Need some help and advice for my wife

Need some help and advice for my wife - Printable Version

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Need some help and advice for my wife - doncaruana - 12-31-2016

While I've been using a bipap for closing in on 20 years, my wife just got diagnosed a few weeks ago and is having some major issues.

She breathes through her mouth so a full face mask is what she's using. She initially tried one that was supposed to be the most comfortable but had a lot of leak issues. Then she went back and has a quattro now. And she's still pretty miserable and doesn't really feel rested at all.

Last night was the first time we got detailed information from her AirSense 10 Autoset (not a "for her" model, because they keep telling us it's "just more girly" *sigh*) because I put an SD card in it. From sleepyhead, this is what it tells us:

1 "clear airway" event (what is this??)
7 hypopnea events scattered throughout the course of the night
5 large leak events in about a 3 minute period. I have a feeling this was when she woke up and was fiddling with it.
4 obstructive events
5 RERA events throughout the night - this seems troubling to me...

I know EPR is off for her - is it possible it would help with any of that? For that matter, does anyone know if we put our foot down and got the autoset for her rolling for her, would that potentially help?

As far as the leaks, I think they're subtle - maybe a little air squeezing out of the sides here and there. Seems like I get that all the time but it doesn't show up on the reports. And her machine gives her all smileys. Should she expect it to be a perfect seal 100% of the time or is she just unnecessarily sensitive to these leaks? Sleepyhead (and her machine) say she had zero leaks - to which she said bs.

If she should expect a better seal or can't get over it mentally (I have gotten to where I just subconsciously adjust my mask), what other options might she have? It kinda seems a FFM is an FFM to me. I saw the cpa seal stuff out at [commercial link removed; instead search Google for "CPAP seal"]. It's pricey but would be worth it if it worked for her - anyone know anything about that?

I'm fascinated with the graphs in sleepyhead, but not sure what to make of them. I'll gladly post if anyone thinks they will help. It does seem to me that, if I read them right, after she had her first obstructive event, her pressure jumped up from 8 to 14 and then quickly ramped up to 18 and stayed up there for a while. For that hour, she had 2 each of obstructive, hypopnea, and rera. Then it ramped back down and then, after her next obstructive event, it ramped way up to 18 again and she finally gave it up and took off the mask. I don't know what any of that means, it was just an observation I made based on the graphs...

Thanks for any advice any of you can give!!

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RE: Need some help and advice for my wife - Crimson Nape - 12-31-2016

Aside from looking niceer, the "For Her" model has an algorithm that is designed to respond to an apnea event in a more gentle way(less aggressive) than there standard model. This feature is an option in the setup menu that can be turned on or off.

A Clear Airway is when the brain forgets to tell the body to breathe. (Non obstructive apnea)

I'm listing some links to help in understanding definitions, abbreviations and SleepyHead:

Terms and Definitions Sad

From the Wiki link at the top of the page)
http://www.apneaboard.com/wiki/index.php?title=Definitions

Acronyms commonly encountered:
http://www.apneaboard.com/wiki/index.php?title=Acronyms

Beginner's Guide To SleepyHead:
http://www.apneaboard.com/wiki/index.php...SleepyHead

I hope this will prove useful.

RE: Need some help and advice for my wife - Sleeprider - 12-31-2016

Sounds like AHI is about 2.0. It would help to see how the events correspond to pressure changes on the machine as well as leaks and other important data. Since you now have 4 posts, you will be able to take screenshots of data (F12 key), and upload them from your computer to Imgur. Follow the organize and posting tutorials in my signature.

The first priority, is comfort and getting the leaks under control. Full face masks are tough to get right. Some of the more popular masks here on the forum are the Fisher & Paykel Simplus and Resmed F20 The Respironics Quattro has been around a long time, is pretty respected, but I think it's really heavy and obtrusive. Comfort is king, and you don't quit looking until you've found "the" mask. I'll respectfully disagree a FFM is a FFM. They differ in fit, feel, materials attachment and size. What works great for one person, may feel like a medieval torture device to someone else. Keep looking, and continue to encourage her.

RE: Need some help and advice for my wife - doncaruana - 12-31-2016

Which parts of the graphs should I screenshot? The parts around the events?

For the masks, I'm admittedly out of my element here. I've been using the ultra mirage II nose mask since day one and I'm good there. I think she initially tried the f20 (can't remember if it was "for her" version or not) and didn't like it. She thought the silicon was too slippery and let air out too easy and it irritated her nose. She's using the quattro now.

Not sure if they had the simplus - looks interesting.

Poor thing is beside herself trying to get comfortable.

RE: Need some help and advice for my wife - Sleeprider - 12-31-2016

What we need in a screenshot is described in this link in my signature Organize your SleepyHead Data. That has all the efficacy data and machine information we need.

Try to specifically narrow down what aspects of the mask are bothering her, or where leaks occur. Supplier #31 is a home-business and she makes comfort devices and covers to help with fit and comfort of using CPAP. You have to get the right mask, then you can fine-tune with some of the cushions, covers and add-ons. This would be a lot easier if suppliers would operate like a retail business and let you browse the merchandise and choose what works. My DME was like that, but they went out of business this month.

RE: Need some help and advice for my wife - doncaruana - 12-31-2016

Well, here are the graphs - hopefully I got this right. http://imgur.com/a/HAM7Y

For the mask, mostly it seems to be the little leaking around her cheeks that's bugging her.

RE: Need some help and advice for my wife - trish6hundred - 12-31-2016

Hi doncaruana,

I wish your wife good luck in finding a mask, it can be the hardest part of the therapy.
I use the CPAPseal and it works very well with the F&P simplus for me, but everyone is different.
I also wish your wife good luck on her CPAP journey.

RE: Need some help and advice for my wife - Gideon - 12-31-2016

Look at the Amara View. It is different than every other FFM I have seen and it is working for me.

RE: Need some help and advice for my wife - Sleeprider - 12-31-2016

(12-31-2016, 03:37 PM)doncaruana Wrote: Well, here are the graphs - hopefully I got this right. http://imgur.com/a/HAM7Y

For the mask, mostly it seems to be the little leaking around her cheeks that's bugging her.

That's a great job on the charts. What we see is that your wife is experiencing a reasonable number of events, but her machine is set wide-open and is not using any comfort features. Because she starts at a pressure of only 5 cm, it is hard to establish a mask fit that holds when the machine increases pressure rapidly about 20 minutes after startup. It's obvious a pressure of 5 is pretty useless from a therapy point of view and her average pressure is nearly 13 cm, and approaches 18 cm.

To make this more tolerable, she needs to start at a higher pressure. I'm going to suggest the lowest minimum pressure that I think can work here, and that is a minimum of 9.0. If she needs ramp to tolerate that, then set a ramp from 6 minimum on auto. Also, lets add some exhale pressure relief. EPR of 2 or 3 cm will make this high pressure much more comfortable. Many people with the pressures your wife is seeing use bilevel machines for that comfort, but the Autoset gives you up to 3 cm of pressure relief. You should use it. Finally, lets make the maximum pressure 17 for now. I think the machine gets a little too high, reacting to snores that don't necessarily mean anything.

Mask fit is another matter, and I only see one place where a large leak occured here. Looks decent to me. The settings here will greatly increase her comfort. To summarize 9-17 with EPR 3, your choice on ramp.

RE: Need some help and advice for my wife - doncaruana - 12-31-2016

(12-31-2016, 04:26 PM)Sleeprider Wrote: ...
Mask fit is another matter, but the settings here will greatly increase her comfort. To summarize 9-17 with EPR 3, your choice on ramp.

Oh my gosh! Thank you SO much!! I'm actually excited to go over them with her and see how they work tonight!!