Elderly mom, balky, and her Luna machine

[cpvtnh]

Yesterday I posted about my own upcoming CPAP onboarding (I think I get it next Tuesday, and I’ll go for the Airsense). Now about my mom.

My elderly mom got her CPAP last winter, maybe January or February, after a long wait to get the sleep study and then another long wait to get the machine. She very likely has had severe sleep apnea for many years. We finally figured out we better get her in and get tested.

She has been extremely balky about it, tearing the mask off minutes after we put it on, refusing to let us put it on her. At first she complained a lot about not getting enough air. Sometimes the air was blowing out around the mask even when it seemed the fit should be good. Generally very hard to get her to wear it for 4 hours a day. It’s been hard to tell if she’s really suffering so much with it, or if she’s being dramatic and stubborn. It’s all a black box.

It seems to very clearly benefit her. She has MUCH better mental clarity, memory, etc if she can possibly get a good stretch with it. And then she takes a nap without it or tears it off in the night, and she’s back into the fog.

She has other sleep problems, like restless legs, which may or may not be related to the apnea I guess? She is also very unregulated in her schedule and tends to be up all night and then nap in a chair during the day, at which point my sister tries to get the mask on her.

My sister, who is quite busy, has been bearing the brunt of this and trying to keep her compliant and being a hero, but she has been unfamiliar with CPAPs before mom got hers.

Reading this forum now (I should have done it much sooner, but I was treating mom’s CPAP as something probably doing its job and set up by professionals) — reading here I am rather suddenly realizing that maybe the thing really has sucked for her as badly as it seems. It seems it could be a not great machine that is not properly set up.

I see the Luna machines are new on the market and not well known.

I’m of a mind to advocate buying a new Airsense and finding a new provider? Or getting her scrip from her sleep doc and setting it up and tweaking it ourselves? I feel really bad that she may have been really suffering more than I thought, and her struggle maybe has not been just stubbornness and drama.

[Julie]

Hi, and good for you for continuing to try and help. As you said, Lunas are not well known here (US, CAN) but have you tried to find (maybe with doctor's help?) any Cpap support groups there? If not, there are experts on this forum who should help with general usage even if not familiar with the machine. Did the doctor or someone else set things up for her, e.g. pressure settings? Can you get a copy of her original test (PSG - polysomnograph) which over here would be hers by law, and post it here after covering personal info on it)? It would help a lot to know how it went. It's good to know that when she was able to keep it on she was much better the next day.

Restless legs is a factor for some patients and you might want to send a 'private message' to Kathy Teague, forum expert on that who should be able to help with info.

Just curious (and please don't think I'm assuming anything) if she's otherwise shown any signs of age mentally, because daytime sleeping but not nighttime can be a sign of that, though from what you've said it's as likely just the apnea is causing the trouble. I also suggest putting things like 'mask fit', "leaks", into the search bar at the top to read all (and there's a LOT) info related to those. Doctors so often don't really know much about the masks, settings, etc. and 'prescribe' just standard default ones, but most of the time some tweaking is required (and we can help with those too) by patients.

[cpvtnh]

Thank you.

I don’t have a copy of her test, but maybe I can get a redacted copy from my sister.

In answer to your question about aging mentally, she declined rather suddenly late last summer/fall after some medication glitches. That was when we looked to sleep apnea as a cause, after I noticed the quality of her snoring when she dozed on the sofa. Though of course it could be more than the apnea, and aging and other factors are no doubt in the mix. But it does seem the apnea is a major factor in her mental clarity. She can sometimes be clear as a bell, often after good CPAP use. But more often than not, I think there would be little benefit to her going to a group. We can talk to her about the importance of the CPAP in the day, and she says she understands and agrees, and then she will throw the mask on the floor as soon as her head hits the pillow at night (as one possible scenario).

As far as her nocturnal nature, that goes way back, before any cognitive fog was showing. But yes, I do understand that switching day/night sleep patterns is a sign of cognitive decline. The restless legs go way back, many many years, and that may be a driver of her sleep schedule/habit.

She had high powered jobs, and so she worked hard all day and I’m sure had enough sleep pressure to at least stay in bed some. But since she has retired, she has come unmoored from any schedule.

[ozij]

I’m of a mind to advocate buying a new Airsense and finding a new provider? Or getting her scrip from her sleep doc and setting it up and tweaking it ourselves? I feel really bad that she may have been really suffering more than I thought, and her struggle maybe has not been just stubbornness and drama.

Unless her present script specifically states the Luna machine, you can buy any make of machine with it, and you can buy it online.
Read the first post on this forum (if you haven't already) - it'll tell you about the free software developed to let CPAP users read their therapy results from Resmed machines - called OSCAR.

Make sure you have an SD card for the machine (some come with one) and keep it there all the time, except when it's being read - to a computer
You (i.e. your sister and you) may also need to get an SD to USB reader.

I'm sure you can help your sister by tracking the therapy results - either by sharing OSCAR data, or by sharing the online service called SleepHQ. SleepHQ is not free (only a trial is free).

[ChicagoGranny]

Airsense

Make sure it is AirSense AutoSet.

restless legs, which may or may not be related to the apnea

There is a correlation, but no causation has been found.

[cpvtnh]

So a lot of developments here. After I got my Airsense 10, I visited with my mom and pushed through the purchase of an airsense 10. It was set up with her scrip by cpapdirect.com. Her pressure is set to auto set between 9 and 20. EPR full time 3cmH2O. Her mask is a ResMed N30i. She’s not getting any mask fit issues unless she pulls it off. (By contrast, with the Luna, same mask, she was often having leaks which we could hear when walking in the room). I don’t know why that would be different than the Airsense machine.)

She finds the ResMed to be more comfortable than her Luna. She still takes the mask off all the time during the night. But at least now we have data.

Also, when I was there, I asked her why she takes the mask off, why she doesn’t like it. She says she feels like she’s suffocating. (I love my airsense 10 and never feel like I’m suffocating with it).

My sister is there with her. She sent me a screenshot of an example. It’s quite alarming. There are solid blocks of obstructive apneas while she’s wearing it, and the pressure ramps up to 20 and is floored at 20 the whole time. She also has some blocks of Cheyenne Stokes breathing. The pressure sometimes drops a little bit below 20. There are a lot of Obstructive Apneas, when she’s having them, just a whole lot, one after another. For other stretches of sleep it can be a lot better where we have data, but the pressure still stays pretty much pegged at 20.

AHI is meaningless, because over the night she will pull the mask off and let the machine run. Sometimes she smushes the mask under a pillow.

It does seem possible to me that she in fact feels like she’s suffocating, but she blames the mask when normally she would get up out of bed in response. (She does in fact get out of bed quite often).

In my opinion both her DME and normal sleep center doc are not at all aware of what’s going on with her. I don’t know if now they have access to this ResMed data. Before they only had an at home sleep study and whatever the Luna gave them.

She has an appointment in a couple of weeks with a neurologist/sleep specialist, and I guess this will get tweaked there. I’m guessing the APAP machine is not going to be what she ends up with.

[ChicagoGranny]

She sent me a screenshot of an example. It’s quite alarming. There are solid blocks of obstructive apneas while she’s wearing it, and the pressure ramps up to 20 and is floored at 20 the whole time. She also has some blocks of Cheyenne Stokes breathing. The pressure sometimes drops a little bit below 20. There are a lot of Obstructive Apneas, when she’s having them, just a whole lot, one after another. For other stretches of sleep it can be a lot better where we have data, but the pressure still stays pretty much pegged at 20.

Can you post a screenshot in the standard format? -----> https://www.apneaboard.com/wiki/index.p ... ganization

Please stick with this one thread.

[cpvtnh]

Will ask my sister to send the data with just those panels. Thanks

[Julie]

Are you aware that EPR at 3 can lower the effect of min. pressure by up to 3 pts? That might have something to do with her not seeming to improve even tho' she raised the min.

[cpvtnh]

Trying to guess her doctor’s thinking, they set EPR to maximum because her main complaints were that “it’s hard to breathe with the mask” and “I feel like I’m suffocating.” Her compliance is minimal, so I guess they were trying to make it easier for her to breathe, or at least exhale?. The sleep docs have very little idea, I’m sure, what’s really going on for her. They still consider her sleep apnea to be “mild,” they tell my sister at appointments.

Meanwhile I showed the Oscar data screenshot to a physician I know, not a sleep doc, and she said, “No wonder she feels like she’s suffocating. She is.”

In her area it’s very hard to get an appt at this sleep center. It took several months to get the study, and any follow up is hard. Too busy there.

[ChicagoGranny]

They still consider her sleep apnea to be “mild,” they tell my sister at appointments.

If they were afflicted with an identical condition, would they still consider it mild?

[ozij]

Please find a way to post OSCAR reports, or to upload to SleepHQ.

Thing you have watch out for:
What drives up the pressure?
Is the EPR full time?
At which pressure do the apneas start?
CPAP can not blow through collapsed airways, but a correct minimum pressure can prevent obstruction.
Why is she starting at 9?
What do you mean by " She’s not getting any mask fit issues unless she pulls it off." Does OSCAR show leaks? Do they bother her?
Does the machine start and stop automatically?
What about humidity and temperature? Depending on the person, when they're too high - or too low - they cause nasal congestion.

If you sister copies the full SD card data to a dedicated folder she shares with you you can then use OSCAR to read the data, and use all of OSCAR's features.

[babydinosnoreless]

Some thing I haven't seen suggested yet is having her wear it while awake to get used to it. Have her do it when she is relaxed, reading or watching tv. Once you understand how it works and are friendly with it, it gets easier to sleep with. You sister may be able to better understand at what point it feels like she is suffocating.

[cpvtnh]

In the two sets of Oscar data I saw, it showed no leaks at all. When I was there previously, before she got the Airsense, using the Luna, I’d go in there and hear it hissing like mad and leaking all around her face. I don’t know why it’s leaking less now, same mask, same as mine Resmed n30i I think.

The pressure seems to go right up to 20 or near there and stay there mostly, except for 1 of the 4 blocks of sleep I saw. The EPAP line steadily follows 3 points below it. I think in the blocks I saw with the pressure so high, the algorithm must just say, “yeah, this is serious, give it all we’ve got.”

Mom is comfortable with it in the daytime, and she’s with the program. It’s only at night that she fights. She’ll resist and say she doesn’t need it or “I’m not going to wear it.” Or “Don’t put that on me, I just fell asleep.” If she could do all her sleeping in the daytime we could get her to use the machine all the time. We call her Dr Jeckyl and Mr Hyde, where Mr Hyde is the night time character.

My sister isn’t getting to it, so I’ll post crops of the screenshots she sent me, stripping out any personal info.

She has another appointment with a neurologist who is also a sleep doc, next week, so that will be a shift. I think her current sleep center is not very attuned to her situation at all. There was just the one at home sleep test, where mom probably slept for 3 sessions of about an hour during the night, if she was doing her typical pattern for around that time, or most nights. And then the sleep center only had the data from the Luna, which my sister had the sense from appointments was not granular at all, the data reported to the sleep center by the Luna.

[cpvtnh]

Can’t upload it. I get a message “Error: failed to move uploaded file” when I try to upload it as an attachment.