CPAP newbie needs help figuring out proper settings

[thewanderer]

Glad to find you guys!

I've been trying to sort out and treat my apnea for years now -- started with an oral appliance, because I really didn't want to have to fuss with a CPAP, and was doing good with it for a while, but it no longer seems to be working for me. Got a recording pulse ox to see what was happening overnight so I could adjust the appliance correctly, and even at the best appliance settings, it was tracking 4-10 desats of 4% or more an hour and, more concerningly, periodically logging that I was spending 5-10% of my time below 88% saturation. I live at over 8500 feet, so 92-94% waking saturation isn't uncommon or concerning, but spending that much time under 90% isn't something I want to mess with!

Because I went the oral appliance route years ago, I don't have a current sleep doc and can't afford to see one right now, and I don't have a prescription for a CPAP.  So I've got a hand-me-down unit from a friend and am trying to sort this out on my own.  The sleep test that resulted in my diagnosis showed 13.2 AHI/hr, 1 CA/hr, with a recommendation of auto-titrating CPAP on 5-15cm.  When I got the CPAP (RemStar Auto Aflex), I set it on 5-20 cm because I figured the "auto" part meant it could find the right level for itself and I could dial in from there.  I've since done more reading on this site and adjusted it to 7-17, but I'm having ongoing problems that indicate I don't have what I need. I've done a few experiments with changing the Aflex rate, but am forced to admit that I'm basically just flailing here.

I'm having two issues:
1. The big one -- I do okay through a good part of the night -- I've found what I think is the right mask for me (I'm a side sleeper and often a mouth breather, though I'm finding it easy to breathe mostly through my nose with the Dreamwear Full Face) and am dropping off and making it through a good chunk of the night okay.  The problem hits somewhere around four in the morning, when I wake up partially and feel like I'm constantly breathing at the wrong time -- like I need to figure out how to time my breaths to what the machine is doing and I'm failing at it repeatedly. It's blowing at me when I don't expect it, or it feels like there's no air when I try to breathe in, or like it switches between the two partway through a breath (start to breathe in while being blown at and then the air flow cuts off, or feels like it does). It's hard to describe, probably at least partly because I'm not fully awake through part of it and then struggling with it in ways I don't quite understand as I become alert (at which point I take it off and hope I can get back to sleep). I've always found trying to match my breathing to anything anxiety-inducing (breathing exercises are the opposite of relaxing), and feeling like I'm suffocating when I get it wrong just makes it worse (and going back to sleep impossible). I can't figure out why it seems to work for me early in the night but the way the machine operates seems to utterly fail me later. Nor can I tell if it's doing something different or I am.

2. The confusing one -- I'm still wearing that recording pulse ox at night, as I figured it would help me know when I get my settings right, and even though the RemStar is showing pretty low AHI numbers, the pulse ox is showing the same range of desat incidents that it did when I was wearing an oral appliance -- 4-10 desats of at least 4% per hour. So either it and the RemStar are using different criteria (very likely) or one of them isn't reading right (can't rule that out).  I'm not sure how to compare the pulse ox's desats to the RemStar's AHIs, but it certainly appears that the CPAP thinks I'm doing better than the pulse ox does (and better than I feel the next day!). And either way, it means my apnea's no better than it was with the oral appliance, which was a lot easier to sleep with.  That said, I'm at least not seeing the 5-10% of time under 88%, and I'm actually seeing a little time above 95%, both of which are a definite improvement... but I have a suspicion that that's because I don't sleep as deeply with the CPAP on, which isn't helping me feel any more rested the next day.

I'm attaching my Oscar report from a recent night below (can't get last night yet because my computer refuses to read the SD card). My pulse ox isn't compatible with Oscar, so it's not on there, but I can provide that report if anyone thinks it would be helpful for anything.

I'd appreciate any help in figuring out what's going on and what I need to do to make this work for me.  I'm very tired of struggling with this... and very tired in general.

Thanks!
Marian
 
   

[Deborah K.]

I'm not at all familiar with your machine, but I think you need to raise your start pressure to 8, as you seem to shoot up above that all night. Making that change might help you sleep more comfortably and without so many wake-ups. Give it a try. Then post a chart tomorrow, and let's see if we should change it again.

Again, welcome, and best wishes for achieving great therapy and comfort!

[thewanderer]

I'll give that a try.

Thank you,
Marian

[thewanderer]

Here's my Oscar report from last night.  Slightly better subjective experience (less chasing breaths at 4am), but still not doing great.

Any more suggestions for what to do or what's going on here (I'm at a complete loss to read this).

many thanks,
Marian

   

[SarcasticDave94]

It's been a long while since I've used any RemStar machine. Unfortunately I was not successful with it. Sorry for the negative start to the suggestion.

Your best answer really would be get a current ResMed AirSense 10 or 11 AutoSet replacement.

You do not need to work with a sleep specialist at all. Insurance will not require that specialized input. Your primary care physician, dentist, etc. might help with a script. Please do not fall into the "you need a sleep specialist" trap.

Remember the old Operation game? Doctors get small dollars, specialist gets big dollars. Don't get zapped.

The Philips Respironics machines have to be very close to therapy pressure needs, will not allow lower than required because they're slow, reactionary devices. And they miss some events. ResMed is not this way, its pressure setting can be set a bit lower but still give better therapy.

Supplier #2 sells used CPAP, and online search for DOTMed has some possible less expensive units too. Diligent research suggested.

The machine you'll want us specifically again, ResMed AirSense 10 or 11 AutoSet. Suggestion to avoid all other brands.

Current status, you may have to increase minimum above 8. Also try different Flex settings, likely though flex 3 will be off feeling more than others. There's possibly 2 flex styles too. See what's best overall there.

[thewanderer]

Thank you -- I'll contact my primary care doctor to see if she can help me with this. 

Your information about how the machine I have works (slow and reactionary) helps explain some things.  Sounds like it would be very hard, if not impossible, to dial in to the right settings when it doesn't have the flexibility to adapt if/when I'm off.

In the meantime (while I pursue trying to get a ResMed as suggested), I'll try increasing the minimum again to see if it helps.  Regarding your other comment:  "Also try different Flex settings, likely though flex 3 will be off feeling more than others. There's possibly 2 flex styles too."  I'm not entirely sure I understand.  The machine has what they call AFlex and CFlex, with three settings for each.  The manual says CFlex works "by providing pressure relief during the expiratory phase of breathing" and AFlex works in three ways: "1) by smoothing the transition between the end of inhalation and the Therapy Pressure beginning of exhalation, 2) by providing significant pressure relief during the beginning of exhalation, and 3) by reaching an end exhalation pressure of no more than 2 cm H2O below the high point of inspiration."  I'm not sure I entirely understand the difference between the two, but set it on AFlex because it sounded like it was more adaptive.  I have been wondering, however, if possibly the changing pressure when I take a breath is part of what's causing the feeling that I'm chasing the machine instead of breathing naturally.

Would you recommend turning it off altogether or trying CFlex instead?  I realize which is best is probably very personal -- just wondering if you have a suggestion of the option that might be the best place to start.

Many thanks for your help and advice,
Marian

[SarcasticDave94]

Regarding the flex choices, if you've tried both C and A variants, you'd see which is better for you in feel and results. Most found flex 3 to be disruptive or disagreeable somehow.

[thewanderer]

Thanks -- I appreciate your help.

Marian