

but you're right, I should read up some more about the different options resmed offers-- my intention was never to call attention to the hack part of the machine, but to see if anybody had any insight as to how to optimize my base system, then maybe if it was about the lack of capability of this system I would move towards trying out the more "advanced modes" but I guess if i'm not including all the necessary data in my screenshots I need to read through the sticky closer...

thanks again

*Edit: here's a link to my sleepHQ info from the past year: https://sleephq.com/public/teams/share_ ... ad9cb91ced

[lessbones]

I installed this modified firmware but put it back to the same settings I had originally, so yes it's running on Autoset/APAP mode.

However it doesn't show all the info we need.
Please read and follow viewtopic/t172378/StickyIf-you-want-CPA ... Gquot.html
You can also create a free account on SleepHQ which lets you upload your data - and you can share public links that let us zoom at will to any point.

Hey ozij and all-- just wondering if anybody had a chance to take a look at the data in my sleephq link-- I reread the sticky and I think it was probably the part about hiding the pie chart and calendar that I had glossed over, but I figured having the info in sleepHQ manipulable by anyone would supercede those screenshots anyway-- so if there's any info I still need to share to let others understand my situation then maybe someone could point me in the right direction? I know it's a lot of work to ask from strangers, but I'm hoping to get good at reading this stuff on my own ultimately and potentially being able to return the favor once I'm clued in enough.

[robysue1]

Hey ozij and all-- just wondering if anybody had a chance to take a look at the data in my sleephq link-- I reread the sticky and I think it was probably the part about hiding the pie chart and calendar that I had glossed over, but I figured having the info in sleepHQ manipulable by anyone would supercede those screenshots anyway--

I just scrolled through the data at the sleephq link (https://sleephq.com/public/teams/share_ ... /dashboard)

What kind of feedback are you looking for?

Here's the short version of what I saw in your data:

1) You've got a significant correlation between short-lived leaks and pretty clear arousal breathing. Because there is sometimes a lag in the leak data, it's not quite clear if the leaks caused the arousals or the arousals triggered movement in bed that triggered the leaks. The leaks are short enough where they would ordinarily be a problem that I'd say could be ignored. But because there's a good chance that many of the leaks triggered a wake on this night, it's worth trying to figure out if leaks waking you up is an issue.

2) Your AHI = 4.32 is higher than what most people on this forum would describe as "acceptable", but sleep docs would say it's fine. Looking more carefully at the data:

• There are 8 CAs scored during the entire night. There are no long clusters of CAs. And 4 of the CAs look like they are post arousal or sleep transitional centrals that would not be scored on an in-lab test---i.e. 4 of the CAs look to be "false negatives." While the remaining 4 CAs appear to be real events, they are not numerous enough to worry about.
• There are 5 OAs scored during the night. Two of them appear to be post-arousal events---i.e. they are probably mis-scored "SWJ" breathing. It's possible you were holding your breath while turning over in bed or while trying to fix a leak (i.e. OA4). Two of them (OA1 and OA3) appear to me to be real events. But they are isolated events and not particularly long. Notably OA 1 seems to have caused an arousal. OA5 is ambiguous. There's something that might be an arousal that happens before this event, but the breath that is "larger" is not much larger. Hence it's not at all clear whether there was or was not an arousal. So lets lump that into the real event category---i.e. It looks like there were 3 real OA scored during the night.
• There are 7 H's scored during the night. H1, H2, H3, H4, and H7 seem likely to be real events. H5 and H6 seem to be false positives. So 5 of the H's are probably real.

Putting this together, it looks like your real AHI would be about half of the recorded AHI. In other words, not a fantastic AHI, but not a horrible one either.

3) It looks like you may have had a REM cycle between 3:20 and 3:50. And it looks like machine was able to adequately respond to those events, but if you could tolerate a slightly higher minimum pressure, then it might be easier for your machine to prevent events that happen during REM.

4) You have some significant flow limitations going on during several parts of the night. Flow limitations are responsible for most of your pressure increases. Notably, the flow limitations are most significant between 3:20 and 3:50. Again, this points to the possibility that your minimum pressure should be increased slightly so that the machine doesn't have to play "catch up" when the flow limitations start.

[lessbones]

thanks robysue1 -- this is pretty much exactly the kind of analysis i'm looking for, as well as any suggestions for how I could adjust my settings to get things tightened up. I'll investigate the leak issue--

one thing though-- were you by chance only looking at the october 8th date that pops up on the front page of the link? That day has a very low AHI for me, i'm usually in the ~8 range, and there's an entire year+ worth of data going backwards from that day in the link...

[lessbones]

@robysue1--

I'd love to get your analysis on a day like this one: https://sleephq.com/public/teams/share_ ... _id=ebaRnA

this day feels like a more typical one which makes me wonder whether or not a different type of treatment would be more appropriate due to the amount of CAs reported, especially because in this case they don't seem to correlate with reported leaks. This is also a much more typical amount of time for me to be sleeping during a weekday-- That october 8th day that you so kindly did an analysis of was a rare case of a low amount of hours on the machine-- it feels like an outlier in the grand scheme, but your insight is helping me understand how to read this data.

[ozij]

When I zoom on that recent link, what stands out to me is that your breath flow often diminishes and then you take a deep(er) breath - and after that there's a series of CAs
Zoom for example at 08:49 and follow the flow to 09:03. I think your breathing problems cause an arousal, and the CAs indicate you were not really asleep.
Same at 08:35, see the diminishing flow at 08:29 and 08:32?

If this were my data, I'd try a number of things:
I'd drop the EPR to 2 and later even to 1 -
I'd raise the minimum to 11.1 at least - though looking at other nights, I'd even consider 11.4 as the minimum.
My reasoning:
EPR although being a "comfort" feature, can also have impact to the quality of your therapy.
The switch from the lowered exhale pressure to the inhale pressure could be happening too late to keep your airway open for you to inhale properly, and those lowered inhales cause arousals.
The minmum pressure you set is where the machine goes when your breathing is stable. However, what happens is that the pressure keeps dropping to where your breathing becomes less stable, flow limitations happen and the pressure is driven back up. Over and over. You want to avoid a minimum that is too low.

Go through your other nights, look for periods of stable breathing and see which pressures they occur at.

Tell us what you decide to do, and how it works for you.

[lessbones]

thanks so much ozij--

It feels so obvious now that you mention it, but I never even thought to consider the EPR as even part of the actual treatment program. I used to have a Resmed System ONE machine that I believe had the pressure relief setting available without having to go into the clinician's menu, so maybe that threw off my appreciation of how much this function could actually affect things.

Since you posted this I spent about a week with the EPR on 2 and now I've gotten about 3 days on EPR 1. I feel like it's too early to start analyzing data, but I'll give it another week then see how things are looking. Last night the machine reported an AHI of 3.2 (!) so we might really be on the right track--

[ozij]

Glad to hear from you.
How are you feeling with the changes you've made?