Central Apnea and Bi-Level ASV Help Needed

[Rubicon]

Anyway, the gist of it is that I'm not happily sleeping restfully and I don't know why. I never paid much attention before because it WORKED for 9 years. Now, not so much. My days are miserable, unrested, and I believe I am even having "awake apneas". (Is that a thing? Feels like it!) To top it off, I've started having trouble breathing during the day - shortness of breath - and was just diagnosed with fluid on the lungs and congestive heart failure. I can't help but wonder if it is all related in some way??

2 things:

1. You gotta identify the cause and fix daytime SOB. That's a BFP. At least get an oximeter to push your case.

2. If we believe SERVE-HF and CANPAP, overall, any kind of xPAP is not going to help you live longer (OTOH, it's not like it's going to kill you tonight, either).

That said, you need to ask "Is my QoL better?"

And since the answer to that is clearly no, gather data and start DWing.

[Rubicon]

I tried to look for a link between PAP therapy and...

Here's something interesting about-- well, a lot of stuff:

In another huge study, Yaggi et al (2005) looked at AHI and the risk of catastrophic events, and it became quite clear that severe OSAS (AHI > 36) was associated with much greater risk:



The scary part, however, was that these patients were being treated:

Many patients with the obstructive sleep apnea syndrome received some type of treatment for sleep apnea after the initial evaluation. Thirty-one percent achieved a weight reduction of 10 percent or more; 58 percent were using airway pressurization for at least four hours per night for five nights or more per week; 15 percent underwent upper-airway surgery.

Now, you can argue that "Hey, that compliance was poor!", but that's a scary number.

Applying this to your case, I would submit that if you current therapy isn't working, you shouldn't be looking at SERVE-HF, you should be looking at Yaggi, and work around the Canadian system (and don't tell me it can't be done, I know it can. My brother is Canadian and does it all the time).

[lynninnj]

I tried to look for a link between PAP therapy and...

Here's something interesting about-- well, a lot of stuff:

In another huge study, Yaggi et al (2005) looked at AHI and the risk of catastrophic events, and it became quite clear that severe OSAS (AHI > 36) was associated with much greater risk:



The scary part, however, was that these patients were being treated:

Many patients with the obstructive sleep apnea syndrome received some type of treatment for sleep apnea after the initial evaluation. Thirty-one percent achieved a weight reduction of 10 percent or more; 58 percent were using airway pressurization for at least four hours per night for five nights or more per week; 15 percent underwent upper-airway surgery.

Now, you can argue that "Hey, that compliance was poor!", but that's a scary number.

Applying this to your case, I would submit that if you current therapy isn't working, you shouldn't be looking at SERVE-HF, you should be looking at Yaggi, and work around the Canadian system (and don't tell me it can't be done, I know it can. My brother is Canadian and does it all the time).

This is interesting indeed and makes me glad I am able to well manage my care at the moment.

[palerider]

Unfortunately, I don't know what my "Oscar daily pages" are! Is the S9 capable of producing these?

Oscar instructions: wiki/index.php/Oscar:organize

Yes, your S9 VPAP Adapt creates full data that Oscar reads.

[palerider]

IMO, SERVE-HF was a valid study. I mean, it's ResMed itself that sponsored it.

They should be ashamed of themselves for the way it was conducted.

Using previous generation machines, which don't even behave the same way that the S9+ models do...

[Rubicon]

IMO, SERVE-HF was a valid study. I mean, it's ResMed itself that sponsored it.

They should be ashamed of themselves for the way it was conducted.

Using previous generation machines, which don't even behave the same way that the S9+ models do...

Not only that, the vast majority of patients were German and French, and we all know how they titrate!

Would the S9 algorithm have gotten the patients to at least die a little less often that the controls by maybe picking up a few more obstructives? IOWs, at oAHI = 0.0 (assuming the S9 would do that) you're going to live, at oAHI 3.0 you're going to die?

I think that's a tough sell:



If the theory that increased mean pressure is the culprit for the increased deaths, and if the S9 response would be an increased mean pressure, then you could also argue that an S9 would create even more catastrophic outcomes.

[Rubicon]

[Look of surprise and amazement] That research was done when I was knee-high to an octopus. Research CANPAP. CPAP don't help.

What do you mean? Of course it does!

https://www.ahajournals.org/doi/full/10 ... .91.6.1725

https://sleepreviewmag.com/sleep-health ... 0afterload.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4244615/

https://watermark.silverchair.com/sleep ... RWnKundESQ

https://www.frontiersin.org/articles/10 ... 81054/full

Million other references.

[Respirator99]

OK, perhaps we should get this thread back on topic.

Unfortunately, I don't know what my "Oscar daily pages" are! Is the S9 capable of producing these? It has an SD card, but I personally never looked at the data when everything was working, and haven't reported it to anyone in YEARS. If you can refer me to a resource that can teach me how to extract that data I will make that happen (once I extract myself from the rabbit hole I will most assuredly tumble down in the process!). In the meantime, I will figure out this imgur thing.

Oscar is a software program which takes the data from your machine (via the SD card) and presents it in a highly detailed graphical format. You need to download and install it on your computer - it must be a "real" computer such as PC, Mac, Linux or Chromebook. Oscar supports a wide range of machines (including your S9). All the data remains on your own computer, so there are no privacy issues. If you want to share your data you need to create a screenshot image, which is then uploaded to a service like Imgur for us to view.

As an alternative, you could use SleepHQ. This is a web-based program which is somewhat similar to Oscar but not yet as well developed. SleepHQ can be used with any device that has a web browser and card reader including phones, tablets etc that Oscar won't work on. One downside of SleepHQ is that it needs you to upload your data to an external server, so there is a potential privacy issue. Its great advantage is that you can provide a link and people on the forum can look in detail by zooming and panning across the graphs. You don't need to create a screenshot.

Links to both programs are included in my signature below.

Whichever way you go, it would be really helpful for us to see the data. Could you post a daily from some years ago when your first machine was working well, and a more recent one with the complications you are now experiencing.

[Rubicon]

And don't forget the EF.

[lynninnj]

Re: Sleephq privacy issue-I don’t use my real name.

No privacy issue at all.

If they can trace machine number 68573245598 or whatever then they can have fun with it.

(This technique works great for any number of websites that want your data. Additionally if you are un the US-I can’t speak for outside the US- I highly recommend getting a dedicated goodle voice phone number for those websites or businesses you may want to reach out to but you don’t want them selling your info. I use this for grocery stores too so I can get my discounts. GOogle voice ringer is turned off so anyone can call all they want-I can access it when I need it. HTH)

[MRC'69]

There's a lot of information to unpack here! I'm working on that...

In the meantime, I just wanted to mention that I had dialed my ramp up to 30 minutes and without the "constant" assault of backup breathing as I try to fall asleep, I have fallen asleep very quickly the last two nights and have gotten a couple of decent nights rest.

And yes, I do have the original sleep study. Most of it is Greek to me, but if anyone is interested, you're welcome to it.

I'll be back when I understand more about what I am asking about.

[robysue1]

In the meantime, I just wanted to mention that I had dialed my ramp up to 30 minutes and without the "constant" assault of backup breathing as I try to fall asleep, I have fallen asleep very quickly the last two nights and have gotten a couple of decent nights rest.

That's good progress.

And yes, I do have the original sleep study. Most of it is Greek to me, but if anyone is interested, you're welcome to it.

I'll be back when I understand more about what I am asking about.

I'd suggest posting the original sleep study with your personal identifying information blacked out. You'll need to post the image somewhere like imgur.com and then link to the image in your post. We'll be able to help you learn what all that "Greek to me" gobbledy-gook on your sleep study means.

Seeing the sleep study will help a lot of us understand how bad your untreated apnea is and that will actually help us understand what your ASV machine is supposed to be treating. And that will help us figure out how to help you get the settings dialed in.