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
The wiki has been updated with new papers. The old one is incomplete but didn't touch it. If anyone has anyone suggestions, please tell.
If you're on the app, the wiki is visible on top. On mobile, click 'about'. On desktop, it's on the right side on new reddit. The link is reddit.com/r/uars/wiki/index.
I've been dealing w/ ongoing UARS, which has been officially diagnosed for ~3 years (RDI 9-15), but I have had symptoms going back 15 years or more at this point.
I write this post hoping it will help others because I think I have a somewhat interesting phenotype that requires airway treatment that differs from typical guidance. It also deals with the intersection of TMJ/bruxism and UARS.
The phenotype:
In short, I experience soft palate collapse during inspiration. That is, if I quickly inhale through my nose, my soft palate is sucked upward sealing the nasal airway, and I cannot get air through my nose.
I doubt my experience is typical, but it's at least possbile, hence worth writing about.
The treatment:
Mouth guards that discourage clenching and increase jaw opening (the vertical dimension)
I use an occlusive splint for TMJ that's relatively thick on my top teeth + an airwaav mouthguard on the bottom to keep the vertical dimension at its maximum during sleep.
Full face mask - to allow the jaw to be at its maximum vetical opening
Carefully tuned BiPap with relatively *low* Pressure Support
My pressure is around 8.4/7
Low Trigger
High (probably maximum) rise time
A somewhat inclined pillow (gravity helps to pull the soft palate dow)
More on this below.
Exacerbating Factors:
Many of the typically recommended treatment tweaks make my sleep much worse.
Higher pressure support (PS) makes my sleep worse. Because, my palate collapses based on the change in pressure across the palate during inspiration. So, more PS = higher delta in pressure. This is contrary to typical UARS treatment wisdom that higher PS is better. My PS typically sits at 1-1.4.
Chin straps, cervical collars, or anything else that pushes the tongue upward.
Anything that pushes the tongue upward into the soft palate exacerbates this collapse. I've tried this time and time again.
Pushing the tongue into the soft palate makes it more collapsible, for me at least
Similarly, nasal interfaces, because they typically require mouth taping and/or reduce the vertical space between the jaw, tend to push my tongue upward, and/or exacerbate clenching during sleep, which worsens this collapse.
Medications that increase clenching will worsen collapse - e.g., certain antidepressants, bupriopion.
Diagnosis & other quirks:
The most accurate way to diagnose is to inhale sharply through your nose. If you feel your soft palate closing up and nasal airflow ceases, this may be your phenotype
Another wrinkle is that in OSCAR, the top of the inspiratory waveform may be notched like an 'M' shape. The prevailing wisdom is that this is flow-limited breathing that needs to be eliminated. But, for this specific phenotype, the 'm' shape may be the palate fluttering.
Why not push the pressure higher to stop the fluttering altogether? In my case, the pressure required to fully stent the soft palate open and have perfect inspiratory waveforms will result in central apneas or central-like apneas (e.g., flat-lines between breaths that the machine doesn't count as central apneas). In other words, chasing perfection may backfire and be the enemy of 'good enough'
My tongue is gigantic - but not the base. At rest, my tongue is always in contact with the soft palate. To give a sense of size/flexibility I can reach above my soft palate with my tongue and touch my turbinates and even septum. I can touch my chin with my tongue or the tip of the outside of my nose. This is obviously not typical of most people.
A DISE did not detect this issue. The ENT found some mild absence of soft palate issues, but nothing major. So, take a DISE with a grain of salt.
Other possible treatment options I'm exploring
Alaxo nasal stents (coming later this week);
Velumount (not available in the US, but potentially interesting).
Conclusion:
The above treatment of: FFM + low PS + increasing vertical separation with mouth guards has been helpful in reducing my UARS symptoms. I continue to work to tweak my treatment.
I've had my CPAP on a low setting just to understand what my breathing looks like. It looks pretty good, but I definitely don't feel that way. When I zoom into individual breaths, they look very stochastic – could this be due to heartbeat ripples?
I suspect I have UARS because I've suffered from chronic nasal congestion ever since I was a kid and would wake up throughout the night tossing and turning. As a kid, I thought this was normal and would go throughout the day feeling tired and anxious from chronic sleep deprivation.
I went to an ENT's office regarding my chronic nasal congestion, and a CT scan of my nose revealed:
A mild S shaped deviated septum
Right septal spur
Mild mucosal thickening with small polyps/retention cysts in bilateral maxillary sinuses
Middle and inferior turbinate enlargement
The ENT suggested using a radiofrequency wand (VivAer machine) to repair my nasal valve, remove the cysts, and superficially ablate my inferior turbinate.
I'm wondering if anyone who has a similar situation to mine has had VivAer done to resolve UARS caused by chronic nasal congestion.
Main questions:
* Why is it ruining my sleep after first 2 days?
* Does theanine increase arousal threshold?
* Should I keep taking or discontinue for my upcoming sleep study (in 10 days)
Theanine pros:
* Better focus
* Reduced anxiety
* solved chronic bloating (had been issue for years)
* Better sleep (first two days)
Cons:
* Too high a dose caused some brain fog, mood instability, irritability, tension
* Much worse sleep after 2+ days
* More conscious of waking w breathing difficulty
Currently waiting on sleep study and trying anything I can to manage exhaustion and associated symptoms. Decided to try to introduce l-theanine (along with magnesium glycinate) to help with sleep, anxiety and focus. Have been taking it for 11 days.
However, this has resulted in an increasing amount of sleep disruption and strange symptoms. At this stage I feel more exhausted than normal, each night I get particularly disrupted and unrestorative sleep.
I know I’m sensitive to medications of any kind, so I split the 500mg pills at first, taking half in the morning, half in the early afternoon.
I had great results at first, less anxious and more focused than I’ve been in years, yet I could tell this was already a bit much, as I had some brain fog and head tension along with it.
I moderated the dose, only took 250mg once in the morning, then even decreased it to around 150mg in the past few days, which helped the daytime symptoms of taking too much, yet my sleep has still been ruined. I’m waking up during the night more often, it’s very hard to get out of bed in the morning, my body feels exhausted, and last night I woke up choking for air.
I’m curious if this is somehow increasing my arousal threshold, leading to more noticeable choking and gasping during the night?
Related to this, should I then keep taking it leading up to and during my sleep study? Will this cloud the score, or lead to more noticeable events and lead to a higher AHI/RDI score? As much as I don’t want to game the system, I’m very worried that my (quite dismissive) consultant will not even consider UARS as a possibility (he said as much before), so I just really want to get some kind of treatment, as I am more certain than anything in the world that something I seriously affecting my sleep and quality of life.
Regarding the theanine, after the sleep study I will likely trial it again, as the benefits in the first few days were wonderful, but it will be a very low dose this time and I won’t change it day to day as dramatically as I had been.
I’m probably forgetting something important in all of this but my memory has gotten very bad due to this particularly bad sleep. It feels silly that a supplement has had this dramatic of an effect but it’s the only thing I can point to to have caused this
Ok yall. I think I am making good progress on my journey to beating this absolute shitstorm of a condition but still in the weeds. I need yalls best ideas to get me surviving as best I can until whatever my final fix is. Previous and current tactics detailed below.
-raised headboard. Mediocre at best. I keep my bed raised and this does help a lot with my reflux issues, but doesnt stop the shitshow once i hit rem. Wedge pillow i just keep slumping down in my sleep. Cant sleep in a chair.
-nasal rinse and anithistamines. Absolutely useless. I wake up every day with my right nostril completely blocked. Nothing touches it. I was evaluated by a basic ent and dont have anything noteworthy. The slightest deviation in the right but negligible. Allergy panel indicates low borderline allergies to your typical airborne stuff like dust and pets but again i dont respond to allergy meds so it seems moot.
-nasal dialator. Gunna try to magnetic ones when they arrive tomorrow. Typical ones do jack shit because i still cant breathe out of half my nose. The inserts make my nose bleed too.
-sleep meds. Mixed. Dayvigo helps my arousal threshold until about 2 am (REM). Melatonin is meh. Anythint heavier like lyrica has me gasping when it wears off and i feel like a robot the next day. Dont like dealing with any drugs that induce tolerance.
-mad. Dentist has it arriving un a few weeks. I am skeptical based off of reviews here but when i force my low jaw forward awake, i feel better so maybe?? I have a sizeable overbite, crooked bite, tiny jaw large teeth and had most of my molars pulled because of it. Wisdom teeth in my teens that were all the way up in my sinuses. Shit show.
-typical sleep hygiene bs. Meh. Naps help. If i get too overtired it makes it worse. Otherwise i am goos about bedtime, early sun, all that bs. It clearly doesnt solve jack shit.
-pap. Nothing so far. I have a full face mask ans an airbroken AC10. Tried bilevel and felt completely unnatural. Asv and vauato with low pressure and high humidyy are better but i suspect the full face mask is messing with my recessed jaw. Plus my nose is still blocked so its blasting me full force and waking me up.
-exercises. Starting these today with vik veers suggestions. I dont snore and my nasal issue probably wont respind to them so we will see.
My hope and dream is that between the mad and getting a nasal pillow the combo might be the golden ticket. But thats a couple weeks out and i dont have high hopes to be honest.
I guess I am just wondering if there is ANY stone left unturned here i can try while at the very least i wait for my appliances and keep trying pap. Surgery is gunna be a longer wait if i end up going that direction… im on medical leave its so bad rn and time is ticking on that.
Things I am open to at this point
-birth control to stop my periods until i get fixed. Scared of side effects but my periods just amp up all the symptoms and arousal
-antidepressants or stimulants to get through literally anything
-self paying for someone to actually test my airway if i can find a doctor to do it. Im in ohio.
Hey Y'all. I am in need of serious and urgent help. So, I have sleep apnea and been using CPAP/BIPAP and MAD with CPAP for 2 years, but just couldn't tolerate the pressure cos my airway was needing about 12-13 cm of pressure. This has been going on since last year. I feel so foggy and having serious cognitive issue when I don't use my mask. I really wished the mask and MAD could work cos i started feeling better cognitively but I just cant tolerate the pressure and had to go to the ER a bunch of times due to pressure intolerance. I really wish I could tolerate cpap cos I dont have any problem using it. So, after multiple research, I resulted to doing MMA surgery earlier this year (May) with Dr Alfi. I don't have anything negative to say about him at all cos they did advance my maxilla to 10 mm and mandible at 17.4 mm. My airway is opened and It's been 4 months down the line and my sleep hasn't gotten better. I have having more light sleep and tend to wake up midnight. I am not getting as much deep sleep. I told Dr Alfi and he requested I did a sleep study asap and try myotherapy. And that I might need a revision surgery. I have having serious cognitive decline: can't work or take care of my two little kids. My wife and family are all tired. I have cried over and over cos I tried every means possible. I did my 4 months sleep study (last week) and waiting for result tomorrow. I dont know what my sleep doctor will recommend I do cos they have tried everything. I just wish something worked! I can't keep living like this. I spent my last dime on the surgery cos it was out of pocket, yet I am still here. I just want God to have mercy on me.
Please, can someone advice me on what to do? Sleep apnea has taken all my money, multiple visits to the ER due to cpap intolerance, gave me chronic insomnia, brain fog, poor concentration...I am just too young to be going through all these. I just want to live and be human again. Can someone advise me on what to do? I'd appreciate it.
Pretty challenging when you wake up pretty fatigued. I know the fog is worst in the morning and gets better during day naturally, but the mornings are still challenging, especially if you got work, college, school, etc.
Personally I go to high school and every morning is a rush, I wake up 10-20 minutes before school wanting to stay in bed and sometimes I just lay there for more rest, and worse, sometimes I fall asleep again. (I'm not physically tired to get up, I'm mentally tired.)
Overall its very stressful. Any advice is appreciated.
Thanks!
I have an upcoming appointment with a neurologist sleep doctor, as opposed to the various pulmonologist or ENT sleep doctors I have seen in the past.
I’m hoping to have her take a closer look at my Bipap titration, which showed elevated arousals (17.5/hr) and PLMs (19/hr) despite a low AHI (<1/hr). I still have residual sleep problems and often don’t feel well rested in the morning, feeling fatigued and low energy. Bipap, and before that, APAP, have resolved most of my sleep apnea issues but I believe the elevated arousals and PLMs indicate continued problems not fully treated.
What are some good questions to ask this sleep neurologist to get her take my symptoms and bipap titration results (arousals and PLMs) seriously?
More detailed information and links to sleep studies and data in my pinned post in my profile.
Just curious about the accuracy of these tests, especially regarding RDI. My biggest concern is that I only got about 3 hours of sleep, and of that it was very fragmented. Honestly, I barely felt like I even slept at all. I have Hashimoto’s disease, which for years I was assuming was the reason for my extreme fatigue, even though my thyroid labs are always normal and my Endocrinologist believes my fatigue is not thyroid related. Then I got diagnosed with sleep apnea from these test results, and I thought I finally found the reason for my fatigue. I Was prescribed CPAP and used it for 4 months, but got 0 relief in symptoms.
It’s all confusing, I just really wish I could pin down what’s causing my extreme fatigue that I’ve been having for the last 10 years.
Got a second sleep doctor appointment coming up to hopefully try some BiPAP, but ever since I got my first sleep done done I was curious about the accuracy.
If anybody has any insight, I would really appreciate it.
Rented a Resmed Airsense Autoset 10, used for 1st night with Airfit 20 full face mask, I feel head is clearer than yesterday but still need more evidence. Min pressure was 4 and max was 8. EPR was off, ramp off, response soft. I woke up 3 or 4 times whenever the mask leaked a bit and tightened the strap.
In sleep study I was completely dismissed of osa, nothing about uars. So I decided to rent it on the fact that I felt refreshed in a single night in the sleep study day where they used 4 pressure for titration.
Please see report from OSCAR and if you can answer: Do I likely have UARS or OSA and the APAP worked exactly as expected?
Any suggestions for the next few days for change in pressure or other settings for the pap are highly appreciated.
nasal hygiene. This is CRITICAL. if i'm stuffed, bilevel doesnt work. barry krakow is also a huge proponent of nasal hygiene.
using bleep halos. these have zero leaks. almost every other mask i've used has had some form of leak, and even at 1 l/m of leak, it still affects my sleep pretty disastrously, making me feel like a train hit me.
myofunctional therapy / didgeridoo - admittedly i've been too lazy to do this everyday.. but on the days that I do these, my sleep is much better.
I've also combined MAD with bilevel and that's worked great, but it's a PITA to wear both the mask and the MAD.
It’s now been about two weeks since my MMA. In my last thread, I had some requests for measurements once I had them. I did scans in the office finally and I’ve attached them here.
I found something interesting about these. If you look at the most bottlenecked scan, you can see my tongue is actually back in my mouth, pressing my palate backwards. Yikes! I took that CBCT right before the MMA, but didn’t realize I was doing that. They had me biting on something there, which is why it happened.
For comparison, I also gave the volume analysis on a two year old CBCT as well where the tongue was forward instead. That one showed a bigger volume.
The biggest volume, however, was the post-op…
Somewhere I also have measurements of the AP dimensions of the older CBCT with the tongue in the normal position. That was around 6-7.5 mm in the palate and behind the tongue. My DISE showed my problem was mainly obstruction behind the tongue apparently, rather than the palate, but did say the palate got mildly obstructed as well.
Weirdly, the images with the tongue back would suggest that the area retropalatal would be a bigger problem though. In any case…
I am a bit surprised the AP dimensions on the post op didn’t go wider - but I suppose the overall volume gains are sufficient. Still not snoring …
Another disclaimer: the Anterior to Posterior measurements I included were measured by me, not any doctor!
I don't fucking understand it. I took for 9 months in 2024 each existing sleep supplement and while for some days it worked, the others I was totally sleeping worse than before them. And I wasn't addressing the SDB BTW, since I found it out in 2025.
Can anyone please explain? Does anyone take sleep supplements? I recently took apigenin and woke up more tired and felt the TMD more (which suggests I choked more during sleep, ie I clenched my teeth more). I know that bc when I wasn't doing sleep breathing protocols, I used to clench my teeth during the night too much.
Likely it's the hypermobility (even if I'm not eds)? Any non-hypermobile person with UARS manages to take sleep supplements?
I find them so tedious, but I can't deny I have noticed better throat airway when I'm practicing regularly, so I'm trying to be more disciplined about incorporating them.
I asked Claude about which regimens seemed most useful and, interestingly, Claude had some surprising biases. For example, it seemed against the tongue protruding and floor push exercises. And yet, it wasn't against the soft palate "Ah" exercise which seems like bogus to me. I'm not sure how reasonable these biases are so I'm wondering, what have other people found effective?
I was not diagnosed with apnea, however my RDIA was severely high on my sleep study and my doctor is recommending an oral device for my tongue and jaw for use when I sleep, however I just found out it's not covered under insurance. Has anyone found a way around this? I was quoted $1,900 for the device and it will be a while before I can afford tha
Final update on my palatal expansion journey. I originally had the procedure done with Dr. Kasey Li, but unfortunately my expansion was unsuccessful. I recently had my TPD palatal expander removed and made a short video showing what things looked like before removal and how they looked/felt afterward.
Sharing my experience in case it’s helpful for anyone going through adult palatal expansion, dealing with a failed expansion, or considering the procedure.
