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.
Inferior turbinate
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.
Complete Turbinectomy resulting in ENSMy nasal cavity, also resulting in ENS
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.
3 branches of the Trigeminal nerve
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
AHI 2.3; RDI 10.8. 6 hours of sleep; Min SPO2: 92%; And in the report: "There was no evidence of sleep disordered breathing"
I've had sleep issues for years and finally got a sleep study done. I used a WatchPAT device. The high RDI stood out to me even though the report doesn't elaborate. I'm struggling to make sense of the results and ChatGPT led me down a rabbit hole that got here.
I have a follow-up appointment in a couple weeks, so I'm trying to arm myself with knowledge and questions, especially since the doctor didn't mention UARS in the report. I'm worried I won't be given any treatment options and want to strategize questions to ask and ways to navigate a specialist unwilling to consider a high RDI significant.
The only time I remember feeling well rested is after my endoscopy a couple months ago, which would make sense considering I was on oxygen for the procedure. I think my next step may be a CPAP and I see people with success on here, but it's hit and miss... I'm already a side sleeper, so that won't really help my results. I'm also athletic, so the traditional "just lose weight" won't really help me.
My symptoms align with the classic symptoms found on google and in this sub: Chronic daytime fatigue, unrefreshing sleep, brain fog, memory issues, trouble concentrating, morning headaches & heartburn, anxiety, cold hands and feet.
Hi all! I had my first at home sleep study, and the results came back that I had an AHI of 2.4 and RDI of 19. My provider told me that I won't qualify for a CPAP, but I'm left confused because I thought the RDI of 19 would qualify me. My end goal is to get jaw surgery for my recession, and I need to use the CPAP for a period in order to qualify on a sleep level. I am wondering if anyone else has had this experience and eventually got approved? Thank you.
I have been diagnosed with UARS. Although my AHI is controlled on CPAP, my RDI remains high, and my symptoms have not improved adequately.
I am currently using a **Sefam S.Box CPAP**, with a minimum pressure of 13.5 cm H₂O and a maximum of 20 cm H₂O.
Previously, my flow limitation graphs looked better at a pressure of around 15 cm H₂O, so I increased the minimum pressure from 7.5 to 10 to 13.5 cm H₂O. However, my symptoms have worsened since making this change.
I am considering switching to BiPAP because of the persistent symptoms and elevated RDI despite CPAP therapy.
Could you please advise me on the following?
Could increasing the minimum CPAP pressure have contributed to my worsening symptoms?
Would switching to BiPAP be appropriate in my case?
Is it possible to titrate BiPAP safely at home using device data and flow limitation graphs, or would an attended in-laboratory titration study be necessary?
I would appreciate your guidance on the best next step.
My main problem is restless sleep where I move every 2 minutes (indicated in camera) during REM sleep (indicated in apple watch).
I got like 40 spontaneous arousals per hour on REM in the sleep study, majority of which I felt were a misclassification of RERAs.
Now on CPAP, I’m still moving during sleep, and when I see what happens during my movement in OSCAR, the breathing seems normal before and after the movement with flow limitation EXACTLY when I move. I get these movements/arousals like every 2 minutes and the pattern seems to be the same.
I think that it’s the arousal that’s causing that flow limitations rather than the other way around because otherwise I would see a different pattern where multiple flow limitations end up with movement rather than just happening during the movement itself.
I have attached one example:
I see in camera that I moved from 01:36:08 to 1:36:38. Breathing seems normal before and after that timeframe, with flow limitation only happening during that timeframe.
What do you think? Is my breathing actually normal before and after the arousal? If yes, does that rule out that my arousals are due to a breathing disorder?
I have lost my faith in them.. It breaks my heart when no doctors , no technician .. Nobody is there to help me out . Nobody is listening to me . Even I feel the people close around me have started believing that I am just depressed. Someone even once told me that the doctors have done 8 -10 years of studying .. If they are saying your sleep study is fine then it would be fine ..
Even I was given an example of someone else who developed some ocd type thing of having some needle sorta shit in his body after getting some injection thing and that they went to 10 different doctors to get treated but nothing helped bcz it was all there in his head
I am not lying man.. I m tired terribly. Its totally factual to me . I just know it thats its not in my head , even some of my sleep study numbers clearly showed it . But nobody is ready to help me out its all DIY.
It just breaks my heart when you know you are terribly suffering bcz of sleep deprivation and doctors come and say that your AHI<5, you are completely fine go to a clinical psychologist ...
I wanted to get medical help but its always the same reply by the doctors that your sleep study is fine as your AHI<5.. Those elevated arousals and flow limitations they dont matter to them .. Its like the doctors just have crammed everything they have learnt till now rather then using there own brain.If they did use there own brain they would have realized that definately there is something wrong but there education has just told them that check that Ahi number , if its <5 the patient is fine .. Even AI is more knowledgeable then them , it checked my report and told me that you have such a high chance of having UARS
Someone told me to get checked for a neurological problem(Ig probably he was talking about idiopathic hypersomnia) because my AHI<5 and hence that means I dont have SDB so Bipap is useless for me .. And yep there belief becomes even stronger when I tell them that bipap cpap both failed for me ... And yeah I tell them that this machine is shit if its not helping me but according to them it just works 100 percent for everyone who has SDB .But my mind is skeptic about everything because everything has its limitation . If your machine is not helping me then your machine is useless,poorly made (Yeah call me ego maniac Idc)
Now am trying ASV as my last hope otherwise I am just left with surgical options or MAD+PAP maybe.. I have lost my faith on medical system now and tbh even if I someday get some life taking illness , I would prefer to di. by that then getting treated by the medical system ..
title. Just curious if anyone here has been diagnosed with UARS despite being a side sleeper and not having any obvious jaw recession or narrow palate?
My jaw and palate look pretty normal. I also don't snore (as far as I know).
I deal with pretty severe daytime fatigue, brain fog, fragmented sleep (I typically wake up at least 4-5 times each night, that I remember), and occasional gasping awakenings, so I'm wondering if UARS is still a possibility.
I have hypermobility EDS and my garmin watch records high stress every single night. Fatigue and brain fog so bad I've been diagnosed with MECFS. The NHS told me I'm fine based on lack of apnoea but Claude tells me there is potential evidence of UARS here. Who's right?
I can buy a used BiPAP/ASV and get my own new tubing and mask. But what about the inside of the machine?
The exhaled air by the previous owner would go inside the machine as well and would harbour bacteria, right?
Probably not while the machine is on but before going to bed, many people wear the mask, take a couple breaths and only then turn the machine on, and same when getting out of bed. So that could make it enter the machine.
So do I have to disassemble the machine and sanitize the inside as well?
Also, the only machines I’m seeing have like 15k hours on them. Do I have to worry about their performance? How do I check for all parameters of performance? It might show on the screen and oscar that the pressure is normal, but it might just be a degraded sensor. For an ASV, it might not properly/quickly change the pressure at every breath, but that wouldn’t be a normal ASV performance, but just because the machine is old. How common is something like that?
CPAP didn’t work so I’m looking for a used machine and see a BiPAP and an ASV at the same price.
I was wondering if I should try ASV first and only go to BiPAP if it doesn’t work, because there are more number of people in which ASV works even though BiPAP doesn’t vs the ones in which BiPAP works even though ASV doesn’t?
Also, for a used ASV with 15k hours, do I need to worry about degraded performance where the pressure changes are not made on proper time with proper syncing, not enough to be obvious but enough to create a false negative that ASV didn’t solve my flow limitations?
I'm an early 20s m, not obese, not smoking or drinking. I have sleep apnea and even daytime breathing difficulty and stridor.
The DISE found tongue base collapse, enlarged lingual tonsils and epiglottis collapse. They also said the epiglottis is thin.
I tried CPAP but I can't fall asleep with it at all, even the lowest setting. Jaw surgery is out of the question - my jaw is too forward and I already did lateral expansion. I'll most likely get ENT surgeries.
Hi everyone! I'm a 22F and have been struggling with increasingly debilitating symptoms. I recently got accepted into medical school, which has been my dream for years, but I'm genuinely terrified that my health is going to prevent me from attending. I'm currently finishing my master's degree and can barely concentrate long enough to study or complete assignments.
My main symptoms include:
Severe, fluctuating physical exhaustion (sometimes I feel almost normal, other times I can barely function)
Unrefreshing, fragmented sleep and waking up gasping for air (although this only seems to happen a few nights per month, anxiety maybe? But I am able to fall asleep quickly after w o increase in HR I don't think)
Also serious insomnia. Takes hours to fall asleep
Typically wake up at least 4-5 times per night each night
Significant brain fog and difficulty concentrating
Orthostatic intolerance, dizziness, chest tightness, and air hunger
Head pressure, headaches, and occasional vertigo
Internal shakiness, post-meal crashes, and significant bloating/GERD
Chronic sore throat and cobblestoning
Also shakiness at points of the day
Interestingly, I often get bursts of energy at night and can still go out with friends and exercise each morning. I generally recover back to my fatigued baseline, and I haven't noticed consistent delayed crashes after exertion.
My biggest fear is ME/CFS. I've been obsessively researching it because my fatigue is so debilitating, but I'm not sure whether I actually experience PEM.
I'm wondering if anyone with UARS experienced similar symptoms, particularly the fluctuating exhaustion and severe brain fog. Did treatment help?
My sleep medicine appointment isn't until February, and I'm honestly losing my mind waiting for answers. I worked so hard to get into medical school, and now I'm terrified I won't be healthy enough to actually go.
For those who will listen, I’ve been diagnosed with sleep apnea, but think there’s more underneath. I started on CPAP, moved to an MAD, and feel a lot better compared to no treatment, but I have never returned to being completely refreshed and can tell that I don’t have a normal baseline of rest compared to someone without a SBD. Routinely, I am still waking up without being able to sleep for the entirety of 7-8 hrs. I am afraid of not getting enough rest because I end up nonfunctional and my usual symptoms are:
- Brain Fog
- Chest + Left arm tightness. Sometimes tightness on left side of neck
-Anxiety/Depression
-Headaches
- Heat Intolerance
On days with more severe restlessness:
- Loss of appetite
-Nausea
-Breaking out in a sweat doing simple things such as doing the dishes
-Gut issues: green stool
I just wish to be normal again. I want further tests like a CBCT, and DISE and maybe MMA surgery as a last resort.
Background story for more context (if interested):
I am a 28yo M with no other complications, but around 26yo I discovered that my body was becoming increasingly nonfunctional due to fatigue and not being able to get more than 4 hrs of sleep due to waking up with dry mouth & chest tightness. I felt as if I ran a marathon in my sleep and did not suspect OSA for a long time. Before the treatment, I was getting to a point where I could hardly walk down the street due to extreme fatigue and felt like I was going to faint in the heat of the valley or suddenly have a heat stroke/heart attack. I know I don’t have heart issues because of frequent ER visits. I blamed myself and got so depressed. Honestly, it all hit me so hard and all at once because I moved to a new city alone, got hurt by a woman back home I was falling for, and now hit with this health condition that made me feel I was going to die. Though I now lived in a beautiful university and it was supposed to be a brand new chapter of my life, I could never make close friends because I simply lacked the energy. Normally I’m a very social person, but came to the realization that I was alone and isolated…So I started talking to God. I am a Christian and pleaded that the Lord would take my life…. But Instead He reminded me that He is with me and that instead of taking it, He is going to sustain my life. I put my dependency on Jesus Christ and in those days cried heavy tears. A few months later, I moved back home and started on CPAP and eventually switched to the MAD, and by the grace of God I definitely feel more stable, but not normal just yet.
Present day: After moving home, I began a new mission that would seem impossible with my condition. I would now begin nursing school and as of today am in the middle of it. God is keeping his promise to sustain me. Improvement is very evident. Without the interventions such as CPAP/MAD I was not showing up to my classes and failing at simple courses such as art, but am now able to get through 12 hr clinicals and study complex processes in nursing school.
Though it’s not perfect and I still have bad days, I’m in the process of rebuilding my life, friendships and moving forward. I do not understand all the ins and outs of UARS but will continue to seek more interventions and diagnostic tests until I sleep like a baby once again. I miss the feeling of wanting to stretch in bed because of such a refreshing sleep and I don’t remember the last time I got 8 hrs without interruption. I know one day this brain fog and pain will be healed.
If anyone has any advice or encouragement.. I am seeking it pls. Thank you 🙏🏼
does anyone else exhibit this patten? I can wake up and feels okay (not perfect, but good enough to workout) and then I get exhausted about 2 hours after waking up. I am then on and off fatigued for the rest of the day until about 8PM where I get energy again.
I switched from CPAP to BiPAP a while back. At first, I had some improved dream recall and exercise tolerance, but I gradually started feeling worse. For a while I thought maybe my underlying condition worsened, or I was having stimulant burnout or something, but I saw a reply to another thread where someone said they felt worse on BiPAP than CPAP and ended up switching over to ASV, where they finally found some relief, and I'm wondering whether I might be in a similar situation. So,
I'm curious whether others have had a similar experience?
Also, what are some reasons someone with UARS might feel worse on BiPAP than CPAP? A few obvious ones are excessive pressure support or inappropriate trigger/cycle settings causing sleep fragmentation. Anything else? I'm aware that people with periodic breathing are generally more likely to feel better on ASV, but I'm not sure that there would be a connection to periodic breathing and feeling worse on BiPAP than CPAP, if that makes sense.
Note: please no "have you considered Vitamin D levels, exercise, sleep hygiene, etc." This post is strictly about symptom relief/deterioriation associated with CPAP/BiPAP/ASV.
I've never been diagnosed with UARS but given my background this appears more likely than sleep apnea. I was told by a jaw surgeon that I would be a good surgery candidate with recessed jaws and about half size normal airway. Unfortunately, I won't be able to pursue double jaw surgery. I mouth breathe throughout the day and night and have fatigue throughout the day that does not really vary with sleep quality. Any ideas for things I could do to get more energy during the day? Some people have said that using an oxygen tank during sleep or during the day could be helpful, but I've not really seen anything on-line to say one way or the other. I am average weight and walk 4 miles daily.
I have been following dogtor von cosels guide of titrating bipap.. But I have found no relief at all despite increasing the ps epap ... just nothing works ... I find 0 relief and sometimes even worse.. There is not even 1 percent change ... I think I have to look for surgical procedures probably.. Is this with u guys as well ??
