How do I help my Father with CPAP

BTW, just for info, you can always tack on new thoughts/notes to older ones just above them rather than always starting new ones... can make it easier for us to follow (and realize there's been more), by editing the earlier notes rather than starting new.

Julie wrote: ↑

Tue Sep 10, 2024 3:20 pm

BTW, just for info, you can always tack on new thoughts/notes to older ones just above them rather than always starting new ones... can make it easier for us to follow (and realize there's been more), by editing the earlier notes rather than starting new.

I'm not sure I completely follow?
I actually rather like the chronological threads that read through time rather than being expected to jump back to an original post to read updates? If that is not what you meant, then sorry please elaborate with an example.

Anyway, Today's news, we had a virtual visit with the Sleep Med Practitioner and she finally agreed that the CPAP was not working for him and he is doing everything he is supposed to be doing, the machine just can't do what he needs. She put in the order for the new titration study for an ASV machine even though he hasn't had the heart echo yet. This is good news since the heart echo isn't scheduled till November and he has had nights where the AHI was over 67.

TCLynx wrote: ↑

Thu Sep 12, 2024 5:51 pm

the machine just can't do what he needs.

It's about friggin time that someone would read the writing on the wall. It was in big neon letters.

He still needs to try to sort out the leak situation though. The ASV pressures needed to deal with the central apneas aren't going to be doing the leak situation any favors.

But....even with leaks he will get better therapy with the ASV than he is getting now without leaks.

Good luck and God Bless you for trying to do your best to care for your dad.

I agree that he still has nights where the leaking gets out of control (I mean when you start pulling at the mask and struggling to take it off, it leaks,) However, he is also having nights like this. Though I realize that the minimal leak is because there is almost no pressure at this point.


I did finally get to give the sleep med practitioner the sleep hq link to his data as well as some screen shots from oscar. I now get the impression she has never seen sleep hq or oscar data from a resmed machine. The best she sees is the compliance report from the machine, not the minute by minute data. She has probably only seen minute by minute data from in lab sleep studies.

Anyone Got any ASV Advise for us? Dad really needs a machine that can actively monitor his breathing and deliver a real breath when he has centrals. Also he seems to have cheyne stokes respiration several nights out of the week and there are even huge stretches that look like it to me but the machine isn't flagging all of it.

Anyway, we finally got the Sleep Dr to put in the order for a titration study for ASV since it is painfully obvious that the cpap isn't working and they already ruled out bi-level during the first titration study.

So is there anyone out there who can share any tips/tricks about how the ASV feels different or things to keep in mind or to know about ASV therapy vs regular cpap? We had a lot of issues with leaking at higher pressures on cpap, is that going to be a problem with the ASV? Or is it likely to just kinda blow by since it doesn't keep up the constant high pressure after delivering the breath?

TCLynx wrote: ↑

Sat Sep 14, 2024 11:07 am

We had a lot of issues with leaking at higher pressures on cpap, is that going to be a problem with the ASV? Or is it likely to just kinda blow by since it doesn't keep up the constant high pressure after delivering the breath?

We really won't know much until we see what happens when he has the centrals and the machine kicks in with the rapid rise in PS to force breathing. One or two occasionally probably not going to be high levels of pressure but if he ends up having a LOT of centrals back to back then the pressure may stay elevated for a longer period of time.....or at least seem to stay elevated for longer durations.
Also depends on what baseline EPAP pressure is is going to be needed to deal with the obstructive stuff going on.
Also will depend on which mode is used...regular ASV mode or auto ASV mode.
With regular ASV mode the EPAP is fixed but PS auto adjust for the central apneas.
With auto ASV mode the EPAP will auto adjust as needed (within parameters set) and EPAP going up will make IPAP going up (even if PS doesn't go up) and that could maybe make for a prolonged period of time with EPAP/IPAP pressures a lot higher.

Two problems....central apnea and obstructive apnea and each has a different way it needs to be dealt with.

I have some experience with both ASV modes but I did it just to be doing it and not because I had a problem with centrals so not really a viable comparison to rely on. Meaning I tried ASV just to be trying to see what it was like and not because I need ASV. I also never used a full face mask with it to see what happens with leaking.
Contrary to what some people will say.....ASV doesn't mean you just HAVE to use a full face mask (old wives tale).

TCLynx wrote: ↑

Thu Sep 12, 2024 5:51 pm

Julie wrote: ↑

Tue Sep 10, 2024 3:20 pm

BTW, just for info, you can always tack on new thoughts/notes to older ones just above them rather than always starting new ones... can make it easier for us to follow (and realize there's been more), by editing the earlier notes rather than starting new.

I'm not sure I completely follow?
I actually rather like the chronological threads that read through time rather than being expected to jump back to an original post to read updates?

What you are doing is fine. Julie is a little bit duh at times.

ChicagoGranny wrote: ↑

Sat Sep 14, 2024 3:04 pm

TCLynx wrote: ↑

Thu Sep 12, 2024 5:51 pm

Julie wrote: ↑

Tue Sep 10, 2024 3:20 pm

BTW, just for info, you can always tack on new thoughts/notes to older ones just above them rather than always starting new ones... can make it easier for us to follow (and realize there's been more), by editing the earlier notes rather than starting new.

I'm not sure I completely follow?
I actually rather like the chronological threads that read through time rather than being expected to jump back to an original post to read updates?

What you are doing is fine. [...]

I agree. What you are doing is fine.

So today I'm trying to set up dad's old laptop computer with oscar and everything to monitor and check stuff so we can take it with us if we decide we need to go to the DME office since I want to show them what looks like the machine may be malfunctioning.
I don't actually want to have them replace this one because it obviously (even when working properly) can't actually help dad with his problems.

But I think I should also set it up with the bluestacks App Player so that I can put the pulse ox monitor on it since Dad's phone doesn't make it through the night keeping the dashboard open to get the pulse ox alerts since even plugged in, apparently the battery doesn't charge fast enough to keep from killing it in less than 11 hours.

Is it worth setting up with the sleep hq subscription to be able to import the pulse ox there? Or do I just continue with Oscar and doing that manually. It would be nice to be able to share the pulse ox stuff with the Dr easily along side the Cpap but I didn't think to test the pulse Ox with it until after the sleep hq pro trial ran out. We really don't need another monthly subscription.

Ok, in the process of setting up a computer just for sleep, pap and o2 monitoring. What are the primary things I should make sure to include?
I will set up bluestacks so I can include Android apps on it.

I will put;
Oscar
Link to Sleep HQ account
Camera app
ViHealth app

Any others?

Not sure If I should start a new thread now or not.

We did finally get in for a sleep study (they finally relented and went ahead and ordered the study before getting the cardio echo done.)
Unfortunately, at the sleep study he really didn't sleep. He kept waking up. Probably a combination of weather since that was the night Helene was passing us and he didn't get his rivastigmine patch changed that evening which seems to mess up his sleep a bit too.

Since the sleep study while waiting to see what was going to happen, I finally gave up on making him use the CPAP since about all it was doing was making it hard for him to sleep. We have just been making him sleep on his side as much as possible and he has been doing fairly well for the past few weeks. Of course we don't have any real good way to monitor his sleep/breathing when he isn't wearing the machine other than the little O2 ring.

But even without getting a good titration, they went ahead and prescribed the ASV and we got it Monday.
But Since they didn't really get a titration, They basically just guessed on the settings.
He hasn't really been able to sleep with it much at all, I put the smaller mask to my face with it on and it is definitely way more aggressive than the cpap was.
Anyway, The Device is
the ResMed AirCurve Bi-Level AutoSV Advance E0471
the settings they entered are
Min EPAP 4
EPAP Max 8
PS Min 5
PS Max 10

So please some one help me understand the pressures, Does this mean he is feeling min pressure of 4 on exhale and then 5 on inhale for minimums? Or is it more like 4 on exhale and 9 on inhale for minimum?
He is complaining that it is exhausting him making him inhale too much.

What are the range of settings allowable on the ASV? Since we are working to make him sleep on his side, I don't really think we need much pressure support for the obstructive apnea. At least until he gets comfortable with the machine and isn't afraid of it anyway. If it is possible to have it basically run at a constant low pressure and monitor him and Only up the pressure if it detect a central apnea or other breathing instability. Even if it is basically doing nothing but monitoring with a gentle flow of air so we can get some readings for a few days.

TCLynx wrote: ↑

Thu Oct 24, 2024 9:15 am

Or is it more like 4 on exhale and 9 on inhale for minimum?

This is what he is initially going to feel.
When you have PS in use then you have to add the PS to your EPAP to get IPAP (at least the starting EPAP/IPAP).
And yes....with the increase in PS to 5 he is going to feel the difference.

With current settings the PS can increase to 10 so that would add 10 cm more to that EPAP of 4....so that's an even bigger jump but the idea is when the machine does that jump it is in response to a central apnea because that's how you jump start breathing....give it a big rapid burst.
I am a bit concerned about the 10 PS limit though. It might not be enough to adequately deal with the centrals.
10 cm is generally considered a minimum amount of PS needed to force breathing when central apneas are present.
The machine won't do it all the time...just when it thinks centrals are happening.

BUT that 5 PS is going to be there all the time and a consideration might be to have minimum PS set to 3 (more along the lines of what EPR does and he is used to). Might be easier adjustment for your dad.

So I think the goal should be (at least for this weekend) get a very gentle setting so that he can actually wear it and sleep and we can collect some breathing data. The way it is set right now, we are lucky to keep it on him for 3 hours and I don't think he is actually sleeping much at all with it on.

Once we get through the weekend, we look at the data and start adjusting the levels to handle the events. I'm hoping the sleep med practitioner is amenable to that Idea.

I realize that a certain amount of pressure may be needed to really do anything about a central apnea, however, I need to get a setting on him that will let him actually wear it AND sleep before it will have any chance of doing anything for a central apnea.

My question is, do we have to have so much pressure support all the time? Like is a min ipap of 5 required? What does the machine look at to decide what ipap and epap level to use?
Is the machine smart enough to tell when someone is sleeping? The Cpap machine had an auto ramp setting that I think was supposed to judge when they had fallen to sleep before going into the regular settings.

So anyway I just spoke to them about the settings and they seem ok with me changing it to epap 4-4 and PS 0-5 (yes I realize that this setting probably won't work for jump starting from a central event but it will maybe let me keep the mask on him for a night so I can get some data to look at and try to adjust from there.)

TCLynx wrote: ↑

Thu Oct 24, 2024 1:17 pm

Is the machine smart enough to tell when someone is sleeping?

Not really.

That Auto Ramp thing is ONLY for ramp and it's an educated guess at best.

TCLynx wrote: ↑

Thu Oct 24, 2024 1:17 pm

So anyway I just spoke to them about the settings and they seem ok with me changing it to epap 4-4 and PS 0-5 (yes I realize that this setting probably won't work for jump starting from a central event but it will maybe let me keep the mask on him for a night so I can get some data to look at and try to adjust from there.)

So while I do understand your thoughts on starting more gently with the pressure and have the idea to look at the data later and hopefully fine tune things a bit you have to realize that by allowing more apneas to happen because of sub optimal settings you run the risk of those apneas messing with his sleep and causing wake ups and the "data you wanted to get" might not be all that helpful if he doesn't sleep.

Ok here is a sleep HQ share link.
https://sleephq.com/public/teams/share_ ... a60719e136

He did really well with it when I had first changed the settings to be epap 4. Pressure support 0-7
Then I kept trying to up the pressure support and things kept getting worse. When I went back to the epap 4 and pressure support 0-7 He got an AHI of 3.45 on November 10th and he had several decent nights at that setting. Then Sat Nov 16th he was back up to AHI of over 26 and a bunch of cyclic breathing.
Sunday Nov 17 the leaks got bad after 2 am and he couldn't get back to sleep really the rest of the night. Since then I've had trouble getting him to use it much. We even changed to the new mask (same Vitara just the brand new mask and cushions) we got when he got the new machine.

Thursday I spoke with the sleep Medicine Practitioner and she adjusted the settings to pressure support of 1-7.

Now He is complaining again that he is having to work too much to breathe. As in he feels like he is having to actively initiate the changes from inhale to exhale and back. I believe there are sensitivity and/or timing settings that can be changed but I'm not sure how to tell what I need to change for him. I do think this sensitivity is probably what needs to be adjusted so that he doesn't feel like he has to actively "suck and blow air to get the machine to work".

TCLynx wrote: ↑

Sat Nov 23, 2024 7:52 am

Thursday I spoke with the sleep Medicine Practitioner and she adjusted the settings to pressure support of 1-7.

Now He is complaining again that he is having to work too much to breathe.

It's important to try to tease out exactly what your father means when he says he's working too much to just breathe.

Some people use the phrase "it's too hard to breathe" to mean they can't comfortably inhale enough air to feel like their inhalations are easy and complete. The usual fix is to increase the minimum IPAP a bit. With the machine you are using, that would mean increasing the pressure support from 1 to something more like 2 or 3. At the beginning of the night that would mean his pressures would be EPAP = 4 and IPAP = 6 or 7.

But some people use the phrase "it's too hard to breath" to mean they can't comfortably exhale against the pressure to feel like they've managed to exhale completely before the next inhalation. Typically this would mean reducing the EPAP a bit, but with an EPAP = 4, you're already at a minimum EPAP value for most machines. Ironically sometimes increasing the pressure support helps with this problem---the drop in pressure at the start of the exhalation is more important for comfort on exhalation rather than just the EPAP itself. For some people with exhalation problems, a min PS of 3 or 4 makes exhaling more comfortable than a PS of 0, 1, or 2 does. So it may be worth seeing if your father is more comfortable breathing with EPAP = 4 and min PS of 3 (or 4) than he is with a min PS = 0 or 1.

As in he feels like he is having to actively initiate the changes from inhale to exhale and back. I believe there are sensitivity and/or timing settings that can be changed but I'm not sure how to tell what I need to change for him. I do think this sensitivity is probably what needs to be adjusted so that he doesn't feel like he has to actively "suck and blow air to get the machine to work".

The settings that control the change in pressure between IPAP and EPAP are Trigger and Cycle. The default setting for both of them is Medium.

Trigger controls the change from EPAP to IPAP at the beginning of each inhalation. A Trigger setting of Low or Very Low will cause the machine to go from EPAP to IPAP sooner. As in the machine will require a smaller positive flow rate into the lungs to determine the start of the inhalations. Theoretically this should mean the person using the machine should not feel the need to "actively suck air" into the lungs to get the machine to switch to IPAP at the beginning of the inhalations.

Cycle controls the change from IPAP to EPAP at the beginning of each exhalation. A Cycle setting of High or Very High will cause the machine to go from IPAP to EPAP earlier in the exhalation. In other words, with Cycle set to High or Very High, the person using the machine should not feel the need to "actively blow air" to get the machine to change from IPAP to EPAP.

Given what your father is saying is happening, I would suggest having him try Trigger = Low and Cycle = High while he is awake with no intention of trying to get to sleep for at least 10-15 minutes. Have him tell you if breathing is more or less comfortable with these settings than it is with both of them set to Medium. Try really hard to tease out what he says about how the machine is or is not tracking his breathing in a way that makes breathing comfortable and normal feeling for him. If he's still fighting to suck in enough air when he's inhaling, see if Trigger = Very Low feels better or worse for him. If he's still fighting to blow out enough air on exhalation, see if Cycle = Very High feels better or worse for him.

Two other settings that are also worth looking at would be Ti_Min and Ti_Max. They control how long the machine will be at IPAP. Ideally Ti_Min should be set low enough where most normal inhalations are longer than Ti_Min; Ti_Max should be set high enough where most normal inhalations are shorter than Ti_Max. If Ti_Min is set too high, that can make the user feel like they're having to blow extra hard to get the pressure to drop to EPAP or it can make the user feel like the machine is trying to make them inhale more air than they want to inhale. The problem is that IPAP won't drop to EPAP until after the Ti_Min period has elapsed, no matter how hard you try to exhale. If Ti_Max is set too short, then the pressure can drop to EPAP before the user is done inhaling, and that can make the user feel like they have to actively work on sucking air in to finish their inhalation comfortably or that the machine is forcing them to exhale before they're done with their inhalation.

Good luck!