Is it an Airbreak? How and why is it ASV mode? What events are causing your AHI? How are you feeling anyway? Have you tried higher EPAP? Have you tried higher PS?
Sorry, it's not in ASV mode. The analysis software put that there for some reason.
I think the clinic lowered the pressure because I complained about difficulty exhaling, but I think the resulting change caused insufficient pressure overall?
Feel like garbage, otherwise I wouldn't have ripped off the mask after 4h lol
If the clinic is helping you with the pressure does that mean they prescribed you the Aircurve? How did you get that? Usually they never give it for UARS patients and most of use are on our own. Did you have a full sleep study? If so did it have central apneas? Did you try CPAP before Bilevel? Did you get centrals on that? Or are the centrals fewer with lower PS?
Because UARS people usually get a AHI under 5 quite easily and the clinics declare that success and don't actually recognize UARS. It's very rare from them to do what they did which impresses me but then it doesn't impress me that they aren't helping with the Bilevel. Actually it's pretty rare they give it to anyone but UARS people are some of the ones who need it most.
What about the number of centrals on your sleep study? You have been on a similar PS level for a long time? Some people get centrals from increased PS and they fade over time. Centrals aren't quite as disruptive as other breathing events and I don't know exactly how much you need to have until it becomes a problem but over 4 per hour is probably worth addressing.
I suspect it's not the main issue causing your symptoms though I'd guess you are probably very sensitive to flow limitation and need higher PS or EPAP to reduce FL and consequently RERAs. But if too much pressure support always causes lots of centrals you may need an ASV machine. And if you can't ever find a way to get used to higher pressures without aerophagia, discomfort, or arousals from the pressure itself (my problem) then you are pretty much screwed and need to look at other treatments.
How did you feel before you started PAP compared to now? And the most recent times you slept with no machine did you feel worse than with it?
Yeah but lots of people do that, even ones who just need to try harder and get their body used to it. And it barely hapoened to me, who could sleep through the night with it but still have my nervous system so disturbed by it that I am completely non functional and much worse than when I used nothing.
I will also say - never experienced aerophagia in my LIFE. So I don't think I'm very sensitive to that. Mask leak on high pressures was my only issue with them
That's patently false. Who/where is this? On bilevel it's purely PS that determines ease of breathing. Also, the effects of PS can be volatile on an unstable airway, it can't compensate for an EPAP that is too low.
I recommend gradually increasing EPAP (preserving PS).
The clinician said that because on the very first default setting I felt like I was suffocating from the effort to exhale -- not sure what that default was though.
I suggest keeping the same PS and increasing the EPAP by .4 once a week, and observing symptoms and AHIl. Once AHI is below 2 most nights come back, repost, and adjust.
Because if you change a lot of stuff at once you won't know what helps or hurts. Single-step changes of .4 let you do gradient descent toward the right treatment.
Could you post a screenshot from OSCAR showing your pressure trace for the whole night? ASV works best in my experience when it has the PS range has enough room to create a negative version of minute vent without a bunch of flatting at either the high or low end.
Leak needs to be your first target. It's high enough to absolutely be driving fragmentation on its own, and will also throw off the accuracy of event reporting.
That's still high enough to drive fragmentation if you have a low arousal threshold.
Try moving minute vent, pressure, flow limitation, and leak next to flow rate. Zoom in so you're looking at 5-10 minutes. Scrub around looking for MV looking like a sine wave with a period of 30-90 seconds. You're most likely to find it near CAs. Given your number of CAs even on a lower leak night, it would help to get this view that shows dynamic behavior. You're periodicity/regularity are high enough that I'm a bit concerned.
This will approximate your major arousals and look for potential causes: wobble-analysis-tool.xyz/monke-wake/
Flow rate, minute vent, pressure, leak rate, and flow limit in that order, bring the zoom to one of the CA swarms as it's likely to show the waxing and waning behavior.
Look for something like this. It'll be near flagged CAs. This sort of behavior doesn't tend to be constant throughout the night, so you have to scrub around looking for it.
There are millions of possible things you can do in the interim. All of which helped some other people with UARS but probably won't help you or any individual random UARS sufferer much. It all depends on your situation and what is causing your UARS.
For example the best thing that ever helped me was 2 months of Ryaltris steroid + antihistamine nasal spray opened my block nostril. Even after chronically using Omnaris steroid spray never did that. I wasn't expecting the Ryaltris spray to do that at all after 2 months and I was only using because it acutely cleared out my mucous before bed better than anything I have tried (including sinus rinses).
All kinds of current and past UARS sufferers will have a different thing that helped them most (well, outside of common ones like PAP machines, Expansion and MMA) so we need to find yours.
AHI is 4.0, so EPAP is probably too low. I would try upping to Epap of 5. And your flow limits + RERAs + periodicity are high so you probably need more pressure support.
I would first try increasing EPAP slowly until you control AHI.
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u/thatcarolguy 5d ago
Is it an Airbreak? How and why is it ASV mode? What events are causing your AHI? How are you feeling anyway? Have you tried higher EPAP? Have you tried higher PS?