Struggling for a year-Mom and her BiPAP

I take care of my mother who has severe OSA and CSA. We have been struggling with CPAP, then Bi-PAP for a year. We worked through many issues (lip getting stuck, constant noises, leaks). There were nights when she wore the F10 mask for 8-10 hrs but most nights were about 6 hrs with adjustment during the night.

At some point, I was not able to get rid of a "gap" that would form on her right side near her mouth (F10 FFM)- it would make a noise, wake her, sometimes set off leak alarm. She would take mask off sometimes. The headgear was 5 months old and because I had to make it tighter and tighter as time went on I considered that perhaps it was too worn to do its job.

Next, my mother would wear mask for 2 hrs then leak alarm would go off or noise would start (probably when pressure got high for deep sleep). Sometimes, I could tighten or reposition mask slightly and it would go away for a few hrs. Sometimes, she got fed up and refused to wear it. Many nights I set my alarm for 3 AM to try to put mask back on her. I would check the seal with a flashlight to look for the "gap".

A new DME sent a new tech. to house. She tried a Mirage FFM and a Quattro Air. They seemed better for about a week and then the issues would start- leak alarm, noises. The Amara View then seemed to be the answer. Again, we had a couple weeks of 8-10 hrs. of sleep. I noticed the AHI in Sleepmapper seemed to be higher than with F10 but wasn't sure if it was because she was just wearing it at beginning of night. It seemed to be lower if machine recorded only 6AM-10 AM use, for example. Then, noises started. The Amara View is incredibly quiet in general. The cushion material vs. the F10 seemed to hug her face better. I've changed cushions every month (sometimes sooner). The Velcro on the headgear is horrible. Sometimes I am not sure if she took the Velcro off or if the pressure popped it.
I ignore the single noises during the night but sometimes they are so loud it wakes us both up. Sometimes she is wide awake in the middle night and the IPAP is near its max; sometimes the EPAP, too. I turn off machine, release air from mask and restart it.
My mom cannot tell me exactly what is bothering her about the mask/machine because of aphasia from a stroke.

I just got access to Sleepyhead data. Her AHI climbs steadily during the 2 hr. intervals of sleep, up to 40 or 50. Her IPAP is often near the max or above it (due to pressure support).

Her dr. recently informed us that AHIs are way too high. In the 20s with Amara view many nights but once in a while they are in teens. F10 was more consistently in low teens but dr. thought all data I showed her on Sleepmapper was high. Plus, dr. realizes that I, my mother, and my mother's periodic aide can't continue to get up every couple hrs to deal with the mask.

Several days ago, she had another sleep study. We are waiting for dr. recommendations. At the lab, she slept with Amara View with NEW headgear adjusted differently than what we had at home. Tech said she had AHI less than 10 with pressure of 14. Her max is currently 18 and a nightly AHI can range from 10 to 30. We tried the same exact mask and headgear at home and had the same experience as we had with old headgear (2 hrs, high AHI, took mask off).
We switched back to the F10 and luckily the “gap” has not appeared yet.

Any advice? I don’t think the dr. is looking at daily data, just the monthly summary. Not sure when can I post an attachment, but would love input on her data from those who have gone through this.
Thank you.

How to post images of her reports from Sleepyhead so that we can see what you are seeing
https://sleep.tnet.com/reference/tips/imgur

For examples of what we like to see check out this thread. We only need the basics and not each and every graph.
viewtopic/t103468/Need-help-with-screen-shots.html

It's really hard to have any idea what is going on without seeing the event categories and the leaks and the pressures.

My first attempt at posting a screenshot from Imgur. I don't see an option to choose thumbnail.

This shows a typical night where my mom either wakes up and wants mask off, or we both wake up because we hear the high pressure or some mask noise after about 2 hrs. This is with Amara View FFM. Some nights this mask allows for a lower AHI (around 10) if you want to compare.
Amara View-





F10 mask-
Here is data from Oct. 11 with a different mask- F10 FFM. I thought she was able to wear this one for longer periods but this graph does not show it. Unfortunately, the data for the other 2 nights we used it since I downloaded this software did not save to the SD card.


Thank you for any help.

Her pressure settings aren't doing a good job.
The OAs mean the EPAP isn't doing a good enough job holding the airway open.
Not sure if having the PS limited to 12 something along with the EPAP lower is preventing adequate treatment of the centrals.

She's using the high end ASV BiPap and not just a regular BiPap which was what I thought initially she might be using.

I suspect she needs a higher minimum EPAP as a starting point.

Pugsy,
Thanks for looking at the data. How does a higher Minimum EPAP help? In the two datasets, I posted the 95% percentile EPAP was 11.8, and 11.1 and max of 12 was not reached. Her medians were 9 and 7. Also, from a monthly compliance report, 90% of time EPAP was 10.3. Are you saying the machine doesn't make it to a necessary higher EPAP because it is starting too far away from what she needs? Wouldn't the machine just peg itself at her max. 12 eventually if that was the case? Thanks for explaining!

I hope to get the drs. recommendations today. I think she is only going to look at the recent sleep study (in which my mom didn't have REM). Do you think drs. ever look at daily data without the patient suggesting it? I'm guessing they just look at the monthly compliance summary.

Thank you again.

When EPAP is too low it takes too long for the machine to respond and it can't get to where it needs to be quickly enough.
Think of EPAP as sort of a baseline pressure that is helping to hold the airway open all the time and then when the airway tries to collapse it can get to where it needs to be sooner and thus do a better job preventing further collapse.
These machines work better when preventing rather than trying to fix obstructive airway collapses.
Now dealing with the centrals is a different story and that's what IPAP is for. Having more EPAP will also help to have more IPAP which is what is needed to deal with the centrals you are seeing.

See if this helps you get a grasp on what is going on. It's complicated reading so it may take some concentration and time to understand
http://www.isetonline.org/yahoo_site_ad ... 190318.pdf

I have a 960 machine. I tried pretty much the settings your mom is using and my OAs and hyponeas looked pretty much like hers. I don't have centrals in numbers enough to be a problem.
It wasn't until I had my EPAP minimum up around 10 cm (and I think max EPAP up around 14) that my OAs and hyponeas reduced to acceptable numbers.

I am comfortable messing with my own settings but I don't normally suggest a person bypass a doctor's advice when there is a doctor working with someone who is on ASV. I think that you should maybe discuss all this with the doctor. ASV and centrals means a more complicated situation so I think it's best to have the medical team involved if at all possible.

I will definitely read the link when I can focus more. Thank you. Yes, I plan to get the drs. recommendation and will also ask about what you mentioned. I am afraid dr. is only looking at sleep study. I just left message asking if she can look at some daily data as well. Sleep study tech told me she slept well at 14 IPAP (not REM though which, of course, means she needs it higher for that) and that maybe current max 18 and higher with PS is too high. Granted it's not his expertise to look at charts. But, I wonder if dr. will think the same.

Pugsy wrote: See if this helps you get a grasp on what is going on. It's complicated reading so it may take some concentration and time to understand
http://www.isetonline.org/yahoo_site_ad ... 190318.pdf

Thanks Pugsy... good summary of ASV.

Great link, Pugsy. What are the 3 IPAP lines that show in the Sleepyhead pressure graph? Min IPAP, IPAP and Max IPAP. They don't move in the same direction as the EPAP line so I don't think they are EPAP + PSmin or max.
Thank you.

In addition to above question about the 3 IPAP lines in the Pressure Graph, I was reading some posts about events scored when awake. I know when asleep the goal is flow pattern that is repeated/consistent. I think it is a sleep pattern around 34:30 and 35 in this zoomed in view. Does it show my mom is awake at points?
Thank you.

The area that you have zoomed in on could be awake or semi awake breathing. It's much more irregular than what we would expect when we see asleep breathing.
To be honest though...I am not the greatest at evaluating potential sleep vs awake at this level.
You can look through other time frames and compare the more regular breathing and maybe get an idea.
The machine just records the air flow...doesn't matter if awake or asleep.

The whole EPAP min and max along with PS min and max makes for a very complicated pressure graph and it isn't easy to spot such minute changes with the data we have here. At least not for me.
We are also limited as to how often the machine takes a sampling and records it.

Trust me on this though....it's the minimum EPAP that needs to be adjusted upwards a little and by adjusting minimum EPAP(and max EPAP) upwards a little the OAs will be better prevented and adjusting the minimum EPAP .
A higher more consistent minimum EPAP in general is what is needed for those OAs.
How much more I don't know..it's a guess..something along the lines of where the median EPAP pressure is would be my guess.
A little more IPAP max is needed for the centrals.
Right now with the current settings the machine is limited as to what it can do.
It needs to be able to do more and it can't. It won't go where it doesn't think it needs to go for good reason and right now its little hands are partially tied.
I don't know why they limited IPAP max in the first place...that's needed for centrals and the machine won't use the max if it doesn't think it needs to.

Thanks, Pugsy. Still waiting on the dr.
An odd thing that wasn't clear in the Powerpoint-
As you know, her IPAP max. is set at 18. However, I have seen it go beyond 18. I've seen 21, 23 multiple times. It is louder and usually wakes me and, sometimes, my mom. At first, I thought I was just too tired to see clearly! The sleep therapist (from DME) asked his rep who said the machine should never go beyond the max. However, the sleep lab told me that it can go beyond the max and said something about the PS being additive. At that point, I didn't understand the EPAP + PS = IPAP so I didn't ask more questions.

Makes sense now sort of- because EPAP max.(12) + PSmax (12) = 24. In the PPT, I think they mention a machine max pressure of 25. So, it would make sense to see 21, 23- except that then the IPAP max seems to have no purpose. Thoughts?

ForMyMom wrote:Makes sense now sort of- because EPAP max.(12) + PSmax (12) = 24. In the PPT, I think they mention a machine max pressure of 25. So, it would make sense to see 21, 23- except that then the IPAP max seems to have no purpose. Thoughts?

SleepyHead may not be reading the settings part of things properly.
I would suggest that you go into the machine itself and verify settings.
You are right...if IPAP max is 18 it shouldn't be going into the 20s.
But the report you just posted...shows IPAP max at 18 in the statistics.
These machines will only go to IPAP max of 25 and usually things are left with IPAP max wide open and let the machine sort it out.
Do you know how to get into the clinical setup menu so you can see exactly what the settings are?
If not, this explains how to get there.
http://www.apneaboard.com/pr-system-one ... structions

SleepyHead sometimes has had a little trouble with reporting the actual settings (those numbers you see above the statistics columns) so that's why I suggest people go directly to the setup menu to verify settings.
Usually the Statistics columns are correct though.
SleepyHead is just a little buggy when it comes to the 960 but buggy only in things like the settings or if the humidifier is attached and not usually critical.
If you want to to Encore to see what it says I can point you to it but it's strictly Windows software.
Send me a private message if you want to give Encore a try.

Pressure max in setup is set at 18.

According to PPT, when there is decreased flow, PS is increased first. If obstruction, increase is blocked so flow is not corrected so EPAP increases pressure.
If the IPAP is at 18 (max) and/or PS is at max of 12 during the night, and then there is decreased flow PS can't be further increased. So, does the program read that as an obstruction and increase EPAP (when in reality there may not be obstruction)?

I scanned through the flow curve- once in a while I see consistent patterns but each section of consistency is not necessarily equal to the wave form of another section of consistency. Kind of driving me crazy.

Mom slept over 7 hrs. last night with an AHI in teens. She was positioned really well- in terms, of her chin not hitting her shoulder. She has dystonia (which means her head turns to right uncontrollably- like when anxious or she lifts left arm, and often during the night). I didn't have to get up even once during the night! Hopefully, data saved to SD card.

ForMyMom wrote:So, does the program read that as an obstruction and increase EPAP (when in reality there may not be obstruction)?

I don't know the answer. That's digging way deep into how and why the machine responds like it does.
I have always been of the mind set to trust the machine to do what it thinks it needs to do and give it the necessary settings to do the job effectively.