How do things look after recent pressure changes?

My 19 year old son has been on APAP for a few years. The Pulmonolgist/ Sleep Doc he has seen for the past few years is retiring and his new doc looking at things with fresh eyes decided to make some changes. My son has a follow up coming up with the new doc in a few weeks, I was wondering if if anything stands out in his recent sleepyhead data? The first chart is prior to changes when his APAP was set at fixed 8, next 2 charts are when settings were changed to 6-10. The reason the doc set the max pressure at 10 is because my son had issues with severe aerophagia when the previous doc had his machine set at fixed 9 (aerophagia has not been a problem so far with the new settings).

The equipment listed in my profile is mine; my son uses a Dreamstation APAP, a Dreamwear nasal mask, and supplemental O2. He has a number of health issues; hypermobile Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia, Asthma, OSA, nightmare disorder, circadian rhythm disorder, and REM behavior disorder.
Current meds are: Fludrocorisone, salt pills, vitamin D, Advair, Levalbuterol, and Flonase.
My son's main sleep complaints are horrible nightmares and restless sleep, the new doc is hoping that getting his OSA under better control will help with these issues which he believes are caused by the REM sleep problems.
The recent change in settings have helped, but there is definitely still room for improvement.

Does anything stand out in his Sleepyhead charts that I should bring to the docs attention?

Does your son complain of not sleeping well? Have trouble falling asleep or staying asleep? Wake often during the night?
The Fludrocorisone is known to cause insomnia.
If he is remembering a lot of dreams now...he's not sleeping so great.

Pugsy wrote: ↑

Fri Jun 19, 2020 8:47 pm

Does your son complain of not sleeping well? Have trouble falling asleep or staying asleep? Wake often during the night?
The Fludrocorisone is known to cause insomnia.

He doesn’t have trouble falling asleep. He does complain of not sleeping well. He isn’t aware of waking up during the night, but he’s had 4 sleep studies (2 with cpap) and they’ve all showed that he has lots of awakenings. He also is a very restless sleeper, he physically acts out his dreams, sleep talks, sleep walks, and often falls out of bed. He thinks the restless sleep has improved a bit with the new APAP settings, but it isn’t resolved.
Looking into the Fludrocortisone is a good suggestion, between that and his inhalers he’s taking a lot of steroids. He takes .3 mg of Fludrocortisone to treat POTS, might be worth talking to the doc about trying to cut the dosage back a bit to see if it helps his sleep.
Thanks!

His AHI is higher than I would want to see and the machine doesn't seem to want to do much about it which leads me to wonder just how much of that AHI are false positives from arousals. That's why I asked if he was sleeping well or not. I would want to rule out those flagged events being arousal related before I assumed OSA related and went off trying to kill them with more pressure since we know that more pressure causes aerophagia issues. If he didn't have the aerophagia history probably I might just try more minimum pressure but I am always hesitant to suggest more pressure when someone has potential problems with aerophagia unless we know for sure more pressure is critically needed.

How much time have you spent learning about arousal flagged events and asleep events?
http://freecpapadvice.com/sleepyhead-free-software
The videos are talking mainly about central/Clear Airway flagged events but we can have false positive OAs and hyponeas as well. It's not limited to centrals.

I like to try to know as best I can if the problem I am trying to fix with more pressure is actually fixable with more pressure.
If he has crappy sleep from medication side effects then it isn't going to help no matter how much we increase that pressure.

If it were my son or other family member...and I knew that the usual "more pressure" might cause stomach issues I would back up and start looking at that flow rate up close and try to figure out just how much of that AHI is real asleep events first.
Then I would also investigate medication side effects as a potential contributing factor. Steroids mess with sleep bad...been there and done that myself and I wasn't even on them long term.

Pugsy wrote: ↑

Sat Jun 20, 2020 8:15 am

His AHI is higher than I would want to see and the machine doesn't seem to want to do much about it which leads me to wonder just how much of that AHI are false positives from arousals. That's why I asked if he was sleeping well or not. I would want to rule out those flagged events being arousal related before I assumed OSA related and went off trying to kill them with more pressure since we know that more pressure causes aerophagia issues. If he didn't have the aerophagia history probably I might just try more minimum pressure but I am always hesitant to suggest more pressure when someone has potential problems with aerophagia unless we know for sure more pressure is critically needed.

How much time have you spent learning about arousal flagged events and asleep events?
http://freecpapadvice.com/sleepyhead-free-software
The videos are talking mainly about central/Clear Airway flagged events but we can have false positive OAs and hyponeas as well. It's not limited to centrals.

I like to try to know as best I can if the problem I am trying to fix with more pressure is actually fixable with more pressure.
If he has crappy sleep from medication side effects then it isn't going to help no matter how much we increase that pressure.

If it were my son or other family member...and I knew that the usual "more pressure" might cause stomach issues I would back up and start looking at that flow rate up close and try to figure out just how much of that AHI is real asleep events first.
Then I would also investigate medication side effects as a potential contributing factor. Steroids mess with sleep bad...been there and done that myself and I wasn't even on them long term.

Thanks for the great advice Pugsy! Seeing if his docs can find a way to cut back on the steroid meds sounds like a great staring point. If that isn't feasible perhaps raising the minimum pressure very slowly might also be worth trying, it does seem his Dreamstation isn't raising the pressure very often.
The video is a huge help in learning how to better understand his data, I'll have to do some more reading to get to where I can interpret it well. I think you are right that his AHI is probably a bit inflated because some of the events are caused by awakenings.
Here are a few zoomed in snips. I'm thinking that these might be from awakenings

and this is a real OA.

Does that seem like a correct interpretation?

More pressure will only help reduce the OAs and hyponeas if they are real asleep events.

Or if a real asleep event causes an arousal and then we have some arousal flagging if we prevent that first event and thus prevent the arousal...then the subsequent false positives should also be prevented. Like if you see a real event followed by a cluster of events that look more arousal related then it is possible that the real event caused the arousal and the false positives.

If you go through an AHI of 5...and 75% of it is false positives then I don't know that I would be trying more pressure especially since more pressure might cause stomach problems. If I did want to try more pressure I would go up in 0.5 cm increments and give at least a week with each change so the body could adjust and you can get a sense of the overall pattern happening. His AHI with fixed of 8 cm was awful...so if those were real asleep events that means a minimum of at least 8 cm...I am betting that the bulk was SWJ false positives though.

Also, it's possible there are a good number of real events and more pressure is needed to reduce them but the pressure needed is going to cause belly issues. So we have a choice...poor sleep because of apneas or poor sleep and feel like crap the next day from belly pain.
Neither a good choice of course. Swapping one problem for another is never a good choice. Sometimes we make compromises and pick the lesser of two evils.

Your examples....
The bottom OA is probably a real asleep OA but it's kind of hard to evaluate because you have zoomed in too close and we can't really see much of the breathing or flow rate pattern that happened right before the flag.

I copied this mini tutorial from a post I did a day or so ago. Note the scale and while I zoomed in...not as much as yours is zoomed in on.

These 2 flagged events below...probably asleep real events. Looks like sleep before and after the flags.


This one below...all SWJ false positives.


This one below the asleep time is circled in red...then arousal breathing comes after and everything flagged after is false positives.

And a more zoomed out view of the red circled asleep breathing and what happened after the arousal...everything else is arousal breathing.

Quick question.....have you ever let him use your AutoSet?
If not...might be something to consider trying. The response in auto mode is of course more responsive and EPR at 3 might really help with the aerophagia issues.
Right now he's getting the max 2 cm drop during exhale with Flex (that's the most anyone can get even at a setting of 3)
That extra cm drop might really help the belly issues...it's like using a bilevel machine set to 3 PS which can be quite remarkable compared to 2 cm drop for some people.

Pugsy wrote: ↑

Sat Jun 20, 2020 8:48 pm

Quick question.....have you ever let him use your AutoSet?
If not...might be something to consider trying. The response in auto mode is of course more responsive and EPR at 3 might really help with the aerophagia issues.
Right now he's getting the max 2 cm drop during exhale with Flex (that's the most anyone can get even at a setting of 3)
That extra cm drop might really help the belly issues...it's like using a bilevel machine set to 3 PS which can be quite remarkable compared to 2 cm drop for some people.

He tried my machine one night when I first got it, I think it would be a great idea to have him use it for at least a couple of weeks to see if it works better for him. I have a follow up appointment for compliance after a year of usage coming up in a bit over a month, once I get that out of the way I'll have him give my machine a try.

I went thru all the events on the nights I posted, if my interpretation is correct I came up with 50% false rate on the night he was at fixed 8 and a little over a 60% false rate on the nights at 6-10. Throwing out those events certainly make his numbers better.
It still might be worthwhile to have him give my machine a try. During one of his sleep studies he had an amazing sleep tech who was a traveling tech from out of town. She was very passionate about her job and was took a real interest in my son's case. She told us that our local lab doesn't score it but she saw significant upper airway resistance which she believed was the cause of some of the awakenings. Because of the aerophagia the doc told them to not take the pressure over 9, that limitation didn't allow for his OSA to be fully treated so they had to add some O2 to get his sats up. As you said it's a trade off, his aerophagia was pretty bad and he was dropping weight so lower pressure with O2 was the better of 2 imperfect options.
Hopefully they can figure a way to lesson the steroid meds, but that's tricky because the alternative for treating POTS is using Beta blockers which his pulmonologist isn't in favor of doing.

It will be really helpful at his next appointment to go in with a better understanding of his data, hopefully his new doc looking at thing with fresh eyes can figure a way to tweak his meds, and if not maybe we can try slowly raising the minimum with the extra EPR my machine has. Thanks again for all your help and suggestions Pugsy!

Sounds like you have a good handle on your options.
I would definitely plan for an extended trial with your AutoSet to see how he does with it. The extra EPR availability plus the quicker response might make a difference....it's at least worth trying.

I have used a Respironics machine...that's what I started with and used for several years until I ended up getting a ResMed machine.
That different algorithm made a huge difference in my pressure needs. On the Respironics APAP I needed a minimum of 10 cm (AFlex at 2) to do a good job. With the ResMed APAP I can use 7 cm minimum (and add in 3 EPR) to get the same job done.
If I had been unlucky enough to have aerophagia issues...that difference could have been a deal maker or breaker for me in terms of comfort and therapy effectiveness.

The mention of UARS doesn't surprise me...he sounds classic for it and would explain why he still doesn't sleep well or feel well despite acceptable "numbers" since we both know that the numbers we get from these machines can't really tell us about UARS treatment effectiveness.
I think I read somewhere that a highly thought of sleep doctor wrote that he feels that most people with OSA also have some degree of UARS being present. Seems logical to me....historically UARS pressures needed seem to be higher than OSA pressure needs to really deal with the UARS but the machines only really address the typical OSA side of things and won't go higher all by themselves because it's not in the algorithm. It will deal with the OSA well enough but sometimes if a person happens to have both and they need more for the UARS thing it simply leaves the UARS being sub optimally addressed. I think this explains why people say they feel better when using a higher minimum than the machine might technically show it wants to give them to get good "numbers". I suspect they have a strong underlying UARS component going on along with OSA. Just a personal theory that seems logical to me.
Unfortunately not a lot of research yet in the UARS treatment area. Heck, it hasn't been that long ago that doctors wouldn't even acknowledge the impact UARS might be having on people and some docs still don't or won't.

Do let me know how things go once you get him on the AutoSet for a couple of weeks.