8 months in still struggling

[RyGuy]

Thanks again, friend, I really appreciate your responses.

A chin strap doing more harm than good was a big concern of mine, but I might be chasing a demon I don't need to be. I just talked to my sleep therapist, and I asked her about my leaks and if I should be concerned. She said they're so minimal they often don't record numbers, just blips on the wave form/graphs, so she said she wouldn't worry about them or about forcing myself to get used to a full face mask when the nasal pillows are working.

What is a concern, however, are my latest pulse oximetry readings. ODI of 11.2 (<5 is the target) and a lowest saturation of 77% (as I'm sure you know, anything below 90 is of concern). So I'm upping my minimum pressure to 9 (from 7), and I'll be purchasing my own pulse oximeter to track this myself.
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For anyone reading the thread and for my record keeping purposes, at this point what I'm guessing what has happened is:

- in late November/December, the weather changed enough (started getting significantly drier) that humidity at "Auto" wasn't enough for me, and it started to make sleep uncomfortable/not restful
LESSON LEARNED: PERIODICALLY CHECK IN WITH YOURSELF AND YOUR COMFORT SETTINGS AND DON'T BLINDLY TRUST ANYTHING LABELLED "AUTO"

- by late February - after my sleep therapist said "just use it more" when I explained how awful I felt - I started making adjustments myself; initially I lowered the pressure, which made treatment a lot more comfortable
LESSON LEARNED: TRUST YOURSELF AND YOUR BODY (and take any advice given by someone who's never had sleep apnea with a generous grain of salt) and DON'T LEAVE YOUR HEALTH AND THE MONITORING OF YOUR HEALTH TO OTHERS; YOU NEED TO TAKE CONTROL, GET AS MUCH DATA, AND REVIEW AS MANY RESOURCES AS YOU CAN (but balance this with the perspective of those with personal experience)

- it was early March when I discovered upping the humidity was the key, but at that point I was used to the lower, more comfortable minimum pressure of 7, which isn't enough for me
LESSON LEARNED: IF TREATMENT EFFECTIVENESS OR COMFORT CHANGES, LOOK AT COMFORT SETTINGS FIRST AND FOREMOST AND RESIST THE TEMPTATION TO CHANGE PRESSURE SETTINGS TOO DRASTICALLY (at least without a pulse oximeter to monitor blood oxygen levels yourself - note my AHI on treatment has always been good, so it's given no indication of problems - others' situations may be different)

MOST IMPORTANT LESSON I'M REPEATING TO MYSELF: DON'T GIVE UP - EVERYONE DESERVES RESTFUL SLEEP

Feeling hopeful for the first time in a while!

[Llort]

RyGuy,

For someone still trying to figure this out, you have a lot of good advice! I've found the O2 Ring pulse oximeter is pretty helpful in understanding my sleep beyond the AHI. I mean, I'm still struggling too. But the O2 and HR tell a lot of the story. I've finally had some good AHIs since getting an ASV, but between the O2 Ring and the fitbit, I'm seeing that sometimes I don't even get down to resting heart rate while asleep. So far, I don't know what to do with that data (I'm pinballing between specialists), but at least it makes my waking condition seem less random. Sorry you're dealing with the doctor shortage in BC. I used to live across the border on the Olympic Peninsula, so keep up with the PNW news. I notice with my fitbit that it rarely shows me getting the minimum normal amount of deep sleep. I wonder how many of us here are like that?

[Lucid]

A BMI of 37 is going to be tiring and sap your energy.  If you can build on the weight loss you've already achieved with CPAP and perhaps also gradually increase your level of exercise over time, you'll feel the difference.  

If you can shift to sleeping on your side you'll get better rest, too.  Check out different ways to use of pillows to support your body in the new position.

Good luck -- you've already made many healthy changes and you deserve to have restful sleep!

[RyGuy]

Llort: thank you for your comment. Unfortunately I seem to have lots and lots of good CPAP advice... that doesn't work for me for more than a night or 2. I got my own (Lookee brand) pulse oximeter and even checked it against the lab's to see how accurate it was - about 1-2% off but okay for my purposes. I'm happy I don't have to rely on my useless sleep therapist to provide me with a pulse oximeter every now and then anymore. The days I feel really bad my FitBit usually tells me I didn't get enough deep sleep the night before - just like you! CPAP, pulse oximeter, and FitBit all seem to tell me the same: I keep on having these micro-wake ups throughout the night that I don't even remember and it's preventing me from getting restful sleep (FitBit suggests deep sleep specifically).

Could you tell me more about your journey from (I assume) CPAP to ASV? How did you know you needed ASV? How did you choose it over another type of BiPAP? How long have you been on ASV? Thanks again for the response.

[RyGuy]

Lucid: thanks for your response. My weight loss seemed to completely stall last November when I started really, really struggling with CPAP. I'm certainly going to keep trying, but it's hard - it seems insurmountable - when most days I feel like absolute sh*t. I felt way better being bigger and not treating the CPAP (though I know it was killing me) than I do having lost a bit of weight and trying to use CPAP (which feels like it's killing me).

I normally sleep on my stomach/slightly on my side (P30 mask helps with that). Do you think going fully to side sleeping would be better?

This is the hardest thing I've ever had to do, and I just can't see a light at the end of the tunnel.