jewelsav

Time for an Update...

CPAP THERAPY

As you suggested @Sierra, I made a change on Mar 17 from Min/Max 8.8/10.6, EPR: Ramp to Fixed Pressure 10.4, EPR 1. After 1 week, AHI, OA, H and R are all down significantly. Yippee!! But CAs are up slightly. So, for the next week, I will try lowering the fixed pressure to 10.2, while maintaining EPR=1. See https://docs.google.com/spreadsheets/d/122kA5EJiwUXKilxmQYR6FRRvGxNRau7Tufwssk3-Etw/edit#gid=0 for details.

AHI down from 5.16 to 2.50

OA down from .48 to .37

H down from 2.14 to .77

R down from 1.91 to .53

CA up from .63 to .87

SLEEP QUALITY

Fortunately, my jumping out of bed like a ninja, and screaming like i'm in a horror movie have ceased. My parasomnia diminished to speaking in a conversational tone, my not waking up, and having no recollection of dreams (my husband reported the events). Then, at least for a week, all these events have disappearing altogether. We purchased a Wyze outdoor camera for ~ $35, mounted it with a wide angle view, so for the next few weeks I can see if I have sudden movements or outcries. I expect these behaviors/vocalizations may appear from time to time, but this is a vast improvement over events happening 2-3x/week. I had a preliminary diagnosis of RBD, but it (hopefully) will turn out to be pseudo-RBD with parasomnias brought on by sleep apnea and long term sleep deprivation.

I still wake up 2-3x/night, and get only 5-6 hours of sleep/night. I am waking up a tiny bit more refreshed. From reading others' experiences on this forum, I figure it may take weeks to months to feel less tired. Any suggestions are welcome.

DEALING WITH $#@&

My (excellent) sleep doctor referred me to a movement disorder neurologist within the same health organization (Stanford) to run some tests to determine if I have RBD. It took 3 weeks for the Stanford neurology department to decline the referral and tell me to contact them again in December 2022, at which time they "may or may not" schedule an appointment for me sometime in 2023. I emailed my sleep doctor and asked for a referral to UCSF (US News & World Reports rates the UCSF Neurology department #1 in the US). My dr's admin assistant (without even showing him my request) emailed me back that Stanford has a policy of not referring patients outside their system. Fortunately I had a zoom call with my dr yesterday. He was dismayed that there's such a policy (if there even is one, since he's never heard of it), and said simply "Why would I do that?"

Between the time I heard back from the ding-a-ling assistant until I saw the dr, I asked my primary care physician to make the referral, which she did within 24 hrs. As it turns out, my sleep dr and the UCSF neurologist are good friends and did their sleep fellowship together. My dr highly recommends the neurologist. He offered to pick up the phone and call her then and there to make the referral, if I wished. He lamented, "We both work for organizations with a lot of bureaucracy."

So while I feel I am in good hands both with the sleep dr (who gave me his direct email for future communication) and the neurologist, roadblocks and obstacles continue to suck the energy out of me on my journey to get a good night's sleep.

Another energy-drain is the DME. I have asked for six weeks for nasal cushion replacements for my Airfit N30i mask, which should be replaced every 2 weeks. I finally raised my voice, and was told they weren't in stock, the DME would have to order them (wouldn't give me a time estimate), and then they would have to go through the usual shipping channels (+1-2 weeks). Then I raised my voice even louder, screamed a bit, and lo and behold, the nasal cushion replacements arrived 3 days later. With the old cushion, I was experiencing a sore throat and headaches. I used a new cushion last night - woke up just fine.

Thanks for allowing me this one-time rant. I realize everyone on this forum has stories like these and worse. Why does it have to be this way? Sigh. I'm just so awfully tired of these nuisance roadblocks. This has already been a 3-yr journey to get to this point - I won't bore you with the details. But now I have the finish line in sight, thanks in part to the help you have generously and compassionately given me. I am truly grateful.

Thank you @Sierra. Brilliant insights! I really appreciate your feedback.

I've gotten so much from the MyApnea community, so I wanted to share some knowledge, even if it's just a tiny morsel.

Even when holding many variables steady, we are not robots, and AHI can vary for no apparent reason on some nights. It's important to tease out which AHI variations are due to a change in settings and which variations are due to random "noise". When I looked at AHI for individual nights, there was no way to make the distinction. Looking at a 7-day average, trends were more obvious.

I definitely saw that OAs were <1.0 when max pressure was 10.4 or more. But I didn't know how to make that actionable. Thanks to Sierra's experience, he recommended setting a 10.4 fixed max, then sequentially trying different EPR settings and seeing which worked best. Can't wait to try it.

Here’s an update…

I have officially used my Resmed Airsense 11 for 21 consecutive nights for >4 hrs and have a doctor’s appointment next week to confirm my compliance, so my insurance company will pay for the AS11 and consumables.

I have gradually increased min and max pressures over 3 weeks (see spreadsheet). The results (7-day averages):

AHI 4.40

Obstructive .94

Central 1.43

Hypopnea 1.87

My sleep dr seemed amazed that I achieved this AHI, given my January 2022 sleep study AHI of 79. He was surprised the CAs were low, given almost 100% of my sleep study apneas were CAs.

When I increased the max pressure from 10.4 to 10.6, OA, CA and H all decreased. I’m probably close to that tradeoff point you mentioned Sierra. If I increase max pressure, OA may go down and CA and H may go up. Will continue to make small pressure changes and hold them for awhile before making additional changes.

The AHI numbers may be moving in the right direction, but I still wake up 2-5x/night, with the longest stretch lasting only 2-3 hrs. I never feel completely rested, but am feeling a bit better than I did a month ago.

It’s taking a lot of patience to change only 1 variable at a time and giving it sufficient time to work. I will continue dialing in max pressure and other settings for CPAP, and will be trying a few more things to improve sleep quality. I tried melatonin, but it didn’t work for me.

Does my experience match MyApnea members’ experiences? How long did you use CPAP before you started feeling well rested? I realize everyone is unique, but it helps to have a realistic expectation.

Thank you for your encouragement!

Just to confirm...you mention "The advantage of having the machine in auto is that on each night you can see what the impact is of different pressures." When you say 'auto' are you referring to the Mode Setting, which is on AutoSet, with the current Pressure Range: 8.0-10.2?

And, when I set the A11 to AutoRamp, are these the best EPR settings:

EPR: ON; EPR Type: Ramp Only; EPR Level: 3

Thanks a million!

@Sierra, I took your suggestions about chart layout. Happy to make more changes if it makes interpretation easier.

PRESSURE SETTINGS

I’m still experimenting with increasing max very slowly until there are no apneas @max pressure. I’d also like to increase min pressure to create the minimum range before I go to a fixed pressure (9.0, as you suggest) so I can compare fixed 9.0 to an optimal tight min/max range.

LIFE WITH AIRSENSE 11

I’m experiencing no discomfort from CPAP with the AS11 and even slept for 5.5 hrs without interruption last night until 3.30 AM, then couldn’t get back to sleep as usual. That’s a record for me. I’m feeling less tired during the day as a result.

With AS11, ‘Minutes in Apnea’ has decreased from 10 to 5 min, but Large Leaks has gone up from ~1.5% to ~ 2.5%, with 2 nights as high as 10%. I’m using the same mask – Resmed Airfit N30i, which is very comfortable, and I don’t feel any leaks while awake. Is 2.5% significant? Not sure how to fix the problem.

OSCAR CHART QUESTIONS

1. What is the relationship among Flow Limit, Minute Vent, Flow Rate and apneas? I’m trying to observe which occurs in what order. How do these metrics explain what is happening when CA and H events occur? Do you see any patterns of when OAs, CAs and H’s are occurring and how to reduce them? Or do we need more data?

2. Is there a way to remove sleep/wake junk (SWJ) data from Oscar charts at times you know you were awake? If I can’t remove the SWJ data, is there some way to denote on the charts the times I am awake?

A new day is dawning when I feel like a human again. Thank you so much!

OK! I will implement your suggestions and post when there's something to say or a question to ask. I am grateful, as always.

@Sierra, As you suggested, I increased AutoSet Min Pressure to 7.0, and EPR=Ramp Only. It was quite comfortable while falling asleep. See results below.

Unfortunately, my cat made a clatter in the closet at around 2.30 AM which woke me. My nose had gotten stuffed up, so I couldn’t breathe through the mask. I discontinued CPAP at that point. Yet another ‘this never happened before’ event: stuffed up nose. As each ‘never happened before’ event occurs, I check it off my list and feel thankful that I’m one step closer to finding the right CPAP settings for me.

Results: AHI was 6.51. An AHI comprised of CA = 2.17 and OA = .99 would be a very good night for me. However, the AHI of 6.51 also contains H=3.16 + RERA=1.18. Is there a way to tell if the Hs and Rs are due to obstructive or central apnea? I see some Hs on the inhale, some on the exhale. Or are Hs and RERAs not very important?

After ramping up, pressure went to the max, 10.0, and stayed there.

Based on 22 nights, Oscar data show at max<10.0, CAs averaged 1.5. When max>10, the CA average doubled to 3.0. Conversely, at max<10.0, OAs averaged 4.0. When max>10, the OA average dropped in half to 2.2. There are only 3 days’ data at max=10.0, not enough to draw a conclusion at this point, just to suggest a possible trend. Will keep watching.

What settings do you suggest over the coming nights to continue to home in on the lowest possible CAs and OAs? Do you suggest maintaining the same settings for a few nights before making a change?

I’m encouraged by the progress we are making. I’m feeling a little better rested today than usual.

@Sierra, I received all your messages last night. If it wasn’t for your encouragement, I would not have tried using the AS11. But I did use it, and it went well. Barring any unforeseen occurrence, I will be using it from now on. S9 is still available as my backup.

SETTINGS CHANGES

I tried changing from EPR Full Level 3 to EPR Ramp Only, and lowered the max to 9.0 from 10.0 (min/max 6.0-9.0). The result of the EPR change when I was trying to fall asleep I couldn’t catch my breath, it was hard to exhale and I was starting to get a headache. So I re-engaged the EPR to Full Time Level 2 (had been Level 3), and increased the min/max back to 6.0-10.0. Then I was able to fall asleep.

I realize the goal is to set EPR to Ramp Only in order to lower the max (where apneas are occurring), but wondering how to do that without the discomfort, and without losing sleep at the beginning of the night. Is the min of 6.0 too low?

AWAKENINGS

I woke up briefly 3 times @ 1.40, 2.50 and ~4 AM (my usual is 2-7x), but was able to go back to sleep quickly. The peak of the night for apneas was 2.40 AM. Is that what woke me at 2.50? After 5.5 hrs of sleep (avg: 6.5 hr), I woke up a bit tired. Hopefully I’ll wake up refreshed one morning.

CPAP STATS

Last night’s stats show OAs are down, CAs are up: (12-day avg in parentheses): OA=1.04 (2.78), CA=2.22 (1.43), H=0.44 (0.70), RERA=0.59 (no avg available).

AHI = 4.0 (avg=4.14 when awake apneas removed); machine-reported avg: 7.90. I’m not yet concluding that AS11 can tell the difference between asleep/awake, since I didn’t have long stretches of being awake last night. But it would be nice if AS11 could do that.

I know most people don’t look at the ‘Time at Pressure’ chart, but I’ve found it useful. I spent 79 minutes at max pressure 10.0. Events occurred at these max pressures:

Max 9.0 OA: 1, CA: 0

Max 9.2 OA: 0, CA: 3

Max 9.4 OA: 0, CA: 1

Max 9.6 OA: 4, CA: 4

Max 9.8 OA: 1, CA: 0

Max 10.0 OA: 1, CA: 5

As you’ve mentioned, the trick is to strike a balance when raising max pressure between reducing OAs and increasing CAs. Would you suggest continuing to slowly increase the max in order to reduce OAs at the cost of increasing CAs? Would that pattern make the case for getting an ASV rather than an APAP?

What settings would you suggest going forward?

THANK YOU!!

@Sierra, Thank you very very much for taking the time to help me sort out my apneas and CPAP treatment.

OCCURRENCE OF CA's I don't think CAs have gone up with increased max pressure. In fact they appear to have gone down over time, with 2 notable exceptions (noted in yellow). Please let me know if I've interpreted the data wrong. Here is a google sheet from Feb 1 - Feb 20 with max pressure, CA, AHI (reported by CPAP machine) and AHI (manually corrected to subtract apneas when I was awake). https://docs.google.com/spreadsheets/d/122kA5EJiwUXKilxmQYR6FRRvGxNRau7Tufwssk3-Etw/edit?usp=sharing

Trying to add more information and respond to your suggestions...

BACKGROUND MEDICAL CONDITIONS Your exploration of what is causing the apneas are very welcome. I don't take any drugs other than levothyroxine for hypothyroidism. I live at sea level (San Francisco Bay Area). My blood pressure is 116/69, resting heart rate ~63. In December, I had my first and only episode of heart arrhythmia (not atrial fibrillation, something else) which was severe enough to send me to the emergency room. Doctors said the arrhythmia episode was due to sleep apnea. (Hence my heightened urgency to figure this out!) A follow up echocardiogram and a 14-day Zio patch (24/7 heart monitor) revealed no problem with my heart. The sleep study tested negative for Cheyne-Stokes. That distinctive pattern in my Oscar charts may be when I was awake, trying to get back to sleep. Some nights I can't get back to sleep for 1-3 hr. During the awake time, the CPAP machine is still counting irregular breathing (normal for being awake) as apneas. I manually subtract these out to get a more accurate AHI.

What is the difference between the AS11 AutoRamp and the S9 AutoRamp? I like that feature on the S9 too.

I'm not sure what time zone you are in. If it's not too late in the evening...what settings would you recommend if I try the AS11 tonight? If too late to respond, I'll await your suggestion tomorrow and try the AS11 tomorrow night. My hesitation is that last time I tried the AS11 and set min/max pressure, it only delivered max pressure, and I woke up with a headache.

Sending a great big thank you.

When I insert the SD card, the message reads "Reading the SD card, please wait". The message disappears after 10 seconds, and on past nights, the SD card was filled with data by the morning. Last night, I got the same message, so I assumed all was well. AHI = 7.4 last night vs. an average for 11 previous nights of AHI=8.23 (range 3.43 - 16.03). I will post again when I have data with the new settings. Thanks for your help.