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[Treatment] In search of general CPAP coaching
#1
Question 
In search of general CPAP coaching
Hi folks! New member here. I'm looking for help navigating all the variables in my sleep habits that I can mess with to try to improve my sleep. I really started tinkering with settings on my bipap machine at the beginning of last year when I discovered the ti min/max settings and the cycle/trigger sensitivity settings. I started bipap in 2014 with a relatively low pressure (12/8) and saw incredible improvement, which slowly deteriorated over time. 

I didn't really pay much attention to the stats from my machine until 2019 when I went in for a fresh study and jacked my pressure way up (22/18). Shortly thereafter, I had sinus surgery to reduce my turbinates and such, which also helped some. A followup sleep study knocked my pressure down to 19/15, where it has remained to this day. (I want to get a new sleep study, but covid.) 

I discovered those other settings in January of 2020 and cranking the ti min/max times, as well as the cycle/trigger sensitivity sent my AHI's way way down. The change all but eliminated my central apnea, if OSCAR is to be believed. (I'm a singer and I tend to breathe slowly and deeply so I figured setting the machine to allow me to do that is helping.) Again, at that time, I felt tons better. But although my AHI has stayed low, I've started to steadily feel worse and worse. I'm not sure if I'm getting false results from changing those settings or what. 

My journey has been complicated by a struggle to keep my mouth shut and keep my mask on my face. At first I used nasal pillows, and it was always a struggle to keep my mouth shut. I didn't have much luck with full face masks because of my facial hair.  After having to up my pressure, I switched exclusively to full face masks. I've tried a few different ones and eventually made them work by keeping the headgear extremely tight. This proved unsustainable as the compression on the back of my head resulted in extreme neck pain, muscle tension, and dizzy spells that prevent me from exercising. (I used to be an avid half marathon runner. These days I can't run half a mile before having to lay down on the floor for 30 minutes or more. When it was at it's worst, before I stopped using the full face mask, I could barely jog 10 steps out my front door. These days, I can't touch my chin to my chest for more than a minute or two without risking feeling dizzy and gross.) I finally found the Bleep Dreamport, which has helped my neck considerably. After much experimenting, I've found the right combination of tape and liquid bandage to keep my leakage comparatively low most nights, though it can be touch and go. I got an oral appliance that I tried to use along with my machine for a month or so. And although it was great at helping me keep my mouth shut and my leakage down, it started wrecking my neck all over again, which isn't entirely recovered in the first place. 

In short, I need help interpreting the crunchier data from OSCAR (I'm concerned about things like my tidal volume and minute vent. Also, not sure if my newer machine (I switched from an S9 early last year) doesn't record minimums for things like tidal volume or min vent, or if there's something wrong there) and I'd like advice about machine settings or mask choices/habits I can change to improve my sleep. My AHI is pretty low most nights, still zero central apnea. (though I wonder if changing my settings is resulting in false readings) But I'm still sleepy a lot of the time, my executive function is low compared to that blissful time in early 2020, and my head and neck are still very sensitive to jostling. I've also gained around 20lbs over the past year, at least partly due to being unable to maintain my old training/racing routine, but also there's been a pandemic and I'm about to turn 40 so... My ENT is kind of a traditionalist and not crazy about me playing with my settings. He had no idea OSCAR/SleepyHead existed. 

I'm also thinking about getting a pulse oximeter just to collect more data. 

If you've gotten this far, thank you for reading my wall of text. Happy to send any data from OSCAR you're willing to look at. Although I started cpap back in 2014, my sdcards only have info dating back to the beginning of 2019. Dunno, if my doc deleted it. Anyway...

Thanks again!
~David
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#2
RE: In search of general CPAP coaching
dfunk, for starters, read the links in my signature for Organizing Your Oscar Carts and Attaching Files. We would want to look at the Daily Detail charts with the settings and statistics in the left column. We may need to zoom into your flow rate to see areas of concern or see the Advanced View charts to answer your questions, but we'll start with the basics. It sounds like you have found all the major features of the Aircurve 10 machine and have used them to your advantage to minimize AHI. We have found, that at a certain point reducing AHI has somewhat diminishing returns, and comfort needs to be the priority. Anyway, let's get a look at a chart or two and see where that takes us.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: In search of general CPAP coaching
Sleeprider, thanks for your response! Here's basic charts from my last 3 nights, which includes one actual night of minimal leak. For some reason, either OSCAR isn't reading information about flow limit or my machine isn't recording it. There's a graph for Flow Limit in the overview tab but it's blank. 

I know there's a possibility that what I'm experiencing is anecdotal and my sleep isn't going to get much better. But I figured I'd try. Anyway, see below

   

   

   
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#4
RE: In search of general CPAP coaching
And here's 3 more days of data. Hope this helps get a better reading on what I'm dealing with!

   
   
   
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#5
RE: In search of general CPAP coaching
I don’t see any real need for the pressure as high as it is but as the machine is a fixed pressure machine I guess you need to set it for worst possible case. I think you would do well with a VAuot machine
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#6
RE: In search of general CPAP coaching
I mean, those are the pressures my doc sent me home with after my sleep lab study. I've played briefly with lowering my pressure a little bit but I didn't feel any better. If anything, I felt a little worse. I spoke to the CEO at Bleep and he said that folks often lower their pressure considerably after switching to the dreamport but I've been reticent to do so. I backed it down to 15/11 for a few days back in July when I first got the Bleep mask and didn't feel good. My AHI shot up. Though part of that might've been leak problems. About a week ago I tried at 17/13 just for laughs and had mixed results, though overall, subjectively didn't feel well. Any thoughts on where else I might adjust my pressure?

Suggestions for how to get a different machine without breaking the bank? I got a new machine early last year and I'm still in the middle of paying it off through insurance.
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#7
RE: In search of general CPAP coaching
You had leak problems on the full face mask, meaning you weren't getting all the therapy air you could, right, and your leaks were a lot higher back then? If that's the case, then I could see your pressure coming down and being fine if all the leak is gone. AHI looks good and could even be higher and probably still be fine. As somebody else kinda suggested, chasing AHI is like chasing a ghost. Your Oscar leak data looks pretty good except for those periods of the night where the leak spikes. The one thing I can say about the bleep (I wear it too) is it doesn't leak when it's on right, meaning it's your mouth seal is breaking through somehow. Mouth leaks jack up sleep. If you could track frequency of arousals, you could find out if you're waking up constantly from those leaks. Problem is HST devices with EEG are expensive and you couldn't read them anyway, if you bought one. Respironics made one called the PDX. Had an EEG yoke on it. Probably buy one used and cheap on ebay for a couple hundred, but then you'd need the software and the understanding of how to use it... Have you thought about Actigraphy apps? Here's an article on actigraphy: https://www.verywellhealth.com/what-is-a...hy-3015130
If you used Actigraphy to track body movement (assuming each movement really is you waking up, because it probably is) then you can overlap the data from the movements Actigraphy tracks onto the leak graph from Oscar (compare the times and see if they correlate). If they do, then your poor sleep's probably being caused by your leaks waking you up a bunch.
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#8
RE: In search of general CPAP coaching
Your charts show excellent therapy efficacy from bilevel pressure at 19/15. It is likely you would tolerate lower pressure, while maintaining pressure support, and I see you have experimented with 15/11 and 17/13. Before we get into this farther, would you please check your settings and confirm Easybreathe is on, or perhaps post a random zoomed shot of therapy at a resolution of 2-3 minutes where the respiratory flow wave and mask pressure wave is clearly visible?

There are many periods of quiet even respiration, but there are also places where respiration is punctuated by sharp spikes in flow. Those may be sleep disruptions, an we might want to look closely at the minute preceding those spikes and see if we can identify what is going on.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: In search of general CPAP coaching
Dreaming1
My leakage is hit or miss, though overall much worse with the full face, unless I strapped it way down ultra tight, which is a no go. I can share overview screenshots if you want. The leakage is definitely from my mouth (it took me a while to get the hang of applying the bleep nose ports but once I did, they stay sealed up good). Mouth leakage is a constant battle. My jaw is badly off center so I can't use a chin strap or the oral appliance. The appliance almost totally eliminated my large leaks but wrecked my jaw so I just can't use it. Right now I spray my lips with 3m Cavilon liquid bandage and then tape over that with 2-inch wide 3m durapore tape. Sometimes it holds. Sometimes it loosens up at the corner of my mouth, which correlates with bigger leaks. I've tried all of the purpose-designed mouth strips. They're not wide enough to hold the corners of my mouth where the leak happens, and their adhesive is too weak. My mouth just wants to fall open. I joke that I'm ready to try duct tape or gorilla tape. I'm not quite ready to go that drastic but if anybody has recommendations for stronger mouth tape/adhesive, I'm willing to go with something stronger than I'm currently using. I'm not afraid of some extra discomfort removing tough tape in the morning if it means I won't feel like a zombie all day. I've been wanting to try this stuff but they've been out of stock for months: https://sleepqplus.com/collections/all

Yeah, I know my AHI is pretty solid. But I'm here because it's no longer corelating with how I feel when I wake up. It's clearly not the only indicator of "good sleep."

I think a home EEG is out of the question. Like you said, even if I could get my hands on one at an ok price, I wouldn't know what to do with the data. I'm not familiar with the term "actigraphy." But I have a smart watch and I use this app: https://play.google.com/store/apps/detai...p.full.key Is that what you're talking about? It does seem to indicate a correlation between moving around, heart rate spikes, a drop (or a wider variation) in inspiration time, and leak spikes. I'm also thinking of getting a pulse oximeter I can wear in my sleep. Do you think that would provide additional helpful data?

Waking up from leaks might be exacerbated by the sound and blowing affecting my sleep partner, who sometimes wakes up and pokes me until I roll over and settle back down.
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#10
RE: In search of general CPAP coaching
Sleeprider

I've always used Easybreathe. Examples from last night: 

3 minutes of normal, no leak sleep from last night. 
   
Before/during/after the largest leak. 
   
Snapshot of the whole night. 
   
Also, possibly of additional interest, I've been playing with decreasing my ti minimum. Oscar has been showing it as kind of a flat line when I set it higher and I was wondering if allowing myself to take shallower breaths when my body wants to might help me feel better.
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