Help analyzing OSCAR data - CA's?

[SarcasticDave94]

Ti Min default should be .3 and Cycle Medium

I've been trying different settings for Ti myself, adding more to the min because I have both Central Apnea and COPD. But it didn't help any.

[alemon]

Hey all,

I'm pretty much giving up. I just can't stand high enough pressures to truly wake up rested. I think I need settings 9~10-13~14, but I wake up with terrible aerophagia and stomach issues and GERD as soon as I hit 13 IPAP, even in VAuto to keep the average pressure down. It kind of sucks to know what would fix you but be unable to do it - at least I have some answers now.

I'm going to continue my use of bilevel, EPAP-8 PS3~4, but I don't think it's going to truly cure my sleepiness anymore, not unless by some miracle I can deal with higher pressures in the far future. Wish I had a better update for all the folks who messaged me asking for updates and details. Sorry.

[PeaceLoveAndPizza]

I completely understand the frustration, been there myself. Before giving up if you are game to try one more thing…

Mode VPAPauto
EPAPmin 5
IPAPmax 12
PS 5

If you have already tried it apologies, but what I want to understand is whether the lowered exhalation pressure coupled with the slightly increased pressure support will help.

[alemon]

Hello, Friend Pizza;


I gave the higher PS a try, but kept it 7-12. I actually had a relatively good day with it - the chart looks similar to my others, and more events than my 'usual' lately but:

   

Zoom on the choppy section at 4a:

   

I felt all right that day - probably better than in a long time. Still foggy but also awake - was up early, day energy, etc.

Then I had some life things happen and had to leave home on no notice, so I couldn't replicate. I was congested last night, back at home, very very tired, so I upped it a bit - slightly lower PS but higher EPAP. I know I should have stuck the same for another several nights, I just didn't want to fight against congestion, and the higher pressure helped.

   

I do not feel super well rested today. Can't say if it's settings or just the stressful life happenings. But thought if I had the data the comparison might be helpful. Was going to try to return to the 7-12 tonight for better data.

[alemon]

Hey all,

Nothing new. I've tried experimenting with slightly higher PS + EPAP that doesn't give me aerophagia. I feel awful today, and poor most days. Needing a nap two hours after waking levels of bad.

   

Large gap because I got quite sick in the interim, and the congestion had me boost EPAP - but it's not a change that I felt I should keep. Here's a day with a higher PS but slightly lower EPAP. Still bad.

   

I tried 7/12 again the other day but it just looked awful. Few events but hardly worth posting. For the first time I took my mask off overnight and slept for a few hours with that pressure - recently was in the hospital, I suspect maybe I got used to sleeping without. 

I might try straight pressure again. Idk. I just feel awful. I can hardly work. Bilevel has gotten rid of a lot of my events, but my day-to-day sleepiness and brain fog average is so much worse, with a few and far-between far-better days thrown in.

At this point I'm four months in, about three on bilevel. I'd hope that any getting-used-to-it is done by now.

Grateful for any insights but I've pretty much lost hope.

[alemon]

Variable with PS 5. I feel awful again, I'm so tired - I thought for about 20 minutes I slept well, literal 10 hours sleeping - but I'm exhausted.

[alemon]

Something interesting. I have a new sleep doc and she firmly believes I am over-titrated, as I don't have obstructive apneas at.... any pressure now. Ordered to try a lower pressure. The interesting thing is my charts from the past few days look almost exactly the same from when I tried my highest pressure (14/9) and currently trying the lowest bilevel pressure (10/7) I have since getting the machine - this is almost the precise 'opposite' of my most successful APAP settings from back-when by pure subjective feel, which was about 9.4 EPR 3. She actually wants me at 10/6 and to stay there, which I haven't tried as I felt 6 is quite low to breathe in - but on the other hand, I'm using a bilevel, so maybe it won't be an issue.

Honestly, I think she's onto something. I do have the UARS profile with a ton of awakenings and mainly unsteady breathing, especially during REM - but looking at my charts from the past few days, the previously higher EPAP just does not make a difference in how many restrictions I have. I started bilevel quite high, thinking that was the issue, adding more pressure. I'm not necessarily feeling better yet, mind you, but I had a decent day yesterday and day-before, which were at 10/3 with a vauto flex of 1 (I feel awful today, of course, I always do when I feel compelled to post). My last obstructive apnea was in August, and occurred at 8.3/6.3 (EPR 3) - previous to that, I had one at 6.2/4.2 (EPR 2). I haven't had any obstructive apneas since - though I have once or twice been startled awake feeling like I was choking, though OSCAR never logged an apnea. I do of course certainly sleep poorly every day.

These lower settings are all right, but I've been up at 3:30 AM the past few days with no great explanation, though it IS like what used to happen before starting PAP - might be that the extra PS makes just that bit of difference. I'm not sure. I feel a bit more like 'myself' for better or for worse though - the past two days, in spite of that, I didn't feel too awful - but I'm concerned maybe it's that I'm not adjusted to the new lower settings yet, and still have the 'momentum' of the higher ones. Weirdly tidal volumes appear to be the same - I don't think higher pressures have been helping that either.

Not sure what to do. I've mostly been ordered to stop trying different settings and stick with something for a month solid, so I'm trying to figure what would be "right" - 6/10, 7/11, 7/10 (previous 'good'  settings, though I think the lack of PS makes a bit of a difference), something inbetween so my EPAP is definitely over my previous apnea-event levels... considering Vauto again.

I'm also trying out modafinil, as we're investigating something like narcolepsy as well. Weirdly it helps my body feel awake - I feel I could go run a mile - but my brain is absolutely awful from my horrible night of sleep.


Anyway. The main point of this update is also to ask for opinions on a few philosophical questions, outside the above:

1. My new doc says she thinks my apnea is "well controlled" - If you look at my charts, though, some of this is because places there might have previously been a registered apnea there are smaller breaths, probably the PS, that make it not trigger for an apnea or a hypopnea but is certainly a major flow limitation. Is bilevel just disguising my AHI numbers?
   
2. 7 is usually considered the minimum comfortable pressure for adults in APAP. Do you think 6 would cause issues in bilevel, as in that bilevel we're adding pressure for breathing? I'm just looking for reassurance here. 
   
3. I still have tons of flow restrictions and arousals and choppy breathing in REM - no matter what setting I've ever tried, they hardly look different. Has anyone ever seen someone actually resolve these with a UARS profile with PAP? I've been watching this forum for the past four months, and I don't think I've seen a single success story with a profile similar to mine.