05-08-2023, 11:44 PM
Starting again, mostly on my own
Howdy, I'm new here. The first few paragraphs are my background story, feel free to skip them.
Questions are toward the bottom, context starts two paragraphs above the screenshots.
A few years back, while visiting the ICU for a pneumonia, my wife got diagnosed with sleep apnea.
We knew nothing about it, and essentially blindly trusted whatever medical and para-medical folks told us.
We ended up being sent home with a few oxygen tanks and a Trilogy 100, a bulky and loud machine I was told was a BPAP.
We did buy a few finger oximeters to spot-check things, and after a few weeks, it was clear she didn't need to be on oxygen anymore.
That left us with the Trilogy, which she valiantly tried to use, but between ill-fitting masks (we kept asking our DME supplier for new ones) and just persistent discomfort, she fell into the dark pit of non-compliance.
The equipment was a (used) rental, the DME supplier was charging our insurance over $500/month for it, and inevitably our insurance dropped coverage for it.
So everything was returned, and we just moved on. Guess BPAPs were just not for us.
Fast forward a couple of years, and I'm starting to notice my wife has a tendency to just not breathe for a while (10 to 20 seconds) during her sleep. Worse, she wakes up sleepy, groggy, and it's starting to be unclear whether she's awake or asleep (brain fog/narcolepsy/somnambulism-type symptoms.)
Now this would be a fantastic time to take her to a medical professional, except she absolutely refuses.
Her altered mental state makes her oddly susceptible to suggestions, but going to a doctor remains completely off-limits.
So that's frustrating. Since I'd rather avoid getting her involuntary committed, I go for plan B: Look into that sleep apnea stuff again, and try to do better.
I'm resigned to the notion that I'm not going to get insurance coverage. I don't have a copy of the old prescription. I have the name of the pulmonologist that did the prescription, but there seems to be no way to get any records in less than 15 days in the very best case.
So here is me, trawling around the web looking at all those web pages selling all those fancy machines.
Except they won't sell them to me without a prescription.
A few of them claim to have doctors on hand that can renew a prescription for you, but only if you're still currently on CPAP therapy (and presumably know what your old prescription said.) So those are still no-go.
And then I find one that had a "write your own adventure" approach to this problem, where I get to provide some prescription settings on a form, as best as I remember them. Well then.
After googling a bit more, I fill a prescription for an Auto-bilevel Max IPAP 20, Min EPAP 6, PS 6, and my machine is in the mail.
The sales rep I chatted with did warn me several times that a Trilogy 100 was a ventilator, not a BPAP and that this was simply not the same class of hardware, but I stubbornly pushed forward because when she was diagnosed I was clearly told she needed a BPAP, never a ventilator, and because I wanted her to have something rather than nothing, and fast.
And that's the story of how I ended up with a ResMed Aircurve 10 Vauto.
Incidentally, her brain fog largely dissipated before she got a chance to use the machine, so it's unclear if that was even related, and I still very much need to convince her to get checked, but that's another story.
Alright so she's had the machine for a week. We've setup myAir so we get their gamification of sleep apnea stats, with a big score and stuff. We had the Vitera fit pack, so we wasted a few nights trying different mask sizes, and some of the air leak stats are truly terrible.
The worst night this week had her AHI at 48 (I estimate her AHI without CPAP at roughly 80.)
But she had at least 2 "good" nights with very little leak, and low AHIs (7 and 4), which is great, except it's only for 3 to 4 hours, after which the mask comes off.
She's not able to tell me why she takes off the mask. She hasn't complained of dry mouth, stuffy nose or discomfort.
That's when I started wondering if I could get more details about what was happening than the toy-like myAir app. A few searches later, and I found this forum, and OSCAR.
OSCAR is so awesome it's hard to put it in words, and I feel very lucky that they have implemented support for my equipment.
Looking at the graphs there, there's a fairly clear pattern: Most of the BPAP runtime happens with IPAP between 10 and 16.
Then IPAP starts to climb to 20, various unwanted events occur at a faster rate, then the mask comes off, at which point we presumably get many more adverse events, none of them logged.
I'm attaching screenshots of two dailies that best exhibit that behavior:
What I suspect might be happening is:
- The machine observes more frequent OA events and decides to fix this by ramping up the pressure.
- The additional pressure not only does not help to alleviate the OA events, but ends up triggering CA and H events.
- My wife feels like she's suffocating, and rips off the mask, without actually waking up for any of it.
Is this a plausible guess? Are there other scenarios that could explain the numbers?
I'm planning to test this by setting the IPAP Max to 17 and seeing if it improves anything.
I'd be grateful for any advice from the more experienced folks here.
Questions are toward the bottom, context starts two paragraphs above the screenshots.
A few years back, while visiting the ICU for a pneumonia, my wife got diagnosed with sleep apnea.
We knew nothing about it, and essentially blindly trusted whatever medical and para-medical folks told us.
We ended up being sent home with a few oxygen tanks and a Trilogy 100, a bulky and loud machine I was told was a BPAP.
We did buy a few finger oximeters to spot-check things, and after a few weeks, it was clear she didn't need to be on oxygen anymore.
That left us with the Trilogy, which she valiantly tried to use, but between ill-fitting masks (we kept asking our DME supplier for new ones) and just persistent discomfort, she fell into the dark pit of non-compliance.
The equipment was a (used) rental, the DME supplier was charging our insurance over $500/month for it, and inevitably our insurance dropped coverage for it.
So everything was returned, and we just moved on. Guess BPAPs were just not for us.
Fast forward a couple of years, and I'm starting to notice my wife has a tendency to just not breathe for a while (10 to 20 seconds) during her sleep. Worse, she wakes up sleepy, groggy, and it's starting to be unclear whether she's awake or asleep (brain fog/narcolepsy/somnambulism-type symptoms.)
Now this would be a fantastic time to take her to a medical professional, except she absolutely refuses.
Her altered mental state makes her oddly susceptible to suggestions, but going to a doctor remains completely off-limits.
So that's frustrating. Since I'd rather avoid getting her involuntary committed, I go for plan B: Look into that sleep apnea stuff again, and try to do better.
I'm resigned to the notion that I'm not going to get insurance coverage. I don't have a copy of the old prescription. I have the name of the pulmonologist that did the prescription, but there seems to be no way to get any records in less than 15 days in the very best case.
So here is me, trawling around the web looking at all those web pages selling all those fancy machines.
Except they won't sell them to me without a prescription.
A few of them claim to have doctors on hand that can renew a prescription for you, but only if you're still currently on CPAP therapy (and presumably know what your old prescription said.) So those are still no-go.
And then I find one that had a "write your own adventure" approach to this problem, where I get to provide some prescription settings on a form, as best as I remember them. Well then.
After googling a bit more, I fill a prescription for an Auto-bilevel Max IPAP 20, Min EPAP 6, PS 6, and my machine is in the mail.
The sales rep I chatted with did warn me several times that a Trilogy 100 was a ventilator, not a BPAP and that this was simply not the same class of hardware, but I stubbornly pushed forward because when she was diagnosed I was clearly told she needed a BPAP, never a ventilator, and because I wanted her to have something rather than nothing, and fast.
And that's the story of how I ended up with a ResMed Aircurve 10 Vauto.
Incidentally, her brain fog largely dissipated before she got a chance to use the machine, so it's unclear if that was even related, and I still very much need to convince her to get checked, but that's another story.
Alright so she's had the machine for a week. We've setup myAir so we get their gamification of sleep apnea stats, with a big score and stuff. We had the Vitera fit pack, so we wasted a few nights trying different mask sizes, and some of the air leak stats are truly terrible.
The worst night this week had her AHI at 48 (I estimate her AHI without CPAP at roughly 80.)
But she had at least 2 "good" nights with very little leak, and low AHIs (7 and 4), which is great, except it's only for 3 to 4 hours, after which the mask comes off.
She's not able to tell me why she takes off the mask. She hasn't complained of dry mouth, stuffy nose or discomfort.
That's when I started wondering if I could get more details about what was happening than the toy-like myAir app. A few searches later, and I found this forum, and OSCAR.
OSCAR is so awesome it's hard to put it in words, and I feel very lucky that they have implemented support for my equipment.
Looking at the graphs there, there's a fairly clear pattern: Most of the BPAP runtime happens with IPAP between 10 and 16.
Then IPAP starts to climb to 20, various unwanted events occur at a faster rate, then the mask comes off, at which point we presumably get many more adverse events, none of them logged.
I'm attaching screenshots of two dailies that best exhibit that behavior:
What I suspect might be happening is:
- The machine observes more frequent OA events and decides to fix this by ramping up the pressure.
- The additional pressure not only does not help to alleviate the OA events, but ends up triggering CA and H events.
- My wife feels like she's suffocating, and rips off the mask, without actually waking up for any of it.
Is this a plausible guess? Are there other scenarios that could explain the numbers?
I'm planning to test this by setting the IPAP Max to 17 and seeing if it improves anything.
I'd be grateful for any advice from the more experienced folks here.
