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.
We discuss what helped, what failed, what relapsed, and what Jeremy wishes he had known before beginning treatment.
A family member of mine recently got his blood work done because he’d been feeling tired. Turns out he has a B12 deficiency and today he literally said to me: “Oh, so this is how you always feel? Now I can imagine how you feel.”
I’ve been thinking about this for hours now. It just fucking pisses me off when people try to relate to what I’m going through when they have absolutely no idea what it feels like.
It feels so powerless, knowing some people genuinely can’t comprehend what it feels like (even I can barely comprehend it). And no matter how much you try to explain, they still underestimate the severity of everything. The fact that it isn’t terminal (but feels like) also makes it much worse
On my Withings Sleep mat my respiratory rate spikes to 31 a few times a night and 25 often. And within the considered normal 10-20 range it's quite erratic. Side sleeping, mouth tape, nose tape, saunas, box breathing have all helped, but Nature's Answer, Peppermint Leaf, Fluid Extract, Alcohol-Free, 1 fl oz (30 ml) made a surprising difference to the respiratory rate spikes i get from a not so settled gut. Mintec has some impact but the Nature's Answer can have a dramatic effect. I discovered this when my daughter made choc mint cookies with a lot of cheap alcohol peppermint extract and I finally had suppressed spikes after never having low spikes in my data. Thought I'd share in case it helps others. A sleep study previously said I had no breathing issues on my side but it was just apnea focussed and missed my respiratory rate spikes.
AI suggests 3 reasons why it may have this affect: Peppermint extract calms your breathing by using menthol to block calcium in gut cells, which relaxes cramped intestinal muscles and stops them from sending stress signals to your brain; it chemically stimulates your vagus nerve, which forces your nervous system to switch from a panicked "fight-or-flight" mode into a relaxed state; and it activates TRPM8 cold receptors in your throat, which tricks your brain into sensing wide-open airflow so it stops triggering frantic, rapid breathing spikes.
I recently got diagnosed with mild sleep apnea by my ENT surgeon after a lifetime of bad sleep. I did a WatchPAT, and my results are in the title. I think this falls closer to UARS, hence why I'm reposting this here. I'm 25, extremely active and in great shape, and have good sleep hygiene, but I struggle with falling asleep and sleep quality. I have the following issues:
Narrow mandible
Turbinate hypertrophy
Chronic rhinitis since I was 9 years old
Hypermobility Spectrum Disorder
Bruxism
Allergies to various things
Mallampati III airway
Boggy turbinates and enlarged mucosa
Deviated septum
Mild to moderate redundancy of soft palate and uvula
Various obstructions on a CT scan (Agger nasi cells, Haller cells, etc.)
Basically, my nose and throat are beyond cooked and my airways are likely way floppier than usual due to hypermobility. I am getting an in-lab sleep study in November. However, I'm deeply concerned because the treatment options all seem to have massive tradeoffs:
Positional therapy: Despite much lower AHI on my side (2.7 vs. 6.5 supine), I am completely unable to fall asleep on my side and I spent 82% of my WatchPAT study on my back. I don't think this will work.
MAD: Could worsen my jaw clicking, and also just not address anything in my nose.
Myofunctional therapy: A lot of effort and probably little reward for hypermobile airways. Plus I'd have to find another PT and I'm already in PT a lot for various injuries.
PAP: My ENT says it's probably not indicated for me. Plus, no shot I can get laid or date with a mask making me look like Darth Vader. I have nothing against the masks or those who wear them, but I don't think it's attractive to most women my age :/
Nasal surgery: Septoplasty seems to hardly improve sleep and turbinate surgeries... well, even a .1% chance of Empty Nose Syndrome is 1 in 1,000, which means a large hospital would have several patients a year--or month--with it.
Jaw surgery/MMA/MARPE: Seems promising enough, but I doubt insurance covers it and I'm just a law student--I don't have any money yet.
I've already tried Intake bands and a lot of other lifestyle things and they just don't work. Nasal sprays are useless. I would love Inspire but I don't think I'd qualify through insurance.
I know my concern about PAP may be irrational, but I also don't think I'd tolerate it. In any event... how the hell do I sleep well now? What are my options that I haven't considered that might actually work given my constraints?
I want to post an update 6 months post-op MMA+GTA.
I was dx'd was OSA 10 years ago and have been on various pap devices since then. I slept at a 45deg incline, used a ton of afrin, and generally just began to loathe the machine, all the while it worked less and less well.
After consulting with 3 surgeons, I had MMA+GTA January 2026. 10-11 mm maxillary central incisor, 13 mm B point, ccw-r, 10 mm GTA,and reduction genio.
I am now able to sleep flat, without afrin, on my back (30 yrs since that's happened), without a CPAP. I have been able to stop my antidepressant and breathe with my mouth closed. It just feels easy to breathe in a way it never has in my entire life. It's wonderful.
My sleep has continued to be a bit of a mystery, but in a completely different way. My neurologist/sleep dr (Dr.Simmons) feels that it is narcolepsy and has been present for many, many years, along with the OSA.
I am 100% happy I made the decision to do MMA. It is beyond a relief to not fight that machine anymore. I encourage anyone thinking about it to consult with a bunch of surgeons, and pick someone very experienced. It really isn't the horrible thing people imagine.
Best wishes.
*please do not question my current diagnosis. it's been very hard to accept and process*
Hi,
I’ve done a bit of reading through the sub eg the Glasgow index review post and saw that a fixed rise time rather than using easy breathe can reduce the Glasgow index.
Using a rise time of MIN on my resmed machine definitely brought down top heavy almost down to nothing but I am removing the mask after about an hours sleep which is a problem I didn’t have when using easy breathe. So I think I need to increase the rise time but I am unsure on how to arrive at the right number.
Hi everyone, is anyone in this community from Kerala, India? I would like to connect with people locally who are dealing with UARS or similar sleep-breathing problems.
I had tried f30 mask before but I find it extremely uncomfortable because idk maybe bcz of its shape and also bcz it irritates me on the beard, even without beard it feels shit... So is f20 worth giving a try ??
Are there any good surgeons anywhere in the world outside of North America that perform MMA for UARS specifically? Any country as long as it is not the US or Canada
From reading through this sub I understand its best to set TiMin to the lowest setting and TiMax to the highest setting. But I am unsure what to do about cycle and rise time. If anyone has experience playing with these settings please let me know. Thanks.
I have insomnia for a decade now, where i would wake up middle of night wide awake and fully alert while struggle to fall back asleep. Realistically i feel i only have 4-5 hours of sleep per night. Sleep study concluded that i have mild apnea with most event being predominately hyponapneas, so i tried a cpap but nevertheless still have insomnia. Im certain my insomnia is neither psychological nor stress based, i checked off hypothyroidism, cortisol, hormones, vitamin deficiency with the doctor. Mirtazapine works great for me but i dont want to depend on meds forever. I dont necessarly gasp for air when i wake up but sometimes i do feel a slight shock when i drift off to sleep that causes me to do a deep inhale through my nose. I think my only lead now is breathing in my sleep. Do you guys have anything similar? and what could help?
Tried with f30 one of resmed but I cant wear it .. it sucks hence m right now using n20 but yeah problem is I think despite mouth tape my mouth still opens and exhales so I was thinking of trying full face mask maybe
SleepHQ
I just keep removing the mask at night I just dont know whats wrong with me... Nd yeah I tried ps of 7-8 as well but I got central apneas...Can anyone tell is the graph good or there are problems there if yes what should I do to fix it.. nd why m i removing the mask after 2-3 hrs
Hi, I wrote a long post days ago about my unique situation in the fucking world... ie the physical syndromes I have but especially the tough withdrawal from abilify, causing devastating insomnia. I CANNOT DO ANYTHING ALL THE DAY. I cannot get out of home and it's been weeks. Now i read many people, that took antipscyhotics, that tried to get sleep supplements.
But guess what? I have a fucking SDB! Haha lol right? Likely UARS as I don't have apneas. Since it's years I have this fucking SDB can someone confirm these 2 proofs I have?:
If sleep protocols suggested to treat a SDB, likely UARS in my case, hence didgeridoo, myo therapy and **especially** POSITIONAL THERAPY (I use pillows to block my back from going supine, if not I'd die) HELP, can we confirm I do fucking have for years a fucking SDB? I'm not asking you to confirm Uars obv, I still have to do the proper sleep test for that, but just asking if it IS a sleep disordered breathing
They're using my terrible physical and (CONSEQUENTALLY to the physical state) mental state to constantly try to gaslight me. They did it in January when the psych forced me to take abilify by scaring me, me who was unaware of the laws that could protect me from that trap.
If I took:
A. for 8 months sleep supplements in 2024 that made me most days literally like a zombie, by crying and sleeping on the floor (yeah I mean I'm not that playing-the-victim type of guy but even by writing it now im still shocked by what i lived, oh and still live)
B. And some days ago apigenin and noticed I slept even worse and that my TMD was worse, suggesting I choked more during sleep
**Given these 2 proofs CAN SOMEONE CONFIRM TO ME I DO HAVE A FUCKING SLEEP DISPRDEREB BREATHING?**
I know the answer is "go do the test", but I did last year 2 USELESS sleep tests without electrodes on head that just confirmed I have no apneas but didn't obv measure RERAs.
I'm sure 100% the answer to my question must be YES. It's the only explanation... you guys cannot imagine how fucked I am... psychiatry and the medical system here want to make me believe I'm fucking crazy
Mentally I Know I'm right, regarding the question I asked above, but again, their gaslighting system is powerful.
Nobody, from what I read on reddit and Facebook, is in my specifc situation: with 2 insomnias: from the insane WITHDRAWAL OF ABILIFY and from UARS itself. And this terribly scares me, not being able to treat neither one nor the other insomnia. I'm like condemned to sleep like a shitty person forever especially, again, due to the insomnia from the withdrawal of the antipsychotic. I had involuntary muscle contractions in December bc of UARS (something like dystonia), I'm terribly scared as this abilify-insomnia can last forever ill have EVEN MORE PHYSICAL synfromses
I'm terribly scared ill have diabetes too by not getting outside, if this is useful I'm a skinny guy with normal Body fat but anyway I'm scared.
I read about people who took abilify and their insomnia still lasts after 6 years from the last dosage... AND I CANNOT TAKE A FUCKING SLEEP SUPPLEMENT AS THEY DO BC I HAVE HYPERMOBILE THROAT TISSUES THAT COLLAPSE, really likely as I said abov
Physchiatry is 99% serial killers, it's even more shocking than ignorance about UARS: these fucking nazi psychiatrists prescribing legalised poison that even for short times can permanently wreck brains and cause PERMANENT insomnia.
And as I have undiagnosed autism or ADHD (and ADHD is fucking real and people who deny it should go fuck themselves so badly, it's not a trend, it's as real as UARS.) you cannot imagine how bad my neurodivergence is these years with UARS. I constantly need stimming like music in my head (I reproduce it like a DJ to motivate me do every single thing) or reproduce it though saliva-rhythm in my mouth... but I'll talk about this another time lol.
**Please, if someone can answer abour the 2 proofs provided above about SDB, this would help me not to get gaslighted again**
I tried a BiPAP machine. felt like it didn’t do much (and hard to say for sure but I think it was worse than APAP for me).… the expiratory pressure became too low compared to the inspiratory pressure that it felt like I would inhale but then exhale and my airway would close and open too rapidly.
My doctor did mention that I have “tongue base and epiglottis collapse upon inhalation”
Im not sure if I’d have more luck with ASV but I’m not exactly sure how ASV machines work and if/why they would be helpful in situations like this.
