What to ask/say to sleep doctor?

[SleepyCPAP]

Hi all,

I’m open to opinions and advice. If you lurk elsewhere you might see I’ve asked on another forum too. This is a really rare event for me (going to a sleep doctor) so I’m trying to be ready.

Short explanation: I had an awful night recently, and SleepyHead (not OSCAR, which I also use) told me it was horrible and I should alert my doctor. 51 OA’s in 3.66hours, plus a couple Hypopneas and a CA - all with tell-tale signs of expiratory Palatal Prolapse (PP). I think I had EPR on which can make PP worse. My primary care doctor saw the note and said I’m getting a referral to the Sleep and Lung place. I’ve never been there before.

The last (only) time I saw a sleep doctor was also a one-off doctor referral, at a previous sleep clinic, several years into my CPAP use. That doctor said I was better treated than the rest of his patients. Yeah, probably because I read this forum for guidance! So I never went back. Why go to a practice where the doctor can’t get the patients better along with CPAP than I can on my own with forum help?!

So, I am not used to having face time with a doctor about this. I’d like ideas of what I should have (or pre-send) for the doctor, and what to ask, and what to push for.

Please be assured, my nights have been better since that night. In part I believe because I turned off EPR (but that means flow limitations appear). Also because the last couple nights I’m trying a wedge pillow, and getting my head tilted back at the top, kind of like the way the neck is to be tilted for CPR breathing. Last night I scored just one hypopnea and one RERA and I slept all night (AHI 0.15) - that’s more of the kind of good nights I expect. And the pressure report in OSCAR said Median 10.16, 95% 10.78, Max 11.40 (I'm set 10-12cm on "soft response").

Thanks in advance for your looking at this and advising.

- SleepyCPAP

[Miss Emerita]

Could you describe the signs you saw of palatal prolapse? Also, do you use Oscar? If you don't, could you? And could you post a chart from the bad night plus a more recent chart showing a more normal chart?

[chunkyfrog]

Repeat what you said here.

[Miss Emerita]

And yes, I totally agree with CF. You give an excellent account of things, and the way you do it will indicate that you are knowledgeable and thoughtful. Your account could be filled out by more information re the signs of palatal prolapse and might also benefit from Oscar displays of information. In addition, the Oscar charts might suggest to some of the people here some additional points or questions to raise w the doctor.

[SleepyCPAP]

Yes, I will be sure to include OSCAR evidence for the sleep doctor.

Sometimes you may have noticed other threads where I posted, in case this is a repeat, sorry! Here is a night with long stretches (7 or 12 minutes each) of expiratory Palatal Prolapse. These did not end up with marked events, but those occur too.

Palatal Prolapse Screen Shot

Palatal Prolapse Screen Shot 2021-08-15.png (225.23 KiB) Viewed 3267 times

Here was the warning that SleepyHead gave me a couple nights later (the worst stretch was over 14 AHI, but it came down when I tried going back to sleep and added another hour or more without scoring any events (because I was awake!):

SleepyHead warning to call doctor - High AHI

Sleepyhead Warning Doctor 2021-08-17.jpg (44.33 KiB) Viewed 3267 times

[Miss Emerita]

Thanks for posting the palatal prolapse flow rate graph. I would strongly recommend that you provide this to the doctor you'll be seeing. He/she would also benefit from knowing around how often you see this pattern. Was it a one-off, or is it something you see for part of the night most nights? Is there anything else you can correlate it with -- e.g., sleep position?

[SleepyCPAP]

Hi MissEmerita,

The first time any expiratory Palatal Prolapse showed up was this summer, very end of June. Just short bits of breathing. I find turning on EPR makes it worse. I find sleeping on a wedge (incline) pillow tends to make it better or go away. I’m adding a cervical collar now too, but that’s only one night.

The sleep doctor does not have available appointments until October. I’ve signed up for then, but asked to be put on the wait list in case of earlier cancellations.

[Miss Emerita]

That additional information will be helpful for your doctor. I'm so sorry about the long delay, and I hope you get in earlier via a cancellation!

[SleepyCPAP]

Hi All,

I finally got an appointment at the sleep doctor’s office.

I brought all of what I’d sent in advance, updated to the night before, and explained how things had been going well over the years, but after July my AHI was no longer well controlled, even with adjustments. I emphasized that a radical change in AHI was of concern, and how my average AHI was .70 for the month of July, but had been getting nights 10x that since then. How I’ve been non-functional at work and home on the rough nights.

They could not download more than 30 days of data. They could not see what the problem was because “5 AHI is considered treated”. They did not show curiosity about the expiratory Palatal Prolapse waveforms in the examples I’d printed. I felt so frustrated that I could not communicate and get understood.

It was suggested maybe I’d have less anxiety about this if I didn’t look at my data.

I’ve been told to raise my range another cm, and come back in a month. Ugh.

I am so frustrated.

Maybe I’ll update my treatment thread on the forum, but mostly I’m going to stay with “what the Doctor ordered” for a bit and then prove it isn’t working.

[JLROhio]

It was suggested maybe I’d have less anxiety about this if I didn’t look at my data.

WOW!

[Rdea]

Hi-

I just posted my experience with sleeping. You are the only patient I’ve found, that has mentioned the position of tilting head back to relieve symptoms. More people should know this might be helpful. All I find are suggestions to sleep in a sitting position, which bother than being next to impossible to maintain, is uncomfortable. I’m relieved not to be alone on the matter.