UARS Questions--Want to Feel Better!

Okay, another thread prompted me to get the wisdom and advice of this wonderful group, instead of guessing and floundering around. (Warning--not a short post!)

I rarely feel good from cpap therapy. (A couple days last week were really good, but, of course, those are when my machine decided to take its two-day vacation from recording data! ) And although I have no intention of stopping therapy because I definitely know the possible health consequences if I do, I really would like to feel good, at least part of the time.

My AHI is always under 1. Many times I have no apneas, but some hypopneas. I'm not crazy about "average length of time in apnea" when I have do have them, but I can't necessarily correlate a "30 second average," for example, with feeling really bad the next day. (I did have 120 minute average one time with the UMFF, so I'm afraid to ever use that mask again!)

My sleep study showed many sleep disturbances that were not OA or hypopnea, but UARS events. Sleep doc actually went through the long report and marked them for me. He said that you can't see those in the data from the machine and therefore can't really tell if the machine is taking care of them or not, but he said cpap did take care of most of them at the titration study. But how can I tell now?

Do you think UARS is related to snoring at all? I've played with masks, pressure (w/i reason), and humidity, and I just can't seem to find a correlation between these things, snoring, and how I feel, other than it seems that when my snoring numbers are up, I do feel worse. (Snoring nightly average over the last two months is 7.) Again, today I feel horrible, but my machine took another vacation from data-collecting last night.

I'd like to reduce the snoring to see if that helps how I feel, as I'm thinking it might relate to UARS, but I can't seem to find anything that helps. Even tried the tennis ball thing on the back of my shirt to help stay off my back, but I woke up on my back, laying on the tennis ball! And I already sleep on a foam wedge and two pillows!

One thing I haven't done--Should I stop caffeine altogether?

Anybody have any suggestions, other than standing up to sleep?

Thanks!

Pam

I'm wondering if maybe your leaking air around the mouth of your mask while asleep. If so your NOT receiving the required pressure to aid in your therapy.

I would suggest you try again the UMFF and see if you can tolerate it now. That is the first mask I got when I started therapy. I hated it as I could not get it to seal as well as being uncomfortable. I put it away and bought something else. Since then now have seven masks to pick from. A few days ago I got out the UMFF and tried it on. It felt pretty good so I used it that night. Much to my surprise it sealed exceptionally well and felt good. I had some very low numbers the next morning. Since then it is now my mask of choice. I think one thing that has helped is the cooler weather which keeps me from sweating at night. YMMV jim
PS I'm sorry I don't know anything about UARS

my opinion:

UARS is just a broad term some doctor came up with to confuse you with OSA more, or a term used when they don't know the cause of the obstruction and it sounds better than a guess or saying "we don't know". Go away from a Sleep Lab with a UARS diagnosis and you probably won't get ANY insurance coverage for it.

If UARS is the Upper Airway Resistance Syndrome, then what the hell is LARS or Lower Airway Resistance Syndrome? Right, there isn't one. Then some would have you believe that your airway collapses like a fire hose laying on the asphalt with no pressure, yet with all the latest and greatest scanning techniques they have been unable to capture those conditions on film. They do have a 30 yr old image with a guy showing his tongue growing off his adam's apple.

Do your own searching for it, you only find repeat propaganda and only a select few of the labs ever give you that diagnosis. Even if there is such a thing, a smart doctor would never classify it as such as they know any future treatments submitted to insurance would be declined coverage. So they write down OSA and tell you UARS (so they get paid and don't have to explain it to you).

If you have a huge Uvula or soft palate and it blocks the airway is that UARS? If your turbinate bony structure inside the nose has grown into a spur and is blocking off the airway is that UARS? If your tongue falls into the back of your throat and blocks off the airway is that UARS? If the tongue/palate relaxes enough to block the airway where you snore on inhale is that UARS?

Your guess is as good as mine or theirs.

What is the upper airway and what is the lower? My guess is anything above the tongue is upper and anything below is lower, but the only thing lower is your epiglottis and vocal cords.

While most insurance won't cover UARS, they will cover a tonsillectomy, UPPP or septoplasty. You can be assured if insurance won't pay for it, it is probably not a disorder at all, just a term to describe the blockage is somewhere above your shoulders.

Thanks for the suggestion, Jim, but I think if I was leaking around the mask enough to make a difference, my leak rate would be higher. The vent rate for my mask (Hybrid with original shell) at my pressure is 45 and my leak rate is anywhere between 45 and 47. Could that little bit of difference between the vent rate and my leak rate cause a major problem?

On the UMFF, I was sorta kidding about not using it again. My leak rate data for this mask is actually showing up a little less than its vent rate (?). Because of that, I really don't know what caused my "length of time in apnea" rate to be 120 once with the UMFF. The problem that night could be totally unrelated to the mask.

Pam

Snoredog and others....

Ozij posted a link in another thread to a very informative Resmed video about sleep disordered breathing. It went something like this: flow limitation, flow limitation with snoring, hypopnea, apnea. "Flow limitation" was defined as a restriction in air flow, not as bad as apneas and w/o the desats. But, the body has to work harder to breathe with flow limitation or flow limitation with snoring and can arouse you to start breathing normally again, which, of course, interrupts sleep.

Got me to wondering if flow limitation was kinda like UARS?



Pam

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, video, Hypopnea

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, video, AHI, RDI, Hypopnea

it is a "broad" term used to describe a syndrome or condition of resistance breathing leading to daytime somnolence.

NIH says:

A general consensus regarding the exact clinical definitions and the physiologic measurement techniques leading to a diagnosis does not exist, although esophageal manometry and pneumotachographic airflow measurements taken during polysomnography are the "gold standard."

We are familiar with SDB or OSA being made up of Flow limitations, Hypopnea and Apnea and even snores (clinical definitions). Right?

Now some of these events we know contribute to a drop in oxygen levels and an associated arousal seen on a EEG, we learned that these "obstructive" events are what make up the heart of OSA or SDB (Sleep Disordered Breathing).

Now with UARS, they claim that resistance (where ever that may come from) leads to arousals which contribute to daytime somnolence?? In other words, the authors of UARS would like you to believe that just the resistance forces found in the upper airway contributes to daytime somnolence.

then as the NIH expert suggests, techniques for measuring this are used in PSG's and considered the "gold standard" yet the techniques for making a UARS diagnosis from it do not exist.

See I was hoping ole split_city would expand his research below the UES like that GI research presentation that Rooster once put up where they showed only 2cc of saline injected via catheter caused a closure of the UES and resulting EEG arousal. Since this was being put on by a bunch of GI specialists, you know they wanted to get into the cash cow of sleep medicine.

But that GI theory (stomach acid bathing the UES and below causing an EEG arousal) is the first suggestion I've seen of those residual arousals. As suggested in that presentation, they could trigger the EEG arousal (seen as spontaneous) on command by injecting 2cc's of saline in the catheter.

I know in my own case my spontaneous arousals remain even with cpap addressing 100% of all my obstructive events, I've also tried controlling my GERD with prescription PrevAcid for a year, but those spontaneous arousals continue to be seen as what destroys my sleep architecture. I've just learned to live with the daytime somnolence.

Just because there isn't a consensus definition of UARS out in the field of sleep doesn't mean the syndrome doesn't exist (I think it does) and doesn't mean it can't cause arousals that can wreck sleep.

As far as definitions go, the sleep medicine field is not in perfect consensus about what hypopneas are.

Sometimes, dawg, I think you tend to think...

"If I have it, everyone does." (centrals over a certain pressure. )

"If I don't have it, nobody could." (UARS)

rested gal wrote:Just because there isn't a consensus definition of UARS out in the field of sleep doesn't mean the syndrome doesn't exist (I think it does) and doesn't mean it can't cause arousals that can wreck sleep.

As far as definitions go, the sleep medicine field is not in perfect consensus about what hypopneas are.

Sometimes, dawg, I think you tend to think...

"If I have it, everyone does." (centrals over a certain pressure. )

"If I don't have it, nobody could." (UARS)

you are just beating around the bush like the medical establishment does, you can't explain what UARS is either.

So how can a doctor tell someone they have UARS if there is no clear clinical description of it?

They might as well just told the patient they are a hypochondriac

Oh and that consensus statement in the quotes? That came directly from the National Institutes of Health

http://tinyurl.com/22qrpn

so it's not my consensus,

I like that old 1999 quote. I'd have underlined the word "exact", though. Science has probably been doing a lot of catching up since then.

The entire article in the journal CHEST that that quote was taken from is a bit more illuminating, I think:

the full article in Chest

Snoredog wrote: See I was hoping ole split_city would expand his research below the UES like that GI research presentation that Rooster once put up where they showed only 2cc of saline injected via catheter caused a closure of the UES and resulting EEG arousal. Since this was being put on by a bunch of GI specialists, you know they wanted to get into the cash cow of sleep medicine.

Sorry Snoredog, I'm too busy selling my beer belly theory around the world. It seems a lot of people are interested in it (including Prof. David White). I must be a pretty good politician/car salesperson hey..


Anyway, here's a crazy idea....why don't you put your mind to it, set up a research lab and undertake some of these studies

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CPAPopedia Keywords Contained In This Post (Click For Definition): Arousal

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CPAPopedia Keywords Contained In This Post (Click For Definition): Arousal

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CPAPopedia Keywords Contained In This Post (Click For Definition): Arousal

Snoredog wrote:you are just beating around the bush like the medical establishment does, you can't explain what UARS is either.

And even as recently as just last week, as we were standing around the transcutaneous carbon dioxide (TcCO2) monitor, RG said:

RG wrote:Hi SAG, nice day!

How're the kids?

The key clinical features for UARS include presentations of atypical symptoms for OSAS, especially functional somatic complaints such as complaints of sleep maintenance insomnia, chronic fatigue, chronic pain symptoms, fibromyalgia, morning headache, and cognitive difficulties or parasomnias, such as chronic sleepwalking or bruxism. Clinical examinations often show craniofacial abnormalities. Polysomnography reveals AHI < 5, oxygen saturation > 92%, and the presence of respiratory related respiratory arousals (RERAs) and other nonapnea/hypopnea respiratory events.

Guilleminault is pushing CAP in the analysis of UARS again. Do you think CAP will ever replace classic scoring?

Kids nowadays! They have no respect for tradition!

To which I replied

SAG wrote:How 'bout them Red Sox?

Yo Pam! What're you doing for medications these days?

WearyOne wrote:My sleep study showed many sleep disturbances that were not OA or hypopnea, but UARS events. Sleep doc actually went through the long report and marked them for me.

Do you still have that? How did he identify UARS? (Although it might be more appropriate to call the events themselves "RERAs".)

WearyOne wrote:Do you think UARS is related to snoring at all?

Sure could be.

WearyOne wrote:.. it seems that when my snoring numbers are up, I do feel worse. (Snoring nightly average over the last two months is 7.)

Got a graph of that? Can you verify that events marked as snoring is actually snoring?

Can you find out what software they used with your sleep studies, whether or not it has a "Physician Reader", and if you can get copies of the last 2 studies (the actual raw data)? (I suppose you need to do that last thing first).
SAG

split_city wrote:
Sorry Snoredog, I'm too busy selling my beer belly theory around the world. ....... I must be a pretty good politician/car salesperson hey..

Puhleeze! A skilled politician would call it abdominal adiposis.

Thanks RG for the article!

I have UARS.

For me it is simple:

No cpap (apap) = crappy sleep and daytime fatigue which lasted years.

Cpap (apap) = good sleep and much less fatigue.

My sleep study showed micro-arousals. During these micro-arousals I woke up just enough to keep me from going into stage 3 or 4 sleep. My doc sent me home with an apap for 5 night home study. I did fine with the machine and felt better than I had for years. He appealed the insurance company and I qualified for a cpap machine. The day after my insurance company approved the cpap, my doc was so convinced that I needed one, he was going to give me an old machine of his! I have since upgraded to an apap machine, use a smart card and read my data.

I have tweaked my pressure until I saw a low AHI and low mask leaks with my apap (with the help of many here!) to a pressure which is just right for me.

Just my two cents worth.

As for Wearyone - I was never told anything about reading or not reading my data from my doc - he does not know I have the apap yet (he will this Friday). However, from reading my data, I can see which masks are working well, which are not and was able to set my own pressure (8-11) which works quite well for me. The doc had me on a straight cpap set at 6. I never felt like I slept well (did not feel like I was getting enough air) and kept slowly increasing it to 8 and I started feeling and sleeping better. I told him what I did and he was fine with that. I had an opportunity to buy an apap and feel even better using this machine. My pressure averages 8.3, but if I need the higher pressure, it's there and I do go up on occasion.

As for the snoring - I never snored loudly before cpap - I just had these little funny throat noises which woke me up. I would wake up feeling like my throat was completely closed and that I was choking.

Maybe someone else here is more knowledgeable about the snore index and if that is an issue or not. It does not seem to make a difference one way or the other for me.

I sure hope you can work thing out and feel better Wearyone! - one more thing that has been good for me is sticking to the mask which works best for me - mirage activa and using poilgrip strips to keep my mouth shut. I've quit the "mask quest" and am sticking to this one. I still drink some caffeine (but half de-caff.) I also sleep on my back and seem to do just fine on my back or on my side.

rested gal wrote:I like that old 1999 quote. I'd have underlined the word "exact", though. Science has probably been doing a lot of catching up since then.

The entire article in the journal CHEST that that quote was taken from is a bit more illuminating, I think:

the full article in Chest

RG,
Thanks for the article and enlightened discussion.

From what I can tell, the difference between UARS and OSA is the absence of AHI or apnea, all the symptoms of UARS is the same as OSA.

It was a lot easier to believe your daytime fatigue was caused by apnea and the associated arousal.

How may patients have we seen come here saying they were going in for a PSG and came away with Normal or or lower AHI to not even qualify for insurance coverage of CPAP? Then CPAP is the suggested therapy for UARS.

Next, what is the difference between a patient with UARS and a OSA patient in full compliance with CPAP resulting in a similar AHI?

There are many of us that are fully compliant on CPAP, our AHI is well maintained below 5 every night yet we continue to have the same daytime fatigue as the UARS classified patient.

CPAP doesn't appear to be effective in addressing UARS either, maybe it reduces or stops snoring but doing that has been shown to not effect UARS even after palatal surgery as stated in the CHEST journal. So we can't say for sure UARS is related to snoring. Snoring should be fairly easy to address in a non-surgical way with CPAP. We can all see how much we snore with the right machine and reporting software.

Look at PAM, she is on CPAP from what I recall, she is fully compliant, don't think she would have started this thread if her daytime fatigue wasn't still present. Same for SleepyRed, she has my old classic autopap, I know she has that set up right and is addressing all the events that she has understood as being UARS, but I bet she is here for the same reason, finding an answer to that daytime fatigue.

I've been on CPAP nearly 7 years fully compliant during that time, I'm still dead ass tired every day, still looking for the reasons why. I can't dismiss those spontaneous arousals seen on my 4 PSG's, they were still there with a AHI down to near zero and no snoring present. I'm still tired during the day and have been for more than 7 years. CPAP didn't make much of any impact to my daytime fatigue at all. I know I can driver longer if I need to head down to LA to see my daughter or drive to Mexico. I was then told I was depressed and given Zoloft to take for a year, made no difference other than screwing up my metabolism even more.

Fact is they don't know squat about what UARS is and the cause or if it is even any different than having plain OSA. All that CHEST journal article says is it could be this or it could be that, but then again it could be something else, basically it says nothing any different than what they classify EDS as.

UARS is daytime fatigue and we don't know the cause of it, is what it should say. It is a kin to asking a lab tech what are those spontaneous arousals caused from? you get those deer in the headlights look and they shake their head.