Longtime CPAP user, feeling back at square 1

I'm looking for help, I've been using CPAP therapy since August 2013. My first machine was a Phillips Respironics Remstar Pro C-Flex + System One. My set pressure was 13 (Full facemask). I used the machine every day for 8 years, there were a couple of times there were power outages in those 8 years where I wasn't able to sleep at all. Luckily there were not many of those nights. The minute I stopped breathing I'd wake up and gasp for air, my heart would race. This would happen every time I'd start to fall asleep. I can't not use my machine. In May of last year (a couple of weeks before the recall) I switched to an AirSense 10. I had trouble starting with the first night, the autoset was too low, the high EPR was tricking my body into thinking I wasn't breathing. I quickly learned how to adjust the settings on my own and for the most part it was fine except once in a while just as I was about to fall asleep I'd wake up gasping, my heart racing, etc. Sometimes it will happen once or twice and then I'll sleep through the night. In a couple of rare cases though, this has gone on all night making sleep impossible. I never had anything like this happen unless I was not using the machine in the years I used my system one. The AirSesne 10 has the MyAir App, my reports are generally always 100. I think for that reason, my doctor doesn't take my complaints too seriously. The last time I saw him he said my results on the new machine were even better than the year previously when I had no issues. This past week, it's happened just about every night just as I'm about to fall into a deep sleep (only once did it go on for hours, the rest it would happen in the first hour, and then I'd be able to sleep).

I put another call into the doctor but I'm not holding my breath (no pun intended). I downloaded OSCAR yesterday and trying to make sense of the data. I'd be so grateful for any insight if someone wants to look at the data I have for last night or recommendations to try. I'm almost tempted to use the System One just to see if it's a change with me or this AirSense 10, but with all the info on the recall and having used that machine for 8 years I'm extremely hesitant to do that. I'm just really trying to figure out what's going on.

Wecome!

jjStegs wrote: ↑

Mon Mar 28, 2022 3:30 pm

if someone wants to look at the data I have for last night

Post it, and they will come.

jjStegs wrote: ↑

Mon Mar 28, 2022 3:30 pm

I'm almost tempted to use the System One just to see if it's a change with me or this AirSense 10

Let's not go there. For starters, just post one OSCAR Daily Details report from the AirSense 10 in this thread.

Thank you! I tried including the photo but when I try I get a 'sorry, board attachment quota has been reached'. File size is 513 KB. Let me see if this works.

jjStegs wrote: ↑

Mon Mar 28, 2022 5:02 pm

Thank you! I tried including the photo but when I try I get a 'sorry, board attachment quota has been reached'. File size is 513 KB. Let me see if this works.

I'd suggest using imgur next time, imgbb doesn't work as well, and *do not* shrink the images, they're really fuzzy and it's harder to read the numbers.

Also, myair giving you 100s is part of the reason that I say myair is useless when trying to fix problems.

That said, what I'd do is go into the clinical setting for your machine and change it to autoset mode, min pressure of 13, max 20, and see what the machine wants to do to help alleviate some of your breathing issues. right now, it's in CPAP mode, so it cannot respond to your breathing abnormalities throughout the night.

palerider wrote: ↑

Mon Mar 28, 2022 6:24 pm

jjStegs wrote: ↑

Mon Mar 28, 2022 5:02 pm

Thank you! I tried including the photo but when I try I get a 'sorry, board attachment quota has been reached'. File size is 513 KB. Let me see if this works.

I'd suggest using imgur next time, imgbb doesn't work as well, and *do not* shrink the images, they're really fuzzy and it's harder to read the numbers.

Also, myair giving you 100s is part of the reason that I say myair is useless when trying to fix problems.

That said, what I'd do is go into the clinical setting for your machine and change it to autoset mode, min pressure of 13, max 20, and see what the machine wants to do to help alleviate some of your breathing issues. right now, it's in CPAP mode, so it cannot respond to your breathing abnormalities throughout the night.

Thank you! I was using the autoset until the other day, I believe it was 12 - 14 range. I thought maybe setting it at 13 cpap like my system one was set may have helped but doesn’t seem to. I’ll try your suggestion.

jjStegs wrote: ↑

Mon Mar 28, 2022 6:35 pm

Thank you! I was using the autoset until the other day, I believe it was 12 - 14 range. I thought maybe setting it at 13 cpap like my system one was set may have helped but doesn’t seem to. I’ll try your suggestion.

Let us see what it looks like after changing the settings.

Isn't myair 100% based on usage hours?
---With 8 hours being 100?
Don't they think efficacy is important at all?

chunkyfrog wrote: ↑

Mon Mar 28, 2022 11:05 pm

Isn't myair 100% based on usage hours?
---With 8 hours being 100?
Don't they think efficacy is important at all?

myAir breakdown:

• Usage hours: 70 points (10 points per hour of sleep)

• Mask seal: 20 points

• Events per hour: 5 points

• Mask on/off: 5 points (>2 on/off deducts points)

Doesn't make sense that they give 20 points for a mask seal and 5 points for events per hour. Maybe it's because the events per hour isn't as controllable as the other variables.

myair is a "here's your trophy, look YOU PARTICIPATED!" thing, it's better than nothing, but useless when figuring out how to improve.

palerider wrote: ↑

Tue Mar 29, 2022 7:13 am

myair is a "here's your trophy, look YOU PARTICIPATED!" thing, it's better than nothing, but useless when figuring out how to improve.

Yeah exactly, at least if the AHI score was 0 I'd know something was up. When I first got the airsense last year, I forget what the autoset was set to, I want to say it was 4 - 14, because my CPAP pressue was a 13 on my system one, obviously 4 - 12 was no good. Looking back I have no idea why they set it like that. Last night based on suggestions I changed it back to autoset, only did 12.80 - 18. I know I felt like I woke up occasionally in the night but I do not remember having those 'gasping/stop breathing' moments. Not that those would happen every night anyway. If I'm to understand my results though it seems pretty clear I need to leave my range way above the 14. Those gasping moments though that happen on the onset of sleep, would those be the RERA indicators? There seemed to be more of those in my 3/27 data I posted.

I know my machine transmits data to my doctor, would they be receiving these same kind of detailed results that OSCAR provides?

If anything odd is jumping out at anyone with my results let me know. I can't tell you all how much I appreciate you teaching me about OSCAR.

jjStegs wrote: ↑

Tue Mar 29, 2022 12:20 pm

palerider wrote: ↑

Tue Mar 29, 2022 7:13 am

myair is a "here's your trophy, look YOU PARTICIPATED!" thing, it's better than nothing, but useless when figuring out how to improve.

Yeah exactly, at least if the AHI score was 0 I'd know something was up. When I first got the airsense last year, I forget what the autoset was set to, I want to say it was 4 - 14, because my CPAP pressue was a 13 on my system one, obviously 4 - 12 was no good. Looking back I have no idea why they set it like that.

There's a *LOT* of ignorance in the sleep apnea treatment world.

jjStegs wrote: ↑

Tue Mar 29, 2022 12:20 pm

Last night based on suggestions I changed it back to autoset, only did 12.80 - 18. I know I felt like I woke up occasionally in the night but I do not remember having those 'gasping/stop breathing' moments. Not that those would happen every night anyway.

With your pressure previously so much lower than it *needs* to be, I'm not surprised you woke up during an apnea, gasping for breath.

jjStegs wrote: ↑

Tue Mar 29, 2022 12:20 pm

If I'm to understand my results though it seems pretty clear I need to leave my range way above the 14.

Yeah, you spent the night bouncing along because of flow limitations (narrowing of your airway) which never really let the pressure get all the way to the minimum pressure. based on that one night chart, I'd say you should work on getting your min pressure up to 14, maybe a little more. As stated yesterday, I would recommend putting your max at 20. the only thing lowering the max pressure does is possibly prevent the machine from responding to your needs. (that's another thing that ignorant sleep profession people don't understand).

jjStegs wrote: ↑

Tue Mar 29, 2022 12:20 pm

Those gasping moments though that happen on the onset of sleep, would those be the RERA indicators? There seemed to be more of those in my 3/27 data I posted.

I'm not sure what you mean.
RERAs are just arousals that are caused by respiratory effort, but don't get counted as apneas. If you're not breathing and you jerk awake gasping for air, (and the apnea didn't last for at least 10 seconds) then I'd call it a RERA.

jjStegs wrote: ↑

Tue Mar 29, 2022 12:20 pm

I know my machine transmits data to my doctor, would they be receiving these same kind of detailed results that OSCAR provides?

They get most of the data, but not the juicy flow rate and mask pressure data.

jjStegs wrote: ↑

Tue Mar 29, 2022 12:20 pm

If anything odd is jumping out at anyone with my results let me know. I can't tell you all how much I appreciate you teaching me about OSCAR.

So, next time, expand the charts a little bit vertically so that Event Flags, Flow Rate, Pressure, Leak Rate, Flow limit, and snores fill the screen, we normally don't need any of the other strips.

chunkyfrog wrote: ↑

Mon Mar 28, 2022 11:05 pm

Isn't myair 100% based on usage hours?
---With 8 hours being 100?
Don't they think efficacy is important at all?

Not completely usage hours. It takes points off
If you take your mask off like if you get up to pee.

babydinosnoreless wrote: ↑

Tue Mar 29, 2022 7:27 pm

chunkyfrog wrote: ↑

Mon Mar 28, 2022 11:05 pm

Isn't myair 100% based on usage hours?
---With 8 hours being 100?
Don't they think efficacy is important at all?

Not completely usage hours. It takes points off
If you take your mask off like if you get up to pee.

That's not really fair--you should get extra points for masking back up after a potty break.

chunkyfrog wrote: ↑

Tue Mar 29, 2022 9:33 pm

babydinosnoreless wrote: ↑

Tue Mar 29, 2022 7:27 pm

chunkyfrog wrote: ↑

Mon Mar 28, 2022 11:05 pm

Isn't myair 100% based on usage hours?
---With 8 hours being 100?
Don't they think efficacy is important at all?

Not completely usage hours. It takes points off
If you take your mask off like if you get up to pee.

That's not really fair--you should get extra points for masking back up after a potty break.

Right?!!

babydinosnoreless wrote: ↑

Tue Mar 29, 2022 7:27 pm

It takes points off
If you take your mask off like if you get up to pee.

And you get points if you stay in bed to pee.