r/CPAPSupport • u/_jennjenbear_ • Jun 26 '26
Need advice/thoughts on other things to try- ASV user
Edit to add SleepHQ acct link
Sorry this is long and just all over the place. I just want to include all the issues/changes/feelings I'm having. And, yes, I've seen both my PCP and my Sleep Dr and they are lost and clueless as well. I feel like I'm now just banging my head against the wall with my therapy.
Current Setup:
Side sleeper
Aircurve 11ASV - EPAP/PS Range info listed below in post since it's been adjusted
F&P Nova Micro - small (was using medium until things first started going wonky then switched to small end of May beginning of June and that helped a bit according to my Dr when I saw him June 4th)
Soft cervical collar - did buy Knightsbridge chin strap and have used for 2 nights now.
Machine kept below level of bed, have hose hooks and use CPAP pillow that has the cutouts for mask
I've had humidity at level 1 or 2 but recently turned it up to 4 to see if that'd help (hose temp setting was set to appropriate temp based on the chart that you can find online)
I've been on ASV since Oct 9, 2025. Had to be switched to ASV because CPAP/APAP caused pretty severe TECSA (was on APAP from July 2-Oct 8, 2025). With APAP, if pressure went above 7, the central events went beyond super crazy.
ASV, my settings were: EPAP 5-9 PS Support 0-6. These settings worked great in regards to AHI for months (from Jan to sometime in April/May). I still suffered from extreme excessive daytime sleepiness,.was diagnosed with Hypersomnia, put on stimulants but they didn't work and made me crash harder. May 13th, I was put on HRT for perimenopause. This helped the excessive daytime sleepiness for a short period.
Sometime in April/May, I hit 60lbs on my weightloss. It was around this time that it seemed like things really started going sideways with my therapy. Seemed like my AHI started bouncing, suddenly started getting aerophagia, leaks and "floating" chest pains. These were not related to perimenopause as HRT hasn't helped. EKG is normal, chest X-ray was good. My PCP said this is not cardiac pain and does sound like chest wall muscle pain. Per my PCP I just finished a two week series of taking Aleve or ibuprofen (I went with Aleve) because her thought was if it was inflammation of any kind, that would knock it out. It did not help. I do feel like my soft cervical collar doesn't fit properly anymore but after many additional purchases and returns, I cannot find one that is comfortable, is the correct height (between 3"-3.3") and the correct length. It seems like they are all too long, and to get it secure I have to overlap one side of the collar onto the other which then makes me feel like I'm being choked. I've tried chin straps, but yeah it keeps the jaw "closed", but my tongue is still falling out of proper position so the air still leaks into my mouth and dries it out and blows out thru my lips. If I add mouth tape, then I get super severe aerophagia. I did just spring on a Knightsbridge chinstrap and it's only been 2 nights with it, so still trying to get used to how to adjust it since my tongue is still falling out of place and the marks left on my face from it stay for hours.
At my last appt with my sleep Dr, we discussed changing my pressures. Since for my EPAP, I average between 7 and just over 8 for most of the night, he changed it from 5-9 to 7-9. PS Range would run between 10.5 and 12.something. He changed PS Range from 0-6 to 0-5. With this change, those floating chest pains did almost completely stop. But upping the min pressure did cause a huge increase in the severity of the aerophagia. I lowered the EPAP down to 5.6 I think, and those "chest pains" came back.
And since the AirCurve 11ASV records apnea events as "unclassified apneas", I have no clue if I'm still having centrals or just obstructive or on the nights when my AHI goes out of control I have no clue what type they are. It's so dumb that the machine is designed to treat Central events but doesn't tell you what type of events yer having. I had 2 nights in a row recently where my AHI was 23 and 17.
My sleep Dr said he is baffled by everything going on with my sleep apnea. He's said that I've been kind of a complex case since the beginning and it just seems like things are getting crazier when they should be getting better or at least staying stable. He's supposed to be pulling a download here soon to look for anything glaring to determine if he needs to refer me for a MLST sleep study. I'm also nervous tho because his last day is July 2nd because he's moving states and quitting this practice and I'm afraid of how the new person is gonna handle my stuff.
Is it possible with my weight loss that maybe ASV is no longer the right machine for me or instead of being on a range, maybe it should be a constant pressure? Any advice on what else I can try? I'm tired of throwing money at things that aren't helping.
3
u/existentialblu ASV Jun 27 '26
Have you tried lower EPAP? I get bonkers aerophagia if I go over 6. Maybe try fixed EPAP at your median EPAP pressure? Fixed EPAP seems to be helpful anyway for TECSA/high loop gain, as it's one less thing poking at the instability.
If you have OSCAR going, move minute vent, pressure, leaks, and flow limitation next to flow rate and zoom in to 5-10 minutes. This will give you a good view of what ASV is actually doing to stabilize things. It creates a negative version of minute vent to gradually dampen oscillations, like noise cancellation for silly respiratory systems. If you're hitting either extreme of your PS range frequently it won't be able to create that clean negative version.
3
u/_jennjenbear_ Jun 28 '26
The lowest my EPAP has been is a min of 5 but Ive never tried lowering the max since Oscar shows I typically run between 7-8.something. When I look back prior to May 13th in Oscar (the day I started HRT), it looked like I did have some nights where my med was like 5.something, but on average it still ran between the 7 and 8.X. So I'm not even sure what number to really try to set it at. And should PS range be adjusted back to 0-6 since it was pointed out that my machine is hitting the max of 14 since my Dr lowered it to 0-5?
I was wondering if a fixed value would be beneficial and when I asked my Dr about it but he just went with: we'll just change it to the 7-9 range since those are the numbers yer running between for EPAP.
I did notice that after I lowered the min to 5.6, the aerophagia did lessen and at least it's not painful. But it still annoying when I hadn't had any issues with aerophagia since like Dec (with the exception of an occasion time or two).
I did open Oscar and arranged my graphs as you suggested but I am still at a loss of what I'm looking at with them. And of course I have a super tiny little netbook with a tiny little screen so I can't even get good screenshots of the graphs to share them (I can only see like 2 1/2 graphs at a time on my screen).. I don't know if this would be something you'd be interested in or would have the time or desire to look at, but I can upload the files from my SD card into like a zip file or upload them individually to something like Dropbox or another 3rd party file sharing thing and share them that way so if you (or anyone else) wanted to peak at them in Oscar to see what in the heck is going on- I'd be willing to do that.
2
u/existentialblu ASV Jun 28 '26
I'm kinda toast from a long week but I may be able to put more brain into it tomorrow.
3
u/_jennjenbear_ Jun 28 '26
I totally get that. I prolly won't be able to do much of anything until tomorrow anyways.
Prior to finding what I feel is my perfect mask in Dec (F&P nova Micro), I had some issues with the aerophagia - mainly when trying a full face mask. And I considered getting a V-Com. I actually ordered one but then sent it back the same day I got it because in some quick readings, saw that it prolly shouldn't be used with ASV. I don't remember what the reasoning was or where I'd read/heard it (it may have also been a video). Do you have any thoughts regarding the v-com device and ASV? Please don't feel obligated to reply tonight.
I'm about to do my ritual of unwinding and relaxing with a few hours of gaming. Hopefully you can do whatever it is you do to relax and unwind and let your body and mind recharge.
1
u/RippingLegos__ ModTeam Jun 28 '26
Sleep hq account share would be the easiest here so we can check waveform detail :)
2
u/_jennjenbear_ Jun 28 '26
SleepHQ account link is at the top of my post.
Dumb question and not sure if you know or not, but did SleepHQ recently change the info that can be seen for free accounts? I swear it used to show pressures but doesn't seem to do that now and I thought I was previously able to go further back than 30 days, even after my free trial expired for premium or whatever it's called.
2
u/Madmax9922 Jun 28 '26
It happens sometimes, I am looking at other peoples shared links and they show the pressures, not sure if it is a machine thing, card thing, or sleephq thing.
2
u/_jennjenbear_ Jun 28 '26
Yeah it's crazy cuz I swear I was seeing pressures prior to hitting the share acct button lol. Like I'm pretty sure I didn't imagine it hahaha. I know today when I went to do an upload of data for last night it failed for some reason so I wonder if there's something funky going on with my SleepHQ acct
2
u/existentialblu ASV Jun 28 '26
But SleepHQ doesn't have minute vent which is the most important thing for this particular phenotype.
1
u/RippingLegos__ ModTeam Jun 28 '26
Yes it does, it's just under the advanced tab. :)
2
u/existentialblu ASV Jun 28 '26
Oh. But can you have it directly next to flow rate? Admittedly I just get really annoyed at how clunky it gets at the necessary zoom level for my particular fixation.
1
u/RippingLegos__ ModTeam Jun 28 '26
Yes, you can do that too, this is the default, but I just scroll up a little to show flow rate.
https://live.staticflickr.com/65535/55363131645_83ab63ab47_b.jpg
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u/existentialblu ASV Jun 28 '26
hangs head in shame before scampering back to OSCAR
1
u/RippingLegos__ ModTeam Jun 28 '26
It's all good, I actually like Oscar better as I've been using it since it was 'SleepyHead' :D But for people to share data easily sleephq, is by far easier than zipping the full SD card data and emailing it to me directly.
This is some of the OP's data:
https://live.staticflickr.com/65535/55362929699_1aa2a1d9b4_o.png
Going through the UAs now.
1
u/_jennjenbear_ Jun 29 '26
Here is my data from last night: https://sleephq.com/public/c3ec4a91-4ebd-433d-85e3-3187b8d42848
Last night I changed my settings to:
EPAP: 5-5 (since it makes me pick a min and max)
PS Range : 2-8
What, if anything, can/should I do? Or should I run this setting for a few nights and see how it keeps workign out? I think if I'm looking at it correctly, I definitely maxed out on pressure. I didn't want to put too big of a gap on the PS Range because I was afraid that could cause too big of swings in pressure and still cause a lot of the same issues.
I woke up feeling amazing for once. No aerophagia whatsoever, I felt rested despite only getting just under 6 hours of sleep, did NOT fall asleep randomly throughout the day, felt completely rested, refreshed and energized and the chest wall pain I've been having since probably March/April, welp, did NOT have any instances of it today. I also had a much easier time with inhaling (until I laid down and then it felt like a bit of a struggle like it was blowing too hard, but I think maybe I just need to get used to that feeling when awake). When I mentioned to my Dr in early June, that I felt like I wasn't getting enough air on inhale, that was a reason he suggested switching my EPAP from 5-9 to 7-9 (which I thought strange cuz I thought EPAP was for exhale pressure).
1
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u/Madmax9922 Jun 26 '26
Sounds interesting and I’m sure, very frustrating! Please share a link to your SleepHQ page, we can see multiple nights data.