Cheyne-Stokes Treatment Advice?

[gemmy]

I have a history of CSR. About 3 years ago, my MD put me on bipap to help (wrong - but that is not the subject here). The new machine's algorithms did not alert me to CSR, so I thought all was good. My sleep has gotten worse, particularly in the last 6 months. Fired up Oscar, and textbook CSR, (Crescendos, decrescendos) malformed breaths, sub-threshold events (6-8 seconds) chained one after another. Periodic breathing (approx 70 seconds) for almost all of the night, with it getting really ugly during REM.

My problem- my sleep doctor wants to pull me in for a "new" sleep test. My machine measured AHI is usually around 3, she keeps telling me it is well controlled. I dropped by a precis, with screenshots before my last appointment, which she did not look at.

If I go into a new sleep test, I will likely be disqualified as being under the 5 AHI. So, no treatment for me. (Medicare) Despite flaming CSR.

Any advice on how to identify a new MD and how to navigate getting ASV?

more info:
Pressure has no affect (down to 4.0) so almost certainly not machine/pressure/treatment induced. Most probably High Loop Gain. Very good LVEF, some LV thickening, I swim 2.5-3 miles per day (90-120 minutes depending on stroke) non-stop 4 days per week. Get stress test and echo every year due to congenital issue (Anomalous Coronary artery treated about 5 years ago.)

[Nocibur]

Periodic breathing (approx 70 seconds) for almost all of the night, with it getting really ugly during REM.

https://journal.chestnet.org/action/sho ... %2904478-7

[gemmy]

https://journal.chestnet.org/action/sho ... %2904478-7
[/quote]

First, thanks for the reply! Yeah, I wasn't quite clear in way I wrote the original post. I should have said periodic breathing with CSR-morphology, most likely due to high loop gain. And my guess is that is related/caused by my thickened Left Ventricle. I had the pieces there, but really failed to put them together for you.

In any case, my problem is getting a doctor to recognize the issue, and prescribe an ASV to get relief. In the context of having a relatively low, untreated, AHI which is likely going to be below 5.0. Again these are almost continual waxing/waning CSR-like symptoms for most of the night, which get extremely bad during REM sleep.

Thanks for challenging me on that.

[Nocibur]

... which get extremely bad during REM sleep.

Actually, any central apnea is rare in REM.

Are the REM centrals documented in NPSG?

Feel like linking to SleepHQ?

[gemmy]

I’ve heard of Cheyne-Stokes before but I never really understood what it is. I think i might have read something on it somewhere.

"True" CSR is frequently associated with chronic heart failure. It can also be associated with getting CPAP treatment. My case it is probably a combination of a somewhat thickened left ventricle and a twitchy CO2 regulation mechanism.

Breathing becomes rhythmic, A deep breath followed by several shallow breaths. Many are unaware of the breathing pattern while they sleep, to me, it feels like running followed by being waterboarded. My basal (measured lying in bed on waking) has gotten as high as 150, my "usual" basal is 95-100.

[gemmy]

... which get extremely bad during REM sleep.

Actually, any central apnea is rare in REM.

Are the REM centrals documented in NPSG?

Feel like linking to SleepHQ?

For you, of course. I do not have an EEG, but I'm reasonably confident that the periods of highest event are during REM. I know this goes against the conventional REM/NREM rules, but jaggedness of my flow rate waves, slower circulatory response (thickened ventricle), high loop gain (probably made worse through my swimming and possible hypocapnia) at least partially support this, along with those periods generally corresponding to more variable resp rate, etc.

Sorry this took so long, but had a bit of an issue registering/uploading files.

https://sleephq.com/public/ebfee1d1-3c2 ... 7493937eaf

[Nocibur]

The only area that looks like anything of note is here:

gemma.jpg (52.81 KiB) Viewed 2689 times

and even that looks simply like Sleep-Wake Instability (NREM1 when there is real sleep).

[Nocibur]

...jaggedness of my flow rate waves...

Not necessarily a good predictor of REM, as only phasic REM has "REM-y Looking Stuff".

[Nocibur]

But if I were a gambling man, here is where I would call REM periods:

gemma.jpg (123.2 KiB) Viewed 2487 times

[Nocibur]

My basal (measured lying in bed on waking) has gotten as high as 150, my "usual" basal is 95-100.

Basal what?

[Dog Slobber]

But if I were a gambling man, here is where I would call REM periods:

Looking at the TV and MV, I'd make the same bet.

rem.jpg (419.16 KiB) Viewed 2452 times