advice, or someone to hire to help me interpret data?

[uphill]

Dear friends in apnea,

I have made many adjustments to my Dreamstation bilevel machine and gotten my AHI to well below 1 most nights. It's been that way for nearly two years. I've been using a machine faithfully for about five years. I've troubleshooted a lot and gotten improvements. But while things were even worse before the machine, I'm still very exhausted, feel like I'm waking from a bad experience every morning (like, "WOW, I need to get some sleep," instead of, "hey, it's morning!"), wake in the night multiple times, etcetera. I have entirely normal blood results, including thyroid and iron, and no autoimmune disease.

I may be in UARS territory. I have variable breathing periods, some where I barely seem to breathe at all, and some sub-hypopneic events (I've got user flags set up for them).

I have a very short exhale, like four seconds when the inhale is over three seconds. I know the ratio should be 1:2, say, three inhale, six exhale.

An overnight oximetry test showed my average oxygen to be 96, which is decent I think (though lower than daytime usual of 99).

I use the P10 nasal pillow mask (medium pillow) and tape my mouth entirely shut. I am not aware of leakage, though my husband hears whooshing at night. Maybe I should try a small pillow, though it cuts the inside of my nose eventually, which is why I switched to medium.

My current settings are 7.5 and 10.5. Until a few nights ago they were 9 and 12. (I thought maybe I'd get a longer exhale if I lowered the bottom number, but it doesn't seem to have helped objectively, though I am feeling like I'm sleeping deeper at night--but am even more spacy in the day). I have my machine on straight bilevel, not auto.

There's so much more that Oscar shows than I can understand. Things like minute ventilation and volume of air confuse me when trying to figure out the effects of adjustments. And there may be ways the machine can support me better. I don't want to impose on this forum with the amount of stuff I want to learn about my specific data. (I have relied heavily on this forum in the past--THANK YOU EVERYONE WHO OFFERS ANSWERS!). Are there people "out there" whom one can hire to take a look at Oscar data, figure out if there might be adjustments to machine and/or mask that could help, and stick with one through the changes to judge the effects? I would be SO GRATEFUL to find that. (I haven't found a sleep doctor or nurse willing/able to do that, despite years of trying.) Or should I just post things here?

Sorry if this comes off as a disorganized post. I'm severely tired!! And I know many of you are, too. THANK YOU for whatever you might suggest or request to know more about.

[uphill]

Here is an example of some disordered breathing from last night.

breathing sample 11-22-20.PNG (25.57 KiB) Viewed 1102 times

[Julie]

If you post your results in this thread according to directions in Oscar, which graphs, what not to include, etc. there are people here who'll interpret for you and make suggestions re adjustments if necessary. You don't have to 'hire' anyone!

[uphill]

Okay, thank you for letting me know, Julie. I will do that.

[Pugsy]

We can't really accept money for what we offer here without creating a sticky legal situation.

How many times do you think you wake up during the night? How long are you awake when you do? Why the wake ups?

Do you take any medications of any kind, even OTC? If so, what?

[uphill]

Hi, here is the screenshot per instructions for Oscar.

Pugsy, thanks so much for your reply. I take various medications for a little while at a time but nothing regularly. Have used trazadone, gabapentin, etcetera. They do help me stay asleep but they either stop working at a dose I can tolerate or lead to just as much fatigue the next day. RIght now I am taking nothing.

I am aware of waking between two and six times a night. Usually three or four. I stay awake for a few minutes or so. Am almost always able to fall back to sleep. I don't wake in any distress I'm aware of. But the screenshot of disordered breathing I showed did come within ten minutes of when I woke for the day. And I do have a sense of some periods of shallow sleep. In the morning I feel like I was struggling all night in some way, and my brain is very foggy.

Hope this material helps. I cut off the periodic breathing and high leak rate lines on the left b/c they were zero and I wanted to fit more in. (I changed the default font to 16 in Oscar and now what shows up on the screen is too big for me to get to the "accept changes" button to change it back, so I can't fit more in one screenshot.)

If I've left out useful info., happy to offer more--THANK YOU.

[uphill]

This was an unusually high leak-rate night. A few nights earlier I had lowered my pressure to 7.5/10.5 from 9/12.

[zonker]

Hi, here is the screenshot per instructions for Oscar.
<snip>
If I've left out useful info., happy to offer more--THANK YOU.

hey, uphill and welcome to the zoo!

generally speaking, the experts here(*I* am not, pugsy *is*) want to see graphs ordered this way-

Suggested Support Order for your charts
Event Flags
Flow Rate
Pressure
Leak Rate
Flow Limit (Only for Resmed machines, not on Respironics)
Below these charts, you can organize the remainder any way you want. We normally don't need, or want, to see those, because they end up scrunching up the charts we do want to see.

Left Side Calendar Off
On the left side, we want to see the calendar collapsed as monthly display is not of interest and it will end up hiding other info that will be wanted. We also want the right panel turned off, because it needlessly compresses the charts.

If you are using the F12 or screen shot function, it will automatically minimize the calendar and turn off the right panel for you and return it back to what it was set to when done.

You can hit F9 and F10 to turn off the calendar and right panel, or use the arrow for the calendar as shown below.

unless pugsy or someone else wants to see something specific, then by all means, do as they ask.

good luck!

[uphill]

Hi, zonkers, thank you for patiently reviewing all that! I had already read Pugsy's guidance on how to show the data, and I believe I did what is asked for with the posts just prior to yours.

[zonker]

Hi, zonkers, thank you for patiently reviewing all that! I had already read Pugsy's guidance on how to show the data, and I believe I did what is asked for with the posts just prior to yours.

ah! i didn't notice you had a dreamstation. was looking for the last line of the graph, which your machine doesn't need.

my bad, carry on!

[uphill]

No worries, guess I won't be getting any other responses but will try again when I am able to focus better and ask one specific thing (after making sure it hasn't been answered in the archive).

[Miss Emerita]

Uphill, I'd love to be able to see the information in the left panel above the colored bands and also below the line about respiration rate. Is there any way you can get a screenshot that will include that? One other little bit of housekeeping: could you put your machine and mask information in your profile? That way it'll be there whenever anyone reads your posts.

A question for you: why were you prescribed a bi-level machine?

It can be very frustrating to be compliant with CPAP and yet be foggy and sleepy during the day. I don't know whether you're in UARS territory or not. My general impression is that there isn't yet a great way to diagnose the condition. Daytime sleepiness combined with no obvious central or obstructive apnea, plus a good response to treatment with a bilevel (or ASV) machine -- I think that's basically how it can be nailed down.

Has your regular doctor done tests that might point to something unrelated to sleep? Thyroid and screening tests for autoimmune disease would be two examples.

The zoomed-in view you posted shows some waxing and waning (periodic breathing). It suggests you may be fairly close to your "apneic threshold," which is the level at which any reduction in the CO2 in your blood will fool your "breathe now" neuro-chemical system into thinking you don't need to breathe very much. Breathing with CPAP is more efficient and can tend to wash out some CO2, especially if you take some deep-ish breaths. If you're close to your apneic threshold, that will set off some dwindling in your flow rate and/or central events. Then you have some recovery breathing after the dwindling to catch back up.

All of that is pretty long winded. By itself, it is nothing to worry about, but the deeper breathing that starts it off, or that constitutes recovery breathing afterward, may possibly amount to a little arousal. Enough of those and it'd leave you fairly tired.

Can you scroll through your flow rate for a night and see how much of that is going on?

[uphill]

Hi, Miss Emerita, and thanks so much for your reply and thoughts. I will answer your questions and share some info./another question.

I was prescribed bilevel because I was having so little relief in terms of exhaustion from CPAP, despite a low AHI and near-perfect "compliance" (I hate the use of that word). The thinking was that if air pressure could go higher on the inhale, that might remove UARS, if that is what is going on. I had a hard time exhaling with the CPAP even with pressure relief at maximum, so I couldn't raise the air pressure high enough with a CPAP.

I have improved from bilevel, for sure. I raised my inhale level by several points and became less horrifically exhausted. But still, given that my AHI is below one almost every night, and I use the machine for about 8.5 to 9.5 hours a night, things should be better, I hear.

I am regularly tested for autoimmune conditions and thyroid (at least every year or so) because of my symptoms--all results are normal.

Thanks so much for looking at the breathing and telling me what that means. You wrote, "The zoomed-in view you posted shows some waxing and waning (periodic breathing). It suggests you may be fairly close to your "apneic threshold," which is the level at which any reduction in the CO2 in your blood will fool your "breathe now" neuro-chemical system into thinking you don't need to breathe very much. Breathing with CPAP is more efficient and can tend to wash out some CO2, especially if you take some deep-ish breaths. If you're close to your apneic threshold, that will set off some dwindling in your flow rate and/or central events. Then you have some recovery breathing after the dwindling to catch back up. By itself, it is nothing to worry about, but the deeper breathing that starts it off, or that constitutes recovery breathing afterward, may possibly amount to a little arousal. Enough of those and it'd leave you fairly tired. Can you scroll through your flow rate for a night and see how much of that is going on?"

There's not a ton of that periodic breathing going on, from what I can tell from a quick review of specific sections of a half-dozen nights. But this issue of having too little CO2 from too-high pressures (neat to know that place is called "apneic threshold") is exactly what I've just started addressing. I have good news to report. Previously, I've always had a bit of a trough in the flow rate chart when I begin to inhale--an almost flat (at the line level) effort, before I inhale. And my exhale was very small compared to inhale. But with pressures lowered by about 20 percent (both top and bottom), the flow chart looked better, both inhale and exhale. Then I read somethingby a sleep tech about how he almost never sees good results from PRESSURE RELIEF. So I changed it from 3 to 1 on my Dreamstation bilevel. And now all centrals have disappeared, and I'm sleeping with fewer awakenings!

One question, though. Is it better to have higher RERAs if that also brings less centrals, apneas, and hypopneas? I'm asking because at the lowered pressure levels (8/10) and with almost no pressure relief (aside from what is supplied naturally by the bipap), apneas and hypopneas are near or at zero, but RERA is higher (still under one most nights). I have woken every night or so with a pounding heart, which hasn't happened in a long time. Opinions on RERA vs. apneas, centrals, and hypopneas?

Many thanks!

P. S. Miss Emerita, I do have my mask and machine et al in my profile below my posts, always have--it comes in above the graphic for me, so maybe that's why you missed it. The info. above the colored bands was periodic breathing and large leak, both of which are almost always zero and were on that night also. I suspect the large leak threshold (the amount that makes it show up in a night's figures) is one but that I do have some nights of below one, because often the week's average is 99% no large leak, even though every night says I have none. (Hope I explained that alright.) But maybe that little isn't of concern anyhow.

[Miss Emerita]

Glad to see you back, uphill. (And sorry about the mistake re your profile information.) The good news in your post is that you are waking up less often. I hope that's the start of a trend; with a little luck your daytime experience will soon reflect sounder sleep.

The tech who said pressure support isn't helpful is wrong: it is very helpful to some people (e.g., me). But it's also true that it may help me and not help thee.

You're doing so well by the numbers that the best way to decide whether you're settings are right for you is to continue to notice carefully how the night goes and how you feel the next day. Many people (e.g., me) find it helpful to jot down a few notes every day on a piece of paper. (You may wind up devising your own little personal scoring system.) This will help you track trends.

I would give the same answer to your question about RERAs vs. other events.

To see an example of the idealized flow rate, just look inside the O on the welcome page in Oscar. You'll see a rounded top for inhalation, then a shorter, sharper trace for exhalation, followed by a little pause at the zero line before the next inhalation.

[uphill]

Thank you for your thoughts, Miss Emerita! I continue to have better results (fewer awakenings) with lowered "flex" (the Respironics Dreamstation bilevel machine's name for its added pressure relief beyond what happens with, say, 8/12 pressures). It may be that the added flex feature isn't needed on top of the natural pressure relief supplied by the Dreamstation. Just checked my numbers and see continued relief from CAs and just about all else except sub-hypopneas (User Flags in Oscar).

Excited to go see the idealized flow rate. I didn't know that was there and have been looking for such a thing for YEARS. Happy!