In need of therapy assistance ... long time lurker / OSA sufferer

[Pugsy]

Can you also get me a screenshot of your OSCAR statistics page?
Make sure that the "changes to device settings" section down at the bottom is included.
I just want to get a feel for what all setting tweaks you have tried.

Just because I don't deeply feel that a setting tweak will help....doesn't mean I wouldn't try. If you have already tried what I would maybe offer then there is no sense in my offering.

[jcoleman24]

Pugsy is giving some great help here, as per usual.

Curious, have you ever looked into a UARS possibility here? Your AHI doesn't seem to indicate serious issues with obstructive sleep apnea, yet your description of how you feel sounds decidedly untreated. Of course, PAP cannot fix everything, and how you feel may have nothing to do with what PAP can address, but if it is a UARS thing, then it might take focusing on different variables (and increased subjective analysis) to make sense of what is going on.

By any chance, do you have any data from the ResMed? Does it show significant flow limitations? Also, can you correlate any flow limitation spikes with arousals/wakeups? Same goes for leaks and pressure changes?

[Lillypie345]

Keep trying with SleepHQ....I need to see the flow rate zoomed in a lot...if you can't get it to work there is another alternative but it involves your getting your entire SD card contents to me so I can plug it in to OSCAR and look at a lot more stuff than you could maybe try giving us screen shots. Way too many screen shots would be needed and way too much work for you.

Think I got it now: (last two nights) Let me know if this works:

https://sleephq.com/public/e8af10f7-426 ... ceae6ff832
https://sleephq.com/public/ba084fb3-3a7 ... 2bd863e7b9

I might know of a source for you to get an older ASV (ResMed) to at least try though....used and I don't know how much it will cost to try it.
Are you willing to buy an older ASV yourself to try? Something to think about.

Yes - absolutely. I'm all about experimentation and seeing what works. I would probably have to wait a month or so until after Christmas; but I am definitely willing to give it a go for experimentation. One thing I have learned throughout all of this is that sometimes things are outside the normal curvature of explanation; and you won't know something works until you try it. (and monitor it...)

[Pugsy]

UARS did cross my mind and I cringed at the thought. I have always said I would much rather have central apnea and have to use ASV than have UARS and try to blindly deal with it using cpap/apap because the pressures auto adjusting machines might want to use aren't necessarily what is needed to effectively deal with UARS. UARS and OSA are NOT necessarily to be treated as equals and shouldn't be.

That's a topic for a later discussion.

[Lillypie345]

Pugsy is giving some great help here, as per usual.

Curious, have you ever looked into a UARS possibility here? Your AHI doesn't seem to indicate serious issues with obstructive sleep apnea, yet your description of how you feel sounds decidedly untreated. Of course, PAP cannot fix everything, and how you feel may have nothing to do with what PAP can address, but if it is a UARS thing, then it might take focusing on different variables (and increased subjective analysis) to make sense of what is going on.

By any chance, do you have any data from the ResMed? Does it show significant flow limitations? Also, can you correlate any flow limitation spikes with arousals/wakeups? Same goes for leaks and pressure changes?

Yes! While I am not as knowledgeable about the subject; I stumbled upon UARS on a reddit thread that made me think that might be part of the problem. (Not sure about a solution; but the diagnosis certainly makes sense)

Regarding the Resmed - It's an Airsense 10. I bought it out of pocket so there is no SD Card in it. I just stopped using it two months ago. I looked on Amazon; should be able to get a SD card here by tomorrow so I can post results and possible correlations as you asked.

[Lillypie345]

Can you also get me a screenshot of your OSCAR statistics page?
Make sure that the "changes to device settings" section down at the bottom is included.

Switching to Dropbox for clarity. here are the OSCAR statistics:

https://www.dropbox.com/s/ldf5o8a0bo2c7 ... S.png?dl=0


I can pull the Resmed data tomorrow once the SD card arrives.

[Pugsy]

One thing I have learned throughout all of this is that sometimes things are outside the normal curvature of explanation; and you won't know something works until you try it. (and monitor it...)

Exactly. Let me see if my source still has that used ASV. Will get back with you on that.
While I don't hold out all that much hope it is the magic trick....miracles can happen and as long as there is a remote chance at a miracle I would also be taking it if I were in your shoes.

I got the 2 SleepHQ reports up in front of me. Will take me just a little bit to do my thing with the flow rate.

[Pugsy]

Are you experiencing any nasal congestion at night?

[Miss Emerita]

I hope tweaking your settings will help you. Because you might be affected by apnea or UARS plus something else, I just want to mention two areas you might want to explore with your doctor, if you haven't already: POTS, and autoimmune disease. Both have fatigue after exertion as symptoms.

[Lillypie345]

Oh....you said you got a ResMed machine???? The AirSense 10....which model and what about it made you not a fan?
Do we have any OSCAR data from using that machine and when was it you last tried it?

Yep, I have a ResMed Airsense 10. I just recently stopped using it w/in the last 2 months when I received the refurbished Dream station back from the recall.

I'll pull stats as soon as I can get a SD card here.

As to the reason why I didn't like it - it's really one of those subjective things. When I switched machines; I had the lab technician copy over the settings I had been using on the Dreamstation. And from day one, I never felt like I slept as well with it.

I had it for a long time and of course tweaked it like crazy .. The best explanation I can give is that any air transition the machine provided felt palpable to me. It felt ... choppy whereas the Dreamstation felt smooth. (I I know that's not a clinical explanation - just the subjective experience I had while using it)

And then of course there were humidifier issues and the last month or so that I had it sounded as if the fan was beginning to fail. Very disappointing for a machine that was less than two years old and at least a thousand dollars out of pocket.

[Lillypie345]

Are you experiencing any nasal congestion at night?

The last two nights; actually yes a little. (mild cold symptoms) But in general - no. I had turbinate reduction / deviated septum surgery done a few months prior to getting my first APAP.

That said - it is probably time to see the ENT again for a checkup. There might be something going on I'm not aware of; and septum surgery isn't always a permanent fix.

Thank you for the reminder!

[Lillypie345]

I hope tweaking your settings will help you. Because you might be affected by apnea or UARS plus something else, I just want to mention two areas you might want to explore with your doctor, if you haven't already: POTS, and autoimmune disease. Both have fatigue after exertion as symptoms.

Thank you kindly for the suggestions. I will explore ALL options.

[Lillypie345]

Link to the original results from in-lab study:

https://www.dropbox.com/s/s8eyeo7rng2c2 ... p.pdf?dl=0

Hopefully I removed enough identifiers so I don't dox myself!

Should be noted: I no longer wake up frequently having to urinate; some of the basic OSA symptoms are gone.

[Pugsy]

Okay....I have been through Dec 8 report. Will do Dec 9 in a bit.

4 sleep sessions marked by turning the machine off and back on.
Longest was the second session and at least 30 episodes of where it looks like arousal/awake breathing to my eye. Some very brief and some quite prolonged.
3rd session wasn't all that long but I am not so sure you even slept much during it. It all looks pretty crappy and junky.
4th session was also brief but it is less junky looking.

We are going to need to review some nights where you aren't experiencing nasal congestion. Nasal congestion can show up on the flow rate breaths as flow limited breaths and you sure have a truckload of those. We can't fix FLs that are nasal congestion related with the machine.

I have some chores to do then will go look at Dec 9.

There won't be any useful graphs on the ResMed machine since you didn't have a SD card in it. The machine only stores the limited summary data and it's the graphs we need. Probably going to ask you to use it again....not what you wanted to hear but will talk about that later.


Save this....we are going to need to refer to it

[Pugsy]

Last night Dec 9....one obvious break in therapy.
Did you sleep better last night? Feel any better at all?

Off to zoom in on stuff.