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Getting started. How'm I looking?
#1
Grin 
Getting started. How'm I looking?
Hello. I’m just getting started on all this. Figured I should follow the universal advice and register here and share my charts (after, of course, making a small donation  ;) )

Tl;dr: Bad daytime sleepiness. Diagnosed with UARS. Been on APAP for about a month. Not really noticing any difference, but being patient. Sharing charts to make sure I’m doing things right.

39 year old male, 6’ 1” 195 lbs. Snorer. I’ve had increasing daytime sleepiness for 10+ years, to the point of nodding off at stop-lights recently. Had two at-home sleep studies over the years: AHI was 6.0 in 2011 and then 1.2 in 2021. Primary doc assumed nothing there due to low AHI. Finally referred to an actual sleep specialist last year. He suspected narcolepsy, so did an in-clinic polysomnography & MSLT. Results of that were:

ECG: NSR with intermittent atrial fibrillation 
Min oxygen: 91%
AHI: 0.3
RDI: 18.4 
RERAs: 140
“Moderate/loud snoring was appreciated.”

Since this isn’t a narcolepsy board I won’t go into that part unless requested. Long story short, out of 5 naps I had 2 “severe” latency results and 3 “normal” results but didn’t go into REM at all. So I was told there’s no narcolepsy. But even the sleep doc said those results were unusual so I'm not sure what to make of that. But considering the main treatment for that is stimulants, I'm not real interested in pushing against the grain to dig further into that at this point.

The sleep doc said given the low AHI and high RDI he diagnosed me with UARS. Said there’s a good chance that was causing the sleepiness and APAP could help. I’d never heard of UARS. Looking into it I understand there’s some controversy surrounding it, but I’m just happy to have something to go by. Makes sense to me that I haven't gotten great sleep in years due to not breathing well at night.

Using ResMed AirSense 10. The AirFit P10 pillows were the first thing I tried and I took to them right away. I’ve worn it all night, every night since I got it. Plus usually an hour or so nap in the day too. (Due to the excessive sleepiness, my amount of sleep has never been a problem. I tend to sleep 10 hours per day including naps, and could easily do more if life allowed.)

I’m approx 35 days in. Honestly I don’t feel any difference. Maybe a tiny bit more awake here and there, say 5% of the time - i.e. little enough that it could easily be placebo and is a drop in the bucket compared to how tired I am. But I’m committed to using it for the rest of my life because I know I’m sleeping better. I record myself, and I’ve gone from snoring all night to not snoring at all. That alone is worth it. Also oxygen levels are up a bit, and resting heart rate and BP are down a bit with no other lifestyle changes. So I know it’s helping. But starting to get a little discouraged that I’m not having more energy, especially after reading stories about it changing people’s lives overnight. But I know there are also a lot of stories of people saying it took 3-6 months to notice a difference and that it was very gradual. So I’m being patient. I just wanted to share my charts and get some feedback to make sure I’m getting the most out of my PAP therapy. Attached are the last OSCAR screens for the last 3 nights. Let me know if I’m posting the right things! Any feedback is appreciated, and I look forward to learning enough to be able to eventually contribute myself. I'm a pretty data/tech savvy person but at this point these charts are gibberish to me. Thanks!


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#2
RE: Getting started. How'm I looking?
Hi caferacer,
Your charts show quite a bit of snores even though you say you're no longer snoring.

Visually line up the snore graph with the pressure graph and you can spot how the snores may be causing the pressure to rise.  

I'd like to see your pressure graph a little more steady, as this can be disruptive to sleep, even if you're not aware.  Even though you enjoy a low AHI, snores, Hypopnea, flow limitation and Reras can cause mini arousals and usually you wouldn't be aware of that, except come daytime when you feel like you haven't slept at all.

Snoring most of the night suggests your minimum pressure may be too low.  First, turn the ramp to Off.  It's not normally needed with a low pressure.  Change the minimum pressure to 7cm.  This will be more in line where your median pressure falls.  Keep the
EPR at 3.  

Here's a Wiki article on UARS:

http://www.apneaboard.com/wiki/index.php...ome_(UARS)

Also, read through OSCAR - The Guide

There's some information on UARS.
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



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: Getting started. How'm I looking?
Wow, thanks so much OpalRose! I'm continually impressed at the knowledge this community has amassed. 

Regarding snoring: your comments made me stop and question my assumptions. I've been using the SnoreLab app to record myself. Before APAP in the recordings I was snoring loudly all night, and my "snore score" was typically 70-100. Since the first night with the machine I can't hear any snoring on the recordings and the scores are down to 5 or less. And even then, the parts the app marks as "light snoring" are just ambient noises -  blankets rustling, a car going down the street outside, etc. That made me think the snoring had just stopped. My partner also said as far as they can tell I'm not snoring since using the machine (and their sleep has improved considerably!). I noticed the snore data in OSCAR, but didn't have a reference for the scale of the numbers and assumed those were very mild readings. Also I believe I saw something in one of those LankyLefty videos where he implied that the OSCAR snore data isn't very useful (or accurate or something?), so I didn't think much of it. But now that you point it out I realize I was working on assumptions. I can imagine maybe I am still snoring to some degree that is interfering with sleep, but that perhaps the machine is simply reducing the noise and/or severity and it's still something I should keep an eye on.


Last night I turned off the ramp and set the min pressure to 7. It looks like my AHI was a little higher, but not up to the highest it's been with the previous settings (which was 2.56). I'm still not sure what the snore numbers mean, but the main number that seems to change (the "99.5%" stat) was a bit lower than it usually was with the previous settings. That was 0.44 last night, where it's often 0.5 to 0.9 with the old settings (although it's been as low as 0.22). Of course this is only one night's sample size, and I don't really know if that difference is noteworthy. I'd be happy to hear what you think. I will say that I think I didn't have great sleep last night for reasons unrelated to the settings change. I woke up at one point and couldn't fall back asleep right away due to some anxiety about unrelated life stuff. But I've felt pretty good today.

Thanks! I'd be happy to hear any feedback, and I'll follow up after a few more nights with the new settings.


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#4
RE: Getting started. How'm I looking?
Oh also: OpalRose I notice that you're using pretty much the same setup I am, including the ClimateLine hose. I bought that because cold air tends to make me stuffy and we had some cold nights when I first started treatment. I put it on the warmest setting (86 degrees I think) but honestly cannot tell any difference between that and the standard hose. Should the air I'm breathing be noticeably warmer? Is it common/possible for the ClimateLine to not heat up, maybe if it's not connected perfectly or something? I'm thinking of switching back to the regular hose, because the only difference I notice is that the heavier hose is a little more inconvenient.  
Thinking-about
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#5
RE: Getting started. How'm I looking?
I think you're heading in a good direction. Even though the AHI is up a little, some of the others are down... Obstructives, Hypopnea, RERA, FL (95%).

The Clear Airway events are up a bit, but they're not that many and will probably lessen in time.

Snores: I think I missed that you used a snore app. I'm not really 100% sure, but the machine could be picking up other noises. Oscar can only report what the machine reports. If your partner's sleep has improved, and they don't notice snoring, then that's a plus! Smile

You have the right idea... hold with these settings for a few nights. As long as you're sleeping well, and you feel good the next day.

The climate line hose shouldn't get too warm, at least mine doesn't. If you think the air feels too warn, or don't feel any different, you can always adjust the temp.

The main thing is with a heated hose, you should not experience any rainout. Many of us also use a fleece type hose cover that helps. It's a personal preference, so if you like the regular hose better, then try that out.

Do you have a Clinicians manual? Order it here:

https://www.apneaboard.com/adjust-cpap-p...tup-manual
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



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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#6
RE: Getting started. How'm I looking?
Thanks again OpalRose. I'm happy to report that the last few nights with the new settings continue to show improved numbers, better even than that last chart I posted. The 5 nights I've spent with the new settings are actually the 5 lowest FL 95% readings I've had yet (and 4 of those are 0.0!). The AHI was already fairly low and hasn't been a big change, but its average is down too (0.94 vs. 1.15). And even though as I mentioned as far as I can tell I'm not snoring at all with the machine, the average snore values are about half what they were so that has to be an improvement.

More importantly I have felt a little less sleepy too. I'm sure some of that is the accumulation of now over a month on PAP therapy, but I imagine getting the numbers dialed in is helping as well. I can't tell you how appreciative I am that this community exists.

[Edited to add latest charts]


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#7
RE: Getting started. How'm I looking?
Seems like you're adapting well. Hoping this trend continues.
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



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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