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UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
#51
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
mper, 32 years ago I was told I have central sleep apnea. until now I had no reason to doubt it. still hanging on the fence but you've certainly made me start to wonder if only because I feel better on vauto than asv. in the last month or so of asv I began to realize ps was swinging widely, rapidly & ineffectively against plm induced fl's. by their absence, vauto demonstrated to me just how beat up those ps swings had made me feel. I'm going to keep using vauto but I'm really curious to see if I can accomplish similar with asv by severely restricting ipap max while also evening out non-plm periodic breathing. of course that assumes some pb is not plm related which remains an open question.

btw, I raised trigger from med to high, then to very high, resulting in very positive reductions in ca. thought it might also have reduced respiration & maybe tidal volume, which have been higher lately, l but it's too soon to see a trend yet.

it's good that you're shining a light on the need to better understand uars, fl, rera, plm & how to best treat them.
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#52
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
Hi, folks

With the only intention to enrich discussions on this Forum, which I owe so much to, I am going to this post aiming at making some points on UARS x FAKE EVENTS (CA, OA, and FL). The data for this quick analysis come from my own therapy, one case I worked with in the Forum, and literature.

UARS is, together with PLMS, my case, both pretty much worked these days at the level of around 85%. This was enough to bring a rather good quality of life. Keep myself still struggling with the remaining 15%. Flagged FL was brought to absolute zero (p95 and max) day after day, with just minor exceptions. What still bothers me are respiratory-driven arousal/awakenings, and quasi-H/H mainly during REM periods.
For my luck, PLMS was almost 100% resolved by beating RERA’s (flagged and non-flagged) and with minor medications (Valerian 1060 mg, and Melatonin 3mg, beyond other supplements).

UARS is an amazingly oblivious health impairment, I am afraid, all over the world and maybe in this Forum, as well. That was the driver that led me to post this my single thread in this Forum, from which I have taken so many insights, since some 6 months ago. I am so thankful to all this. By analyzing my data daily, back and forth to waveforms and literature, it may happen I have acquired a rather good experience on UARS.

From time to time I take notes from today’s posts from fellows I would interpret as UARS-sufferers, straitforewardly. Even though I might be wrong, only in the last 2/3 months I could count 38 cases, out of which only some 18% moved to BPAP, and already experienced success on their treatment. The remaining people are struggling with APAP machines (max PS of 3.0), quite often trapped between aerophagia and EPR:3.0, or facing alternative treatments for their cases, other than moving to BPAP.

Why is that?

Well, respiratory-driven arousals/awakenings (RERA’s, flagged or not), wake ups are the metric for UARS. AHI is a pretty much an useless index, in general just reflecting fake events, in particular CA’s that follow arousals/awakenings. There are plenty of literature on this post arousal CA’s, including experimentally provoked arousals (see attached).

Yet CA is the absolute dominating fake event following arousal/awakening, there also OA, H, and FL. I used to dismissing at least one ten of these events, sometimes tens of CA’s, on the daily analyses of my charts.

Fake CA’s are direct consequence of arousal/awakening-sleep transition, either provoked by respiratory effort, PLMS, or unbalanced EPAPmin x PS (see attached). CA’s also can be triggered by leaks, as discussed in previous post, above.

Therefore, in my opinion, I think what first should be tackled on UARS treatment would be be the arousal/awakenings-sleep transition (cause), not the fake CA’s (syntoms). Otherwise one may end up with an eventually compromised respiration (in particular anomalous E:I and MV), eventually misleading machine, and, ultimately, an untreated UARS.

As per literature (well-known great names) and my own case, strategies to treat UARS would be, maybe in this order: (1) adequate sleep position, not on the backs, avoiding the so-called tongue collapse, in particular during REM; (2) cervical collar, avoiding chin tucking; (3) BPAP, with properly balanced EPAPmin x PS; (4) dental appliance, and (5) surgery.

All the best


Attached Files
.pdf   UARS-Fake Events_CA's.pdf (Size: 444.27 KB / Downloads: 15)
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#53
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
I am strongly objecting to the calling of these events fake. Above mper stated

AHI is a pretty much an useless index, in general just reflecting fake events

AH I is a highly regarded statistic used throughout the sleeping community and the medical community worldwide. These events are real, all of them. A storage of breathing because you are awake and holding your breath is still a real event, it happened, it was measured, it is an event, it is not fake. We may discount it because it was not during a period we are concerned with, but it is not fake.

But to call the AHI USELESS AND FULL OF Fake events is just plain irresponsible and untrue.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
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#54
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
Hi, Fred
Nice to hear from your objection! Thank you, It Will enrich discussions.
Just to make sure you have got my point, i am refering to use AHI uselessness only in reference to UARS cases.
Never even look!

All the best
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#55
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
"But to call the AHI USELESS AND FULL OF Fake events is just plain irresponsible and untrue."

as usual the nuances get lost in brevity. it's the word 'fake' that's the problem. we all agree that ahi is not the only measure of success, especially in rera, uars cases. all I read mper as saying is that apnea events during or following certain other events like rolling over, plm, & disordered breathing that rouse us can be discounted with respect to ahi and that people can still feel awful with low ahi. me, for example. for us, we have to look deeper. those waking events can & maybe should be understood to be indicators of an underling cause, like plm in my case. to some, it makes sense to treat the underlying cause.

I've been confused about fake events for some time. now I'm convinced it's merely semantic. the term 'fake' has distracted from that which all agree, that waking events can be discounted or ignored. I don't see why that wouldn't include arousals from disordered breathing & plm just as it would include arousals from noise or during sleep wake transitions.
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#56
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
Mper, NONE of the events you call fake are fake, they are real events. I assure you that great effort was put into getting events right by the manufacturers. Your, and my, choice to ignore events does not make them fake.

And I disagree with AHI being useless as that is the starting point. You take care of the events that you see first, then you have a 'clean plate' to see if you need further treatment for Flow Limits, UARS, or whatever you care to call them. Only an idiot would not look at the AHI, and I'm sure you are not an idiot.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Optimizing Therapy
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#57
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
(12-01-2019, 12:42 PM)bonjour Wrote: Mper, NONE of the events you call fake are fake, they are real events.  I assure you that great effort was put into getting events right by the manufacturers.   Your, and my, choice to ignore events does not make them fake.  

And I disagree with AHI being useless as that is the starting point.  You take care of the events that you see first, then you have a 'clean plate' to see if you need further treatment for Flow Limits, UARS, or whatever you care to call them.  Only an idiot would not look at the AHI, and I'm sure you are not an idiot.
Well I disagree with you.

For instance, if I  breath through my mouth, the machine will flag a CA event because it has no way to tell I'm still breathing even though I am. This is not a central apnea and would be a bad idea to switch to an asv machine for this reason when all you need to fix is your mouth breathing (which can be hard). Happened to me all the time at first when I first started my therapy.

And yes holding your breath while awake can be technically called a central apnea event, but why would you try to fix this? Unless you are holding your breath for too long, your O2 level won't drop especially if you took a deep breath right before. It won't wake you up because you are already awake. So I don't get why we shoud fix these 'apneas'. It's a waste of time and it's may be detrimental to your therapy.

I would suggest people to watch some videos (don't think I can name the channel) where a sleep technician compares the results from a sleep study to what we see when we only look at the flow rate graph and to make their own mind.

Oscar is a good tool and will show that you might be experiencing central apneas but I would recommend a real sleep study before jumping to conclusions or at least to keep in mind you don't have enough data to tell without a doubt that you are experiencing significant central apneas. There is nothing dangerous keeping an open mind on the data coming from the machine since it's not as accurate as a complete sleep study.
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#58
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
alexp Wrote:For instance, if I breath through my mouth, the machine will flag a CA event because it has no way to tell I'm still breathing even though I am.

If you breathe through your mouth the machine will flag a leak. It is known that the machine can't properly diagnose apneas in the presence of large leak.

There has been far too much talk of "fake" apneas lately, and I strongly believe it has been to the detriment of some of our members. Look at the chart - if you are flatlined for 10 seconds it means you have stopped breathing. That is, by definition, an apnea. There is much talk of "fake" apneas caused by leg movements. Remember that the machine doesn't know what your legs are doing, it only knows that you have stopped breathing. Likewise the machine doesn't know when you're awake. But if you're awake, why are you holding your breath?

Treating all flagged apneas as "fake" or even a large proportion of them is, in my view, irresponsible. Unless you have actual evidence that the patient is awake (which the machine can't give you) then the prudent and sensible course is to follow the evidence in front of you.

alexp Wrote:I would suggest people to watch some videos (don't think I can name the channel) where a sleep technician compares the results from a sleep study to what we see when we only look at the flow rate graph and to make their own mind.

Yes, you can name the channel and provide a link. Please do.

Quote:Oscar is a good tool and will show that you might be experiencing central apneas but I would recommend a real sleep study before jumping to conclusions or at least to keep in mind you don't have enough data to tell without a doubt that you are experiencing significant central apneas. There is nothing dangerous keeping an open mind on the data coming from the machine since it's not as accurate as a complete sleep study.

A "real sleep study" costs thousands of dollars. It's not an option for many people. And it tells you little or nothing about treatment-emergent central apnea unless specifically set up to do so.

"...you don't have enough data to tell without a doubt that you are experiencing significant central apneas..." You don't have any evidence that you're not. Resmed and Philips aren't fools. They have hundreds of millions of dollars invested in research - I think they would have noticed by now if machines are consistently / frequently giving incorrect flags. I don't believe we should be in the business of second-guessing the manufacturers who have infinitely more data available to them than any of us do.

":...There is nothing dangerous keeping an open mind on the data coming from the machine since it's not as accurate as a complete sleep study..."
What I've seen is a lack of open mind. People going around telling other people that the dozens of central apneas they experience are "fake". If people want to believe that, that's their problem. But I believe we should sound the warning that what's being said is outside the general run of medical opinion. That might change over time, but we have a responsibility to say that there is nothing proven in all this talk of fake events, and the rather strange mathematical contortions which some people indulge in.
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#59
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
(12-01-2019, 11:15 PM)DeepBreathing Wrote:
alexp Wrote:For instance, if I  breath through my mouth, the machine will flag a CA event because it has no way to tell I'm still breathing even though I am.

If you breathe through your mouth the machine will flag a leak. It is known that the machine can't properly diagnose apneas in the presence of  large leak.

Well most of the times yes.

But if the leak is really short like if you are only inhaling through your mouth and closing it (like puffing), it won't always be reported as a large leak and you will have a central apnea event flagged. I'm talking from experience after filming myself many times. I have a dream station so it may not work the same on a Resmed.

DeepBreathing Wrote:Yes, you can name the channel and provide a link. Please do.

TheLannyLefty27 on youtube.
https://www.youtube.com/watch?v=ZZqQ2CtPmgY
https://www.youtube.com/watch?v=gR6o5XT3O6I

Quote:A "real sleep study" costs thousands of dollars. It's not an option for many people. And it tells you little or nothing about treatment-emergent central apnea unless specifically set up to do so.

In the US, yes it's true and it's unfortunate. But you still have to realize you are self diagnosing yourself with partial data and you may be wrong. Nothing wrong with that but I think you should know you are making an educated guess and know when you should try to have a study done.

Quote:Resmed and Philips aren't fools. They have hundreds of millions of dollars invested in research - I think they would have noticed by now if machines are consistently / frequently giving incorrect flags. I don't believe we should be in the business of second-guessing the manufacturers who have infinitely more data available to them than any of us do.

Most doctors won't diagnose central apnea just by looking at your CPAP datas. The device just don't provide enough data. It's not second guessing them. It just that the machine can't tell if you are awake or not. That's might be the reason why they call it a clear airways event and not a central apnea.

Quote:":...There is nothing dangerous keeping an open mind on the data coming from the machine since it's not as accurate as a complete sleep study..."
What I've seen is a lack of open mind. People going around telling other people that the dozens of central apneas they experience are "fake". If people want to believe that, that's their problem. But I believe we should sound the warning that what's being said is outside the general run of medical opinion. That might change over time, but we have a responsibility to say that there is nothing proven in all this talk of fake events, and the rather strange mathematical contortions which some people indulge in.

Well the medical community says you should not self diagnose yourself and make change to your CPAP therapy and everyone on the forum is doing it and thinking the data coming from the CPAP device is the ultimate truth. I think we should warn them to take the results with a grain of salt as well and try to have a sleep study done if they are not sure what's happening.

Same thing with the cervical collar recommended all the times on this forum. I don't think the medical community agree that's an effective treatment but it seems to be pretty effective and no one is thinking it's stupid to recommend wearing one.

Again, I'm not saying I'm right but after having a sleep study done, I believe the machines are not accurate when it comes to diagnosing RERA and CA. I believe people should not make drastic changes to their therapy just because they see some CA event in Oscar (or think everything is ok because they don't have any RERA flagged). The machine has only one signal to figure out what's happening. Sometimes it's just not enough.

I think the apnea and hypopnea flagging is pretty accurate though. Never seen anyone questioning these numbers.
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#60
RE: UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"
Hi, Sheepless, alexp, bonjour, DeepBreathing

Many thanks for the contributions. They were great! I am afraid it is going to take me sometime to digest everything and properly return

Meanwhile, I am going to keep myself put an effort on how to call those events of stopping respiration after awakenings, moves, groaning/moaning, during leakings and imediate transition to sleep (I am use to audio-recording these many times), extremely dry mouth, and son.

Main issue here, as some of you properly  point out, is that those events could eventually mislead approaches for therapy directions and machines.

all the best
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