Improving BiLevel Therapy

[gohoos1998]

Agree man. 

No prob - good to at least know others are going through it (although wish that was not the case for any of us).

Will be back posting my data later in the week probably.

[THEVGE]

Wel, here is number 3 recognizing your struggles. Thin, UARS like symptoms, W-shaped expiration (what is this????), ups and downs, mentally and physically exhausted.....following this thread and chipping in where helpful. Same thoughts as you, also for the aerophagia. This is my current struggle.

One bonus issue I (think I) have is over-ventilation due to required high PS at trigger very high (else CA overload) resulting in vasoconstriction in my hands and feet. This has been diagnosed as neuropathy but I never believed it (measurements where inconclusive, Dr. named it such based on my complaints). I have red color, tingly feeling, tremors (mainly left hand) not nice.......breath work (Buteyko) will temporary reduce feeling. You have this as well?

[SleepyBoi97]

Wel, here is number 3 recognizing your struggles. Thin, UARS like symptoms, W-shaped expiration (what is this????), ups and downs, mentally and physically exhausted.....following this thread and chipping in where helpful. Same thoughts as you, also for the aerophagia. This is my current struggle.

One bonus issue I (think I) have is over-ventilation due to required high PS at trigger very high (else CA overload) resulting in vasoconstriction in my hands and feet. This has been diagnosed as neuropathy but I never believed it (measurements where inconclusive, Dr. named it such based on my complaints). I have red color, tingly feeling, tremors (mainly left hand) not nice.......breath work (Buteyko) will temporary reduce feeling. You have this as well?

Hi THEVGE! Thanks for chiming in. 

Glad (but very unfortunate) to know there are several of us going through this together. 

Unfortunately, I don’t have anything helpful to say about the potential for ventilation-related symptoms. All I’ve ever had is chronically-cold hands and feet that are often very sweaty despite wearing socks and being so cold.

[gohoos1998]

Sorry to hear, THEVGE.

I really hope someone can chime in on the "W" expiration. It's pretty distinct but can't find any info on what it means.

I am just discovering that I need very high PS...my data looked best was at 6 (and can probably increase that)...

What pressure support do you use? Nevermind, as I see you use 5...

I do not have any of the vasoconstriction/neuropathy issues at this point.

[THEVGE]

I struggle optimizing my settings. Every time I notice more P and more PS improves the flow rate, but my body says no. My best data was at P13 PS 6 but this was unmanageable for me.

I think the "W" expiration may be an elastic effect from my airway. At inhalation the additional PS inflates the airway, but at exhalation my very narrow airway (assumption) goes back to it's normal state, but due to excessive PS and trigger very high, it starts bouncing/vibrating. So maybe my airway is actually tightening even further at exhale, shown as the "W". Just a thought.....

I am currently trying to "proof" this by increasing P and lowering PS, but at lower PS my heart quickly goes into atrial fibrilation so i feel stuck. My only hope for now is that DISE gives me a clear root-cause and a resolution. Because honestly, I tried everything.......and failed.

[THEVGE]

Ow, besides the "W" (which I really do not like) it seems I have many short obstructions at exhale that wake me up. So my AHI is 0 because these events are < 10 s but they still wreck my sleep. Do you have the same? I will post an image of a typical event from last night.

[gohoos1998]

Are you talking about those little squiggles right before flow rate goes from negative to 0/also when flow rate is at 0?

Or the one weird breath by the green line?

[SleepyBoi97]

Ow, besides the "W" (which I really do not like) it seems I have many short obstructions at exhale that wake me up. So my AHI is 0 because these events are < 10 s but they still wreck my sleep. Do you have the same? I will post an image of a typical event from last night.

Yes - this is similar to my experience, although I have a difficult time determining when I’m actually waking up. A pretty low AHI from my PAP device despite a large number of arousals and very uneven breathing. I pretty much sleep through the night without consciously waking up, but feel awful and as thought I barely slept.

[SleepyBoi97]

Not sure if you are are familiar with the Glasgow index, but it’s located here: https://www.fortaspen.com/sleep/

Basically an algorithm that calculates several indices to gauge irregularity in cpap flow.

I plugged in a few of my nights, and, oh boy, it didn’t look great. Pretty height skew and Variable Amplitude. 

Would probably be helpful to compare a few nights empirically without having to “guess” whether one night of flow looks less erratic than another.

[gohoos1998]

Actually just learned about this recently. Fun tool. At the worst, bolsters the idea that something is wrong still despite low AHI.

Mine was at 2.2 but that was just one night. As you say, probably could input data from a few nights and come up with some sort of plan.