3.5 Years Struggling with 0 AHI but high respiratory rate

Hello! I would love feedback on struggles I have had for sometime. I was put on a CPAP with severe apnea in June 2020: ResMed AirSense 10. After completing a home sleep study (due to the pandemic), they prescribed 4 - 20 Autoset and told me that they would calibrate along the way. The machine nearly blew my ears out. It was so uncomfortable and I immediately felt dizzy and sick. My sleep from apnea had been bad, but I couldn't sleep on the machine more than 45 min before waking up because of the air pressure, and I went from being able to stroll three miles to, within days, struggling to walk a half block without getting short of breath. To be frank, it was really horrible.

My untreated apena was severe -- characterized by 47 awakenings per hour -- but, my average oxygen saturation was 97%. Seemingly, I was sleeping lightly, starting to lose oxygen and startling awake, over and over again.

On the CPAP, with pressure as low as 7, my AHI dropped to between 0.0 and 0.3 per hour. And, symptoms I had before -- like random palpitations throughout the day -- completely stopped.

What changed was, as I mentioned above, dizziness, swallowing air, ear pressure, tingling, feeling "bubble headed", etc.. Noteably, my diaphragm would feel rock hard in the morning; I felt like I was doing stomach pumping breathing while on the machine.

The respiratory therapist I was assigned said "You are trying to take control" and that "Autoset will take care of you," when I insisted that the air pressure was too high and I could feel it zipping up and down. I then spoke with the pulmonologist and brought up a concern that I might be hyperventing. He looked at the AHI and said, well it looks excellent and you should try going to bed earlier and align your sleep cycle with natural circadian rhythms. This wasn't too helpfu. I also tried at least 6 different masks. Nothing worked.

Finally, I learned -- on this forum -- about pressures being too high and that some people do better on CPAP not autoset. My mother had a sleep medicine review of her cpap treatment that I attended (different health system) and her pulmonlogist dropped her pressures significantly, and she still had low AHI and was more consistent on the machine. So, I just took over completely at that point and dropped my pressure gradually until I could finally sleep 4-6 hours per night. The sleep quality remained poor, but it was sleep. This took about a year.

I found a new respiratory therapist to approve the changes (below) who said what I was doing was fine, since the AHI was still 0. No one would discuss oxygen saturation, respiratory rates, or any details beyond AHI. So, I have slogging along sleeping enough to survive but rarely feeling rested.

On 8.0 pressure zero EPR, I feel more alert, but tingling throuhgout my body and deal with more breathlessnes during the day and, often, a lot of aerophagia.

On 8.0 pressure with EPR 1, my muscles feel great, very relaxed, but I feel headachy, almost depressed, and I am exhausted all day.

On 7.8 pressure with EPR 0, I feel like I get periodic air hunger and day time heart palpitations come back.

I feel like what I need is 8.0 pressure with 0.5 EPR, or something like that. Or 7.9 pressure (which doesn't exist on my machine) without EPR. The sweet spot just isn't there, and I feel like I've dialed in as much as possible.

Still, however, my respiratory rate seems way too high.

Details:
I am on a FitLife Total Face Mask.
Air Pressure 8.0 - CPAP (no Autoset .. because the up and down changes wake me up)
I waver between no EPR and EPR 1

The data in the attached is 8.0 CPAP pressure, EPR 1.

Before I switch machines (and find a new respiratory therapist, since I have moved and am now in a new HMO), I am wondering if anyone has advice.

Screenshots of my latest data are viable in here: "CricketDancer Google Slides" <a href="https://docs.google.com/presentation/d/ ... ring">CPAP Data in Google Slides</a>

Here's the link directly: https://docs.google.com/presentation/d/ ... sp=sharing

Thanks for ANY insight you can provide. I want to get my health back and enjoy sleep again, so appreciate whatever folks have to say!

Be well.

Welcome! It would be helpful if you could make some changes in your posted chart.

* Please close the pie chart and the calendar so that the whole left panel can be seen.

* Please include in one screen shot the following:

Events
Flow rate
Pressure
Leaks
Snores
Flow limitations.

You can squeeze these all in by grabbing the gray bars that separate the graphs and pushing up a little. Please don't include any other graphs in this single screenshot.