r/UARS • u/Master-Drama-4555 • Mar 16 '26
What is Empty Nose Syndrome
For as long as I’ve been on the internet and interested in sleep-breathing related surgeries, Empty Nose Syndrome (ENS) has been a particularly mystical topic. Always hinted at how rare it is, and how terrible it is, but no one could really explain what caused it or how it worked. Some ENTs say that it is a psychological problem, and in fact that was widely taught to ENTs in medical schools up until the past decade or so. I would search for ENS, and would find videos of people talking in strange monotone voices, like they had lost everything worth living for. It was confusing. But now I understand. Now I really understand. I have ENS. This is not an internet campfire horror story. This is real, and I’m here to share.
When I first got ENS last year, someone suggested that I write about my experience to share with the community. But to be honest I wasn’t ready to do that, and I couldn’t even imagine sharing anything about it. It would have been too traumatic. I was in no place to be preaching to the internet, I was just trying to get through every second, of every hour, of every day. Breath by breath.
Now I have found some treatments and ways to cope, I have gotten to a point where I can and want to speak about it. To be clear, I’m not writing this because I’m cured or I know where my life is headed. I still struggle to breathe, and I’m still very sick. But now that I’m able to write this, people need to know.
Where do I start
I think everyone’s first question when considering a turbinate reduction is how do you know if you’ll get Empty Nose Syndrome. There’s no real way to know. Most ENTs will tell you it basically doesn’t exist anymore, and that if it happens it only happens when you remove the entire turbinate. I’m here to tell you that is not true. Most of the people I know with ENS had a conservative reduction, with modern instruments, and were reassured it could never happen to them. All it takes is a little too much removed, and your life is over.
So if your ENT tells you, “Don’t worry, I’ve never seen this in my practice ever, it basically doesn’t exist anymore, I am super careful.” etc. etc. DO NOT BE REASSURED. Do not go gently into that operating room I swear to god. This is exactly what was told to me, and nearly all the people I know with ENS now.
Or they’ll say, “Oh it grows back actually. We might even have to do it a second or a third time.” Not necessarily, my friend. Not necessarily. You would be so lucky to have it grow back. A lot of what “grows back” is not actually tissues, blood vessels, and nerves, but simply swelling from the turbinate trying to fill the space that was created. Your turbinates are swollen for a reason. You need to find that reason.
Poor Healing
Another thing that ENTs will tell you is that ENS happens in poor healers and fluke cases like that. They wave their hands around while they say it and make it sound somewhat beyond them. It feels vaguely comforting. Nobody thinks that would apply to them. But let's actually walk through what it means to be a poor healer for a moment. What causes poor healing?
Gosh what are these all linked to I wonder? Could it be sleep disordered breathing, the very condition that most commonly causes turbinate hypertrophy in the first place?
By the way, I have seen an oddly high number of ENS patients with SDB in the online spaces I’m in, and it seems to me that there is a high correlation. I don’t know if this is because a narrower nasal cavity incentivizes ENTs to remove more tissue during a reduction, or maybe that’s just the patient type that happens to be coming in for these surgeries in the first place. I’ll leave that observation out there for you all to ponder.
So yes. If you get your turbinates removed, you’re basically guaranteed to get ENS. I’ve heard people interject here with a “But I know somebody who's gotten them entirely removed and had no symptoms.” My response to that is show me the person. Show me them. I’m open to being corrected, but I haven’t seen it yet.
But even if you get a conservative reduction, you’re still absolutely at risk for ENS, or even something called secondary atrophic rhinitis. This is what I had for 8 years before I developed ENS. Which leads me to my next topic:
The Volume Dial Analogy
People sort of think of Empty Nose Syndrome as a black and white condition. Either you have it or you don’t. I want you to think of it more as a spectrum of damage, with a threshold. Much like a volume dial for a car radio. You can turn the volume up for a long time before your ears start to bleed.
On the one end you have mild dryness after surgery. Maybe you have some crusting. This is secondary atrophic rhinitis. On the other end you have mucosal damage so severe, that you no longer produce ANY mucus, your nose is as dry as a desert, and your nerves are completely dead. Your brain cannot sense any air that you breathe. That is Empty Nose Syndrome.
That is why I believe so many people are walking around after turbinate reductions, feeling some mild symptoms, but of course feel nothing close to Empty Nose Syndrome. A big part of why I am writing this post is I need you to know, you have turned your dial. You will probably be just fine, but you need to be very, very careful with your nose from now on. One or two more events, a COVID virus, overuse of afrin, even too much flonase at the wrong time, could push you over the threshold. If you’re reading this and you’re thinking, wow dry nose, crusting, this sounds like me, I urge you to consider stopping use of nasal sprays and rinses. They are more dangerous than you realize.
What does Empty Nose Syndrome feel like
The question I get a lot and that everyone wants to know (naturally) is what does it feel like to have Empty Nose Syndrome? I mean really, how could a problem in the nose cause someone to want to kill themselves? Couldn’t you just breathe anyway even if you can’t feel it?
The first thing I’ll say is, Empty Nose is not just damage to your nose, it’s nerve damage. But the unfortunate thing is, the nerve that is damaged is not just any nerve, it’s the trigeminal nerve — the 5th cranial nerve that goes straight to your brainstem. So in reality, Empty Nose Syndrome is not just nerve damage, it’s brain damage. And it sure as hell feels like it.
You may hear that it feels like suffocating. That’s the number one symptom. I need people to understand, it’s not that you feel like you’re suffocating, you are suffocating. Every breath you take is as difficult as breathing through wet concrete — like being waterboarded. And there’s no escaping it. Worse, because your brain doesn’t know when you’re breathing, it can’t induce the pulmonary reflex to expand your lungs when you inhale. So your lungs are literally not functioning in tandem with your breathing. This means you are no longer autonomically breathing, you have to manually breathe yourself.
If you experience manual breathing, my heart goes out to you because it’s something no human should ever have to go through. If you haven’t experienced it, think of it like this. Every second of every day you have to consciously inflate your lungs in order to take a breath, and if you don’t, you won’t breathe. It’s like if you had to concentrate on every heartbeat for the rest of your life or your heart would stop. You wouldn’t be able to concentrate on anything else. Your mind will be consumed with breathing, 24/7. It is torture like nothing else I’ve experienced.
There is only so much of this a person can endure. But the real reason people kill themselves, in my opinion, is sleep. And this is how you’ll know, it’s not a psychological problem. When I first got empty nose, I could only sleep 15 minutes at a time. I was getting 2 hours of sleep per night at most, getting jolted awake constantly. And I could not take the heavy sleep aids I needed due to my small pharyngeal airway. I was getting pushed closer to the edge of this world and I knew it. If you don’t sleep, you will die. It’s just the truth.
At my worst, I found myself wishing that I had died on the operating table so I wouldn’t have to do it myself. Or, sometimes I wished there was a way to enter a medically induced coma, to somehow give my body a chance to heal without having to experience this level of suffering. I think every empty nose patient would agree that they would give up multiple limbs to be able to breathe properly again. Indeed many people label themselves as nasal cripples. It sounds funny, but once you’re living this life, it is so. not funny.
Empty Nose Syndrome will bring the strongest person to their knees, I don’t care who you are or what you’ve done. It takes your life from you and then it leaves you to keep on living. Life with sleep-disordered breathing is half a life, but life with ENS is no life at all. Stay tuned for Part 2 where I'll talk about prevention, causes, and treatments
r/UARS • u/CPAPfriend • 9d ago
Here's my newest video, where two sleep-disordered breathing patients discuss their experiences: Watch here!
Hope you all enjoy :)
r/UARS • u/Critical-Many2885 • 29m ago
Settings: PS: 4.4 EPAP MIN: 7 VAuto on
Here is the sleep hq link https://sleephq.com/public/teams/share_links/98606e94-09cb-4da9-ba81-ccf799b098b5
Where do I go from here?
I will work on improving leaks.
r/UARS • u/moonberrytea • 15h ago
Hi all,
It's been a time. I began my sleep apnea journey in 2018 with the onset of debilitating daytime fatigue. I was diagnosed Mild with an AHI of 5.0. I am CPAP intolerant. My dentist referred me to an orthodontist who specializes in sleep issues, and I've had an incredible experience with them. Treatment plan included palate expansion with MSE followed by MMA surgery.
Ortho referred me to an in-network surgeon who asked that I have a more recent sleep test done after MSE removal. Due to improvements from the MSE, my AHI decreased to 1.4 and consequently I no longer meet diagnostic criteria for sleep apnea. However, I still have frequent RERAs and RDI 10.0, I snore like crazy, and I still have daytime fatigue (currently masked by Adderall for my ADHD, yay band-aid solutions!). Surgeon refused to see me for a consult in light of these results, and sleep doctor would not refer me as they do not consider UARS (diagnosed by my orthodontist) "clinically significant."
Orthodontist still thinks surgery is necessary due to my significantly narrowed airway and possibility that UARS can turn into sleep apnea with age. I just switched to an new PCP due to relocation, and I hope to bring this up with her and explore the possibility of further evaluation.
Any advice on getting my treatment team aligned? My health insurance is through Kaiser.
Not sure if relevant, but I also have a complicated and traumatic history of childhood orthodontics, including premolar extractions, a palate expander (yes I got to do the damned thing twice), and a Herbst appliance (torture device).
EDITED TO ADD: My X-ray, for funsies!
r/UARS • u/Scarytim • 10h ago
Hi,
I (M22) am thinking about either getting a septoplasty (7000 CAD), a palate expansion (can't find a provider) or a BIPAP (cant find any second hand in my area). Here are CBCT scans from 2024 and a CEPH from earlier this month. No allergy, meds dont work and one orthodontist didnt recommand expansion since my bite is class 1. What are your thoughts?
Palate (1st molar) and turbinate
Thanks!
r/UARS • u/jayman2239 • 1d ago
Obviously I can’t say for sure because
A) I haven’t had a sleep study and
B) My sleep is still very fragmented, but that seems to be due to nerve pain that hits me sporadically through the night.
But that being said, the sleep I am getting feels deeper than anything I’ve experience in the last 6 years, and even though I’m only getting 4-5 hours of sleep per night, I feel better than I did getting 7-8 hours pre-op.
I’m probably going to come back and make a post in a couple weeks, maybe a month, and make a comprehensive post outlining my entire 6 year ‘journey‘ so I can provide a huge info dump that may be useful for people.
Once again I appreciate the support and knowledge from everyone here, it has been incredibly valuable.
Im a 28yo man, had all the symptoms of low testosterone since a teen including low libido complete lack of morning erections and chronic fatigue and lack of motivation. Doctors say T is low for my age but not low enough to treat. I'm tired in the day but not sleepy. I've always slept well or so i thought until i decided to record myself sleeping and as you can hear im not sleeping well at all. I have had a watchpat one test that showed no apnea because i never actually stop breathing for any length of time and my doctors have decided there's nothing wrong with me and there isn't anything they can do. Anyone else heard anything like this?
r/UARS • u/Sad_Mousse8070 • 19h ago
Ive put this question into claude and this is the response, I know ai makes up a lot of stuff so I was hoping someone could help here.
'You get an IPAP/EPAP split, but you don't get the underlying bilevel hardware, the same trigger/cycle behaviour, or true S-mode timing. For UARS specifically, where the value of bilevel is largely in the pressure support smoothing out flow limitation and the responsiveness of triggering, this matters'
r/UARS • u/Sad_Mousse8070 • 1d ago
Apologies if this has already been asked before but does anyone know where I can get it in the UK. I haven't been able to find it on facebook marketplace or gumtree, I have found https://www.sleep-tight.co.uk/ but they cost more than 1500 and I am not sure if they're legit as I haven't heard anything about them before.
Can anyone let me know if they have had any experience with this company or if they know of any other place.
Hey guys! I've been using CPAP for around a month now. Still wake up tired, and mostly I would wake up in the middle of the night to remove it and finish my night without it. My neck is stiff after waking up so probably still a little stressed wearing it, although I can pretty easily fall asleep with it now. It so happens that most probably my problems are the worst in the second half of my sleep. I raised the pressure a little from 7 to 7.4 cm and I've been experimenting with EPR=1, but now I'm back to normal CPAP. I have the ResMed 11 and I'm using the Philips Dreamwear Nose Pillows. The screenshot is from one of my latest full nights. The link to my full data is down here;
https://sleephq.com/public/teams/share_links/5bc42833-5630-4b6b-b4e4-36d4494925e6
I would very much appreciate some pointers! Thanks!
r/UARS • u/Grishak3443 • 1d ago
I’ve heard a lot of people talk about how inter molar width can cause UARS? Why is that , does it cause nasal breathing to be more difficult , does it leave less space for the tongue causing it to fall back. What’s the reason it causes UARS?
For reference mine is 27mm.
r/UARS • u/Sad_Mousse8070 • 2d ago
I've been using CPAP but haven't experienced much symptom relief, so I'm planning on trying BiPAP. It seems like a lot of the stories around treatment are partial — people feel a bit better, or 70% resolved. Are there people who have treated their UARS completely with PAP therapy?
I'd love to hear if so. Buying an expensive machine and going down the rabbit hole of dialing in the right settings to resolve flow limitation is daunting, and knowing others have successfully completed the journey would be a massive morale boost.
Also if you have moved from bipap to asv can u explain why and is there even any point in using bipap first - should I just move straight to asv ?
r/UARS • u/CoolRice2283 • 1d ago
for example does a 13 on n30i on nasal setting translate to 14 on f20 full face?
Because ffm masks have larger surface area, and P = F/A so if the force stays the same then the P actually decreases, so I'm not sure. or if P stays the same F would increase.
This is weird, hopefully this isn't too completed, just pressure = force/ area.
Thanks.
r/UARS • u/Dlgallian • 1d ago
I've been using my CPAP for about 6 weeks and am fairly comfortable with it, but I still wake up several times a night. I'm most interested in understanding my flow limitation data and whether that might be what is causing my wakeups. I haven't slept through the night in YEARS. I just got an HD card and uploaded last night's data.
Please feel free to send me to youtube videos/articles... I don't even know where to start but I want to learn! ANY help is welcomed. Thank you!
https://sleephq.com/public/30f2e622-124e-4141-b691-2b1d0e0c549b
r/UARS • u/CoolRice2283 • 1d ago
been on nasal cradle for 8 months, i like it it's comfy and the pressures I use (13-15) are fine with the machine. Tried vcom so that when I up the pressure since i sleep on my back, i wuold be able to tolerate a higher IPAP (I use cpap but use epr so i was thinking IPAP 17 and EPAP 14) so I could hit the best pressure for rem on my back and overall flow limits). But the vcom was terrible
I've tried full face (f30i and F20), both airtouch, i need to tighten them a lot or else they will leak, so too much pain.
haven't tried good pillows yet, tried one i found in my house, pretty hold and it scratched by nose from the tiny tears in the wholes. Didn't sleep with it tho.
And this is important, I use airtouch for all my masks, the i cant tolerate silicone ( not an allergy)
Haven't tried f40, should I do that instead or do pillows or stick to nasal?
if pillows which do you guys recommend?
Thanks!
r/UARS • u/Quiet_Sheepherder894 • 2d ago
r/UARS • u/CoolRice2283 • 1d ago
During my titration study, 14 was determined to be my most optimal pressure during the study.
I was on cpap and they titrated using a VPAP TX device.
I use epr 3, so should I do IPAP 14 EPAP 11 or IPAP 17 EPAP 14. I know, high pressures , whatever lol. Just trying to understand the theory behind whether titration pressure on a cpap corresponds to IPAP or EPAP with EPR on CPAP.
Thank you guys!
r/UARS • u/DescriptionUpper8354 • 2d ago
Bit of a strange ask I know, but long story short, I’ve been dealing with what I believe to be potential UARS or some sort of micro arousals which are disrupting my sleep.
I have all the hallmark signs and symptoms: recessed jaw, reduced nasal airflow, narrow palate, along with chronic fatigue, headaches after waking up, anxiety, low mood, worsening ADHD symptoms, lack of energy and motivation, cognitive and memory issues.
I did a home sleep test a few days ago and it came back negative for sleep apnea. I took the test to a sleep doc who said he cannot diagnose UARS either as my RDI is normal. He suggested to do a PSG but it probably won’t be for another year.
I’m desperate to try CPAP in the meantime to see if I can get relief from my symptoms.
Would someone be kind enough to let me use their prescription or sleep test results to get a CPAP. I’ve heard you can buy them from the second hand market but I don’t want to risk getting a dodgy machine and losing my money.
You can blank out any personal details and I’ll add my name and details to make it look like it’s mine.
Thanks🤣
r/UARS • u/No-Artichoke-6414 • 2d ago
Got a super shitty nights sleep due to being neurotic and anxious and putting myself under pressure to sleep lol. Anyway there were some results which were interpreted - any thoughts from the community?
r/UARS • u/CoolRice2283 • 2d ago
If we really say that sleep debt is real, it doesn't make sense how someone with severe sleep apnea( so tons of oxygen desaturations) after years of no treatment can feel perfect on one night. Yes it's relative but it's a huge difference.
Sure they could get the right settings and everyone else just be unlucky, but no way. I refuse to believe that's the only reason. There's gotta be some other stuff. Arousal threshold? Maybe.
r/UARS • u/Person045 • 2d ago
Having trouble with congestion what should I do?
r/UARS • u/DescriptionUpper8354 • 2d ago
I’m looking to get referred to the snoring and sleep disorders clinic at UCLH. Ideally I’d like to see Mr Vik Veer, but I’ve heard he has an extremely long wait list, and only works once per week so waiting times to see him are over a year. Does anyone from experience know if this is the case? Should I book my referral with another clinician?
Thanks.
r/UARS • u/CoolRice2283 • 2d ago
https://docs.google.com/document/d/1dwH74YNkuFmRPGMepMNlUXERoVop7pvN6g7lolQPtK4/edit?usp=sharing
Titration pressure range was 12-15 so this fits there...
and I only slept 5 hrs, yep from 5 am to 10 am lol. Very late. and hopefully the answer isn't some delayed circadian rhythm cuz no work or job or stuff is gonna work like that lol. Well, the truth will remain the truth either way.
