8 months in still struggling

[RyGuy]

Hello everyone,

First time poster - let me start by thanking each and every one of you beautiful people who have come together to help others.

Issue: I'm 8 months in, and I still feel sleepy/lethargic/have next to no energy most days (way worse than my pre-CPAP days).

My AHI is <1 most nights (compared to 55 pre-treatment!). My mask leakage is among the lowest my sleep therapist has ever seen (even though I was a mouth breather, I adapted to my nasal pillows quickly). Based on the numbers, she's happy. Based on how terrible I feel most days, I'm not!

I understand this may just be my body and brain adapting to CPAP and I'll just need to be patient and wait (my bloodwork does show my health is improving); however, I'd love to get input from others who have been where I am.
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My first time poster info:

Sex: Male
Age: 38
Weight: 240lbs (25 lbs down from when I started CPAP!)
BMI: 37
Sleep position: most comfortable on my stomach, have felt good the few nights I've been able to fall asleep on my back, but usually I have to be dead tired to do so
AHI pre-treatment: 55
Apnea type: mostly obstructive
Started treatment: mid July '22

Machine: ResMed AirSense11 AutoSet
Mask: ResMed AirFit P30i Nasal Pillows
Humidifier: ResMed HumidAir 11 Standard tub

Mode: CPAP
Pressure: 7 (sleep therapist landed on 10-14 several months ago, reduced to 9-12 a couple months ago, I tried a lower constant pressure and liked it better)
EPR: On, Level 3
Humidity: 7 (previously had it set at "Auto" which for my machine just meant 4 it seems, and it left me feeling like absolute crap when - in retrospect - the weather turned drier)
Ramp: Off
Response: Soft
Temperature: 30 C (86 F)
Rainout: yes even with hose covers, but seems to be minor
Aerophagia: hell yes
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Beyond equipment, I'm trying lots of stuff to make sleep better. I've dramatically increased how cozy my bedroom is [blackout curtains, keeping the room around 20 C (68 F), tons of cozy pillows and blankets on my bed to use when needed, string lights, lavender room spray, and more]. I'm also taking cortisol reducers (ashwaganda) but have found CBD or melatonin make my sleep worse on CPAP.

I've also realized my left nostril is partially blocked. I just got a referral to an ENT, but it will likely be a while before I see them. Deviated septum? Polyps? Who knows. I've recently started doing nasal rinses (neti pot) before bed and using breathe strips, which both help (especially the rinses). I tried a full face mask, thinking my brain wouldn't let me fully sleep with my mouth closed. I found the full face mask clunky, my leaks were higher, and I didn't sleep any better.

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My questions for the Board:

1. Based on my OSCAR readings, should I change any of my settings?

2. Are my Flow Rate curves more jagged than normal? How do I address that?

3. My inspiration time is about 0.8 less than my expiration time. What does that mean and how do I get that closer to a 1:1 ratio?

4. Any other recommendations for restful sleep? 

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Sorry for the long first post, but I don't want to miss anything. Lastly I'll say that since I've downloaded OSCAR a month ago and have been making tweaks myself, I've made a lot of progress. I can feel myself better on some days and close to cracking this, I just need you beautiful people to give me the benefit of all your experience.

Thanks in advance!

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A selection of OSCAR screenshots:

1. Last night
   

2. Partial zoom in at a typical point in the night
   

3. Full zoom in at a different typical point in the night
   

[RyGuy]

Do these flow rate curves indicate expiratory mouth breathing?

The initial exhalation looks dramatic, like it could be mouth breathing (red), but then the rest of the exhalation looks more like inspiratory flow limitation (orange).

Thanks,

R

   

   

[mesenteria]

Hi.  Just above, first of the two charts, shows inspiration flow limitations.  The curve is initially steep, but flattens out during the middle portion which is a slowing of intake.  At least, that is my reading of it.  Please wait for other comments.

[RyGuy]

Thank you very much for your reply! Do the inspiration flow limitations suggest I should up my minimum pressure?

Like you suggested, I'll wait for other commenters as well.

I see you're in BC, too. Do you find you have to change your humidity and/or temperature settings throughout the year? Around December I noticed "auto" (which seems to just mean "halfway between min and max" on my machine) wasn't cutting it anymore. I upped my humidity to almost the max and felt, much, much better!

[RyGuy]

My sleep therapist tells me the magenta area indicates mouth breathing (no exhalation curve, but an increase in leak). 

But what's the blue area? No OA, no H, no increase in Flow Limit.

Could this be a burp? I don't have any bloating/pressure, but I do have bad aerophagia (just the burping part) throughout the day even after 8 months.

   

   

[Brucpap]

I am in the same boat, 3 months in.

My AHI numbers are great and the sleep doctor says I am treated, but still feel like crap.

Tolerating the machine, getting rid of any leaks, & jaw drop are the most important things I have learned (correct pressure of course).

I'd recommend buying a pulse oximeter like the Lookee/Wellue O2Ring that can get imported to Oscar. I just bought one a few days ago and even though my AHI is low, my O2 drops are significant and I feel this is why I am still tired. Does that mean I need more pressure, less pressure, bi-level, ASV, etc. who knows, but it's a start to figure out the next step.

I might have to hire someone outside of BC/Canada to get this sorted, not much help here in BC. Waited 10 months just to get the sleep study done, then almost 2 months to have a 10 minute call with the sleep specialist to tell me to get a CPAP machine.

[RyGuy]

Thanks so much for your response!

My sleep therapist recently sent me home with a pulse oximeter test again. I'm getting the results Wednesday, but I think you're spot on - I need to get my own pulse oximeter. I was wondering which end of the market I should go to - there are pulse oximeters for 20 or 40 bucks, but then the ones you mention at around 200. They're likely much more accurate and reliable. Which brand/model do you have?

How have you countered jaw dropping? I was a mouth breather, but seemed to adapt to my nasal pillows quite quickly. There's still a bit of leak every now and then which could be mouth exhalation, so I want to eliminate it. I just got a chin strap that I'm starting to try. I've previously tried a full face mask. I liked the breathing from nose or mouth option, but it was clunky and awkward especially for a stomach sleeper like me. Maybe I should give it another try though.

My process to get the at-home sleep test and even the machine was much quicker than yours (mine was the second highest AHI sleep therapist had ever seen, so maybe she rushed it?), but beyond the initial 1-2 appointments and adjustments, I've found her to be mostly useless and have wondered if I'm going to have to shell out for a YouTube CPAPer to get real advice/direction.

Thanks for your help!

[Brucpap]

I bought the Lookee Wrist O2 and get the data files to import into Oscar off the computer. No idea if it's super accurate, but it will show trends and probably better than a $40 one.

https://www.amazon.ca/LOOKEE-WristSleepO...17&sr=8-12

I follow this MacOS method to get the import file for Oscar.

http://www.apneaboard.com/wiki/index.php...ile_Import

The O2Ring is a popular a choice as well.

For jaw drop/leaks I am mouth tapping right now with cover-roll stretch tape and trying to find the right soft cervical collar which will hopefully stop me from having to mouth tape.

[RyGuy]

Thanks for the insight on the pulse oximeter!

I have a beard, so I think mouth taping could be a bit tricky, but I'm hoping I'll adjust to the chin strap I'm trying.

I'll update this thread with my sleep-therapist-ordered pulse oximeter results in the next few days, and in the meantime I'll research pulse oximeters.

Cheers

[Brucpap]

I have a light beard and it seems to work, I am just taping the lips/corner-lip/cheek part. Cover-roll stretch tape is the best I've tried, comes off relatively easy in the morning.

The wrong chin strap can make things worse because it can pull the jaw back into the airway. From what I have read/watched the Knight's Bridge would be the best option for chin straps (I have never tried it).

Look into a soft cervical collar as well, that's my next step to stop jaw drop.

http://www.apneaboard.com/wiki/index.php...cal_Collar