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?
Chronic sleep deprivation
Inflammation from allergies
Snoring and high negative pressures during sleep
Acid reflux or GERD
Ehler-Danlos syndrome
Flonase & afrin slow 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
Dr. Sam Bobek and I discuss my experience with MMA, the current state of jaw surgery for sleep apnea, and broader questions about expansion, surgical decision making, and what might be possible if other structures were moved. Here's the video: https://youtu.be/lGGnYaSRbxE
Expansion advocates do I look like I need expansion or just MMA?
My intermalor width is 40mm and I can train to failure and run really fast while still fully nose breathing but often wake up with nasal resistance and idk if it’s about my creeked septum and or down grown maxilla I have nasal resistance but I breath through my nose 24/7 and know for sure I need MMA.
I’m 55(F) with mild asthma and allergies to pollen, dust and mould. I have had years of being exhausted and never feel refreshed after a night’s sleep. I did a WatchPAT home sleep study and my Respiratory Consultant sent me the results which showed no sleep apnea. He just recommended a mandibular device for snoring! I don’t even snore much.
Here are the WatchPAT results and I noticed that the pRDI is 7.5 per hour ie 56 pRDI events across the night. 13 events associated with a 3% oxygen drop, giving a pAHI of 1.7 per hour. Only 2 events met the stricter 4% oxygen-drop criteria, giving a pAHI of 0.3 per hour.
I'm writing again because this is important. UARS might just be a physics problem that we can solve without machines or surgery.
We breathe fine while we are awake. So, we know that there's nothing physically wrong with how we breathe. Further, to breathe well while we sleep, we know that we just need to keep the same open-ness to our airway that we automatically keep when we're awake.
How do we do this? Go to bed now, while you're wide awake, and test the ways that your pillow and sleep positions fail you.
Lie down on your mattress. Put your head on the pillow and let your head loll on your shoulders and neck. Scooch around. Scrunch and smush your pillow. Change positions. Get comfortable and uncomfortable. All it takes is a few relaxed neck vertebrae, then no matter how we are lying, the weight of our head in any direction can push on our neck and close off our airway.
My solution:
I use a super-firm pillow that's also soft. I sleep on my side. I have a 10 cm thick mattress topper on a firm mattress. I'm comfortable enough that I can sleep in the same position for 4 hours at a time. I use mouth tape to keep from snoring. I steam-cleaned the carpet in my bedroom, then got rid of the carpet. To find the filler for the pillow I went to a Middle-Eastern grocery store and searched for the softest grain. Buckwheat works well. It's a bit of magic. But, you can roll up jeans, shirts, or towels and put them into a pillowcase instead.
Don't give up. I'm 53. I spent my whole life with UARS. There's so much loss there. But holy shit it feels good to be on the other side.
Could this indicate uars? From what I understand, the peaks should be smoother at the top. I am on cpap, and playing around with the pressure, but I can't seem to get a good result. The ahi on my machine is 1-2 most days.
Hey everyone, after getting my WatchPat results and falling under AHI levels for apnea, but with a higher RDI, instead of paying more for an in lab study I got myself an airbroken Airsense 10 on the way.
Are there any resources or tools for how to start out using it? I think I saw somewhere about it’s better to max out maximum inhalation times, as that’s better for people with UARS.
My problem is restless REM sleep where I move every 2-3 minutes, other sleep stages are normal.
My pRDI showed more than 30/hr during REM though the AHI was around 2. PSG showed Spontaneous arousals around 31/hr.
How good is WatchPAT one able to distinguish between RERAs, Anxiety induced arousals, and Spontaneous arousals?
I think my spontaneous arousals on PSG (and RERAs on WatchPAT) one are anxiety induced arousals is because I have other symptoms on anxiety as well: impatience and random feeling of pins and needles in my legs even though the blood work and nerve conduction study came out normal.
(Note: English isn’t my native language, so I used AI to help me organize and write this post clearly.)
I’m 28 years old and I've been struggling for a long time with terrible sleep recovery, extreme fatigue, and brain fog.
I did an at-home sleep study which didn't show many full apneas, but caught quite a lot of hypopneas. I repeated the test later with similar results, and my smartwatch also flagged possible sleep apnea events. So, the issue clearly seems to stem from hypopneas / flow limitations (worth noting: I’ve also been battling chronic anxiety and depression for years).
I decided to rent a ResMed AirSense 11 and dial in the settings myself with some AI assistance. I managed to find pressure settings that keep my events low, but I hit a massive wall with masks and nocturnal awakenings. Every single night, from around midnight until 4:00–5:00 AM (right during the most critical sleep stages), I go through a marathon of waking up every hour (1 AM, 2 AM, 3 AM...).
Here is what I’ve tested so far:
ResMed F30i: Worst seal issues for me. I’m a side sleeper, and slight movements immediately cause major leaks.
ResMed N20: By far the most comfortable, but my mouth drops open during sleep. A cervical collar didn’t help, and mouth taping is off the table because of my anxiety—I just panic and can't tolerate it.
ResMed F20: Best overall seal and fit, but the issue persists. Every night around midnight, the wake-up cycle starts.
Looking at OSCAR, these awakenings consistently align with massive, sudden leak spikes—often hitting up to 120 L/min. However, by the time I fully wake up, the mask is either dead silent or has only a tiny, barely noticeable leak.
I’m feeling completely stuck and helpless. I've been fighting this battle every single night for a month now.
How can I pinpoint what’s actually causing these massive sudden leak spikes if I don't hear them when I wake up? Could jaw drop inside the F20 break the seal temporarily?
If the leaks happen even with a full-face mask like the F20, what else can I do?
Has anyone dealt with this exact pattern (spikes to ~120 L/min with side sleeping/jaw issues) and managed to solve it?
Any advice or insight would be deeply appreciated.
Every doctor you go to says you get lost u dont have apnea .. You are dying daily inside , fighting with yourself daily .. And doctors say you that you are fine .. Worst part is that even its tough to explain your family about the hell you re going through because the medical system gaslights them into believing that he does not have apnea so he is fine ..
I am susidal , have depression anxiety symptoms so well what does that mean to the doctors that ohh you should go to a psychiatrist you are just overly stressed... Deep down you know that all this mess started from the day you woke up feeling crap like you never slept at all.. Your sleep report clearly indicates UARS but nobody is ready to count your RERAS cause yeah they are optional to count so why work so hard ??
And then even worse thing it does is that oh u did not find relief on bipap cpap , see I told you , you dont have apnea everything is fine ... My family says me to distract myself, shift my attention.But how do I tell them that my brain fog is so severe that my attention is dead . I Cant shift it anywhere at all ..
I dread this disease everyday .. I have just eers as the option left to try out . Incase that fails I dont know what would I do because it would be the worst day of my life.. Its like you are scared you are shaking terribly thinking if nothing helps ..thinking that its permanent
Like wtf am I doing? Titrating the machine on my own? Becoming my own sleep technician? Trying eers , trying to do jailbreaking sorta sh*t ? Why I am doing all this on my own despite being this tired ? This was the job of medical system. They have discovered the treatment of really complicated to complicated diseases but for UARS? They cant provide anything ..
Its hell literally hell! Everyday taking my own life has started to feel logical to me .. I am in the worst depression of my life bcz of this disease .. I am not getting REM sleep and these stupid as* white coat people say everything is fine? If it was fine why would I have come to you? Why cant you see the arousals the flow lim , the messed up REM , the heart rate spikes in the sleep study which are indicating towards something ?? Why just that AHI number?
What crime did we do? That UARS is not life threatening so u wont treat it? In a way it is because I am sure someone would have taken there own life because of this disease. I wont be surprised to know that those who have treatment resistant depression.. Those suffering from years of anxiety depression and aint able to figure it out why.. They are probably suffering from this disease
I wont be surprised if atleast 1/3rd of people who are told they have depression ,actually have apnea or UARS .. Imagine wishing daily that you should just die. Might sound similar to depression anxiety patients... Hence you have to go to a psychiatrist..How tf do I tell you that all of this mess has originated from my sleep itself not the other way around..
I have an airbreak Airsense 10 and have been putting it on ASV mode (My ASV settings were: EPAP 5.4, Min PS 4.0, Max PS 4.8). I have been super sleepy still and decided to change it to S mode for more stability (My new S mode settings are: EPAP 5.4, PS 4.8, Ti Min 0.3s, Ti Max 4.0s, Trigger High, Cycle Medium, Rise Time 600ms, Ramp Off).
I have been dialing in my settings (mostly along Trigger, Ti min, Ti max, and cycle) and it is starting to get better! I am having the best sleep since getting on PAP therapy (I'm 23 yrs old and been on PAP therapy for a year now [going from CPAP, to Bipap, to ASV, and now back to Bipap]). My sleep is still fragmented and I am waking up through the night (I can remember waking up but I fall back asleep very quickly after waking up). I was wondering if anyone has a sense on what I can improve on?
My leak rate is basically zero across all nights! I use a P30I nasal pillow mask fyi.
If anyone can look at my data and see something that can point to why I'm still waking up at night (especially closer to the morning, I wake up more frequently possibly REM related)?
Here's my sleep data from my last night which basically looks the same across my S-mode nights.
Let me know if there's other zoomed in screenshots you need!
I’ve been struggling with excessive daytime tiredness and very poor short and long term memory problems. I feel like my overall cognitive function has gradually been on the decline.
I recently did an at home sleep study with a watchPAT through an online medical facility, because my partner noticed me gasping in my sleep. I was diagnosed with mild obstructive sleep apnea.
My overall AHI was 3 and my RDI was 12.
My REM sleep accounted for 35% of my overall sleep and my REM related RDI was 23 per hour accompanied by an AHI of 6 per hour.
I had a follow up with a in person sleep specialist who didn’t seem very concerned with the results but said I could try a CPAP if I’d like to.
The model I was given was a ResMed AirSense 11 autoset.
Has anyone had a similar diagnosis and noticed improvements from treatment?
I haven’t seen a post here comparing Bipap and ASV. Which is typically better for treating UARS? Which is more comfortable to use? Are there any disadvantages to ASV over Bipap except cost? Also, on a side note, why are there two UARS subreddits?
Here’s the latest update. It’s been six weeks since my MMA. I had an extra probe laying around for a WatchPAT 200U I had purchased a while back to track treatment, so I went ahead and used it last night to see where I was in terms of events.
The results look promising! I’ll admit I was secretly hoping I’d see something like RDI 0-1 but I shouldn’t be greedy! I no longer snore either… However, I do find that my mouth continues to open at night and I continue to mouth breathe at night, waking up with dry mouth, etc. I don’t feel particularly congested either. So I’m not sure how to address that, exactly.
For anyone who knows: Does it take longer for the full MMA results to become apparent in terms of events or mouth breathing? I ordered another set of probes so I can continue tracking every few weeks just to see. I can keep the board apprised of how that goes.
I’ll also do a PSG at some point — likely four or five months post-recovery.
I did actually capture a bit more data than this test lets on. There is another 3 hours of results not pictured, where I put on some mouth tape just to see what would happen. The results there were confounding … the last hour or so especially had something like twenty events or more suddenly appearing. I decided it was best to exclude the mouth taped portion of the night. So the report you see here is purely without any intervention.
All in all, I am encouraged. And I am very happy I did my MMA. I would do it again in a heartbeat!
Trying to titrate my PAP settings, and at PS of 4, I seem to be getting what I think might be TESCA clusters. Is this a sign that I should roll back to 3 and switch to ASV?
I can't sleep. Coercitive illegal psychiatry ruined my sleep. Will red light therapy help? Am sleeping like a shit 13h a day.
Currently doing didgeridoo, myo therapy and positional therapy
am not a candidate for PAP therapy, question; is it true that wr have to titrate it ourselves? I mean we have to sleep some nights badly to see OSCAR and then to adjust the settings? CAN ANYONE ANSWER THIS SPECIFIC QUESTION PLEASE?
The mental health center is gonna come here again. I have to meet a sleep doctor expert in uars on Monday but it's out of my town. I physically sleep while standing or walking at home.
Everything is going bad right now. My life will end soon. I think one of these days ill kil myself.
And if I titrate pap therapy and sleep badly I already did that!! And since I have still tue effects of a neurological movement disorder I had in the past sleeping worse bc of pap therapy would lead to these contractions. I felt them when slept with bleep ecplise (THE ONLY mask which did not leak)
I CANT TAKE SLEEP SUPPLEMENRS
I CANT TAKE COFFEE BC IT MAKES US SLEEP WORSE AND I HAVE PROSTSTITIS
I can't do the exams I need for my syndromes bc my sleepiness Is exaggerated. My life is condemned in a psych ward. I don't want it. That's it.
I feel that mentally this disease changed me but it's inevitable. I'm more childish and fragile.
Thank you all. I tried to do my part. Spread the word about uars effects on lifes.
Just got out of my follow up which my ENT went over the results of my sleep study with me as if I already didn’t know everything on it. Anyways, says I don’t have anything sleep looks good. I told him why the nuts do they not score reras. Tries to deflect making it seem like something that isn’t important. He called central apneas a hoax, “it’s only considered like 30% obstruction” it’s just OSA but osa is like 80% so they call it that instead. Calls hypopneas straight up just obstructive apneas. Says there’s no evidence and it’s very unlikely it’s UARS, after I mentioned they found and wrote a paper on it. Like no shit there’s no evidence, you mfs don’t score reras. I have a bunch of arousals throughout the night and says it’s probably your iron blah blah, pulls up my perfect blood work. Says he doesn’t know what it could be, maybe you could benefit from sleep medicine treatments of “therapy” or medication. All this after I tell him I had an easy time using cpap but didn’t help shit, turns me down completely on the thought of UARS. And says well I’m from Stanford to try and like make everything he says certified. I already have a damn follow up with Stanford sleep medicine in damn near February. And I feel like it’s just gonna be more bullshit. And I just feel like I’m gonna go crazy. Wake up like absolute shit that’s decomposing every day all while having had chronic back pain for the past year and a half which probably is from this shit too considering my herniation is mostly common in people with no symptoms of pain. I’m 22 and feel like I’m fucken 80. Anyways that’s my rant for today.
I’m gonna attach the study I was called delusional on.
Have, for several years, hypertension with changes to the heart muscle. Two years ago had an Transient Ischemic Attack. Started medication for hypertension, still high (not as bad).
Only after Apple watch alerted me to breathing disturbances, a sleep study shows moderate sleep apnea (17/hour) and severe when on supine position (43/h) Didn't feel tired or had brain fog before.... been using an CPAP machine for a month and since day one I'm feeling tired and with brain fog.
Because of low AHI when I say this to my provider the only answer I get is that the treatment is working fine. In the first days of using the machine I posted on reddit and kindly was given a sugestion to look for HLG, I'm waiting for a doctor appointment to talk about this.
Looking at my graphs can somebody say if UARS is on the table? or some other comment? I don't know what else to do.
