Seeking information for making a decision for UARS treatment

Hi all,

A lot of the threads about the subject on here are a few years old, so decided it would be a good idea to start my own.

I'm an otherwise healthy 24 y/o male who was recently diagnosed with UARS after using a watchpat at home sleep study, and then an in-office PSG and MSLT. I On the PSG, I had an AHI of 0 and RDI of 16 although I am fairly certain my RDI is much higher as the PSG report claimed I fell asleep very quickly when I know was not the case. With the watchpat, the pAHI was 4.1 the pRDI was 5.6 and the pAHIc was 0.0.

I recently started diving into UARS, reading what Barry Krakow, Steven Park and others have to say, and am glad I did because my doctor was going to prescribe me a CPAP, which seems like it doesn't usually work in patients with UARS!

Dr. Krakow speaks highly of auto biPAPs and ASVs, and I've seen a little bit about getting surgery done. I do have large tonsils I was considering getting taken out, and it sounds like getting an endoscopy done would be a good idea to see if there are other parts of my airway that would benefit from surgical intervention. I know dental applicances are sometimes used to treat mild sleep apnea, but have so far heard little about them with respect to treating UARS (
my dentist, who I have a lot of trust in, does the Silent Nite MAD and has not heard any complaints, although I have no idea about the details of his patients who use it. ).

With all that being said, I wanted to get you experts' opinions of how to proceed. I would prefer not to have to use a PAP machine for the rest of my life, but at this point I'll do anything to fix my sleep issues. I was thinking if surgery is a viable option (which I do not know if is true), I would get a MAD or PAP machine for the short term, as I'm assuming it would be a long time between now and getting surgery done (for my own sake I would want to do a ton of research before getting surgery done, but I want relief for this ASAP - I have been dealing with this for about a year now). I am willing to spend whatever it takes to get my life back to normal.

For those of you with UARS, what has worked for you? What is the communities' thoughts on the effectiveness of dental appliances or surgery? How would y'all recommend proceeding? Additionally, if there are any resources on the topic of treatment that you have found beneficial, please let me know!

Thank you so much in advance, and let me know if any more info would be helpful!

"Each thing in its due time."

uars_advice wrote: ↑

Fri Feb 03, 2023 4:32 pm

I do have large tonsils I was considering getting taken out, and it sounds like getting an endoscopy done would be a good idea to see if there are other parts of my airway that would benefit from surgical intervention.

I would have that examination and discussion with a trusted ENT before worrying about anything else.

Here's hoping that a tonsillectomy would give you a lifetime solution.

Upper Airway Resistance Syndrome (UARS)

My position as a nobody:

I thought it to be brilliant when researchers provided the detailed work proving that some have disturbed sleep that is related to breathing problems that fall outside the criteria for the Obstructive Sleep Apnea diagnosis. It was solid science for which everyone associated with research and treatment of sleep-disorderd breathing should be grateful.

On the other hand, that designation itself (UARS) seems to have turned out to be less-than-helpful in many respects as a tool for treatment approaches and decisions. That is perhaps partly because it is difficult-to-impossilbe to differentiate between the various manifestations, "causes," sensitivities, and difficulties for low-AHI and zero-AHI patients. No tests identify subsets of UARS in a way that can sort out (1) which ones may be at the early stages of what will one day become OSA and (2) which ones have particularly sensitive nervous systems that overreact to tiny changes of airway status and (3) which ones have other issues that cause the airway to react in a way that gets picked up during testing.

The bottom lines (to me anyway) are (1) recognizing that any or all of the three factors above may be in play and may interact in unexpected ways in any given patient on any given night and (2) recognizing that assessing the best way to stabilize the airway long-term is really no different in substance to assessing the same thing in any mild-to-moderate OSA patient.

PAP treatment gets a bad rap for the low-AHI crowd because there is often less motivation for adherence to treatment, unless there is assistance with optimizing the therapy. In my opinion, the work of cutting-edge practitioners like Dr. Park and Dr. K has had added success mostly from the added personal attention to optimizing therapy to optimally stabilize the airway. Yes, autobilevel can be very calming, which can be crucial for those with hyped-up sensitivities. Yes, ASV uses other criteria beyond the events that other forms of PAP use, which may allow for more dialed-in and more helpful breathing support for some. However, the stress that is put publicly on the machine used is, in my opinion, overly emphasized, mostly in order to make the argument to payors workable that those more-expensive machines should be paid for. I believe, though, that great success can also at times be found for any highly-motivated and educated so-called UARS patient who is willing to use a plain-jane ResMed Autoset APAP effectively, as verified by OSCAR or similar products that provide charting for each breath. It may be that a higher constant pressure ends up being needed to sufficiently stabilize the airway, and it may be that full EPR is needed to get the calming effect from that virtual-bilevel modality, and it may require added work and problem-solving in general, but nothing is more successful for anyone at stabilizing the airway than optimized PAP. And my opinion is that a ResMed Autoset APAP is a perfectly capable machine for doing that for most, whether Dr. K would sign off on my statement or not.

As for the question of surgery, it is a complicated one on multiple levels. For someone with a true physical abnormality (deformity) that affects daytime breathing, not just nighttime breathing, the decision may be fairly simple in judging the possiblility of doing more good than damage. For anyone else, I would suggest deliberate caution. If it is a matter of merely improving something that isn't perfect in the hopes that someone will turn out to be in the 50-percent group who find benefit from a 50-percent improvement, that double flip of the coin means the odds are much more in favor of the house than the player. The surgeon gets paid either way. The patient may get zero benefit or may end up with a compounded issue that makes things worse. Naturally the numbers for the risks vs. possible rewards differ for each patient, as does each patient's stomach for risk-taking. I'm not sure Dr. Park would fully agree with my take on that.

The above is nothing more than the rambling opinions of some guy on the Internet who felt like exercising his fingers today.

And as a CPAP forum, we are light on those using other approaches.

-Jeff

. . . it probably is a duck -- 2015 / Bernardo Selim, MD / Mayo Clinic, Rochester, MN / https://aadsm.org/journal/pro_con_debat ... sue_31.php

lazarus wrote: ↑

Sat Feb 04, 2023 2:52 pm

As for the question of surgery, it is a complicated one on multiple levels.

uars_advice wrote: ↑

Fri Feb 03, 2023 4:32 pm

I do have large tonsils

ChicagoGranny wrote: ↑

Sat Feb 04, 2023 5:31 pm

lazarus wrote: ↑

Sat Feb 04, 2023 2:52 pm

As for the question of surgery, it is a complicated one on multiple levels.

uars_advice wrote: ↑

Fri Feb 03, 2023 4:32 pm

I do have large tonsils

My position for myself if I were in that situation is that if the tonsils caused problems with breathing during the day, I might consider it worth it to take the risks of surgery as an adult.

But much as is the case with the "deviated septum" concept, many have large-ish tonsils, just as few have a 100-percent-perfectly-positioned septum. The questions that a doc-and-patient team have to grapple with are ones such as "HOW deviated/large?" and "How absolutely sure are we that this painful procedure that is not zero-risk will solve my sleep-breathing problems forever?"

And then maybe a second or third opinion.

Hey, just me: a big chicken who doesn't like playing odds that are anywhere near "even." And especially any time a surgeon seems to keep his cards very close to the chest but then is quick to be willing to play the "heads, we both win; tails, only you lose" game.

I respect other opinions on the matter, though, of course.

lazarus wrote: ↑

Sat Feb 04, 2023 6:19 pm

I respect other opinions on the matter, though, of course.

And I assume the OP wouldn't mind hearing opinions other than mine and Granny's, as well . . .

uars_advice wrote: ↑

Fri Feb 03, 2023 4:32 pm

I recently started diving into UARS, reading what Barry Krakow, Steven Park and others have to say, and am glad I did because my doctor was going to prescribe me a CPAP, which seems like it doesn't usually work in patients with UARS!

Dr. Krakow speaks highly of auto biPAPs and ASVs,

In the US insurance companies are going to insist that you start out with a machine that is billed as a "CPAP" machine. That billing code does include AutoCPAPs, by the way. If the patient improves on CPAP/APAP, then the insurance company effectively only has to cover their share of a machine that runs somewhere between $500 and $1000.

If the patient fully complies with CPAP/APAP therapy---i.e. uses the machine as directed for at least four hours per night---and is "failing" at CPAP/APAP in the sense that they are not feeling better or are feeling worse than they did before CPAP/APAP was started, AND modifications to therapy (mode, pressure setting, different masks) have been tried and found to not make a difference, then the insurance company can usually be persuaded to pay for a more expensive bilevel machine such as a Resmed AirCurve 10 VPAP S, a Resmed AirCurve 10 VAuto, a PR DreamStation BiPAP, or a PR DreamStation BiPAP Auto. The insurance company may well demand another titration study on the bilevel machine. This is, by the way, the procedure that led to me being put on a bilevel auto machine about 3 1/2 months after I started CPAP therapy.

For an insurance company to pay for an ASV machine, the patient is going have to have a documented problem with central sleep apnea that persists while using a CPAP, APAP, bilevel, or bilevel auto machine.

So if you are wanting to use insurance dollars to pay for an xPAP machine to treat your UARS, you're going to have to accept that you will need to jump through the hoops that your insurance company sets up. And you may very well get lucky: The Resmed AirSense 10 AutoSet and AirSense 11 AutoSet machines do a pretty good job of behaving like a bilevel auto with PS = 3 when you set EPR = 3. In other words, unless you wind up needing a PS that is greater than 3, you may do quite well treating your UARS with a Resmed AutoSet.

And if you start out with a Resmed AutoSet and things don't work out? That's when you and your doc start working on getting the insurance company to pay for a Resmed AirCurve 10 VAuto, which is typically about twice as expensive as an AirSense AutoSet.

If you can afford to pay for everything out of pocket and you're willing to skip the insurance, then all you really need to do is ask your doctor (politely) to write a script for the machine you want to buy out-of-pocket and let the doc know he doesn't need to justify the script to your insurance company.

Wanted to post an update of my situation, since seeing a ton of UARS help posts with no resolutions listed was a little nerve-wracking.

I am 5 months into PAP therapy and it is awesome!! Absolutely night and day. I saw Dr. Gold on Long Island who I love. He prescribed me a resmed airsense 11, pressure 4-8. I have EPR set to 3 which helped me get used to it. I use an n20i mask which has been great as a side sleeper. Took me two masks to find one that I liked. I have been thinking about maybe trying nasal pillows. Dr. Gold was adamantly anti full face mask. It took maybe a week or 2 to get comfortable with PAP therapy, and I think a big part of that was my mask. The first mask I used was an n30i - as a side sleeper, I was basically crushing the tube that runs down the side on the side I sleep on, which limited airflow and made me feel like I wasn't getting enough air.

I started to feel a difference a few weeks - a month in.As an auxiliary benefit, my ADHD and anxiety are gone (I am off SSRIs now - Dr. Gold and others believe that sleep disordered breathing can create anxiety/depression/executive functioning issues with the brain, and the more I read into it the more I agree with him and his peers who share that opinion).

I am considering getting MMA surgery (many of Dr. Gold's patients do as a permanent fix) so I won't ever need to use PAP therapy again, but I don't really have an issue with my CPAP and don't really want to deal with a surgery like that if I don't have to. Maybe that will change after I spend more time with my CPAP.

If you have UARS or are in a similar situation, feel free to reach out for advice etc!

uars_advice wrote: ↑

Wed Aug 02, 2023 6:46 pm

my ADHD and anxiety are gone (I am off SSRIs now

You need to stick around and tell this story to other people who show up here. They have been misdiagnosed with ADHD or anxiety or depression. No amount of drugs or counseling will fix them. They need CPAP.

You have a good success story. You can copy and paste it here - viewtopic/t14494/Newbie-would-like-to-h ... lease.html

uars_advice wrote: ↑

Wed Aug 02, 2023 6:46 pm

The first mask I used was an n30i - as a side sleeper, I was basically crushing the tube that runs down the side on the side I sleep on, which limited airflow and made me feel like I wasn't getting enough air.

This is wrong. ResMed did extensive testing with one tube completely blocked. The air flow and pressure were not decreased.

Yeah more than happy to help others. Thanks for posting that link.

Do you have a source re: the tube blocking? Very good chance it was just in my head that I was getting less air when I was on my side vs. not but that seems to defy basic physics/logic, unless the machine compensates and ups the pressure. Just did a quick experiment where I slightly pinched the tubing of my n20i a bit and there was a noticeable difference in perceived airflow.

I was recently diagnosed with mild OSA AHI 6.6 with 13 seconds between episodes. My symptoms were severe such as depression/anxiety/chronic fatigue/insomnis and excersize intolerance, so it makes no sense. I was convinced that i had adrenal fatigue and have stopped weight training last summer due to this condition and having no energy. I had alot of muscle loss at the time since I lifted heavy for 15 years. I mostly weigh the same but now a lot of that muscle has been replaced with fat which seems to make things worse. It was so bad I could not even go for walks without crippling fatigue and myalgic pains in my legs. I would be super tired at night but than not sleep! I wakeup multiple times, sometimes gasping for air but most of the time not. I get nights sweats and just toss and turn all night. I’ve been doing whatever natural means possible to increase serotonin also since im afraid of SSRI’s but nothing really helps at night. I just dont understand how mild sleep apnea can cause all this and than it dawned on me that I must have UARS. I struggle to breathe at night because my nasal airways just feel so narrow, it’s worse at around 3AM and during REM sleep which is when most of my night sweats start. I just thought it was a blood sugar crash from adrenal fatigue but i now know better. I also get nasal congestion every night on the side that lays on my pillow for some reason, that makes it worse. At any rate, im on day 2 on the AirSense 11 and while it seems easier to breathe im still waking up. Im just assuming its the pressure change and getting used to everything since it ramps up to 7 or so at night. Perhaps my body just need to get used to it? When i wakeup i restart the ramp so that it starts at 4 again to help me fall back to sleep. Reading your success story gives me a a lot of hope for the future because I’ve read that i should be on a Bipap (which is not covered). Im just curious if you are still doing ok on the airsense 11? Also yes, i do have the exhale enabled at +3 by the sleep specialist.

A note for people reading this thread: EPR of 3 will drop the pressure by 3 only when the pressure on inhalation is at 7 or more. That’s because 4 is the lowest the machine can go.

Maybe also worth mentioning that many people feel air-starved trying to inhale at a pressure of 5 or even 6.

Trivium91 wrote: ↑

Fri Feb 23, 2024 5:28 pm

(SNIP)
I struggle to breathe at night because my nasal airways just feel so narrow, it’s worse at around 3AM and during REM sleep which is when most of my night sweats start. I just thought it was a blood sugar crash from adrenal fatigue but i now know better. I also get nasal congestion every night on the side that lays on my pillow for some reason, that makes it worse. At any rate, im on day 2 on the AirSense 11 and while it seems easier to breathe im still waking up. Im just assuming its the pressure change and getting used to everything since it ramps up to 7 or so at night. Perhaps my body just need to get used to it?
(SNIP)

I feel you should monitor your sleeping O2 saturation... I use the O2Ring, there are other recording pulse/ox meters available. Yes, you will need to get acclimated... I guess I was lucky, in that I was dying when I crawled in and begged for a machine... AHI >100... no problems acclimating. I do use Afrin sometimes, but if you've got at least one sinus open that should work. Turned off ramp a long, long time ago... I want that full 15cm rat now! EPR set to 1.

Sorry for the thread hijack, OP.

Miss Emerita wrote: ↑

Fri Feb 23, 2024 8:25 pm

A note for people reading this thread: EPR of 3 will drop the pressure by 3 only when the pressure on inhalation is at 7 or more. That’s because 4 is the lowest the machine can go.

Maybe also worth mentioning that many people feel air-starved trying to inhale at a pressure of 5 or even 6.

My machine is at 7 or so when i wakeup, it feels ok to exhale from.

Trivium91 wrote: ↑

Fri Feb 23, 2024 5:28 pm

I was recently diagnosed with mild OSA AHI 6.6 with 13 seconds between episodes. My symptoms were severe such as depression/anxiety/chronic fatigue/insomnis and excersize intolerance, so it makes no sense. I was convinced that i had adrenal fatigue and have stopped weight training last summer due to this condition and having no energy. I had alot of muscle loss at the time since I lifted heavy for 15 years. I mostly weigh the same but now a lot of that muscle has been replaced with fat which seems to make things worse. It was so bad I could not even go for walks without crippling fatigue and myalgic pains in my legs. I would be super tired at night but than not sleep! I wakeup multiple times, sometimes gasping for air but most of the time not. I get nights sweats and just toss and turn all night. I’ve been doing whatever natural means possible to increase serotonin also since im afraid of SSRI’s but nothing really helps at night. I just dont understand how mild sleep apnea can cause all this and than it dawned on me that I must have UARS. I struggle to breathe at night because my nasal airways just feel so narrow, it’s worse at around 3AM and during REM sleep which is when most of my night sweats start. I just thought it was a blood sugar crash from adrenal fatigue but i now know better. I also get nasal congestion every night on the side that lays on my pillow for some reason, that makes it worse. At any rate, im on day 2 on the AirSense 11 and while it seems easier to breathe im still waking up. Im just assuming its the pressure change and getting used to everything since it ramps up to 7 or so at night. Perhaps my body just need to get used to it? When i wakeup i restart the ramp so that it starts at 4 again to help me fall back to sleep. Reading your success story gives me a a lot of hope for the future because I’ve read that i should be on a Bipap (which is not covered). Im just curious if you are still doing ok on the airsense 11? Also yes, i do have the exhale enabled at +3 by the sleep specialist.

I am really really really happy to hear that my post gave you hope. Next week will be my one year anniversary of CPAP (still using the airsense 11) and things are still going very well. Using it every night is second nature once I got my mask dialed in. I've been noticing some redness on the bridge of my nose, so am gonna try using nasal pillows or those nasal pads, but that's really my only gripe, and it's just cosmetic. I realized I was opening my mouth at night this past summer - I'd wake up with a dry mouth, and would always feel noticeably worse the next day - and started using a chinstrap which has solved the problem completely. I'm still dialing in my climate control during wintertime, but that's just a matter of trial and error I'm told. I only learned a few months ago that you're actually supposed to place your machine a foot or so below your head to prevent rain out. I think that covers all the difficulties I've encountered in the past year, and none of them are too bad/have significantly gotten in the way of my therapy.

Re your nasal congestion - when I've gotten a cold or something and get too congested at night, I've just taken Afrin. Re you're nose feeling narrow - have you gotten them checked out by an ENT? Not sure if there are procedures that can be done to open them up.

Definitely give yourself time to adjust to it, it took me a few nights before I was able to fully sleep through the night with it, and I know for some people it takes longer. I feel like a lot of it is just adjusting to it/trial and error to get things dialed in. I'm not a fan of the ramp up but know some people are, I like EPR but some people don't, I run low pressures but some people prefer higher.

Wishing you the best of luck, and I hope you can push through the initial difficulties and get used to it. It is so so worth it in the end. Happy to discuss further or answer any other questions, I want to help out as many people as I can! This has seriously been a life changer for me.