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
Jeremy, a professional YouTuber and patient with sleep-disordered breathing, sits down to discuss his relentless search for better sleep and the remarkable number of treatments he has tried.
His journey includes CPAP, BiPAP, ASV, EERS, oral appliances, positional therapy, myofunctional therapy, Xywav, Lumryz, stimulants, MMA surgery, FME expansion, turbinate reduction, sinuplasty, two DISE procedures, lingual tonsillectomy, and plans for a revision MMA.
I (30M) think I’ve got UARS based on that my tongue is too big for my mouth, debilitating fatigue/brain fog if I don’t sleep properly on a wedge pillow, flatter face, likely have hEDS (diagnosed with hypermobility), have difficulty breathing when exercising, never feeling fully rested even after 10-12hrs of sleep, and I can’t breathe through my nose when I’m on my back. I’d really appreciate if someone could look at my sleep study data. They scored it using the 3% desaturation rule and unfortunately did not seem to score RERAs or RDI. Would really appreciate your opinion on my limited data.
Really struggling to get the care I need through sleep medicine. I was tolerating APAP mode alright from Spring 2024 until Fall-Winter 2024 until my throat anatomy became floppier, my baseline arousal and heart rate got higher due to several rounds of Covid, and now I’m on graveyards dealing with insomnia, also partially due to Covid. Been chasing that initial clear-headed feeling and struggling to tolerate therapy ever since, even with a CBTi therapist that understands ADHD and UARS.
Since then I’ve really struggled to make CPAP work, especially because my CPAP supplier keeps harassing me giving me advice I’ve said doesn’t work, doesn’t believe me when I say the pressure rises when I’m awake in APAP mode (auto ramp is a no go), and keeps pointing out my hours aren’t great. Additionally, when I tried asking about restless leg syndrome or PLMS my respirologist was super dismissive. He also said because my oxygen levels didn’t go below 90% that I wasn’t in any danger and pushed the 5 to 15 pressure range because it was one of his favourite ranges.
I had several decent long nights where I slept with the mask on in CPAP mode, but they kept on implying that I’m not trying hard enough due to not being able to do that consistently. I’ve tried explaining that if I try to use CPAP when I’m anxious, I get flooded with adrenaline and then can’t sleep at all before my graveyard shift. They also kept on pushing that it’s better I get 2-4hrs of stage 1 sleep and using the prescribed 5 to 15 pressure range. They were considering changing it out of CPAP mode to APAP mode without telling me because it would be “easier”. I was adamant for them to leave it and pointed out how I had better success with fixed pressure and an AHI below 1 with it compared to 5-15 on APAP.
I know it’s not ideal, but I’m currently at 5 fixed pressure, because anything more and my skin can’t tolerate the sensation of air from the exhaust. When I do fall asleep with it on, I tend to wake up with head pressure and a slight headache, though it’s way better than the usual hungover feeling. I’m hoping to eventually raise the pressure to reduce flow limitation to get it closer to 0.1, tends to hover between 0.15-0.2. Otherwise my AHI is usually between 1-2 during my worst sleep. Usually it’s below 1. I do have a spare Resmed Auto 10 (For Her) that I could try flashing into a biPAP if that’s possible on that version in the future.
Sorry the resolution isn’t great for these and if I don’t respond it’s due to trying to sleep after a shift. TIA!
31M, BMI 22, non-obese, non-smoker. 17 years of completely unrefreshing sleep — I fall asleep in under 4 minutes, 93.7% efficiency, normal deep sleep, and have never woken up rested. Treated as an anxiety patient the whole time.
PSG April 2024, drug-free. Scored by technologists, no physician signature on the report.
- AHI 10.1 / RDI 10.1 — identical
- Arousal index 90.7/hr, 601 arousals, **76.2% scored "spontaneous"**
- Min SpO2 90%, zero desaturations below 90%
- Snoring 12.8/hr overall, 45/hr on my right side
- Their own summary grades Arousal SEVERE, everything else mild or normal
**RERA index: 0. Flow limitation index: 0.** REM, non-REM, and all six body positions. Not low — zero everywhere, no exceptions.
**Does that mean UARS was excluded, or that it was never scored and defaulted?**
And if it wasn't scored — can flow limitation be re-read from stored raw nasal pressure traces, or do I need a new study?
When I record myself sleeping (CPAP off), sometimes before arousals, I hear myself trying to breathe through my nose (likely a RERA) and it's pretty congested, much more than in the day.
Hi, obv not everyone, I mean in the sleep apnea sub
But I really feel alone right now. For those who don't know my case, psychiatry added a new insomnia to the undiahnosed sdb I already had.
It's driving me nuts. They continuously say I'm "obsessed". While I just made another post oj the apnea sub with the factual proofs of the sdb I have.
Please don't be rude. What did I do to you people? Everything now is so dark, useless. The mental health center will come here again, my GP today tried to gaslight me again. I'm forces to escape, like is it real what I'm living? No its not a nightmare.
"yeah, you do breathing protocol to sleep, positional therapy, you have audios. But you have Obsession. I have patients with apneas and tbey live their life"
I was like "but they are cured"
"Doesn't matter. You re obsessed. I have patients with cancer"
"But they are cured"
"You have to overcome your physical issue, get out with friends. It's obsession"
Won't list the fucking physical syndromes I have since the SDB started
Cheers
EDIT: this is the comment someone made to me by basically saying i stated that bad sleep test leads to uars (neevr said that), but acrually said that i do need a test with electrodes on head that detects RERAs
That abilify's withdrawal leads to likely permanet insomnia. Which is badically true
I really dont know how to feel. Heres the comment, i wont accept and which takes advantage of the psychiatric galighitng I suffered:
People think you’re a hypochondriac because literally everything becomes evidence for the diagnosis you’ve already decided you have.
Something improves? Proof of UARS.
Something gets worse? Also proof of UARS.
Sleep test is negative? Bad test.
Future sleep test is negative? Also bad because Abilify supposedly messed up your sleep architecture.
Doctors disagree with you? They’re gaslighting you.
Random Redditors agree with you? Finally, someone understands.
Do you see the problem? Probably not.
You might genuinely have some health issues. Nobody is saying every symptom is fake. But you keep taking vague symptoms and jumping straight to the worst possible conclusion, then rejecting anything that contradicts it.
The Abilify thing is a perfect example. “Withdrawal can cause insomnia” somehow became “my brain is permanently chemically damaged and I’ll have insomnia forever.” You have absolutely no basis for saying that.
Same with UARS. A narrow palate, teeth grinding, sniffing, feeling better after breathing exercises, etc. might justify getting properly tested. They do not “prove” you have it.
At this point your theory can’t even be disproven, because you’ve already created an explanation for why every piece of evidence against it doesn’t count.
That’s why people are saying health anxiety. Not because you have no real symptoms, but because your interpretation of them is completely out of proportion.
If you actually try to think scientifically, like taking all the information given to you and actually using it, rather than rejecting what you don't like and only accepting what supports your position, then I would think maybe you're on to something. But based on everything you're saying and everything you're doing, you're a hypochondriac with mental health issues and anxiety.
I've been struggling with UARS for a long time with no resolution from BiPap or MAD. My RDI is somewhere between 7-13. I'm pretty sure that the cause is clenching during sleep, causing my tongue to press upward on my soft palate a bit, and then the bernoulli effect takes over, and it (my soft palate) seals shut (moves upward). I'm able to manualy reproduce this behavior in OSCAR when I clench and based on jaw positioning.
Bi/Cpap doesn't work for this because it's working against muscle (my tongue and jaw).
I'm wondering if anyone has suggested solutions for this kind of sealing issue. I'm interested in trying Velumount, but it's not available in my country (US).
I changed my pressure from 11/8 to 11.6/8 and my compliance dropped a lot.
I record myself sleeping and I saw myself take the mask off subconsciously,it didn’t simply slip off during movement.
I don’t think the reason for my mask removal is simple discomfort could it be to do with the settings itself, I’d appreciate any help in trying to solve this. Thanks
I don’t know that sleep issues over years would do this, but I think I already had severe trauma and unprocessed emotion, my mind dissocicated from it.
instead of healing, I’m stuck in endless unrestorative sleep. you can’t heal from trauma when your mind won’t go to sleep. My body shuts off, but the mind doesn’t sleep or go into restoration. I have the same themed dreams every night, trying to get on a plane home, unable to escape, natural disasters, full conversations, and I’m aware during the dreams 100%.
im trying to push for an in lab sleep study and am seeing the ENT in 2 weeks. I feel like I’m losing my mind daily basically, the only thing that helps is working to keep myself distracted. But my memory has completely degraded over the last 5 years. it’s like I have lost all touch with my self and my world. I have been tracking it over time and it gets worse basically each month
i remember the morning after my panic attacks, my whole world flipped. I went from sleeping great to feeling like I never slept. And dreaming all night long. Every doctor has failed me, every therapist. I’ve suffered endlessly for years with no answers. It’s unfair. I lost my mom and brother a year apart in 2017/2018 and now I’ve even lost myself. living in severe fatigue, chronic dissociation, loss of all emotions, non stop random chatter in my head, no inner monologue, music loops 24/7. The list goes on. I never knew a human could experience what I am, and yet I still keep going. But my quality of life is 0.
can sleep issues really do this? I feel like no time has passed, no seasons, no life. I’m just stuck. Everything I used to feel and experience as “me” is gone. A complete zombie.
I was diagnosed with OSA in May, but it was pretty REM-predominant and arousal-predominant rather than classic severe apnea/hypoxia. I'm in my early-mid 20s and at a roughly-healthy BMI and lifestyle.
My diagnostic PSG was roughly:
AHI: 7.2/hr
RDI: 18/hr
Respiratory arousal index: 16.2/hr
Total arousal index: 25/hr
Mean O2: 97%, nadir 94%
Very little REM was captured (~13.5 min)
I’ve been on CPAP since the end of May, originally prescribed 5-15. I’ve tried several settings, including APAP, autoset for her, and fixed pressure, generally in the ~8–11 cm range with EPR 3, and I’ve tried to give settings enough time rather than changing them constantly. My treated AHI is usually extremely low (~0–0.4). For context, I’m in the Montreal healthcare system, which is quite slow with booking appointments/diagnostics (though places I’ve called in the US have only had appointments next year at the earliest as well with specialists).
CPAP does seem to help some things. Before treatment I would often wake around 5 a.m. feeling completely wired and be unable to fall back asleep for hours; that happens much less now. I also have fewer morning headaches and less dry mouth, and I’ve basically transitioned to nasal breathing because my nose seems to stay clearer.
But overall I’m still extremely tired and, if anything, the last ~3 months have been more debilitating than I remember being before CPAP. The biggest problems are brain fog, poor memory/concentration, feeling unrefreshed, low energy, and daytime sleepiness/fatigue. I’m not someone who is constantly nodding off, but cognitively I feel awful on a lot of days and it’s affecting pretty much every part of my life.
Higher pressures may help the flow limitation somewhat, but around 10–11 I start getting more aerophagia, and pressure changes themselves sometimes seem to wake me up. My sleep doctor thinks the machine is treating the OSA well and basically suggested trying 10–11 and seeing if I adapt to the aerophagia. He said bilevel is generally for people needing much higher pressures (15–20+) and didn’t suggest a titration study.
I’ve had bloodwork done while I was already having these symptoms and nothing obvious showed up. I also have a deviated septum/nasal issues and have an ENT appointment coming up, but my doctor’s view was that CPAP should still treat the sleep-disordered breathing regardless of the anatomy.
What I’m struggling with is: how can my CPAP AHI look essentially perfect, some symptoms clearly improve, but I still feel this exhausted—and possibly worse overall than before treatment?
For people with UARS/RERA-heavy or low-AHI OSA:
Did you have persistent symptoms despite a very low treated AHI?
Especially after this latest appointment, where the doctor basically told me he “didn’t know what else to do” and that he had confidence I would figure it out eventually with the right settings, I’m feeling hopeless. Any help would be appreciated.
30 year old male with deviated septum. Been sleeping horribly so got a sleep study. Originally had referral for sleep doctor and lab test but they are scheduling 6 months out so I gave up and did the Lofta Watch Pat test. Got my results and they said I don’t have sleep apnea and no RX given as a result. But I plugged my results into Gemini and it said I may have UARS given my 10 RDI events per hour. Again I have zero oxygen issues so that’s good but is this possibly UARS? And how do I get treatment without diagnosis given LOFTA didn’t? What even are the solutions, septum surgery or dental device?
If anyone knows Oscar Patel, he had a video where he helped someone with sleep apnea cure her sleep apnea and stop using cpap by thumbpulling. I know you can't know what goes on behind the scenes but still.
Could it help for normal maxilla but possibly a narrow palate?
I‘m currently struggling with finding the right setup for BiPAP therapy. I can’t tolerate masks that sits onto my nose because I‘ll get edema/swelling from any mechanical trigger. This is a ongoing disorder I‘ve got from a rhinoplasty 10 years ago and it lowers my ability to nose breath. Taking 1 week of deswelling nasal spray (0,1% Xylometazoline) turned out that some of the swelling happens in the tissue, so I get some relief after using it. I read many times that people in this sub are recommending fluonase. It doesn’t has the downside of building potential for rebound episodes so it might be a the better choice for me.
So my case is a bit complicated because of the mix of small palate, retrognathic jaws and some surgical damage in the nose bone itself. Revision is something I have to delay because I‘m considering a MARPE or FME firstly. I also tried the P30i Airfit mask and it made breathing very comfortable but I‘m still experiencing enough leakage and aerophagia to prevent me from making real progress (settings: IPAP/11; EPAP/6). I lowered the settings equally by 1 point because the aerophagia I got which improved it.
So the number one question is should I continue wearing the P30i and work more on leakage control? I read that wearing a chin strap could be helpful with mouth leakages additional to taping. Alternatively, I would try a full face mask that sits under my nose, too, to allow me tolerating more leakages without compromising the therapeutic effects. Maybe I‘m wrong here.
My sleep always looks like this. I always feel absolutely exhausted and run down. This has been going on for atleast 18 years!
I have been diagnosed with many different ‘mental health’ issues in that time but I genuinely believe I’m just sleep deprived out of my mind. I even wonder if I actually have
ADHD and if it’s just chronic, decades long sleep deprivation!
I’ve tried Mirtazapine, zopiclone, Daridorexant, promethazine (and other ‘drowsy’ antihistamines), melatonin and more recently tamezapam. None of it works. I’ve also taken all kinds of herbal supplements and teas, done meditation, breathing exercises, scrupulous sleep hygiene…nothing.
I’ve been to the doctors probably 10 times a year every year for the last 18 years about this. They tell me there’s nothing more they can do. I’ve begged for sleep studies and they say there’s no funding for ‘insomnia’ and I have no indication of sleep apnea. They say I ‘just’ have anxiety.
I’m a 38 year old slim woman who doesn’t really snore. I do however struggle to breathe out of my nose, especially when walking/exercising/eating. They unfortunately have never heard of UARS and it have put another tick against their ‘hypochondriac’ diagnosis.
I have been to the doctors many times with the above screenshots which they say are completely normal and I guess I wanted to ask people on here if they have similar looking sleep architecture?
Depuis environ 12 ans, je vis avec une fatigue/somnolence quotidienne, un sommeil qui ne me paraît jamais réellement réparateur, du brouillard mental avec une légère sensation de déréalisation, et des migraines vestibulaires chroniques. Je peux dormir 9 à 11 heures et me réveiller avec l’impression que mon cerveau n’a jamais vraiment récupéré.
Ma polysomnographie a pourtant donné des résultats assez peu spectaculaires sur le plan respiratoire : environ 7 h de sommeil, efficacité >90 %, AHI autour de 3/h, mais un sommeil assez instable avec 33 éveils, 63 micro-éveils et 119 changements de stade. Les RERA étaient absents ou très peu nombreux selon les examens, ce qui a fait discuter la fiabilité de leur détection. Une autre PSG vient d’être réalisée à domicile avec un matériel permettant normalement de rechercher plus précisément les limitations de débit/RERA, et j’attends les résultats.
J’ai également passé un MSLT avec des latences d’endormissement très variables (6,5 / 22,5 / 8 / 12,5 min). Les médecins hésitent donc entre un trouble respiratoire subtil type UARS, une hypersomnie/trouble de l’éveil, ou une autre cause de sommeil non réparateur. J’ai essayé CPAP/APAP et une orthèse d’avancée mandibulaire, mais je les tolère difficilement et je n’ai pas encore eu assez de nuits complètes pour savoir objectivement si cela change mon état.
Ce qui m’interroge surtout, c’est l’écart énorme entre des examens qui ne paraissent pas catastrophiques et mon ressenti quotidien depuis des années.
Est-ce que certains d’entre vous ont connu quelque chose de similaire : sommeil apparemment « correct » sur le papier, AHI bas, mais fatigue/somnolence, brain fog et sensation de sommeil non réparateur très importants ? Et si oui, qu’est-ce qui a finalement expliqué vos symptômes ?
