General UARS Discussion

I have started 1 poll & discussed another that I feel are related to this topic of UARS

The thread is
viewtopic/t40065/UARS-related-poll--How ... wake-.html

I am very interested to see some numbers on just how many times a night people 'think' the wake or stir vs believe they sleep right through to get up time.

I have also suggested a 2nd Poll I plan to run related to how long people felt xPAP worked before feeling the benefits went away, I suspect that many such failures will not be around cpaptalk anymore, but that poll may be helpful if that happened to members here but they found ways to sort the situation out (I put myself in that later category).

DSM

dsm wrote:I have asked him if he is willing to chime in here on this thread & I hope he does.

Well that would be very nice if he would. Here's what I honestly think he repeatedly said as his main UARS and FL points:

1) Flow limitations (FL) are essentially the same as UARS (a novel view by my vote)

2) All FL should be targeted for elimination---not just the ones accompanied by RERA's and/or PES criteria (again a novel view)

3) The above two points are practical and necessary because current UARS/FL best practices do not adequately address symptomology that is associated with residual FL (again a novel view)

4) UARS and apneas are not mutually exclusive etiologies (not novel, but seems to differ from Guilleminault's opposite view that UARS may be based in hyper-reactivity while apnea may be the result of airway hypo-reactivity)

All four of those extremely key points that Dr. Krakow repeatedly made really do extend the current UARS paradigm envelope significantly in my opinion. Maybe he'll come in to clarify. But in the meantime does anyone contend the above fours points were not repeatedly made by Dr. Krakow? And does anyone contend that the paradigm expressed by the above four points are already embraced by the status-quo UARS paradigm?

No, I really truly don't think Dr. Krakow's expressed UARS views are status-quo UARS views. I honestly think he's pushing the UARS envelope a bit with theory. I think that's what researchers do.

SWS
I hope Dr Krakow does step in and add his current thoughts on those topics - I am not inclined to pre-empt him myself - 18 months is a long time in the world of xPAP therapy

DSM

Yeah, I do too, Doug. I put my in-a-nutshell summary of what I think are his repeated key UARS/FL points in the post above---hoping that if he's pressed for time that might make his response easier.

riverdreamer wrote: [The second] study showed an AHI of 6.2, . . . even with a diagnosis of mild sleep apnea, they said I didn’t need any treatment

I wonder if it is common to be told one doesn't need treatment with those numbers.

riverdreamer wrote: . . . they titrated me up to 7 . . . I only spent 3 minutes in REM at that pressure, but they ran out of time, so considered me titrated. . . .

I wonder if that kind of titration is common.

riverdreamer wrote: . . . I woke in the morning . . . my mind was clear. NOT USUAL!!! I was hooked. . . .

I wonder if that feeling should be factored in as part of the diagnosis process.

riverdreamer wrote:. . . I am wondering if I might need a different machine to effectively handle this, or do I just need to keep experimenting with my pressure? I understand the whole A-10 thing with Resmed. It doesn't seem to be impacting me, as so far my pressure isn't getting over 10 very often. I was wondering more about the Bi-pap, and if that really is better for these issues. Mostly my pressure is not changing a lot, and I am not aware of it bothering me when it does.

Nothing wrong with that machine or the A-10 algorithm. And the extra sensitivity of ResMeds in scoring flow limitations may be particularly useful to you in self-titrating.

riverdreamer wrote: . . .I am seeing big improvements. No more repeated awakenings in the night, where I might be awake for as long as an hour. No multiple trips to the bathroom during the night. No repeated dozing off in the afternoon, and no more fear of doing so in the car. The headaches are much reduced. My brain is beginning to think again. My body is still tired, but I do have other illnesses, and I don’t know if or when that might change. I haven’t had the pulmonary artery pressure re-measured. It does seem like there is a lot of improvement, and I am comfortable with my machine, I just want to be sure I get as much improvement as possible.

Those statements make your post particularly valuable in this thread, in my opinion. Thanks for sharing all that, riverdreamer. I hope we get more UARS-related stories.

rested gal wrote:

OutaSync wrote:If UARS is so deadly, why aren't more sleep centers testing for it?

Probably because of the gag reflex.

My sleep doc said: "Either we can put a sensor up your nose and down your throat and really test you for UARS, or we can put you on CPAP for a month and say if you feel better, it must have been UARS."

rested gal wrote:

WearyOne wrote:Do oxygen desats occur with UARS?

As I understand it, no. One of the hallmarks of UARS is that the arousals to "breathe better" (RERA -- Respiratory Effort Related Arousal) happen before the O2 has a chance to drop very much. Kind'a as if the brain was hypersensitive to the beginning of a hypopnea before that event can stay in place long to cause enough drop in O2 and get labeled "hypopnea."

I reached desats of 89% repeatedly, but my insurance required 88% or below for it to be considered a hypopnea. Interestingly, my *waking* blood-ox saturation at the time was only about 95%. Now it's consistently 99%.

But your explanation is, indeed, exactly how I understand UARS.

-SWS wrote: Here's what I honestly think he repeatedly said as his main UARS and FL points:

1) Flow limitations (FL) are essentially the same as UARS (a novel view by my vote)

Could he have meant that sub-OSA flow limitations should be considered proof of UARS if a patient was sleepy and tired during the day but feels better once the flow limitations have been eliminated by PAP therapy? (In harmony with tillymarigold's post.)

-SWS wrote: 2) All FL should be targeted for elimination---not just the ones accompanied by RERA's and/or PES criteria (again a novel view)

Could he have meant that, in practice, a sick person who feels better after FL is eliminated is living proof that eliminating the FL was the right thing to do for that person?

-SWS wrote: 3) The above two points are practical and necessary because current UARS/FL best practices do not adequately address symptomology that is associated with residual FL (again a novel view)

Maybe he meant that he has seen people get better when he has gone beyond current protocol and he has no other name to give that besides "treating UARS," since he can't call it "treating OSA" in view of the current insurance definition for OSA.

-SWS wrote: 4) UARS and apneas are not mutually exclusive etiologies (not novel, but seems to differ from Guilleminault's opposite view that UARS may be based in hyper-reactivity while apnea may be the result of airway hypo-reactivity)

I have no trouble with either view, myself. Class them together. Class them apart. If they both respond to pressurized air, that may be his reason for lumping it all together, I don't know.

-SWS wrote: . . . does anyone contend that the paradigm expressed by the above four points are already embraced by the status-quo UARS paradigm? . . .

I don't contend. I agree completely with your exceptionally skillful way of framing those questions. But I'm not so sure there is a "status-quo UARS paradigm," especially from many practitioners' points of view. I think they look at patients and say "Well, it ain't OSA, so I guess we'd better call it 'UARS.' " I don't know if that is a good thing or a bad thing. But I get the feeling it is happening.

-SWS wrote: No, I really truly don't think Dr. Krakow's expressed UARS views are status-quo UARS views. I honestly think he's pushing the UARS envelope a bit with theory. I think that's what researchers do.

Perhaps, and I only mean perhaps, he recognizes that the envelope was created by insurance people--not researchers, not practitioners. And if there is one envelope that could sure use some pushing, the highly-restrictive OSA definition may be one of them.

Or not.

-SWS wrote: And the treatment options for UARS are essentially the same as for OSA. However, if I had UARS (unaccompanied by apnea), I think I would at least investigate some of the non-CPAP treatment alternatives, such as a dental appliance, mentioned in the article at the top of this thread. Then, Dr. Falcon, who was diagnosed and treated for UARS, eventually discovered that fixing his nasal impedance problem alone seemed to suffice as his UARS treatment:
viewtopic.php?f=1&t=36483&p=319026#p319026

I don't think either of those treatment methods are going to work for people who have moderate-to-severe apnea. But if I had UARS, I would certainly investigate those possibilities.

Why? CPAP is a heck of a lot cheaper than a dental device and a heck of a lot more comfortable if you have a strong gag reflex (according to my sleep doctor, it's also less likely to work). And there's nothing wrong with my nose at all.

Speaking of Dr. Krakow's possible view regarding flow limitations and UARS:

-SWS wrote: . . . I see his view as almost universally correlating FL with UARS. . . .

I also think he (Dr. K) sees flow limitations that way.

jnk wrote:I would not disagree with that view of his views, as I read them. If a tired/sleepy person with flow limitations improves, subjectively, with PAP therapy, I am guessing he would call that UARS.

As would most doctors who subscribe to the idea that there is such a thing as a SYNDROME called UARS (Upper Airway Resistance Syndrome), described by Dr. Guilleminault.

But here's where I think Dr. K goes too far -- in his thinking that every last flow limited breath needs to be rounded out before a person is getting optimum treatment.

I have no problem with his promoting bilevel machines as being more comfortable for most people to use...feeling more like natural breathing. I also think his work in cognitive behavior therapy to help people with sleep disorders or difficulty adapting to "cpap" is wonderful.

What I do question is Dr. Krakow's idea that if, during PSG titration, some flow limitations still appear, pressure should be raised and raised and raised until EVERY inspiratory/expiratory phase of the breath is rounded. Even if they are not causing any arousals whatsoever on the EEG channel. Even if that means going to an IPAP pressure of 20 or more. Even if all apneas, hypopneas AND RERAs (Respiratory Effort Related Arousals) disappeared long ago at a much lower pressure.

The list -SWS gave of Dr. Krakow's remarks just on this message board alone, sure lead me to believe that Dr. K does, indeed, equate flow limited breaths -- even ones that do not cause an EEG measurable arousal -- with a thing that needs to be treated. I think Dr. K actually does equate flow limitations that don't cause arousals with UARS as a syndrome, no matter how Dr. K waffled with the words "probably", "close", and "pragmatically", when answering a question -SWS asked him:

In his first post on page 1 of a topic Dr. Krakow started (BILEVEL PAP Therapy Pearls: Clearing the First Hurdle)
viewtopic.php?p=243359#p243359

Dr. Krakow wrote:
A reminder that for all practical purposes, the following three terms are interchangeable:

· UARS (upper airway resistance)
· Flow limitation
· RERAs (respiratory effort-related arousals)


On page 6 of the same topic (BILEVEL PAP Therapy Pearls: Clearing the First Hurdle)

-SWS asked: I have a question for Dr. Krakow. My question regards Dr. Krakow's repeated verbal equation between the phrase "flow limitations" and the acronym representing the syndrome referred to as UARS. Dr. Krakow, do you consciously intend to equate "flow limitations" and "UARS" as implied equivalents?

Dr. Krakow replied:
My point is that flow limitations probably do not equate to UARS but they come close, meaning that if you look hard and long for people who think they are normal sleepers, I think you will discover that many of them are not.
-- snipped --
So, pragmatically, it's generally useful to equate flow limitation with UARS, but I concur that technically, there may be patients who suffer flow limitations for other reasons for which PAP therapy may not be the answer. Although I don't know what causes this problem, I think it is important to note that some of these cases show flow limitation ending not in an EEG arousal but in a new normal breath. I suspect these FLEs are clinically relevant.

Note especially Dr. K's last sentence -- talking about flow limitations that do not cause an EEG arousal:
I suspect these FLEs are clinically relevant.

Dr. K would aggressively titrate even the most harmless (imho) flow limited breaths away in the cause of "optimum" (in his view) PAP treatment. Because he views them as "clinically relevant." I think a titration that aggressive, that results in very high pressures could easily cause many other problems...mask leak problems primarily...that could greatly interfere with getting "optimum" treatment.

If it really took rounding out every last flow limitation to say a person was getting optimum treatment, that would be one thing. I'd jump right on Dr. K's "round 'em ALL out" bandwagon. I just don't think that's the case...not when talking about flow limited breaths that do NOT cause EEG measurable arousals.

Oh and to answer your original questions, my AHI was about 4.5, RDI a hair under 10; but if I'm reading my SilverLining software right, it confirms my suspicions that I didn't really sleep enough to get an accurate picture, because SilverLining does show apneas (usually about two per night, remember this is at my prescribed pressure) which I did not show during my sleep study.

As I've said elsewhere, I also have a weird breathing thing my sleep doc said he'd never seen before, where I start breathing very fast soon after entering REM and arouse myself out of it. His hope was that treating only the UARS would be enough to get me a decent night's sleep.

I've been on APAP for not quite two years now and it has totally changed my life. Also saved my marriage, but that's another story. (Actually my husband is completely wonderful, but I don't know how much longer he could have had dealt with doing all the work because if I was at home, I was asleep ... sometimes if I wasn't at home, I was asleep wherever else I was, too.)

I'm 30 and have had symptoms since I was 11 (or at least that's the earliest I remember putting into words the thought that I was pretty sure I was way more tired than normal people are). I'm young and female and was very thin when I was a teenager and I don't snore, so it took 17 years for anyone to test me for sleep disorders. (I finally ranted to my new doctor "Why do people keep telling me to exercise to get more energy? They've been telling me that all my life and even though I try to exercise, every time I do it, I just get tireder and tireder. I think everyone's been lying to me all my life!" And she stopped dead in her tracks and said "Forget everything else we've talked about, you have a sleep disorder, your first priority is to get that under control.")

My mother has apnea, btw.

rested gal wrote: . . . But here's where I think Dr. K goes too far -- in his thinking that every last flow limited breath needs to be rounded out before a person is getting optimum treatment. . . .

I was not aware that he thought that should be standard protocol for initial titrations. If so, that makes no sense to me either. I had assumed he was referring to patients that were still having sleepiness/fatigue problems after OSA had virtually been eliminated. I was assuming he meant that some patients may be more sensitive to FL that aren't accompanied with EEG arousals, and that those patients, as particularly sensitive sleepers, might be benefited from pressures beyond what present protocol would suggest. I hope he doesn't mean all SDB patients should be titrated that way! Yikes! I burp enough as it is!!

rested gal wrote:
<snip>

What I do question is Dr. Krakow's idea that if, during PSG titration, some flow limitations still appear, pressure should be raised and raised and raised until EVERY inspiratory/expiratory phase of the breath is rounded. Even if they are not causing any arousals whatsoever on the EEG channel. Even if that means going to an IPAP pressure of 20 or more. Even if all apneas, hypopneas AND RERAs (Respiratory Effort Related Arousals) disappeared long ago at a much lower pressure.

The list -SWS gave of Dr. Krakow's remarks just on this message board alone, sure lead me to believe that Dr. K does, indeed, equate flow limited breaths -- even ones that do not cause an EEG measurable arousal -- with a thing that needs to be treated. I think Dr. K actually does equate flow limitations that don't cause arousals with UARS as a syndrome, no matter how Dr. K waffled with the words "probably", "close", and "pragmatically", when answering a question -SWS asked him:

<snip>

Rested Gal,
Re 1st para quoted - Very good point! - I have my doubts about raising pressure to the extent Dr Krakow was doing back then (and one issue which leads me to the view that SV machines may provide a better option for a number of what I believe are good reasons - at some point I want to revisit my ideas re this).

The downside of very high Ipap pressures seem to me to be pretty well known and start with managing the mask. But to give Dr Krakow his dues, he does run sleep clinics whereas I solve technical problems in software. But not withstanding those matters, I don't feel that raising ipap in such circumstances is the best approach. Remember as well that his thread goes back approx 14 months - a lifetime in cpap world.


Re 2nd para quoted.
'Waffled' is a pretty harsh & seemingly judgmental comment. He wasn't addressing a medical convention but a forum of lay people.
Dr Krakow did spell out very clearly (from what I read) that the roundness of the patients respiratory curve is the clinics best measure of therapy effectiveness. Certainly the Resmed machines (in A10), raises pressure if flattening is detected as flattening is a good indicator of increasing/looming obstruction vs slowed flow without the flattening, being a good indicator of a central event.

Cheers

DSM

tillymarigold wrote:

-SWS wrote:.... But if I had UARS, I would certainly investigate those possibilities.

Why? CPAP is a heck of a lot cheaper than a dental device and a heck of a lot more comfortable if you have a strong gag reflex (according to my sleep doctor, it's also less likely to work). And there's nothing wrong with my nose at all.

If I knew that fixing nasal impedance could satisfactorily treat UARS as Dr. Falcon mentioned above, then I would personally prefer that over CPAP if I had UARS (which I don't).

I agree that CPAP usually makes sense as the first line of treatment for UARS. However, some people have either contraindications or side effects with CPAP that may not occur with some of the other treatment methods. My episodic trigeminal neuralgia can make CPAP mask tolerance impossible at times. Nasal Aire is about the only one that doesn't aggravate the pain, but I don't manage to sleep well with that interface when there is no pain either.

Also, a few patients such as Velbor clinically respond to a dental appliance better than airway inflation. But I think Velbor mentioned a Class IV Mallampati palate, which essentially entails all hard palate and little or no soft palate. Presumably his airway impedance problem is better addressed by pulling the mandible forward than attempting to dilate the airway with air pressure.



P.S. Thanks for weighing in with your own UARS experiences and views!

jnk wrote:

rested gal wrote: . . . But here's where I think Dr. K goes too far -- in his thinking that every last flow limited breath needs to be rounded out before a person is getting optimum treatment. . . .

I was not aware that he thought that should be standard protocol for initial titrations. If so, that makes no sense to me either. I had assumed he was referring to patients that were still having sleepiness/fatigue problems after OSA had virtually been eliminated. I was assuming he meant that some patients may be more sensitive to FL that aren't accompanied with EEG arousals, and that those patients, as particularly sensitive sleepers, might be benefited from pressures beyond what present protocol would suggest. I hope he doesn't mean all SDB patients should be titrated that way! Yikes! I burp enough as it is!!

Burp therapy as a novel treatment method....

But Dr. Krakow very clearly cast his vote (as he termed it) for what he called a "zero tolerance" policy regarding FL. But he never said anything about limiting that zero-tolerance FL policy to just the sleepy few. So I still think he maintains a highly unique UARS/FL policy. And that's not to say that it's wrong.

jnk wrote:But I'm not so sure there is a "status-quo UARS paradigm," especially from many practitioners' points of view. I think they look at patients and say "Well, it ain't OSA, so I guess we'd better call it 'UARS.' "

I think that status-quo view of UARS diagnostic criteria may be represented in the likes of DSM-IV and ICSD---and they require more than flow limitation as sole criterion for UARS recognition. But I also think what you mentioned in that second sentence is what all-too-often must happen for practicality's sake. I suspect that is in part why Dr. Krakow may be trying to push the UARS recognition and treatment envelope: the status quo for UARS diagnosis and treatment apparently doesn't work very well.