Smargie’s Therapy Thread...in Need of ASV Advice

[katestyles]

Thank you, Zonker

When you say that leaking (which I guess is the proper term for mouth breathing) confuses the machine, are you saying that the AHI readings are then incorrect?

Last night I was able to use the CPAP again and was not awoken by chipmunk cheeks or big exhalations. I thought I’d slept well, but do not feel rested today. And my AHI was 98 I just took a nap for an hour and 20 minutes and had an AHI of 57. I’m really confused! Last night and today felt the same as it did the first 5 nights I used it when the AHI was always between 5 and 6.

I also looked at my doc’s rx and see that she ordered an APAP, which I understand is like a CPAP which adjusts pressure automatically when you are exhaling, so you don’t have to fight against that incoming air. So the flex/EPR question no longer matters.

Why would I be having a higher AHI with the CPAP on than I did without it during my sleep test? And why, after 5 good first days, would I suddenly start leaking? Is this something I should call the RT about?

It is not so much that the AHI readings are incorrect. It is more that your machine is trying to raise the pressure in a tire that has a huge gaping slash in it.

An APAP can adjust in two ways. The first is that it will allow you to change the inhale and exhale pressure, so it is easier to breathe out. In fact many CPAPs will do that. It is called flex or EPR or Breathe easy or something else. The APA can also adjust the main pressure, so that if you start to have apneas, it can increase the therapy pressure to try and prevent them.

I am not familiar with the machine in your sig.

[katestyles]

I just looked up your machine. Looks like your DME pulled a trick on you. Your machine is not an APAP.

[katestyles]

It would be really helpful if you could download the sleepyhead software, and use it with your SD card from the machine to get up some screenshots for the clever people here to look at.

The information on how to do that is listed in the stickies at the top of the main forum page.

[palerider]

Thank you, Zonker

When you say that leaking (which I guess is the proper term for mouth breathing) confuses the machine, are you saying that the AHI readings are then incorrect?

It's not quite right to say that leaks confuse the machine, but they do have to work harder the worse the leak is.

The fan spins however hard it needs to in order to maintain whatever the desired pressure is at any one instant, as you inhale and exhale, the fan adjusts speed to maintain the proper pressure against the built in vent rate of the mask. When you have mask leaks, that's more air that's going out, so the fan has to spin faster to push more air through the tube, to maintain pressure.

If the leaks are reasonable (and that varies with your machine) then everything is ok.. .the fan just spins a little faster. But as leaks get worse and worse, into the area where the machine flags 'large leaks' then it becomes more and more difficult for the machine to tell *what kind* of apnea you have... but it can still tell you had one.

Eventually, leaks can get so bad that the fan can't spin fast enough to push enough air through to maintain pressure, but that takes really terrible leaks.

Thank you, Zonker
Why would I be having a higher AHI with the CPAP on than I did without it during my sleep test? And why, after 5 good first days, would I suddenly start leaking? Is this something I should call the RT about?

Sleep tests are very often inaccurate, they may be "The GOLD Standard", but they are, in many ways, woefully inadequate if you think about it.

You're in an artificial environment, all wired up and less comfortable than normal. It's *one night* and likely only part of that night. reading any titration report, you'll see that "oh, your good pressure was 12cm, you slept for 45 minutes at that pressure!"

It's a simple fact that sleep varies from night to night and even hour to hour, you'll have better and worse days with the same exact settings. Yet the "gold standard" is a small number of minutes tested on one night.... a brief photograph taken during the marathon run that is your sleep.

It's not surprising that sleep studies are sometimes quite wrong, what's surprising is that they're ever right!

[Smargie]

I’ve ordered a chin strap and it will be here tomorrow. I’ll also get a scunci tomorrow. I went to the medical supply store yesterday and they said to first try the chin strap and that if that doesn’t work I’ll have to use a face mask. Seems like some of you go pretty far in order to avoid a full face mask...looking at you, Zonker. That picture of you was pretty funny.

So last night I woke up with the chipmunk cheeks again. I woke my husband up because we were facing each other and I was blowing air into his face and the machine was making a lot of noise. My mouth was parched...even my night guard was bone dry. Since I was awake I tried keeping my mouth closed, but some air still escaped though the sides. I really don’t get it given the success of my 1st 5 nights. What happened?! (It does still make me suspect the machine.) I fear a full mask is in my near future.

I also confirmed that I do have an APAP...an auto CPAP. I Tried to change this in my signature but can’t figure out how. I will work on downloading sleepyhead tomorrow and see if I can glean some more helpful information.

[Smargie]

I've downloaded SleepyHead and am becoming a little more familiar with it every day. I've worn the chin strap for 2 nights and it has brought my AHI down to the high 30s. Tried the scunci last night and it was a bit too claustrophobic. Plus my husband kept laughing at me!

Two questions:

SleepyHead did not record any data for me last night, and yes, I did put the chip back into my CPAP machine. Anyone have any ideas why? Could it have anything to do with that thing on the side of the chip that you can slide up and down for locking purposes?

I made a mistake when I initially set up my signature and need to change it. How is that done?

[LSAT]

If the chip was locked no data could be recorded.

[katestyles]

You change your signature by using the index at the right of the screen where it says your login name. Click there and go play with the menus. One of them has a place to change your signature.

[Smargie]

Thank you for your help LSAT and katestyles.

Soooo...things become more and more confusing for me. Last night I was able to use the CPAP for almost 6 1/2 continuous hours with just a little mouth breathing. My AHI was 64 with 337 CA events, 16 H and 52 OA. These numbers make no sense to me at all. How could I go from an average of about 4 AHI the first week and then for the next two weeks bounce around between a low of 39 to a high of 98? My CA numbers are usually much higher than my OA and H numbers combined.

It would seem that I now have complex sleep apnea. And I've gone from an AHI of 18 on my sleep study to these very high numbers. It seems like I would be better off not using the CPAP as things stand now.

I'm going to put in a call to my sleep doctor today. I think I only have about a week to exchange my mask and machine. Any thoughts or advice?

[Jas_williams]

Thank you for your help LSAT and katestyles.

Soooo...things become more and more confusing for me. Last night I was able to use the CPAP for almost 6 1/2 continuous hours with just a little mouth breathing. My AHI was 64 with 337 CA events, 16 H and 52 OA. These numbers make no sense to me at all. How could I go from an average of about 4 AHI the first week and then for the next two weeks bounce around between a low of 39 to a high of 98? My CA numbers are usually much higher than my OA and H numbers combined.

It would seem that I now have complex sleep apnea. And I've gone from an AHI of 18 on my sleep study to these very high numbers. It seems like I would be better off not using the CPAP as things stand now.

I'm going to put in a call to my sleep doctor today. I think I only have about a week to exchange my mask and machine. Any thoughts or advice?

What are the settings of your machine ? You may do better with the flex reduced

[Smargie]

My AFLEX was set at 3. I turned it down to 1 last night and felt like I was fighting with the machine. My husband complained that it was louder than usual and that a lot of air was blown in his face. I’m exhausted today...my sleep becomes less and less restful.

I did put in a call to the doc yesterday and have not heard back thus far.

I don’t know if the machine is making my sleep apnea worse or if I’ve developed a new medical condition which is causing the numbers to be so high. I’d really like to just discontinue using it, but am afraid of compliance issues. I’m so tired now that I can’t think straight and am becoming obsessed with my numbers and so anxious that I can’t stop reading articles about apnea both on this site and elsewhere.

[Spot123]

I also looked at my doc’s rx and see that she ordered an APAP, which I understand is like a CPAP which adjusts pressure automatically when you are exhaling, so you don’t have to fight against that incoming air. So the flex/EPR question no longer matters.

The flex/EPR is to set the difference between inhale vs. exhale pressure. Lowering the pressure for exhale makes it easier for some people to breathe out when using the machine. It's optional and a separate decision from the treatment pressure for the APAP/CPAP.

[Smargie]

I put in another call to the doc's office today and they downloaded my data and consulted with my doctor. They said I have Treatment related central sleep apnea and that it's very common. I was advised to use the CPAP for a week or 2 more and that my numbers should start coming down. If they don't they don't the doctor will either adjust the settings or we'll try a different type of machine.

Anyone on here have experience with treatment related central (or complex) sleep apnea you can share? I'm feeling very down and hopeless. I don't sleep well anymore and I've become exhausted and overly emotional. I'm also having a lot of headaches and the CPAP causes me to have an intense sore throat while I'm using it. The man I talked to at the doctor's office said "You've got to be sleeping better with more air!" I don't see how I'm getting more air when the apnea events on my SleepyHead graphs are often so frequent that the bars are semi-solid. And it's not just the central apneas that are high. The OAs and the Hs have also increased quite a bit.

BTW, I tried to take a screen shot using F12, but when I went to the file to see it it was blank. I did toggle the F11 and then read later that I shouldn't do that. Any advice? I'm off to take a nap WITHOUT the CPAP!

[Dog Slobber]

BTW, I tried to take a screen shot using F12, but when I went to the file to see it it was blank. I did toggle the F11 and then read later that I shouldn't do that. Any advice?

If you're having trouble with Sleepyhead supported screen shot, use the OS.

Windows: Snipping Tool
Mac: Shift-Control-Command-4

I'm off to take a nap WITHOUT the CPAP!

You must have the rare nap-resistant Sleep Apnea.

[Smargie]

Thanks for your help, Dog Slobber, and I love your user name! I played around with the Snipping Tool and was able to capture what I needed from SH. But I could not figure out how to transfer it to a post on here. How do I do that?

I'm sure that my naps aren't apnea resistant...they're just more relaxing, since I don't keep getting woken up by the machine. And since my central apnea is treatment induced I figure I'll spend the least amount possible on the CPAP.