UARS - Upper airway resistance Syndrom

Hi everyone

I am a newby and I have read a lot of interesting stories on this board, especially the success stories which gave me courage and hope. Thank you all for sharing.

At the moment I'm really desperate. I'm 30 years old, sleep deprived since I was 15. I have had enlarged turbinates and deviated septum since 15. I could not breate through my nose. My sleep was never regenerative. Each person that slept next to me always told me: you are not snoring at night, but you are struggling to breath. I addressed the problem to every physicians I have met, but they all told me: you are just anxious, the nose is not the cause of your sleep issues. Most physicians only think about money, but I didn't give up. I met an ENT-physician who listened to all I had to say. He was pretty sure I am suffering from UARS due to several syntoms (enlarged turbinates, deviated septum, not snoring, struggling for breath, bruxism, foggy Brain, excessive daytime sleepiness etc.). He suggested that I first had surgery on my nose and after one year I would do a sleep study, in case my sleep issues would have continued.

Well, one year ago (April 2017) I had the nose surgery. Breathing during the day has slightly improved, but the struggle to breathe in the night is still continuing. I am restless, sleep deprived and at this stage depressed. The sleep study is scheduled in the mid of July. The ENS told me that in case I had UARS it will not be that easy to fix it (even with the help of CPAP machine) and he was hoping that all my issue would disappear after the nose surgery.

I have read a lot about UARS, and came to the conclusion that this syndrom is not easy to cure. Does anyone can shed some light on it and give me a little hope of a better future?

Thank you all.

I find it odd your ENT got you to do surgery before doing even a take-home sleep study. I just did one, still waiting on getting the results back, but I do know it’s under $500 and it would likely clearly document as much as you’d need to determine how you’re sleeping (or not) at night. Quite probably, if your regular day-breathing is messed up due to nasal flow issues, it wouldn’t surprise me if they decided to go with a full lab.

Here’s the thing: all surgery has risk of complications, and I’m guessing it wasn’t cheap for that surgery, either (though I’ve never had ENT-area surgery, I’ve had several other types) but to me (I’m not a doctor, but play one for software developers) I find it weird and counterproductive to NOT measure before modifying the variables: this is a human’s live version of premature optimization. In software development, if you think something is too inefficient, you run the application through a profiler that shows where the CPU or wall clock time is being used, with the application as it currently exists, instead of pronouncing “it’s too slow, I think it’s here, I’ll just go rewrite this section of code to optimize it!” as all too often, what you think was the culprit, isn’t it at all. Meanwhile, if you went and tried to “optimize” some part of the code, it often introduces bugs because optimizing code results in code that’s more complex and harder to read, all while wasting time acting on no information as to if that’s really the problem. Statistically, over 90% of CPU time is spent in a tiny amount of actual code, and in modern systems with software interacting with I/O, that time is spent waiting on other things and not actual useful computation.

Maybe this ENT has guidelines he had to take given how you presented, perhaps for insurance purposes, I don’t know: but from what you’ve stated, it seems he put the cart before the horse. Can you see another ENT and get a second opinion?

What's odd about a surgeon wanting business?

Nothing new there... which is why we generally advise people to not ask ENT's first about apnea - they come up with all kinds of things you 'have to' take out... trouble is, even when you do those, your OSA is still around and you still need Cpap.

Julie wrote: ↑

Sun Jun 10, 2018 1:17 pm

What's odd about a surgeon wanting business?

Nothing new there... which is why we generally advise people to not ask ENT's first about apnea - they come up with all kinds of things you 'have to' take out... trouble is, even when you do those, your OSA is still around and you still need Cpap.

Sadly, it doesn't seem all that odd, but I find it sad that the first tool was surgery without non-invasive testing. Such a doctor would make a very bad software engineer if they changed careers.

Snoregone Conclusion wrote: ↑

Sun Jun 10, 2018 1:24 pm

Sadly, it doesn't seem all that odd, but I find it sad that the first tool was surgery without non-invasive testing.

Given the symptoms, and the physical examination, there seemed to be plenty of justification to improve physical structures without a needless test to confirm what the patient already said "can't breath, feels like shit".

Snoregone Conclusion wrote: ↑

Sun Jun 10, 2018 1:24 pm

Such a doctor would make a very bad software engineer if they changed careers.

Perhaps you haven't noticed that the human body isn't a precision machine.

palerider wrote: ↑

Sun Jun 10, 2018 1:51 pm

Snoregone Conclusion wrote: ↑

Sun Jun 10, 2018 1:24 pm

Sadly, it doesn't seem all that odd, but I find it sad that the first tool was surgery without non-invasive testing.

Given the symptoms, and the physical examination, there seemed to be plenty of justification to improve physical structures without a needless test to confirm what the patient already said "can't breath, feels like shit".

Snoregone Conclusion wrote: ↑

Sun Jun 10, 2018 1:24 pm

Such a doctor would make a very bad software engineer if they changed careers.

Perhaps you haven't noticed that the human body isn't a precision machine.

On the contrary, I've noticed that there are "norms" and then there is what's present in human bodies, in particular, mine. What's true for most people isn't true for me in certain things: at least in one case, I know there's a term for one of my quirks, that of "paradoxical wakefulness" where something like Vicodin, or hydrocodone has a very different result for me compared to most. From what I've seen, most people it makes drowsy and loopy: for me, it makes me perfectly wide awake, wired, and very alert and clear-thinking, and makes it difficult/impossible to sleep at least for the initial doses that I've had after surgery or kidney stones.

From another thread, there is what's expected for the amount of sleep someone should have, and the suggestion I made that perhaps they needed to sleep less for what's optimal for them was shot down as though that couldn't possibly be correct, and while we're not doctors, I've seen enough documentaries to know that the "Required amount of sleep" is for the general population, in the same way that BMI is for the general population, and is a statistical thing more than an always-must-be-this-or-else sort of thing. Some people have been documented as only needing to sleep less than an hour per day, though they're extreme outliers. I've run 11 half marathons, and due to nerves, carbo loading, etc. I've generally done them on 4 hours sleep (admittedly, that's not going to result in best performance... I can't sustain too many days like that) where some people assert that I'd need to be lying, as nobody could do that. Some people seem to need far more sleep or they are useless during their waking hours: these are the relatively easy-to-test parameters.

I'm not here to try to cause harm to anyone, I don't get anything I'm looking for out of that. to get back on topic, the information presented does seem to say surgery was the first resort for what otherwise sounded like manageable daytime breathing, but bad nighttime breathing, without measurement of nighttime breathing. Being "pretty sure" and then ordering surgery isn't measurement, that's guessing, even if educated guessing: an educated guess is a good start to verifying what something is via proper testing, but all too often proves to not be the case; where the costs of an educated guess are very little if wrong, it's not a big deal, but this is a human life involved here, and it's not just about money. There's always a non-zero risk of serious injury/death from surgery, as well as long-term complications (such as added problematic scar tisssue that causes more problems than the original problem), while not measuring how well someone is breathing while sleeping also has a non-zero risk for immediate and long-term issues, which from sleepiness/fatigue alone could result in death, etc. so in my I-am-not-a-doctor-but-someone-that-makes-a-living-figuring-out-often-complicated-problems-with-risks, I question why a sleep study or some kind of actual measurement was not done first. Daytime breathing, even if you can't do it through your nose, is fully feasible through the mouth, as unpleasant as that is: when you go running, at some particular speed, you'll find breathing through your nose is insufficient, and you'll need to breathe through your mouth. Observing how someone breathes while they sleep, since that was the big issue being complained about, seems like a perfectly logical first step, not the last step. What's been stated sounds much like an auto mechanic saying "Well, let's replace your engine, and later see if it was really your alternator being weak that resulted in it not starting reliably." Instead of using a multimeter to check to see if the battery is being properly charged.

Snoregone Conclusion wrote: ↑

Sun Jun 10, 2018 2:25 pm

Instead of using a multimeter to check to see if the battery is being properly charged.

Sleep_deprived wrote: ↑

Sun Jun 10, 2018 6:54 am

I have had enlarged turbinates and deviated septum since 15. I could not breate through my nose. My sleep was never regenerative. Each person that slept next to me always told me: you are not snoring at night, but you are struggling to breath. I addressed the problem to every physicians I have met, but they all told me: you are just anxious, the nose is not the cause of your sleep issues. Most physicians only think about money, but I didn't give up. I met an ENT-physician who listened to all I had to say. He was pretty sure I am suffering from UARS due to several syntoms (enlarged turbinates, deviated septum, not snoring, struggling for breath, bruxism, foggy Brain, excessive daytime sleepiness etc.).

Just how much more of a 'multimeter' do you need? where should we stick the probes?

Those are all classic signs of sleep disordered breathing.

There *IS* such a thing as 'unnecessary testing', in the medical world... and strapping and wiring up someone to the tune of a few thousand dollars just to have a 'test'.... well, I think it could successfully be argued, that falls cleanly into the category of 'unnecessary'.

Surgery is indicated just for the deviated septum and trubinates, just so OP can breathe during the day!

With a physical need for surgery, I see no need to have delayed it. It may even help make CPAP use easier. But what I question is why wait a year before doing the sleep study? Even if the ENT had hoped it would solve the problem, after sufficient healing time and the problem remained, I would think a sleep study would have been done sooner than a year.

Sleep_deprived wrote: ↑

Sun Jun 10, 2018 6:54 am

Hi everyone

I am a newby and I have read a lot of interesting stories on this board, especially the success stories which gave me courage and hope. Thank you all for sharing.

At the moment I'm really desperate. I'm 30 years old, sleep deprived since I was 15. I have had enlarged turbinates and deviated septum since 15. I could not breate through my nose. My sleep was never regenerative. Each person that slept next to me always told me: you are not snoring at night, but you are struggling to breath. I addressed the problem to every physicians I have met, but they all told me: you are just anxious, the nose is not the cause of your sleep issues. Most physicians only think about money, but I didn't give up. I met an ENT-physician who listened to all I had to say. He was pretty sure I am suffering from UARS due to several syntoms (enlarged turbinates, deviated septum, not snoring, struggling for breath, bruxism, foggy Brain, excessive daytime sleepiness etc.). He suggested that I first had surgery on my nose and after one year I would do a sleep study, in case my sleep issues would have continued.

Well, one year ago (April 2017) I had the nose surgery. Breathing during the day has slightly improved, but the struggle to breathe in the night is still continuing. I am restless, sleep deprived and at this stage depressed. The sleep study is scheduled in the mid of July. The ENS told me that in case I had UARS it will not be that easy to fix it (even with the help of CPAP machine) and he was hoping that all my issue would disappear after the nose surgery.

I have read a lot about UARS, and came to the conclusion that this syndrom is not easy to cure. Does anyone can shed some light on it and give me a little hope of a better future?

Thank you all.

There are two doctors that seem to specialize in UARS. They are 1 - Dr. Steven Y. Park - he has a web site and wrote a book "Sleep, Interrupted" and 2 - Dr. Barry Krakow - his books don't, to my knowledge, cover UARS. But i have seen at least one excellent article by Dr. Krakow, on trearment for UARS. If you are concerned about treatment for UARS, you might find it helpful to do a web search on their names + UARS.

Thank you all for the reply. I had the nose surgery also to solve the breathe issues I had during the day, not only during the night. I can breathe slightly better during the day now, which for me was worth the surgery. But I don't want to set the focus of this topic on the nose surgery. . The spleep test is already scheduled, but at the moment my sleep deprivation is driving me crazy. Furthermore, I have read a lot about UARS and feel discouraged when I read that it is not "as easy" to cure as sleep apnea. I have read that the physician analyzing the sleep test should be skilled enough to detect the UARS in absence of sleep apnea, normalize the inflow curve through perfect titration/aggressive titration of the CPAP etc. Anyway, I would just like to know if someone on this board has been dealing with UARS and found a solution (especially those with turbinate issues).

Thank you.

We have a few UARS forum members here with documented UARS and success.
It's not so much that's it's hard to treat as it is a lot of times it's hard to diagnose and treat effectively by using the data available from the machines.

What I have seen with the few here and what I have read cpap will work but you can't use the same data you get from these machines to gauge effectiveness and that's real hard for people to grasp. They want to use the AHI as a guide line and they can't because people with UARS alone won't have a high AHI to start with so of course they are going to have a low AHI so they can't use AHI as a guide line for pressure needs. From the few here that have had success that I have chatted with they all had to use pressures higher than what technically gave them a nice low AHI. They learned to go by how they felt rather than numbers and that's very hard for people to do.
They want numbers to prove to them they are doing better...well UARS people already have good numbers.
They also have to give it a lot more time before they realistically can expect to see much improvement.
Near as I can tell there are not any overnight miracles for UARS people like there are for OSA people.

So it's a hard diagnosis to make and it's hard to evaluate in the sense there are none of the usual guidelines for a person to go by in terms of numbers evaluations. Going by how you feel is difficult because we humans use test results to measure how we are doing all the time and we seem to need them. We like to be able to put our finger on something we can validate. We also tend to expect immediate results and think that something "isn't working" when we don't get them. Instead we tend to have unrealistic expectations and that goes for people with OSA also. We also tend to forget that there is a mile long list of potential culprits for crappy sleep and cpap can't fix crappy sleep unless the problem is related to the airway....no matter how much we might want it to.

I can't think of any active forum member right now that is UARS only...but we have a a few here. Maybe one of them will come by and offer their input but give it some time because there's not many and I can't remember exactly who they are.

Pugsy wrote: ↑

Mon Jun 11, 2018 5:29 am

We have a few UARS forum members here with documented UARS and success.
It's not so much that's it's hard to treat as it is a lot of times it's hard to diagnose and treat effectively by using the data available from the machines.

What I have seen with the few here and what I have read cpap will work but you can't use the same data you get from these machines to gauge effectiveness and that's real hard for people to grasp. They want to use the AHI as a guide line and they can't because people with UARS alone won't have a high AHI to start with so of course they are going to have a low AHI so they can't use AHI as a guide line for pressure needs. From the few here that have had success that I have chatted with they all had to use pressures higher than what technically gave them a nice low AHI. They learned to go by how they felt rather than numbers and that's very hard for people to do.
They want numbers to prove to them they are doing better...well UARS people already have good numbers.
They also have to give it a lot more time before they realistically can expect to see much improvement.
Near as I can tell there are not any overnight miracles for UARS people like there are for OSA people.

So it's a hard diagnosis to make and it's hard to evaluate in the sense there are none of the usual guidelines for a person to go by in terms of numbers evaluations. Going by how you feel is difficult because we humans use test results to measure how we are doing all the time and we seem to need them. We like to be able to put our finger on something we can validate. We also tend to expect immediate results and think that something "isn't working" when we don't get them. Instead we tend to have unrealistic expectations and that goes for people with OSA also. We also tend to forget that there is a mile long list of potential culprits for crappy sleep and cpap can't fix crappy sleep unless the problem is related to the airway....no matter how much we might want it to.

I can't think of any active forum member right now that is UARS only...but we have a a few here. Maybe one of them will come by and offer their input but give it some time because there's not many and I can't remember exactly who they are.

It's interesting you say that, I think the process for fixing UARS can be longer, due to the lack of diagnostics, but I've heard it argued that infact recovery can often be much quicker.. simply because OSA has some much more damaging health implications e.g. cardiac strain, oxygen deprivation etc. Where as UARS tends to more often than not primarily just result in contiually fragmented sleep, but doesn't put the same level of strain on the heart and other organs in the body.

So once you find effective treatment, you can effectively 'bounce back' quicker, as you're only trying to tackle sleep deprivation/fragmented sleep, vs then having to recover from the rest of the damaging effects of OSA (which I assume is why OSA is often associated with Strokes etc, which I've never heard of with UARS.)

Although, either way I think there's too little data on UARS to make any calls on it. But, I've certainly heard of a few anecdotal cases with UARS where when people have find the effective treatment, they often can have quite dramatic results in a short space of time. It seems certainly from my observations, that many with OSA start to see statistical results quicker, but still often spend months recovering even with effective treatment.

Ofc that's only my observations on it from the research i've done and experiences I've read. Equally, there seems to be much less documentation be it scientific or anecdotal as a whole with UARS at the moment. So it's all a bit of a mystery!!

canyouhearmeaya wrote: ↑

Mon Jun 11, 2018 6:10 am

So once you find effective treatment, you can effectively 'bounce back' quicker, as you're only trying to tackle sleep deprivation/fragmented sleep, vs then having to recover from the rest of the damaging effects of OSA (which I assume is why OSA is often associated with Strokes etc, which I've never heard of with UARS.)

I am only going on what I heard from UARS people on this forum and what little I have read.
Yeah, maybe they can bounce back rather quickly once they find the right pressure...the problem is finding the right pressure and you don't just make a change one night and change it again the next night and change it again the next night.
We don't sleep the same each night no matter who we are and if someone goes making changes nightly in hopes of finding the miracle they will be forever chasing their tales because the real miracles are very, very rare.

The handful of people I have chatted with that had only UARS here on the forum...6 months minimum and approx 4 to 6 cm more pressure than what the good numbers showed in terms of AHI and they had an inordinate amount of patience getting to where they actually felt better. None had the miracle.

Just using a mask and cpap disturbs sleep...let's face it...it ain't natural. You have found out that there is a lot more to it than just slapping a mask on. It was a full 3 months before my brain quit waking me up just to tell me that there was something not natural on my face and I had no breathing issues at all with the mask or the pressures.
I don't believe in giving out false hopes...yeah, miracles do happen but there is a reason they are called miracles. We don't see them very often. I have yet to see a UARS patient have the miracle.

This is a good article on UARS:
http://doctorstevenpark.com/sleep-apnea ... e-syndrome

You'll note, I probably made UARS sound far too 'simple' in my post, which evidently it isn't! Was just trying to streamline my observations, and ultimately that's all they are. As with anything there's always going to be a YMMV scenario!

I find it interesting to note that he notes that people often either have a lot of dream recall, or none. Also that it's not about the amount of deep sleep, but the length of the cycles.

My sleep study showed an RDI of 15, with an AHI of 1. Which is potentially suggestive of UARS. During REM my RDI was higher than non-RDI, which is also inline with what he states is most common.

I often have very vivid dreams, which I presume I can recall so frequently (sometimes multiple during a night) due to the RERA causing awakening during the dream cycle. Allegedly that's why we remember dreams, because we woke DURING the dream, and if we complete the dream without waking, it's very unlikely we'll remember it. It's also interesting to note my dreams are often of quite a 'stressful' nature, that may be totally unrelated, but I do wonder if it's because of the stress stated likely induced during sleep due to respiratory effort, quite often are physiological state can be reflected in dreams (I often find I have dreams about peeing to be woken by an urgent need to pee! Also during my period of mouth taping to learn to nose breathe, the times I awoke effectively suffocating because I was trying to gasp for air through my mouth, in the dream I was suffocating.)

My sleep architecture was normal on my sleep study, suggesting the AMOUNT of deep sleep I got wasn't abnormal, however the architecture observations were done on %. So for example if you need 20% deep sleep a night, whether you get that in 4 stages of 40, if the amount is there the architecture % won't show it, but looking at the graph will. Looking at my graph, it looks pretty all over the place to me, flicking from different stages of sleep without the more gradual and structured form you'd expect.

I also think this is why UARS can be harder to spot (especially without testing), as you can seemingly sleep for normal amounts of time, have less obvious symptoms to observe (i.e. prolonged periods of non-breathing) and yet still suffer with the effects of sleep deprivation / fragmented sleep.

You can get the quantity, and by % the quality, and yet because of the fragmentation / lack of proper structure, still suffer.

Pugsy wrote: ↑

Mon Jun 11, 2018 6:29 am

canyouhearmeaya wrote: ↑

Mon Jun 11, 2018 6:10 am

So once you find effective treatment, you can effectively 'bounce back' quicker, as you're only trying to tackle sleep deprivation/fragmented sleep, vs then having to recover from the rest of the damaging effects of OSA (which I assume is why OSA is often associated with Strokes etc, which I've never heard of with UARS.)

I am only going on what I heard from UARS people on this forum and what little I have read.
Yeah, maybe they can bounce back rather quickly once they find the right pressure...the problem is finding the right pressure and you don't just make a change one night and change it again the next night and change it again the next night.
We don't sleep the same each night no matter who we are and if someone goes making changes nightly in hopes of finding the miracle they will be forever chasing their tales because the real miracles are very, very rare.

The handful of people I have chatted with that had only UARS here on the forum...6 months minimum and approx 4 to 6 cm more pressure than what the good numbers showed in terms of AHI and they had an inordinate amount of patience getting to where they actually felt better. None had the miracle.

Just using a mask and cpap disturbs sleep...let's face it...it ain't natural. You have found out that there is a lot more to it than just slapping a mask on. It was a full 3 months before my brain quit waking me up just to tell me that there was something not natural on my face and I had no breathing issues at all with the mask or the pressures.
I don't believe in giving out false hopes...yeah, miracles do happen but there is a reason they are called miracles. We don't see them very often. I have yet to see a UARS patient have the miracle.

Totally agree, like we say, the biggest issue is FINDING the effective treatment, because you haven't got the numbers like you have with OSA. I have read a few stories of overnight miracles with UARS (on Reddit). But equally, i've heard stories of overnight miracles with OSA. I think the reality is, whether it's UARS or OSA, the overnight miracles are reserved for a fortunate few! Damn them!!

And yes, as we're finding there are individual complications. I.e. for me, trying to even get my breathing to a good enough point (i.e. minimizing congestion) to even attempt to find out if CPAP works!!

Thankfully on this board, there is a host of knowledge from Pugsy and others, that will help you in the process.