Seeking Advice Adjusting to CPAP (unique anatomical considerations)

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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ChicagoGranny
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by ChicagoGranny » Sat Jul 29, 2023 5:30 am

Zana wrote:
Fri Jul 28, 2023 7:40 pm
It shoots up to 12-13cm from 8cm when the EPR is on and shoots down do ~ 6ish on exhale.
Zana wrote:
Fri Jul 28, 2023 7:40 pm
This morning I had 6 of these episodes (CAI) out of AHI 7 while trying to fall asleep
Zana wrote:
Fri Jul 28, 2023 8:35 pm
Even though my body tells the machine I need 8cm, when I go to inhale the pressure of the machine skyrockets to 12.5cm or higher in an instant, and then falls to about 4cm on exhale.
Without software, how do you know these things? With my ResMed machine, I would not know this except for OSCAR.

Zana
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by Zana » Sat Aug 26, 2023 2:28 pm

ChicagoGranny wrote:
Sat Jul 29, 2023 5:30 am
Zana wrote:
Fri Jul 28, 2023 7:40 pm
It shoots up to 12-13cm from 8cm when the EPR is on and shoots down do ~ 6ish on exhale.
Zana wrote:
Fri Jul 28, 2023 7:40 pm
This morning I had 6 of these episodes (CAI) out of AHI 7 while trying to fall asleep
Zana wrote:
Fri Jul 28, 2023 8:35 pm
Even though my body tells the machine I need 8cm, when I go to inhale the pressure of the machine skyrockets to 12.5cm or higher in an instant, and then falls to about 4cm on exhale.
Without software, how do you know these things? With my ResMed machine, I would not know this except for OSCAR.
The Luna G3 shows the pressure rate and flow in real time. So for the pressure increases during the epr, you can simply watch or record the machines monitor as you breath to show the shifts in pressure in an instant.

For the center apneas, the machine registers central apneas separately from OSA's without the Oscar software, also displayed on the screen. However, it is no where near as detailed as Oscar which is truly unfortunate.

Gave it a few more weeks and the problems with presumed central apnea have continued. I've had a telehealth appt with the supply company's Resp Therapist who collects the machine data and they do indeed think I need to see a sleep physician for central apnea. They also think that I may have a faulty machine but are not certain based on the limited data the machine transmits. At this point they suggested that rather than get a new one right away, I continue with the sleep physician asap so that if I need a more advanced machine, they can put the script in and get me a Bilevel or ASV that better address central apnea (lord I hope my insurance helps pay for it, phew). If I do have truly diagnosed central apnea, lets hope it's related to the initiation of the therapy itself because if it is not, I may have more severe neurological problems. One way or another, my miserable sleep saga continues.

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Bluper
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by Bluper » Sat Aug 26, 2023 6:19 pm

Your not the only one with this problem. I've been staying quiet because the others have been here longer and usually come up with an answer. I too have my cheeks blow outward no matter what type of mask I wear. (Even all my full face mask.) I never get a good night sleep. I've tried all the suggestions. Only one thing has worked for me and it's not pretty or comfortable but I can get a little sleep. I tape my lips than I use a chin strap thats tight enough to hold my teeth together. I place my mask of the night over all this. I have almost every mask made and they all work only if I do as I said. I've discovered that my tongue likes to rest in the bottom of my mouth instead of the roof of my mouth. All the tongue exercises and devices haven't changed this. When I relax into sleep, my tongue falls down, my cheeks puff up, I wake up. Over and over, all night long. If you can't breath through your nose, this won't work. If your have your surgery and your cheeks still puff, this will fix it. Your not alone, my friend. The struggle is real but necessary.

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ozij
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by ozij » Sat Aug 26, 2023 8:21 pm

Zana wrote:
Sat Aug 26, 2023 2:28 pm
Zana wrote:
Fri Jul 28, 2023 8:35 pm
Even though my body tells the machine I need 8cm, when I go to inhale the pressure of the machine skyrockets to 12.5cm or higher in an instant, and then falls to about 4cm on exhale.
Gave it a few more weeks and the problems with presumed central apnea have continued. I've had a telehealth appt with the supply company's Resp Therapist who collects the machine data and they do indeed think I need to see a sleep physician for central apnea. They also think that I may have a faulty machine but are not certain based on the limited data the machine transmits.
There is such a thing as "treatment emergent central apnea" which is central apnea caused by the fact that for some people, PAP therapy can destabilizes the breathing drive, by causing more blowoff of CO2. If your machine is malfuctioning, there's no way of knowing why you have central apneas, They may be a direct consequence of the malfunctioning machine which is causing you to hypeventilate. "They also think that I may have a faulty machine but are not certain based on the limited data the machine transmits." :shock: You mean even they admit the machine data is limited? They can't see a record of the pressure bouncing about from 12 to 4? A good reason to ditch the Luna - even if it were not faulty.
At this point they suggested that rather than get a new one right away, I continue with the sleep physician asap so that if I need a more advanced machine, they can put the script in and get me a Bilevel or ASV

Do they expect a sleep doctor to base their decision on the results from a possibly faulty device>? The very first step in troubleshooting should be a trial of another device,- either identical or one made by another company.
Or are they recommending a PSG with titration?
(lord I hope my insurance helps pay for it, phew). If I do have truly diagnosed central apnea, lets hope it's related to the initiation of the therapy itself because if it is not, I may have more severe neurological problems.
An alternative explanation is that a faulty machine is hyperventilating you.

The biggest contribution of OSCAR in a machine with full data capability is that this combination lets you track your therapy breath by breath and given your unique situation, this is even more critical in your case.

ResMed's Automatic PAP therapy machines have the detailed information you need to keep track the effects of your therapy - they can be set to fixed pressure if necessary, and will show you the data you need

Very important point by Miss Emerita:
Miss Emerita wrote:
Tue Jul 25, 2023 2:47 pm
I wouldn't be surprised if your nose structure causes flow limitations, so that may be what the machine is responding to.
Automatic algorithms attempt to analyze a person's breathing pattern and respond to the events they identify based on that analysis. They vary, in analysis, interpretation and response from company to company. They are far from perfect though some are better than others.

If you do get a ResMed Autoset for trial, I would start the trial at a fixed pressure - probably of 8 or less based on what you say - and without EPR. You need it first and foremost for the data.

I'm a bit surprised that your sleep doctor, presumably knowing your unique state, did not send you for a PSG immediately, and chose to titrate you with an automatic machine. Maybe the doctor doesn't know the limitations of automatic algorithms.

Take a look at the following video:
https://youtu.be/xj6ty4CmP50?t=88

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Zana
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by Zana » Thu Sep 14, 2023 4:44 pm

ozij wrote:
Sat Aug 26, 2023 8:21 pm

If you do get a ResMed Autoset for trial, I would start the trial at a fixed pressure - probably of 8 or less based on what you say - and without EPR. You need it first and foremost for the data.

I'm a bit surprised that your sleep doctor, presumably knowing your unique state, did not send you for a PSG immediately, and chose to titrate you with an automatic machine. Maybe the doctor doesn't know the limitations of automatic algorithms.

Take a look at the following video:
https://youtu.be/xj6ty4CmP50?t=88
Hey Ozij,

I'll explain a bit regarding the circumstances that I've encountered, as "treatment emergent" seems to be the most likely candidate. If the centrals are related to a more complex issue, then crap that'll really suck at my age. One of the things that pisses me off the most about this whole situation is the insurance/physician network slowing everything WAY down. Firstly..... we don't have a sleep doctor or lab monitored by a doctor diagnosing this problem. I don't have one currently because we don't have one in my network. I was "diagnosed" by a home study which obviously is not sufficient to cover the bases especially without EEG and my destroyed nose being a factor. If that sounds absolute nuts, that's because it is! Since my last response, I've been going around pulling everyone's teeth to get me sent to an actual sleep medicine physician. They are finally referring me out of network to get this done, as if not breathing properly during sleep is a minor issue... I'm VERY IRRITATED indeed.

Now, as for the machine... That is precisely what I've been working on since my last message. I am sending the Luna back and was able to get a new machine that arrived last night. It is a Resmed Airsense 11 and I am going to get an overnight saturation monitor with recording so I can be armed with the details when I see this sleep physician. Now that I have a device compatible with OSCAR, I can finally have a solid source of information! I'll have to get it booted up as soon as I get the chance.

From the details I "currently" know from the old machine and the basic report from my initial night in the Airsense 11, I have clustered central apneas prior to falling asleep. I'll usually have more than 10 per hour until I finally fall asleep (usually takes me several hours to do so) and they are sometimes entirely composed of CAI, occasionally without a single obstruction noted. It is extremely uncomfortable as I can literally feel my oxygen tank in real time. When I do fall asleep (after being awake for hours) the machine seems to think I have almost no apnea at all. My average pressure was 7cm last night and "95" was only 8.

However, as everyone has recommended, I'll have a much better source of info once I get OSCAR booted up. I am eager to see what it says.

So yeah... I'm going to get OSCAR up and running and hope they can get me in as soon as humanly possible into a lab and physician that knows what they're talking about. This has been one 3 1/2 month long nightmare that I'm desperate to be over

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ozij
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by ozij » Thu Sep 14, 2023 10:02 pm

You've been doing everything you can to get yourself out of this nightmare and into rational therapy - kudos.

We will no doubt learn a lot from you OSCAR data!

I'm glad you've come back with that detailed update, and am very curious to see your OSCAR upload.

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And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery

Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023

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ChicagoGranny
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by ChicagoGranny » Fri Sep 15, 2023 11:50 am

Zana wrote:
Thu Sep 14, 2023 4:44 pm
I am going to get an overnight saturation monitor with recording
It's not entirely required, but you might want to get one that is compatible with OSCAR - https://www.apneaboard.com/wiki/index.p ... _Oximeters

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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by Zzz_Jim » Sat Sep 23, 2023 2:27 am

BUMP! How's it going Zana?

Gotten OSCAR to work yet? Post some graphs!

ozij wrote:
Sat Aug 26, 2023 8:21 pm
Take a look at the following video:
https://youtu.be/xj6ty4CmP50?t=88
The author of that video also has a web site company (link in the video description) where you can pay him for a session evaluating your OSCAR data. If you aren't getting anywhere via your connections so far you might consider paying him for an analysis. YMMV and all those disclaimers... (He's somehow affiliated with a competitor to the sponsor of this site, so I hope this mention is OK.)

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ChicagoGranny
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by ChicagoGranny » Sat Sep 23, 2023 5:23 am

Zzz_Jim wrote:
Sat Sep 23, 2023 2:27 am
you can pay him for a session evaluating your OSCAR data.
Why pay when you can get nearly unlimited sessions here from a group of heavily experienced users?

The power of the crowd

Zzz_Jim
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Re: Seeking Advice Adjusting to CPAP (unique anatomical considerations)

Post by Zzz_Jim » Sun Sep 24, 2023 2:33 am

ChicagoGranny wrote:
Sat Sep 23, 2023 5:23 am
Zzz_Jim wrote:
Sat Sep 23, 2023 2:27 am
you can pay him for a session evaluating your OSCAR data.
Why pay when you can get nearly unlimited sessions here from a group of heavily experienced users?

The power of the crowd

Of course he should try here first! What was I thinking?!!?