CPAP journey start - please help (thread)

[Negligee1136]

Just wanted to say keep going! I gave up in my therapy since I felt like I wasn’t getting anywhere but now thinking I need to go back to it. My numbers are somewhat similar to yours btw.

Thank you for your message! I am going ahead but I still feel no improvements and now am out of SD card for a few days. Got an exciting bilevel coming so next update should be exciting!

[Negligee1136]

Therapy has not been going well...to summarize a few points:

- this is UARS; some occasional mild OSA issue of no particular difficulty. To be clear, I realise UARS is hard to see in data but please trust me that it's there

- tried a full face mask first; had horrible problems with it (CO2 rebreathing and very sore nose bridge). So now I am using nasal pillows. They are comfortable. I wonder about my nasal breathing though sometimes. It does get clogged when I lie down, however this seems to resolve with humidity settings and IPAP of at least 8. Or at least air always comes in through at least one nostril. Wonder if that is a factor. Perhaps the same settings on full face wouldn't work with nasal pillows. 

- Pressure was changed a bunch over the last few months, with no effects. I have also tried higher pressures (11, 12) as previously suggested, even 13-14 but just got aerophagia instead.

- I have a Dreamstation BIPAP AutoSV now. Just had an opportunity to grab that. I have no intention to dive into things like causing CAs and trying to solve those CAs so just intending to use it as a bilevel. I have seen from other threads that's a whole rabbit hole so no thanks, it just seems as severe of an issue as UARS so might as well not. I can also grab a Resmed VAuto but I also expect something from bilevel Philips before trying that. 

- I experimented a bit with higher constant PS. Tried 3.5, 4, 4.5, 5.5. I just got clear as day TECSA though.  


So giving all that, I think best to go back to drawing board and scrap all of these. The very initial comment from sleeprider still makes the most sense to me: 

Mild OSA with predominately hypopnea events, and mainly in the supine position, The clustering of events suggests some cervical positional apnea may be present (chin-tucking). Start therapy with minimum pressure 7.0, maximum pressure 10.0 and EPR on full-time at setting 3. This will provide relatively low starting pressure of 7.0/4.0 (inhale/exhale), and the pressure support or EPR will treat flow limitation and hypopnea more effectively than constant CPAP pressure.

I think that still makes the most sense. EPAP 4 and never seen an issue of serious obstructive events. So I am just going back to that now. Starting from 7.5/4 and let's assess things from there...

If I have to take a guess, the solution here is more PS (but need to resolve any associated TECSA). Or at least this is what I am intending to do. If you have any suggestion in raising PS without triggering TECSA or in resolving TECSA / adjusting to it over time until it's no longer an issue, please share

Please stay with me...I fully intend to keep writing here until all is solved, don't want to make this another dead-end thread for anyone who has similar numbers and is reading

[quiescence at last]

some of the last plots where you were struggling with leaks on a large scale that you awoke as the leak dropped to negligent were definitely followed by one or a couple of wake-sleep transition CAs (that should not be considered artifacts of sleep apnea).

did you recently convert back to the full face mask? how do your perpetual large leaks look, now?

QAL

[Negligee1136]

some of the last plots where you were struggling with leaks on a large scale that you awoke as the leak dropped to negligent were definitely followed by one or a couple of wake-sleep transition CAs (that should not be considered artifacts of sleep apnea).

did you recently convert back to the full face mask?  how do your perpetual large leaks look, now?

QAL

Hello! Yes indeed I have had a chronic issue of leaks...yes those had some CAs with it but we had established those are not real CAs. Also occasionally had one or two actually obstructive events labeled as CAs but those are not the ones I am referring to as TECSA. 

I am referring about experiments over the last few weeks with higher PS and resulting in very clear TECSA, this has not been posted in chart so let me show you (attached) - I think that's clear TECSA

On the leaks, yes those have been an issue. I still use nasal pillows. Perhaps time to think of alternatives.

[Negligee1136]

Hello everyone...still fighting here...not giving up ever though, I want my life back

Good news is that I believe the settings are appropriate...it feels less horrible to wake upù

Bad news is that this is nowhere near appropriate treatment (still need a nap in the afternoon) and those leaks remain a problem. This leak is what I have with (1) bleep eclipse mask (a great zero-leak mask...if you don't mouth exhale) and (2) mouth tape...so quite an insane leak rate I am dealing with here which is really pointing towards the direction of a full face mask...and I have a big beard that I like so not sure this is going to work out...

But I will try again a full face...I am also looking at scheduling ENT to see if there's anything that can be done in terms of freeing up some nose congestion...

My hope is that turbinates can shrink once I finally get some proper rest, which I have heard anectdotally it is possible

But let's be honest for now even though some slight improvements, that flow rate ain't it yet, that REM is pure chaos

Next step is the Airfit F30i tryout

Sometimes I wonder though what comes first, the settings being not perfect or the mouth leaks making therapy imperfect? I wonder, because after all I do sleep most of the night so air does come in through the nose (the issue here is mouth exhale)

[Negligee1136]

Hey how you all doing...

will make it brief...I upped PS to 4.5, which I experimented is how far I can go before CAs emerge...

I do not feel better and psychologically I am starting to feel scared and hopeless. 

I started to integrate O2 and pulse rate readings. 

I do not know what is next to be honest. I contacted the best sleep doctor in my country and hopefully will see him soon...not sure what else to do.

[fotjon]

What does it mean when you wake up and your mouth gets filled with air, is it the pressure to high or the tongue in the wrong position, or just the jaw dropping? I have set the pressure to 9 in cpap mode. The mouth also seems a bit sore, like I'm mouth breathing and i have just a nasal mask. But when I started 1 month ago, this was rarely a problem, i had many days on Autoset mode without this problem, maybe I should change back to autoset (6-11)?

[Negligee1136]

Switched to F30i full face (finally?)

Flow rate does look a bit better now. Starts to resemble an actual flow rate

Now I am looking to normalise the very choppy areas that remain here and there. This is REM sleep (i can tell you because they wake me up strongly and I am dreaming lightly when that happens). 

So what's the consensus when most of the night is more or less normal but REM is too chaotic still? Can't really raise PS much from here (at most 0.5) before I get too many real centrals at like PS of 5. Can raise PSmax though. Or perhaps just raise EPAP? 

what's the consensus? Do I try to titrate for the worst case scenario (i.e. REM) and if so with more EPAP? Or introducing some auto-EPAP component? Or raising PS max? 

(remember, my sleep study was near-zero AHI during non-REM but AHI of like 8-9 in REM, with an unknown flavor of UARS in some proportions, probably also more chaotic in REM)

[Sleeprider]

Results look excellent. You are clearly using your AutoSV machine as a fixed bilevel with an occasion 0.5 cm increase in PS. you From this, I really don't think you have a problem with CSA unless PS is high enough to cause a CO2 imbalance. Of course this is an ASV and if you have central apnea, this machine is designed to address it by providing a breath with pressure support. To do that, it reaquires enough PS to create a breath when you don't take one spontaneously. IF I was setting up this machine to function this way, I would use your current EPAP min of 6.0, EPAP max 7.0, PS min 3.0, PS max 10.0. I said "if" because you clearly do not require an ASV.

[Negligee1136]

Hey thank you for the reply

I understand why you say this looks great (and to be fair that was my best night so far), but it still feels nowhere near where it should be (i still collapse by 2-3pm on my best days and can confirm it is indeed sleep the problem). Today was a far worse day than that, just not functional pretty much. There is this insomnia that I experience with way too many awakenings. Even that best night above was still cut-off too much, too early (once at 4.40am or so, again at 6am, and then again at 7 am so just got up by that point but I didn't want to).

To be clear this only happens with PAP. If I don't wear anything i just doze off the whole night. feels like sh*t the next day of course but I do not wake up in the middle.

My theory is rem consolidation is still bad.

Meanwhile I have an appointment coming up for an ENT. To check my nose because it doesn't work well. I just checked by myself in the meantime inside and the inferior turbinates are giganticly swollen. So there is also that to look into now. You can see there is a clear jump in improvement of the flow rate with the new full face mask, whereas the nasal pillow flow rate just doesn't look right.

But in general there's definitely problems, I have woken up before with airflow in my nose so little I was shocked how it could get so tiny.

Just took a anti-allergy / inflammation spray and it opened up my nose like CRAZY in a few minutes. So clearly something I am going to investigate with the ENT.

With UARS, I think it can sometimes be puzzling because it is also a component of what your nervous system reacts to. I am reading Barry Krakow's latest book and he does mention the mouth volume of air cannot substitute the nose, so one has to wonder if this nose issue is the whole origin of my UARS / what kind of brain reaction this creates / what happens if my nose gets fully functional again

The ASV / CAs component is really just not a concern here / not something that I am using. Just this machine has that capability if I ever need it for that but it is quite convenient as in general this machine you can turn on / off components to make it function in pretty much any mode. So that is why. But to be clear the whole triggering breath component is just turned off.