3-Year CPAP User Looking for Advice

Hi all,

First here is a screenshot of an OSCAR report from a recent night:

https://i.imgur.com/oHyZ8ZE.png

This report consists of two sessions: one was 12 minutes (I think I interrupted it to use the bathroom) and the other was 8h27m (my actual sleep). Please let me know whether this screenshot is okay. This screenshot shows a typical night (most of my nights look like this). I remember I did feel like this sleep was restful. I woke up feeling refreshed and I don't remember any particular issues during the night.

My main problem right now is that some nights I have very bad sleep but the OSCAR report still looks similar to my good nights. I am also struggling to find what I should be doing differently. All details below. My primary problem right now is that I am experiencing apneas or sleep interruptions during sleep onset, and this is causing me a lot of anxiety. I don't know what to do.

Some background

• I've been using CPAP since Feb 2021 (a little over 3 years). When I first started using it, the settings were 8min/12max, and I slept amazingly well for at least the first two years. I also started a new diet and lost 30 pounds in my first 4 months using it. I even contracted COVID during that time (post-vaccination) and slept just fine, with minimal disruptions.
• In the last year my sleep has become less good. I am back to about 7 pounds over my initial weight when I first started CPAP. I had to change my machine some time last year because of a recall on Respironics, and the new machine was set to continuous pressure of 9.0cm. I didn't realize I should be using an APAP setting until fairly recently (December 2023), and I've set the pressure to 9min/13max.
• Some problems I had I eventually did solve. For example, changing from continuous 9 to automatic 9min/13max helped a lot. I also began vaping tHC last year and was vaping almost every single day, but I've since stopped entirely (last vape was March 1, 2024). I also had a very dirty filter at some point that I had foolishly forgotten to change for a while. (My partner was using a humidifier with tap water when he contracted COVID recently, and I think the minerals in the water just clogged up the filter. There was no other change to explain why the filter got so dirty so fast.)
• However, I am still having some problems.

Summary of problems

• I am experiencing a lot of difficulty getting to sleep, and right now this seems to be my biggest problem. I am writing this post after a night in which I went to bed at about 2:25am and didn't get to sleep until about 5:45am. I would lie in bed for 20-25 minutes, not fall asleep, and then get up to walk around for about 5-10 minutes. Then I would try again. I did this for more than 3 hours until I finally fell asleep. Then I only got 3 hours of sleep (that session was 3h17m).
• Last night was towards the extreme end, but that is what I semi-regularly experienced for several months last year until December. I still do experience this difficulty getting to sleep on a regular basis, but usually not for more than 30-40 minutes.
• The OSCAR report shows the details, but here is my qualitative description. As I feel myself drifting off to sleep, I feel myself jerked out of that state and back into full consciousness. My heart begins to race and my body feels very flush and warm. It's similar to how I used to experience an untreated apnea before CPAP, but not quite the same. These are exclusively during sleep onset, and I don't necessarily feel myself gasping for air or having lost a breath. It almost feels like I forgot to breathe.
• I've read about sleep onset apnea or sleep transition apnea, and that could be what's happening to me.
• Some of my issues are psychological, yes. Given that the average quality of my sleep has gone down significantly over the last year, I experience anxiety around going to sleep. For the first two years, my AHI on almost nights was less than 1. Now my AHI in a typical week ranges from 2 to 4. Yes, it's not a big difference, but it's there.
• My anxiety is based off real events, not imagined ones. I've told my partner that this "feels like my body is betraying me". I want to fall asleep and I can even feel myself doing so, but then I'm jerked out of it despite using the CPAP machine.

My sleeping arrangement

• I usually sleep on my back. Sometimes I sleep with my body slightly turned towards the side. My back is still supported by pillows but the side of my face is partially on the pillow.
• I sleep with a travel neck pillow (https://www.amazon.com/gp/product/B01N6MJ3QI/) to support my chin to prevent my mouth from dropping open and causing bad dry mouth. The straps are adjustable so that the pillow can hug your face and neck quite tightly or just be very loose with the side pillows there for support only (not under your chin).
• I use Xylimelts to help with dry mouth since my mouth still does open slightly.
• When I first started CPAP (and when I was untreated), I slept on my side. However, now when I sleep on my side, I wake up with a lot of muscle pain in my ribs. I've slept on my back almost exclusively for more than two years now.
• I have a foam mattress.
• I keep my bedroom dark and cool. I also have a sheet I can put over my eyes (doesn't impeded breathing since I use a full-face mask) to block out light.
• I use a white noise machine.
• For about half the week, my current boyfriend sleeps in the bed with me. He does not have sleep apnea. His movements generally don't disturb me or contribute to the other issues I've described.

Questions

• Does the OSCAR report support my description of what's happening? Does my description make sense?
• Do others have experience with this sleep onset apnea? How do you manage it?
• Are my pressure settings (9min/13max) not appropriate? Should they be changed?
• Should I be concerned that a typical OSCAR report has so many RERA and VS/VS2 events? For reference, in my three years using CPAP, I've seen maybe 2 CA's. All of events in the AHI calculation are hypopneas.
• Recently I have not had problems with mask leak, but I have had this issue in the past. How can I read the OSCAR report to know whether my mask is leaking too much?
• For side sleepers, how do you prevent muscle pain in the morning? Is this a matter of proper support (pillows, mattress, etc.)? Or is this more of a matter of my body shape and size? (I'm a male, height 5'8", and weight about 265 pounds.)

Thanks so much for any help. It's much appreciated.

Please share last night's report. Need to see what might be going on during that "sleep onset" period of time.

Your May 4 report....looks like you need to allow the machine to go higher. Lots of snores and maxing out the pressure.

Damn, you are fast! Thank you so much. Here is last night's report:

May 7:
https://imgur.com/a/h6XxfUO

Some of the data is missing. After my first attempt to sleep which ended at about 3am, I took out the SD card to look at the data immediately. I'm not sure what I hoped to find, but I forgot to put the SD card back in. So between 3am and about 5am, I did attempt to get to sleep 3 more times (20-30 minutes in bed and about 10 minutes walking around). I remembered to put the SD card back at about 5am. So you can see another period I tried to get to sleep between 5am and 5:15am. Then I got up and tried again at about 5:35am, then eventually fell asleep and woke up around 9am.

I can also zoom in on any section if you would like.

I've been very exhausted all day. It looks like I probably had a REM cycle around 7:45-8:00am and then never had another. So that probably explains it.

As for the May 4 report I linked earlier, that seems to be pretty typical for me with the pressure maxing out for long periods. Here are some other reports that show typical sleep patterns:

May 1:
https://i.imgur.com/H9hlTjz.png

May 2: (missing flow limitation data because I forgot to put SD card back in the machine)
https://i.imgur.com/YVuua2h.png

May 3:
https://i.imgur.com/wfUI9cD.png

Unfortunately the lack of detailed data because the SD card wasn't in the machine really complicates trying to evaluate what you are describing when you have something going on during sleep onset but we have no real details available to evaluate.
I was looking for any flagging done while awake that might be related to sleep onset.

I can't do much right now either. We got tornado sirens going off and a big ass ugly storm heading my way.
I won't have internet much longer.

Anyone have any ideas???? I have none right now.

I understand. I will make sure to get more data and report back tomorrow. (Now watch me not have these issues tonight, which would be a blessing but also inconvenient since I want that data haha.) I've had this experience on other nights, but not all nights. So I can't say for sure which of the reports I linked above contain this sleep onset problem I've described.

Thanks again for your response, and stay safe.

My first machine before the recall was set to 8min/12max by my doctor. Over time I changed the min pressure to 8.5, to 9.0, then back to down to 8.0. When I got my second machine, it was set to continuous 9.0cm. So when I realized that it didn't have the same settings as my first machine, I set it to APAP 9min/13max since I had already been at 9cm for about 10 months. I've also wondered if I should just go back to 8min/12max (my original settings) or just 8min/20max (as you have suggested). So thank you for giving me some clarification there.

When you're able to respond again, I have some follow-up questions.

Follow-up questions

• Can you say a bit more about the max pressure? What would you suggest and why do you suggest that (i.e., what jumped out at you in my reports for you to make that suggestion)?
• I've seen you suggest to others that only the min pressure really matters and the max can (usually) be anything as long as it's high enough to stop breathing events. So should I just put it up to 20cm (max for my machine... I think)?
• Is this a common experience to find that settings that previously worked for a long time, possibly years, are no longer adequate? I slept great for two years with 8min/12max, and it's only in the last year that my sleep has slowly deteriorated. I've also had some major health changes though as I listed earlier: some significant weight changes (except I'm back to where I was) and two months ago I stopped daily use of tHC that I started about a year ago. Coincidence? Probably not.

Gotta be quick.
One storm moving south of us but another big one is moving in so it looks like we will be right in the middle of the ugly.

Yes....increase your max and lets see where it wants to go and see if the snores reduce.
Lots of snores on that May 4 report. The snores themselves could potentially be a factor in the sleep onset problem.
I don't know for sure but it wouldn't be impossible.

As to why now? We don't really know why things seemed to have changed. Gained any weight????
I am unsure how much of an impact discontinuing the THC could be impacting things after this much time.

I got tornadoes all around me. I live out in the country....satellite internet which sucks during heavy rain and storms.
TV as well....and it's coming and going as I watch the weather. At least the sirens have quit for now anyway.

I hope you stay safe. (I'm in the NYC area, so tornadoes are not a thing and every few years when we do get one, it's a very mild one and everyone sort of freaks out. So tornadoes sound scary to me lol.)

Thanks again. I'm going to put the max to 18cm tonight (no change to min) for tonight to see if there are any changes. If there's improvement or nothing changes, I'll stick with it for a few days to see if things change later. Your reasons for suggesting the increase make sense to me.

I hope that helps with the sleep onset, but I guess there's no real way to tell ahead of time. In all my reports, I've noted a huge clump of snores and RERA's around the time of sleep onset and then every 90-100 minutes or so thereafter (presumably when I fall into REM sleep). I actually had stopped showing them for a while because some nights it looked like just a constant red for some periods. For the most part, my actual sleep feels fine and I wake up rested. It's the onset period that causes the bulk of the issues.

Pugsy wrote: ↑

Wed May 08, 2024 3:33 pm

I can't do much right now either. We got tornado sirens going off and a big ass ugly storm heading my way.
I won't have internet much longer.

Hope you'll be OK, Pusy. Tell us when you can.

Midtek wrote: ↑

Wed May 08, 2024 2:21 pm

I am experiencing a lot of difficulty getting to sleep, and right now this seems to be my biggest problem. I am writing this post after a night in which I went to bed at about 2:25am and didn't get to sleep until about 5:45am. I would lie in bed for 20-25 minutes, not fall asleep, and then get up to walk around for about 5-10 minutes. Then I would try again. I did this for more than 3 hours until I finally fell asleep. Then I only got 3 hours of sleep (that session was 3h17m).

It's the onset period that causes the bulk of the issues.

Disable the ramp. You machine is set to give you 30 minutes of no therapy - a pressure of 4 when you're trying to fall asleep.

Disable the ramp. You machine is set to give you 30 minutes of no therapy - a pressure of 4 when you're trying to fall asleep.

Hmm, I didn't think I was using the ramp feature. I can see in the "Device Settings" in my OSCAR screenshots that it does say I have a ramp time of 30 minutes, starting at 4cm. But I think that just means my device is capable of doing that, provided I hit the "ramp" button instead of the "start" button when I use my machine. (This model has two separate buttons for those.) The OSCAR report also shows that the pressure never went below 9cm (in the Pressure graph) and that the minimum pressure is 9cm (in the Statistics panel on the left).

I can disable the ramp feature just to be safe since I never use it, but I don't think that's the problem. I wish it were because then it would be a simple solution.

Midtek wrote: ↑

Wed May 08, 2024 8:18 pm

But I think that just means my device is capable of doing that, provided I hit the "ramp" button instead of the "start" button when I use my machine. (This model has two separate buttons for those.) The OSCAR report also shows that the pressure never went below 9cm (in the Pressure graph) and that the minimum pressure is 9cm (in the Statistics panel on the left).

I see what you mean - and I must be wrong - I don't know the DreamStation.

I used to have a machine (way back when, pre-OSCAR, that had a ramp button I could hit to lower pressure when I woke up, without turning the machine off. Loved it. But it always started at whatever the ramp was.

I understand from this video that one has to use the ramp button to activate the ramp on the DreamStation, after pressing start.
https://www.youtube.com/watch?v=U-408vvhj-c

ozij wrote: ↑

Wed May 08, 2024 8:01 pm

Hope you'll be OK, Pugsy. Tell us when you can

We got lucky. Didn't get a head on hit by the storms that formed. We were just north of the worst of it.
Lots of lightening and thunder and rain and a little wind but as storms go....not bad where I live. Some places got lots of golf ball size hail and some places even got tennis ball size hail. We skirted that issue. They are still trying to figure out how many tornadoes vs high winds all around here.

Okay here are two more reports:

May 8 (report 1):
https://i.imgur.com/DszM6k6.png

This was my attempt at a short nap after my bad night. I was only in bed for about 45 minutes, and I never actually fell asleep. Maybe some very light sleep stages towards the end, but I don't remember ever fully losing consciousness. At this time, my machine was 9min/13max. I did experience the sleep onset disruptions I described earlier. That is, I feel like I'm transitioning from wakefulness to sleep, but then I feel a sudden jerk back into wakefulness. My heart starts racing and I feel warm and flush. On other occasions I feel myself drifting off but then I feel like I forget to start breathing after an exhalation, and I have a sudden arousal.

May 8 (report 2):
https://i.imgur.com/zEbYl3D.png

This was my full night's sleep (about 9.5 hours). I did change the settings on the machine to 8.5min/18max. (Ignore the device settings on the left panel for that report. It's probably still taking the settings from the nap earlier in the day.) I slept on my back for the night, but had my usual neck/chin pillow to prevent as much chin tucking as possible. I don't remember having any issues during the sleep onset period. If I zoom in on the report, I can see a marked difference in my breathing pattern after about 10 minutes, so I presume that's about how long it took me to fall asleep. Granted, I was pretty exhausted from having only gotten 3 hours of sleep the night before.

Also, I remember waking up a few times, probably just normal occurrences for anyway. But in two of the times, I had felt my airway collapse on exhalation. I'm not sure why they didn't get flagged as OA's unless they didn't last long enough. This arousal from what feels like an OA is rare for me, so it was concerning but nothing I haven't experienced before.

Wonder if you are experiencing hypnic jerks causing you to wake up. I have those sometimes. Highly annoying.

That doesn't sound like that would be the problem. I don't ever recall having a muscle spasm during these events. Perhaps sometimes, but not yesterday and I can't remember the last time I did experience a hypnic jerk.

I've read a whole bunch of possible explanations. Sleep transition apnea is a real thing and apparently there's just not much that can be done about it. I've read that it's hypothesized that sleep transition apnea occurs because your body regulates breathing while awake from oxygen levels but regulates breathing while asleep from carbon dioxide levels. So anything that may affect the latter in an abnormal way can cause this apnea.

I do have some medical history that points to this being a factor, but nothing definitive (and I'm not a medical expert so I can't say either way). I do have a history of tachycardia (faster than normal heart rate), and my OSCAR reports show breathing that is shallower than what is considered "normal". It's not in the screenshots, but my median respiratory rate while asleep is typically around 22 bpm and my 95% rate is typically about 27 bpm. That's higher than the normal 12-20 bpm. In my first sleep study, the doctor also noted an irregular heartbeat and recommended I see a cardiologist. (I never did because I attributed the irregularity to my untreated SA. After a few months on CPAP, I saw my GP and she said my heart sounded fine.) But now I'm thinking maybe I should get that checked out. Couldn't hurt. And, finally, I also have a lifelong history of depression and anxiety.

So all of these things seem to be related since all of those things I listed can affect carbon dioxide levels in the blood. But I can't say exactly how they are related for me (or even if they are) since I'm not an expert and I don't want to play Google Doctor. I also don't have this sleep onset issue every night. I guess I would expect if there were a related underlying chronic medical issue, I would experience this more. Also, these medical issues have been present the entire time I've been using CPAP, so why now?

Anyway, thanks again for the help. If the conclusion of this is that there really isn't anything wrong per se and it's 99% psychological, that's fine. I would just feel better knowing what triggers these sorts of nights, you know? They seem to occur randomly and unpredictably. I can have a solid month of restful sleep and then a really bad night in which I have no idea what's going on and I haven't made any changes to my sleep routine.

Pugsy wrote: ↑

Thu May 09, 2024 7:21 am

ozij wrote: ↑

Wed May 08, 2024 8:01 pm

Hope you'll be OK, Pugsy. Tell us when you can

We got lucky. Didn't get a head on hit by the storms that formed. We were just north of the worst of it.
Lots of lightening and thunder and rain and a little wind but as storms go....not bad where I live. Some places got lots of golf ball size hail and some places even got tennis ball size hail. We skirted that issue. They are still trying to figure out how many tornadoes vs high winds all around here.

Glad to hear you escaped the worst of it!