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APAP By Proxy back again.
Well, I introduced myself and my mother on this thread: Cpap by Proxy

So, I won't go into very much past history, just a quick review. My mother age 84 was diagnosed with complex sleep apnea in October 2014 (approximately) by her primary care doctor from a home sleep study. The doctor's prescription was for an APAP with pressure settings wide open (4 to 20). Well, the very first night, when the pressure ramped up to 17, mom took the mask off and threw it across the room. That's when I got on the apneaboard, and intensely studied sleep apnea.

I turned the top pressure down to about 10, which was a pressure that mom could tolerate. Unfortunately, her OAs were still way above 5. So, gradually, VERY gradually, I turned the top pressure up, and up, and up. It is now up to 20 with an expiration relief setting of 3. Her AHI can still be anywhere from 3.4 to 10, with the average around 5.

I also very gradually turned up the lower pressure because it was obvious that a lot of apneas were happening while the machine was slowly increasing pressure. So, her settings now are 14 for the lower pressure, 20 for the higher pressure AND a 10 minute RAMP that starts at 10.

The problem is: mom can't tolerate the 20 cm H20. She wakes up frequently because of the pressure (which came up because she has A LOT of flow limitation). She hits the off/on button, it goes into ramp mode, and she goes back to sleep. Within 20 minutes it usually goes up to 18 to 20 again and she wakes up again. Lately, she has been getting up, going to the bathroom, and goes back to sleep without the APAP machine, (she says the mask feels like a vise on her face).

Her primary care doc wanted her to have a sleep study at a sleep lab last winter. Well we are two little old ladies that live high in the snowy mountains. To get to a sleep lab, we have to travel over a treacherous mountain pass and we weren't willing to do that in the winter time. But now, spring is here and the passes are "doable" so we have an appointment with her primary to ask her to refer mom again to the sleep lab. Certainly mom really needs the help of a Sleep Doc that knows his stuff. The primary knows very little and wasn't even sure if she should prescribe the APAP or not. She actually told us it was up to us. Our thoughts were, mom's home sleep study showed she spent MOST of the night with O2 saturation under 88 so we were determined to do SOMETHING. So, we went with the APAP.

Here is my question for the Board: Mom feels like she can't breath OUT when the pressures are up to 20. Would a bilevel APAP work better for her? If so, how do I convince her primary doctor tomorrow to switch to an auto BiPap? I think she will be very uncertain about it.

The appointment with the sleep lab and titrating is probably a month or more away and mom is fading fast on being able to use her APAP. Suggestions?

Thanks for being here. All of you have been a great help. I have to go to work but will check back tonight.

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Hi Sue, nice to read you again.

The sleep test is a fine idea, and mostly a visit with respiratory folks would make sense to me. 20's certainly a high pressure for her, so I wonder if something else might be going on. What is her ahi at 10? If she's able to sleep comfortably at 10, then it might be a fine idea to stay around 10-12 until you get this sorted out. It depends on what her ahi is doing, and also what type of events she is having. I suspect they are OA's, but maybe not? If they're CA's then the lower pressure makes even better sense. Also, as I'm sure you already know, if she can sleep on her side rather than her back that would be a good thing.

If in the end she does need pressure of 20 or better, then I think a bi-level makes sense because you will be able to keep the exhale pressure down more.

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Bilevel is used for people who need high inspiration pressures; and for those who are non-compliant on straight CPAP.
It's easier to breathe out with a higher ERP than is available on the Autoset. One sets a Pressure Support -- the split between IPAP and EPAP pressures.
One also sets an IPAPmax pressure; and an EPAPmin pressure. The bilevel auto maintains PS=IPAPmax - EPAPmin as a constant. Mine is 5.
The machine is constrained by IPAPmax and EPAPmin. Common to the ResMed line of bilevel autos is the ability to go up to 25 cm-H2O pressure. Not that I would suggest using >20 on your mom. If she cannot tolerate 20 -- you might have to settle for best effort.

Older people are less tolerant of things that are less than comfortable -- just ask me.

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Hi Sue,
My heart goes out to your mom and good for you taking such care of her! I've lived in the middle of nowhere before so I hear ya about difficulty getting out and getting advanced medical care/specialists etc without a great deal of struggle.

I have no bright ideas as I'm a relative newbie. You've done a great job digesting the info about c-pap. I think you are right to want to ease her back somehow even if some apnea's get through rather than have her refuse to wear the thing for misery.

Is there a reason she isn't using something "lighter" like a p-10 and if need be chin strap, than a full face mask, as she says her mask feels like a vice. Also re: full face masks, many folk over tighten them as that is what seems right for leaks, but that can create it's own problems. There is a post here somewhere about how to get a perfect fit on one's mask. Sorry I don't have the link, still learning.

See if you can get a lighter nasal pillow mask. (That said if she really needs 20's cm h2o it might not work for her) Did she ever have a sleep study originally?

What are your rescan's showing data wise? If you could download sleepyhead it is easier to share screen shots with the group here and they may be able to better advise.

Best wishes,
The Manse Hen

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Thanks all.
Her CA index is a fairly consistent 5. Once in a while it goes up to 7 or so or as low as 2. One night several weeks ago, I turned the max pressure down to 13 cm H20. Her AHI went up to 33.3. OA index = 27.4, CA index = 4.8, unknown = .6 and H = about .4

She has been sleeping with a backpack full of towels and tennis balls so that she can stay on her side. She does pretty well on her side. Definitely, if she rolls over onto her back, the OA goes up.

She tried pillows (P10) a couple of times and really hated them. She uses the full face mask because she is occasionally a mouth breather. She uses a homemade chin strap.

One of the problems we have had is that her head and face are very small (she is 5'2" and weighs barely 100 lbs). My feeling is that the F10 just doesn't fit her face. But, given the cost of full face masks, it's been hard to figure out which ones to order. Can any of the ladies that have very small heads/features make any recommendations for a small mask/headgear?

Edited to add: she thinks we are torturing an old lady to death!
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Best wishes to you both! I know I first kept looking at my mask with disdain; about the same affection as the cat looking at the bathtub full of water! But now I am more used to it. With little tweaks of air pressure and strap adjustment, I'm finding the Goldilocks zone for comfort.

On the theory that some APAP is better than none, maybe back off the pressures to where it is comfortable for a week or so? An AHI of 5 is better than 30!

Have you signed up for the "My Air" on the Resmed site? It is a simple feedback app, that might encourage your Mom, and help with little improvements. I really like it (it is so simplistic) for a quick overview. For details sleepyhead it great, but some people just want simple feedback. They offer articles based on your last night's scores, so maybe she can get interested in her own therapy a bit more, which will take the nagging burden off of you.

I wear a nasal mask and had a trial full face one when I had the flu. An ill-fitting mask will feel horrid. If the top pressure is too high, it will feel like it is blowing off her face, which pulls the straps, makes loud leak sounds and wakes her up. Add to that a 10 minute cycle, and yeah, that would be a sleeping hell. There is a mask fitting guide somewhere on the internet that mentions adjusting the opposite strap to what you think you should.

Myself, I killed the ramp, as change wakes me. Another trick is to read in bed for while with the mask and air on before bed. She will get used to the feeling and pressures, while relaxing and not thinking about it. If she feels an annoying pinch or pull, she can adjust it. It is a matter of mm. The goldilocks zone is there, you two just have to find it. I do understand that urge to throw it across the room. Please ask her to hang in there. The sleep study will help. Also since you have a machine maybe the DME staff could help too.
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I'm not sure this is working. I'm trying to add an attachment of a jpg of a ResScan screen shot on Feb 15. That was the night that I turned the top pressure down to 13. She had OA index of @27 on that night. She wasn't sleeping on her back because of the backpack full of tennis balls and towels.
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Ok... that worked. I'm not real slick with forum stuff!

This next one is a screenshot with settings of 14 to 20. Her OA on this night = 1.4, CA = 2.2, and H = .6

And, I have now used up my attachment allotment.

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Any updates Suandem? Hope you mother is doing better!
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Thanks for asking, trailrider. She's doing OK. Still sticking with the APAP. There was such a noticeable difference in her cognitive abilities after she started APAP. Without treatment, her O2 sats were below 88 most of the night. She could barely remember her own name. So, I remind her of that and how much the APAP has helped her.

The past several nights the APAP only went up to 20 once or twice, so she only woke up once or twice. She considers that a good nights sleep!! Every morning she wants to know what her events were and what happen during the night.

Her GP referred her to the Sleep Lab and they are supposed to call us. If they haven't called us by tomorrow afternoon, I'm calling THEM!
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