1st day Newbie - gratitude and a bit of guidance if possible - thanks!

Hi,

Ugh. I messaged too soon.

So, I had given up on the constant 15 pressure by adding EPR, and still didn't sleep great, so went back to what I had felt was pretty good before the sleep tech put me on constant 15: i.e. I went to 11-15 with EPR of 3. And I had 2 really great nights of sleep, with AHI of 1.6 and 2.2. Yay!

The third night on that, I had some sleep onset apneas happen. And then the fourth and fifth nights happened. (Last night and the night I'm trying to sleep through right now.) Last night was brutal - over and over I would fall asleep and then wake up abruptly gasping for air, with the cycle repeating through the whole night. I should be able to get the data and upload it in the morning. (Sorry- card/machine date issue.)

And now tonight the same issue: I'm up again having had twenty or more of these gasping cycles. It seems that they are the sleep onset variety, and central at that.

I don't quite understand this. I had two amazing and one decent sleep on these settings (11-15, EPR3), and now I'm struggling on the same settings. I'm doing nothing different. All I know is that it is awful - the cycling of sleep-gasping is horrible. A couple of times I had the presence of mind to check my O2 sat on my watch and it was 91-92 right after waking up. Most times I'm kind of slurring awake - feeling the gasping in my dream and having heaving breathing as I wake - almost a bit late to check the O2 sat.

I'll check in during the morning with my new images. I'm hoping that just typing this here will somehow subconsciously settle my brain so it will do it's job and keep me breathing and hopefully not have anymore of these horrible awakenings.

Yours in the quest for a decent sleep,

Parasomniac

Howdy,

Here is my screenshot from 2 nights ago: No surprise: lots of events.
- a huge chunk approx 2230 - 2250 when I was asleep, eventually making me really alert/awake - took a slight brea, went back to sleep, had another couple of events, then was so wired had to get up and read to get drowsy
- another single episode at approx 0025 (I kind of remember there being more - maybe I was just having dreams of difficulty breathing, not really having episodes), and got up for another break
- went back to sleep and had a storm from 0100 - 0120 (mostly centrals), then normal sleep, then some intermittent stuff

Last night (no pic yet) I had a lot of trouble and then wrote the post above. Then I thought, "Am I really doing everything the same as I had on those two great nights? And I realized there was one thing I was doing a bit differently. In those two great nights I had also tried lying down fully supine (on my back) with my Shape of Sleep pillow in place (which I use to prevent kinks in my neck) looking straight up at the ceiling. This is NOT my preferred way to fall asleep. I added this in 5 nights ago as a way to further optimize/open up my airway. But then starting 3 nights ago, I started more trying to sleep on my side or even just tilted to my side.

After writing the above post, I went back to sleep with my device (11-16 and EPR3) lying fully/perfectly supine and fell asleep. I had only one episode (milder) of re-awakening a bit short of breath. After that, I just woke up this morning. I can't wait to see my data tomorrow. I'm guessing it will show a low AHI during that period of sleeping supine.

Thanks,

Parasomniac

Fascinating! Let us know.

Hi,

Things weren't as rosy as I had hoped. Below is my screenshot from 2 nights ago - where after struggling with apparent sleep-onset apnea, I went back to sleep lying strictly supine and thought I had a good night's sleep.
I've only shown the period from that point on, which shows an AHI of 5.83 (the AHI of 7.99 is for the whole night, including the period when I was on my side and had tonnes of lurching awake/gasping).

5.83 is not bad, but it's not the 1-2 that was incredible from a few nights previous. Last night was also challenging.

Key thoughts:
- I had a higher proportion of my events were obstructive in this image that has been my norm. Still more centrals with a 2-3 : 1 ratio or so.
- I guess I don't know what to do. My summary would seem be, "Generally this patient has had lots of central sleep apnea episodes with some obstructive episodes. He has had a couple of good sleeps with 2 of 20 with AHI of less than 3. But more nights than not he has had subjectively disruptive sleep with lots of awakenings in respiratory distress/gasping. Constant pressure at 15 cmH20 was a failure. His best nights came with 11-16 cmH2O with EPR 3; these settings have not assured a good result."
- With that kind of summary - if correct (and I think it is), what now?
- Do I go for a sleep lab test? (I have one booked for 3 weeks from now, but I am transitioning to a new sleep doc.) At a $1000 per night (and not covered by insurance) I only want to do it when there's good value for money.
- Is it likely that a sleep doc should look at my data and set me up for bipap given all my centrals, and then do a sleep lab test, optimizing my new device?

One thing I do know is that the strict supine sleeping is not a guarantee for a better night's sleep.

Oh, how sweet that was, the morning I awoke after what I later learned was a 1.something AHI night. I'm excited by the prospect of eventually getting to that consistently. In this meantime, this is a tough slog.

Cheers,

Parasomniac

Howdy,

Okay, I'm doing a bit better. Here's my most recent OSCAR (from 2 nights ago):
The bottom line is it ultimately turned out me being in a strictly supine (face up) position wasn't as critical as I had thought. Some of my recent nights with being supine were AHI's of 6 or so.

I looked at the lifetime of data in the machine's card - i.e. the data from everybody else who has used this machine. I don't have any names or other identifiers. I was curious to see how my progress has been compared to everybody else. Here's a snapshot:
My data is at the very right (Nov 14 onwards)

Here is what it tells me:
1. I have been a very faithful user compared to everybody else. My usage hours are great.
2. Despite that I have WAY higher AHI than everybody else.
3. If you look closer, you can see that if we only included obstructive and hypopneas, I'd be around the same as everybody else. It's my Clear Airway / Centrals which are unique and massive, and which push my AHI to be so high.
4. The sleep tech told me something like, "those are just apneas like everyone else, the machine can't tell the difference, this is just like what everybody else has" which I see from this machine's lifetime data is wrong. No other user of this machine has had anything like this. Just more confirmation for the switch of sleep teams to happen.

Any thoughts?

From what I've since learned, it seems like I should be going on bipap. Is this a correct interpretation?

Thanks!

David

Sorry, I should have said, my leak control is far superior to all the other users. In other words, I have had far less leak than others.
As you can see on the second graph, my leaks barely hit the record. Yet look at that top graph! My total time in apnea is WAY more than everyone else. I'm pretty annoyed that this sleep company can see this data and have just been waving me off, saying it's no big deal, this is like everybody, when clearly I'm not reacting to CPAP like "everybody". I'm just a bit stunned that they're not bothering to reach out and more intensively manage me/my settings, bring me back, etc.

If I didn't have cpaptalk community support, I would be oblivious and wouldn't even be in the better control I'm in now. I'm the one (based upon your education of me) who's been the one trying to get me under better control.

I'm no sleep expert, but it's pretty clear from these graphs that I'm being fully compliant yet responding way worse to therapy that the other users of the same device.

Thanks,

Parsomniac

Parasomniac - any change or solution to your sleep onset centrals? It’s what I have and I am losing my mind over here. Would love to hear an update. Hopefully you found a solution!