General UARS Discussion

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
-SWS
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General UARS Discussion

Post by -SWS » Mon Mar 16, 2009 11:46 am

We currently have some pretty neat side discussions going about Upper Airway Resistance Syndrome (UARS). I thought it might be worthwhile to dedicate a thread as kind of a round-table discussion to the interesting topic of UARS. If anyone has UARS thoughts, discussions, reference links, or even excerpts from other threads, please feel free to include them here.

Here's one interesting article co-authored by Dr. Christian Guilleminault, a world-renowned and pioneering researcher who coined the term UARS:
http://www.medscape.com/viewarticle/494651
(HIGHLY RECOMMENDED READING)

With that said, the mainstream medical community does not necessarily agree that a separate and unique health condition designated by the term UARS even exists.




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In this current thread, OutaSync cites this excerpt describing just how difficult the gold standard of UARS diagnosis can be to administer:
OutaSync wrote:In chapter four of the book, "Deadly Sleep", by Dr. Mack Jones, he says,

Upper Airway Resistance Syndrome (UARS)
I had been to a sleep seminar in St. Petersburg, FL where Dr. Christian Guilleminault, a highly respected sleep disorders expert from Stanford University, discussed his concept of a narrowed airway in which one inhales with extra effort (like trying to inhale through a straw) creating a much greater negative pressure in the chest than usual, (like minus ten to minus thirty cm H2O pressure or greater, when normal is minus five cm H2O pressure).

This, in turn results in a dramatic change in the flow of blood into and out of the heart, so much so, that in some cases the walls of the heart actually collapse. This can potentially cause sudden cardiac death. Dr. Guilleminault showed examples of this with echocardiograms in sleeping patients with UARS. The point was made that the "gold standard" for detecting UARS is an esophageal pressure monitor (Pes monitor). The pressure monitor is attached to the end of a small catheter, passed through the back of the nose and swallowed, positioned about half-way down the esophagus. It lies in the mid-esophagus during the PSG and measures the negative pressures in the chest as one inhales during the night.

Most sleep techs are not trained to insert these. Patients protest because it is uncomfortable and techs don't like to get their patients upset with them even before test begins. Therefore most sleep labs don't use them. Instead, they were using the unreliable nasal thermistors (heat detectors) for changes in air flow from the nose (more recently, nasal pressure transducers have proven more reliable for this purpose and most labs are using them).


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

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Re: General UARS Discussion

Post by jnk » Mon Mar 16, 2009 11:59 am

-SWS wrote:. . . http://www.medscape.com/viewarticle/494651
(HIGHLY RECOMMENDED READING). . .
May I borrow your medscape.com username and password?

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Re: General UARS Discussion

Post by rested gal » Mon Mar 16, 2009 12:00 pm

OutaSync wrote:If UARS is so deadly, why aren't more sleep centers testing for it?
Probably because of the gag reflex.

viewtopic.php?p=276621#p276621

dllfo's comment in that thread, about pulling out the PES:

The National Jewish Hospital did an overnight test on me with two sensors on a tiny wire through my nose, into my Esophagus. I had been doing every test for about a month.

About 3 hours later I gently pulled it out, which was made easier because of all the 4 letter words I was uttering.

To sleep with a tube down your throat ... wow. I yield the floor to a stronger, braver person than I.


I replied to dllfo:

You lasted longer than this doctor did... ...

A post in 2004 on a board many sleep techs frequent:

One of the techs asked:
"Several years ago it seemed like esophageal pressure monitoring (Pes) was becoming a standard in polysomnography. I haven't heard much about it lately. Are many centers/labs still using Pes or is this invasive procedure fading out?"


Among the replies by other techs was this:
"In the center I ran there was a physician who wanted to do this. He did not know, could not tell me, what the normal values would be so, he decided he would wer one and be monitored all night to establish a baseline. He showed the technologist how to place the catheter, on me. Then the technologist nervously placed it on him. He had it in for about 15 seconds, tossed his cookies then exclaimed he would never put a patient through that."
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Re: General UARS Discussion

Post by rested gal » Mon Mar 16, 2009 12:35 pm

jnk wrote:
-SWS wrote:. . . http://www.medscape.com/viewarticle/494651
(HIGHLY RECOMMENDED READING). . .
May I borrow your medscape.com username and password?
Here's one everyone is welcome to use for Medscape reading.

User name: userm1961
pw: userm
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Re: General UARS Discussion

Post by ozij » Mon Mar 16, 2009 1:29 pm

jnk wrote:
-SWS wrote:. . . http://www.medscape.com/viewarticle/494651
(HIGHLY RECOMMENDED READING). . .
May I borrow your medscape.com username and password?
Registration is free. And you don't really have to use your credit card number as the password.

O.

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Re: General UARS Discussion

Post by WearyOne » Mon Mar 16, 2009 1:49 pm

My sleep doc noted that much of my SDB events were UARS. Since I'm still tired and sleepy during the day after two years of compliant (and according to the data) successful OSA therapy, hopefully this overnight pulse/ox thing will shed some light, either through oxygen problems or heart rate issues. If not, wonder if he'll suggest another sleep study to look for other things. I'm aware that UARS events don't show on the cpap data, but he assured me that the pressure I was titrated to took care of everything, even the UARS.

Do oxygen desats occur with UARS?

That throat thing? Oh my goodness no! I'd be throwing up before they even got it all the way down; I have a huge gag reflex. And to sleep that way??

I might have some links to things, but I'm "supposed" to working right now, so better get back to that for now! LOL

Thanks for this thread, SWS!

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Re: General UARS Discussion

Post by jnk » Mon Mar 16, 2009 2:08 pm

I've never met General UARS, but if I did, I'd tell her that this is what I think I understand:

1. Some people don't sleep well because of breathing problems.

2. Pressurizing the airway can help.

3. Insurance can be stingy unless it gets a name with an accepted definition and something quantifiable to be measured.

What more do I, as a patient, need to know?

jeff

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Re: General UARS Discussion

Post by jnk » Mon Mar 16, 2009 3:23 pm

One doc's opinions and observations:

http://sleepguide.ning.com/profiles/blo ... resistance

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Re: General UARS Discussion

Post by dsm » Mon Mar 16, 2009 3:32 pm

SWS

Thanks for the links & starting this thread. I am happy to view Dr Krakow's def of UARS is now an historical one.

Tks

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Re: General UARS Discussion

Post by dsm » Mon Mar 16, 2009 4:20 pm

Just read that article & the 1st question that comes to my mind is that Barry Krakow was writing here in cpaptalk in late 2007 & this article was written in 2004 so I ask myself how is it we have a Dr who runs his own sleep clinics, studied with or under Christian Guilleminault, but is said to have a wrong view of UARS.

The bit here that I am bothered by is the credentials of both men are pretty good so how can it be said that one has it all wrong. This whole area of SDB is a moving target and it is hard enough for us lay people to work through the complexities. Being a technical researcher I have enjoyed working through the mechanical & algorithmic aspects of the machines but issues like this get difficult when we read one persons view of UARS (Krakow) then get told he has it all wrong.

Any one willing to elucidate this apparent conundrum ?

Here again is Krakow's post viewtopic.php?f=1&t=26622&st=0&sk=t&sd= ... =Dr+Krakow

Thanks

DSM

Before answering - it is also worth noting that the Guilleminault article uses Krakow as a citation so seems to respect Krakow's work ?

QUOTE (in Treatment section)
CPAP showed better relief in daytime fatigue than behavioral treatment alone at 6 months.[28*] Krakow et al.[48*] reported that 1-night CPAP titration improved objective measures of insomnia, arousal, and sleep in patients with chronic insomnia and SDB, and in their retrospective study of a small sample, validated measures of insomnia, sleep quality, and sleep impairment achieved clinical cures or near-cures after combined cognitive behavioral therapy and SDB therapies.
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Re: General UARS Discussion

Post by rested gal » Mon Mar 16, 2009 4:40 pm

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."

In the Diagnosis section of the Medscape article -SWS linked, Drs. Gang Bao and Christian Guilleminault mention:

"Polysomnography reveals AHI < 5, oxygen saturation > 92%, and the presence of respiratory related respiratory arousals (RERAs) and other nonapnea/hypopnea respiratory events (Table 1 and Table 2)."
---
"not associated with a drop in oxygen saturation of 3% as used for the definition of hypopnea."

An AHI less than 5 and oxygen sats staying above 90% would be considered "normal" -- no "sleep apnea."

In a PSG sleep study, the presence of repeated Respiratory Effort Related Arousals (RERAs) is probably the most obvious clue that Upper Airway Resistance could be going on.

Several years ago a woman in another state who had been reading some UARS links I'd posted began corresponding with me. She had had a sleep study that showed a lot of arousals, but since her AHI was under 5 and her O2 sats stayed up in the mid-90's, she could not receive a diagnosis of "sleep apnea." Consequently her insurance would not cover CPAP treatment, which she desperately wanted to try. She and her husband did a lot of missionary work, and were struggling financially. She was not able to buy a machine on her own, nor would the doctor give her a presciption for CPAP since the sleep study said she had no "sleep apnea."

I gave her a Respironics REMstar Auto I had, a copy of Encore Pro, and several masks. After the usual trials and tribulations of getting used to this crazy new way of trying to sleep, she gradually began to feel better and better. She was absolutely committed to making CPAP work, and it did. She was a very smart lady, was researching everything she could, and she tweaked the good old "minimum pressure" up and up until she got it right.

I don't think her doctor brought up the possibility of UARS at all. Not that it would have done any good, since her insurance required an OSA diagnosis.
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Re: General UARS Discussion

Post by jnk » Mon Mar 16, 2009 7:28 pm

rested gal wrote: . . . nor would the doctor give her a presciption for CPAP since the sleep study said she had no "sleep apnea". . . her insurance required an OSA diagnosis.
That example, to me, is the crux of the matter with UARS. It is about a noble attempt to erase a line in the sand that now says only people on one side of the line get to have their SDB treated.

Imagine if you had to prove your cough was over so many decibels and occurring more than x number of times an hour before you were allowed to get cough medicine to be able to sleep at night. Now imagine you knew you were going to have that cough the rest of your life and you knew you were a light sleeper! And imagine that cough could be cured with pressurized air, but no one would let you have it!!!

Names and definitions and proof of efficacy are all well and good. But when the rules prevent sick people from being allowed even to try a "medicine" that could make them much healthier, there has to be a way to change the rules, doesn't there? If insurance companies don't trust the sleep specialists that other sleep specialists send their patients to in order to figure out if a particular patient can benefit from a form of PAP therapy, is the problem the sleep specialists, the insurance companies, or who? And isn't it crazy that doctors and techs have to spend their lives worrying about how to score tests to please insurance? Something just ain't right all up in here!

So I don't think UARS is so much about discovering a syndrome. It's about finding a way to measure something other than AHI that gets better with treatment so somebody can prove to insurance that something is actually being treated when "the patient feels better" doesn't seem to cut it. So they (research docs) try measuring esophageal pressures, tiny flow limitations, heart oscillations, background equipment noise, changes in one's magnetic aura, sunspot activity, or whatever, in the attempt to find something objective to show the insurance people.

But I guess maybe that's part of the process when maybe 90% of the people on the planet might feel better with pressurized air, huh?

Now, if I could just remember whether I made my social-security number my username and my credit-card number my password or the other way around, I can do more research on medscape!

Talk to us -SWS. You can't start this kind of cocktail party then leave us to mix our own drinks!

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Re: General UARS Discussion

Post by WearyOne » Mon Mar 16, 2009 7:43 pm

jnk wrote:One doc's opinions and observations:

http://sleepguide.ning.com/profiles/blo ... resistance
This is an interesting article, but I had to laugh as this statement [highlights mine]:

"The way CPAP works is that a small mask is placed tightly over your nose and a small amount of positive air pressure is gently blown in through your nose, stenting your airway open while you are sleeping at night."

Makes it sound almost serene. But anyone with a high pressure (or maybe any pressure at all) I believe would disagree with the "placed gently...small amount of air...gently blown"!! LOL

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Re: General UARS Discussion

Post by -SWS » Mon Mar 16, 2009 7:45 pm

Sorry about the link at the top of this thread that required a password. Thanks Rested Gal and Ozij for straightening that out.
WearyOne wrote:My sleep doc noted that much of my SDB events were UARS. Since I'm still tired and sleepy during the day after two years of compliant (and according to the data) successful OSA therapy, hopefully this overnight pulse/ox thing will shed some light, either through oxygen problems or heart rate issues.
Pam, I'm glad to see you weigh in on this thread. I hope others who have UARS diagnoses can share with us what their doctors told them. IMHO people with UARS deserve nothing short of a "rally" where they can compare tips and anecdotes. May there be many UARS solidarity and support threads on this message board!

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Re: General UARS Discussion

Post by -SWS » Mon Mar 16, 2009 7:46 pm

jnk wrote:I've never met General UARS...
This just in from the nasal impedance war front: General UARS and General Tso were last seen battling for a strategical passage at a Chinese restaurant. Spicy chicken radioed a nearby Japanese restaurant for crucial wasabi reinforcements... More as this story unfolds.
jnk wrote:I've never met General UARS, but if I did, I'd tell her that this is what I think I understand:

1. Some people don't sleep well because of breathing problems.

2. Pressurizing the airway can help.

3. Insurance can be stingy unless it gets a name with an accepted definition and something quantifiable to be measured.

What more do I, as a patient, need to know?

jeff


I suspect that nut-shell summary would serve the majority of people who have UARS nicely.

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.