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Duderino
  Unread post  Post subject: Wondering how to proceed  |  Posted: Sun Oct 18, 2020 4:04 pm

Joined: Sun Oct 18, 2020 3:35 pm
Posts: 6

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Hello everyone!

I was diagnosed years ago. I'm thin and young, but my doctor says I have a 'physical triple blockage' by my tongue, palate, and throat when I sleep. So he said surgery is no option, as we could maybe fix one thing, but the rest would still exist.

I've tried a fixed 4.0 for many months, which made me feel better than no PAP at all, and I thought that was it. But I kept hearing about other PAP users feeling much, much better when using it. My AHI floated between 2.5 and 3.8, while my three sleeptests (over the years) showed 12-15.
Then I bumped into LL's videos! Thank you LL!
I downloaded OSCAR and over the last 2 months have been checking it weekly. I see quick peaks, then slowly valleys.
I tried APAP 4-15 to see where I would land. Saw my pressure usually didn't go higher than 9, usually floated down to 5.5.
I then tried APAP 6-15. But now I suddenly see spikes to 10 and 11, which seems weird. More pressure should hopefully mean less blockage, so less higher pressure needed, right? That has me confused.

It looks like my airway is not getting unblocked by PAP, but instead I just... stop breathing and I breathe again regardless of PAP? Maybe PAP is not my problem but something else is?

Of course the biggest offender that is always called out on these forums, the leak rate, seems fine! But feel free to let me know if it is actually bad!


Some more other info, in case it helps:
Every night I have a bunch of clear airways, for 20+ seconds
I have a full face at the moment, but am going to try a nasal.
I am video recording my sleep now as well, and am noticing I am moving my head back & forth a lot when lying on my back. Still trying out tennisballs and other things to force me to sleep sideways only, but it's not working well so far.
This is all with an Airsense 10 Autoset.
I'm also using apps to measure movement in my sleep, and it turns out I get very little deep sleep each night. 20-40 min as opposed to a normal 2 hours. Though that is of course not medical equipment.

So yeah, I'm just trying, really anything, to see if I can feel more energized throughout the day. Find out what the issues are and solve them. If I don't use PAP I feel way fuzzier the next day, so it does do something, but not enough for me to be symptom free.

My idea now is to heighten my minimums a bit more, and see if I can sleep through that comfortably. If anyone has ideas or thoughts, I'd love to hear them :)


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File comment: The leaks seem fine. My mask is tight to my face!
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File comment: Lots of long valleys
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File comment: My breathing does seem to flip-flop a lot
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File comment: Peaks, valleys, but low leak rates
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LSAT
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Sun Oct 18, 2020 5:19 pm

Joined: Tue Sep 05, 2017 9:40 am
Posts: 657
Location: WI
PAP Mask: F & P Simplus
PAP Machine: Airsense 10 Autoset
Pressure Setting: 12-20

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Don't worry about the spikes. The machine is doing what it should. It's chasing apnea events. I would set your machine at 6/20 and leave it alone for a week. See what your average looks like. If it only spikes to 10-12. it doesn't matter how high your max setting is.


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Pugsy
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Sun Oct 18, 2020 5:21 pm
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Impossible to offer anything with just snippets of reports.
You didn't even include any AHI breakdown.

BUT...if the majority of your AHI is clear airway/central apneas...more minimum pressure isn't the way to go and in fact might make it worse.

_________________
I may have to rise but I refuse to shine.


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Duderino
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Sun Oct 18, 2020 5:29 pm

Joined: Sun Oct 18, 2020 3:35 pm
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LSAT wrote:
Don't worry about the spikes. The machine is doing what it should. It's chasing apnea events. I would set your machine at 6/20 and leave it alone for a week. See what your average looks like. If it only spikes to 10-12. it doesn't matter how high your max setting is.


Yeah, so I've had it on 6-15 for 2.5 weeks now, and my AHI is still between 3-5 a night, and I still feel not great. Those are the images linked in the post

LSAT wrote:
Impossible to offer anything with just snippets of reports.
You didn't even include any AHI breakdown.

BUT...if the majority of your AHI is clear airway/central apneas...more minimum pressure isn't the way to go and in fact might make it worse.


Great! Ok, so maybe higher minimums are not the thing to go for then. What would be?

And sorry, I thought these graphs as-is would be useful to see! Are these AHI graphs what you mean?


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Pugsy
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Sun Oct 18, 2020 7:55 pm
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No those aren't the graphs I meant. They don't give event category breakdown do they?

Use this as your guide.

Compare what you show and what this shows
Image

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Duderino
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Sun Oct 18, 2020 9:36 pm

Joined: Sun Oct 18, 2020 3:35 pm
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Pugsy wrote:
No those aren't the graphs I meant. They don't give event category breakdown do they?

Use this as your guide.

Compare what you show and what this shows


Thank you so much Pugsy! I really appreciate it

So this is what you mean?


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Pugsy
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Mon Oct 19, 2020 5:07 am
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Yes, thank you. Better overall picture.

Your maximum pressure no need to mess with it really. The machine never goes anywhere near it so it doesn't really matter what it is because unless you hit it there is no effect from it. Having the ability to go higher doesn't change the way the machine responds.

The bulk of your AHI is central apneas or on this software they are called Clear Airway apneas. The airway is open but no air is moving. Hold your breath for 10 seconds. That's essentially a 10 second central apnea. Nothing blocking the airway but no air is moving.
More pressure won't fix central apneas. Pressure is used to just stent the airway open and prevent collapse of the airway soft tissues.

Also when an obstructive apnea or hyponea is actually happening the machine doesn't do anything. It sits back and twiddles its little thumbs until the airway opens back up and then it evaluates what just happened or might be happening in terms of airway patency or snores or flow limitations and then decides if it needs to increase the pressure.
It will NOT blow open the airway tissues during an obstructive event and it simply doesn't respond to central apneas in any fashion ever. More pressure isn't ever the fix for central apneas.

So I see no need to change your settings at this time but I do think that given the fact you don't feel like your unwanted symptoms are resolved well enough that the central flags need to be investigated a bit to see if you were for sure asleep when they got flagged as your first bit of detective work that needs to be done.
Go here and watch all the vidoes with special attention the bottom video.
http://freecpapadvice.com/sleepyhead-free-software

You need to figure out if you were asleep or awake/semi awake/arousal when those centrals were flagged.

Now bear in mind that a few central apneas that are real asleep centrals isn't a huge problem and in fact it's entirely normal to have a few of them.

Often though when we have more centrals they are false positive centrals...awake/arousal related and they really don't mean anything except that maybe our sleep quality itself needs improvement. So they are more of a symptom of poor sleep quality than the cause of poor sleep quality. Sometimes we have to dig deeper to figure out what might be causing the poor sleep itself. There is a mile long list of potential culprits in that regard.

First thing I always ask when people are having decent reports and not feeling as good as they would like.

How is the sleep quality? Waking often or sleeping soundly?
And the medication question because often medication side effects are the cause of either poor sleep quality or just feeling crappy during the day even with good sleep quality.
What medications (even OTC) are you taking? And I need names not just
"I take a blood pressure pill". Different BP meds can cause different side effects.
And I always want to know exact symptoms that person is experiencing that they wished they weren't experiencing. Is it fatigue or energy problems or is it wanting to take a nap during the day kind of thing.
Fatigue and excessive sleepiness aren't the same thing. Now they can run hand in hand but they aren't the same problem.

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DeltaBravo3.8
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Mon Oct 19, 2020 1:23 pm
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Joined: Sat Jul 04, 2020 8:38 am
Posts: 459
Location: Waynesboro, Pennsylvania, USA
PAP Mask: F&P Vitera & Simplus, ResMed F20 N/P30i & old Amara View
PAP Machine: RT says I need NIV ResMed Astral 150 soon
Humidifier: not now
Pressure Setting: wait for NIV

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A few questions to get therapy going in the right direction. Have you had a sleep study? If yes, get your detailed copy, and copy/scan it from your printer to make a PC file, edit with photo editor to redact/black out personal info, post this multi-paged report here. Most important is the tables of info stating apnea type and count. This will clue us in on the central apnea as in if these are PAP generated treatment emergent or are pre-existing. If you're in US, this sleep study is yours for asking under HIPAA.

Other possible useful info is now that we've seen full daily OSCAR, how about the Summary that gives us event data over x days. It's accessed same as the Daily you posted above, but is under Summary instead of Daily tab. It may be helpful to see what trend you've had with CA. Just thinking of various ways we can see some kind of data to assist. I have massive CA if untreated, so I know it can be just as bad for you as regular Obstructive, admitting that Pugsy is correct on a few CA getting in is not a big deal. More than just a few, then we have reason to act.

PS your Ramp on your AutoSet can increase CA as it adds to pressure swings. It's also going to block therapy for the Ramp duration. You can try turning it Off and see if CA go down. As is, you're running low pressures at 6 or so, Ramp isn't really necessary.

_________________
Dave K9DWB 73s

https://www.sleepfiles.com/OSCAR
http://www.apneaboard.com/wiki/index.php/OSCAR_Help
http://www.apneaboard.com/wiki/index.php/OSCAR_Chart_Organization


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Duderino
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Mon Oct 19, 2020 5:49 pm

Joined: Sun Oct 18, 2020 3:35 pm
Posts: 6

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Pugsy wrote:
The bulk of your AHI is central apneas or on this software they are called Clear Airway apneas. The airway is open but no air is moving. Hold your breath for 10 seconds. That's essentially a 10 second central apnea. Nothing blocking the airway but no air is moving.
More pressure won't fix central apneas. Pressure is used to just stent the airway open and prevent collapse of the airway soft tissues.

Also when an obstructive apnea or hyponea is actually happening the machine doesn't do anything. It sits back and twiddles its little thumbs until the airway opens back up and then it evaluates what just happened or might be happening in terms of airway patency or snores or flow limitations and then decides if it needs to increase the pressure.
It will NOT blow open the airway tissues during an obstructive event and it simply doesn't respond to central apneas in any fashion ever. More pressure isn't ever the fix for central apneas.

So I see no need to change your settings at this time but I do think that given the fact you don't feel like your unwanted symptoms are resolved well enough that the central flags need to be investigated a bit to see if you were for sure asleep when they got flagged as your first bit of detective work that needs to be done.
Go here and watch all the vidoes with special attention the bottom video.
http://freecpapadvice.com/sleepyhead-free-software

You need to figure out if you were asleep or awake/semi awake/arousal when those centrals were flagged.

I am not awake for any of them. 99% of the time I sleep in one long go, and do not wake up throughout the night. I do move a lot in my sleep, lots of tossing and turning.

I will take another look at the videos!

Pugsy wrote:
How is the sleep quality? Waking often or sleeping soundly?
And the medication question because often medication side effects are the cause of either poor sleep quality or just feeling crappy during the day even with good sleep quality.
What medications (even OTC) are you taking? And I need names not just
"I take a blood pressure pill". Different BP meds can cause different side effects.
And I always want to know exact symptoms that person is experiencing that they wished they weren't experiencing. Is it fatigue or energy problems or is it wanting to take a nap during the day kind of thing.
Fatigue and excessive sleepiness aren't the same thing. Now they can run hand in hand but they aren't the same problem.

Sleep quality as in waking? I very rarely wake. 99% of the time sleep in one go. I do always wake up tired.
I use no meds, not even OTC.
Main symptoms I'd like to get rid of are fatigue, lack of energy, and general 'foggyness'. The usual things you see on questionnaires about suddenly falling asleep in the middle of the day do not apply to me.
What do you mean exactly with the difference between fatigue and sleepiness? Do you mean sleepiness as in wanting to fall asleep throughout the day, and fatigue as a lack of energy?

DeltaBravo3.8 wrote:
A few questions to get therapy going in the right direction. Have you had a sleep study? If yes, get your detailed copy, and copy/scan it from your printer to make a PC file, edit with photo editor to redact/black out personal info, post this multi-paged report here. Most important is the tables of info stating apnea type and count. This will clue us in on the central apnea as in if these are PAP generated treatment emergent or are pre-existing. If you're in US, this sleep study is yours for asking under HIPAA.

Other possible useful info is now that we've seen full daily OSCAR, how about the Summary that gives us event data over x days. It's accessed same as the Daily you posted above, but is under Summary instead of Daily tab. It may be helpful to see what trend you've had with CA. Just thinking of various ways we can see some kind of data to assist. I have massive CA if untreated, so I know it can be just as bad for you as regular Obstructive, admitting that Pugsy is correct on a few CA getting in is not a big deal. More than just a few, then we have reason to act.

PS your Ramp on your AutoSet can increase CA as it adds to pressure swings. It's also going to block therapy for the Ramp duration. You can try turning it Off and see if CA go down. As is, you're running low pressures at 6 or so, Ramp isn't really necessary.

Thanks! I'll see if I can get that study report.

I took a look at the summary and... it looks like me changing my settings does not have any effect at all! Possible even a negative effect? Pugsy is totally right in that a higher minimum isn't helping. It's just making the machine push harder, but it's not like it's opening me up, so it doesn't help.

This is super interesting! I am learning so much already, thank you!


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Pugsy
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Mon Oct 19, 2020 7:35 pm
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I can be totally exhausted but not necessarily sleepy and sometimes not be able to sleep.
So fatigue and being sleepy and wanting to nap are actually 2 different symptoms.
But of course that doesn't mean people can't have both at the same time.

Watch the videos. Those centrals could still be arousal related.
We don't always remember every time we might wake up.
Like it's normal to wake after REM stage sleep and we might have 3 to 5 REM cycles during a night depending on how long we sleep.
Normally we aren't awake long enough to remember it but we still have a brief arousal.

Shouldn't be the cause of your unwanted symptoms though.

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DeltaBravo3.8
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Tue Oct 20, 2020 8:16 am
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Location: Waynesboro, Pennsylvania, USA
PAP Mask: F&P Vitera & Simplus, ResMed F20 N/P30i & old Amara View
PAP Machine: RT says I need NIV ResMed Astral 150 soon
Humidifier: not now
Pressure Setting: wait for NIV

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Given the info I've seen, there's a few mixed and CA events, but most are obstructive. I'd be inclined to go with some to most of the mixed/central to be treatment emergent or via position changes. Watch the CA number, it will vary up and down probably nightly. That's just how the CA are. I'd rather focus on the obstructive. These are probably more disruptive to sleeping and resting. I'd not change things up right now, let's give it another night to see what charts look like.

_________________
Dave K9DWB 73s

https://www.sleepfiles.com/OSCAR
http://www.apneaboard.com/wiki/index.php/OSCAR_Help
http://www.apneaboard.com/wiki/index.php/OSCAR_Chart_Organization


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Duderino
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Tue Oct 20, 2020 9:39 pm

Joined: Sun Oct 18, 2020 3:35 pm
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So I got my report, and looked at it a bit with the help of DeltaBravo3.8, thanks!

From what I can see in there, most of my apnea's are in non-REM, and very surprisingly to me: I have less apneas when lying on my back (Supine)! I thought that would have been the worst position, due to gravity, and the throat closing, but it ends up being the best spot for me?

And indeed my highest numbers are in Obstructive and Hypopnea.

So the question then (and please correct me if I am wrong!) is whether my main problem is Centrals or Obstructives?

Pugsy's point is also good in that I guess maybe I do not get conscious from my problems, but I do get subconsciously awoken?

Not sure what to do next though. Or rather: What to try next


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Pugsy
Unread post  Post subject: Re: Wondering how to proceed  |  Posted: Wed Oct 21, 2020 4:48 am
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Yep, weird that you are worse on your side and only on one side.
But it is what it is.

Couple things to try and see if either helps or not.
Turn off EPR and increase EPR to 3.

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