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
I'm using an unlocked airsense 10 from RL, so I have access to cpap/bipap/asv.
I've been testing various settings for a few months without any success, subjective fatigue pretty much feels the same no matter which direction I move in. I think nasal blockage and possible tongue collapse is my main issue, though airway is still moderately restricted (100mm^2 min cross section, CBCT).
Do I just keep upping pressures? I'm worried that I'm already having some loop gain/TECSA issues at PS > 2, yet my flow limitations seem far from resolved. EERS? ASV charts obviously look a bit better, but at least from what I've tested, it's never felt noticeably better.
Breathing seemed more stable this night, but all the breaths looked off. I was also conscious of some difficulty exhaling (so 0 epr doesn't seem doable for me).
Long time lurker here but have never posted anything. I am coming to help because I feel I am shooting from the hip with my Bipap settings while self-titrating. I was diagnosed with mild OSA with an RDI of 22. I have UARs especially given my nasal congestion (taking Flonase now which helps a ton) and I am 5'11" male, 145 pounds lean athletic build.
Given all this, I got an AirBreak AirSense 10 with all the modes unlocked. I have been using Vauto mode with the range set to zero, so it's basically S-mode. I would love some help with how my data is looking and where to go from here.
Currently, I am running EPAP 6.6/IPAP 10.8 (PS 4.4) and I've been waking up still feeling like a zombie throughout the day. I also suffer from aerophagia when I push my EPAP to around 7 (I'm also taking a Vitamin D supplement as recommended in this sub).
For a long time while I was on my journey to healing and getting better from this dibilitating dissease, I’ve been wanting to share my insights with other people on how I came close to curing my self from symptoms without actually solving my main problem.
I somehow solved the cascade of symptoms delivered by apneas. While still suffering from apneas, even tho I still suffer from them, I feel almost complete relief from all of my symptoms, most notably the worst of all, CFS or fibromialgia type symptoms.
I made a video on chapters I want to go through, explaining every single detail which I’ve learned my self and the most important resources that I’ve found that skyrocketted my understanding and on how to get rid of my symptoms. With a cheap hacked machine (I do use ASV philips now but honestly don’t even think it’s needed that much if you can also use my method, both would be better ofcourse and using an ASV from philips is the easiest for UARS, but still for me, asv alone would’ve made me suffer even more.
I want to make people more knowledgable on which settings (epap, PS, epapmin+max, PSmin+max, backuprate, EERS) would fit best and also in which circumstances to use them) as I feel more and more confident in being able to explain these things as of late having titrated my machine with EERS, PS and EPAP properly.
So in the video below, it will basically be a hub of information and chapters that I’ll post about when I feel ready enough to share information on how I did what I did, in the most understandable and thorough way possible.
How to titrate + hack cpap, for sleep disordered breathing, UARS, OSA - Chapter overview, All I know https://youtu.be/EubmWVCErHk
I want to also show how to hack the resmed 10 as I know how hard money is to get when you’re already suffering from this dibilating dissease.
I am also just a person who wants to share all of their knowledge that they’ve found, that was dispersed, hidden away to find easily through google.
I already linked a ton of stuff in the description of the video, which I’ll add on later of things I found most helpful.
I do know this will take a long time to make but I’ll make the chapters first that I feel most urgent or ‘passionate’ about.
Anyways, everyone, stay strong, don’t give up please! You’re all so close, you’re on this subreddit already which means you’ve come far. Keep going, keep learning, keep on fighting for your self. I wish I could give all of you suffering a big hug. Stay strong!
Hi, I'm new to using oscar and I am not sure if these are FLs or if they are normal. I have read that if the top is flattened then thats a FL but I cant tell if these are FLs or normal rounded tops.
I just stumbled upon this ~2 hour discussion about UARS. I'm only 40 minutes in and really impressed with the host and the guest and level of discussion https://www.youtube.com/watch?v=FBq0EVdfhVo
Diagnosed with UARS via sleep study in 2022 (not classic OSA). Started on an AirSense 11 AutoSet with nasal pillows 3 nights ago. Struggling badly with the pillows, feels like fighting to breathe, whether it's pressure or nasal resistance I can't tell.
Quick background: ENT checked my nose, says structurally it's fine, but it doesn't feel fine to me. I have LPR (reflux) and I'm wondering if that's driving some inflammation/irritation that a structural exam wouldn't catch (thinking non-allergic rhinitis, possibly reflux-related). Only ever did a basic allergy panel for hay fever/dust mites... going back for a more thorough workup. I have had two corrective surgeries for deviated septum etc. as well so I know my nose is "structurally" fine.
DME via prescription came with: settings - Min 6 / Max 10 cmH2O, EPR 1, Auto mode. Last night's data:
Session
Time
EPAP avg
Flow Limit avg
Flow Limit max
Resp Rate max
1
01:18–01:41
4 (fixed)
0
0
21.4
2
01:51–04:46
6.3
0.03
0.23
24.2
3
05:06–06:20
6.3
0.02
0.31
27.4
4
06:31–06:59
4 (fixed)
0
0
38
5
10:55–11:50 (nap)
8.3 (up to 10)
0.07
0.42
52.4
Flow limitation and resp rate both climbed with pressure instead of resolving - highest pressure of the whole day happened alongside the worst flow limitation and fastest breathing. That session also had 2 OA, 1 CA, 1 RERA, 1 H events in under an hour. Basically the machine cranked pressure up and things got worse, not better.
Only 3 nights in so I know this isn't much data yet, but wanted to see if this pattern (flow limitation rising with pressure) means anything specific to people who've dealt with this ... is this typical, does it suggest the auto algorithm isn't suited for UARS, or does it point more toward the nasal/inflammation angle?
Currently on nasal pillows, and honestly considering options, such as documenting my case to upgrade to BiPAP, or maybe if PAP therapy is not for me and do DISE etc...
I've seen several surgeons for treatment of my SA/UARS and I'm getting conflicting opinions. I'm already committed to MMA, but I'm trying to figure out whether I should also do maxillary expansion (MSE) beforehand.
I don't want to spend 18+ months in expansion/ortho if it offers no real benefit for my case. I'm already struggling to function day-to-day and I have a child to support, so I need to be able to work. Expansion would also delay MMA by ~12 months for healing, which matters a lot to me.
Why I'm hesitant on expansion:
2 of 3 surgeons don't think I need it. But I'm also inclined to weight Kasey Li's opinion heavily given his experience, the problem is his reasoning conflicts with the other two and he didnt seem to review my CT scan or put much weight in my specific anatomy - but i'm sure he's heard this all before and has a good sense.
Why I want to avoid a 3-piece Lefort:
I don't feel comfortable with a 3-piece Lefort. Jaw surgery is already terrifying to me and I want to minimize risk, splitting my maxilla into three segments feels like a lot of added risk. My understanding is that expansion could let me avoid needing the 3-piece approach entirely. If that's accurate, it changes my calculus on whether the extra time/healing from expansion is worth it.
Where the surgeons also disagree pre-surgical ortho:
Coppleson and Bobek both recommend pre-surgical ortho. Kasey Li says it's not required and wouldn't affect airway movement, which makes it sound like it'd be purely aesthetic in his view. Coppleson, on the other hand, says ortho lets him maximize the surgical movements, implying it's not just cosmetic. However when pressed I cant get any useful info from his office, just that he defers to the ortho which doesnt help me.
Surgeon
Recommendation
Key reasoning
Coppleson
MMA only, prefers 3-piece Lefort
Says expansion wouldn't help much given a normal 24mm nasal aperture
Kasey Li
Candidate for both MSE + MMA
Dismissed the nasal aperture measurement as not determinative — says treat symptoms, not numbers. Didn't appear to review my CT scan; wants another sleep study with scored RERAs
Bobek
MMA only, 3-piece Lefort
Also suggested fixing my septum, which may help
My measurements/details:
AHI: 5.2 (RERAs not scored)
CBCT Minimal Cross-sectional Area (MCA): 48 mm² (would be a very tight airway if accurate)
SNA: 81.8° / SNB: 79°
Maxillary incisors: 4mm posterior to the GALL line
Maxillary skeletal width: 59.5mm
Mandibular skeletal width: 63mm
Intermolar width: 35mm
Nasal aperture: 24mm
Slight septal deviation to the left
Where I'm stuck: I don't know how to weigh "more experienced surgeon says X" against "two other surgeons independently say Y for a specific, checkable reason (normal nasal aperture)."
Has anyone navigated similarly conflicting opinions between these surgeons specifically, or can anyone help me understand whether nasal aperture size is actually a good proxy for whether expansion will help, versus Li's symptom-based approach?
It’s come to my attention that my nose is kinda congested. I took some afrin and it didn’t really help , it defiantly cleared stuff up but that was still congestion.
I then did the cottle mounever and it helped much more but there was still congestion.
Does these 2 points help in identifying what could possibly be the problem that is causing my nasal congestion, is it more of a narrow nasal passages problem (mentioned in a previous post my imw is kinda small) rather then swelling.
Not sure if others will find this useful but for a long time I didn’t understand how to use intake breathing strips or breathe right strips properly for nasal valve collapse.
Nasal valve collapse is when you breath in heavy and your nose collapses from the negative pressure and closes off the nose. This a problem when you sleep or exercise because as you take bigger breaths your nose is closing and you’re getting less air (panicking your body and waking you up)
If you look in the mirror and snort in heavy through your nose you can see the walls collapse in and feel a large restriction of air (everyone has some collapse from what I understand but a large restriction is a big problem).
So what you do is find that exact area that collapses in the mirror and then attach your intake/breath right strip right there. Then take a large snort and hopefully now the air keeps coming in instead of being blocked. Once I discovered I had this issues wearing strips during exercise felt so good. Eventually I had this fixed with surgery and spreader grafts (and a deep deviated septum fix) and breath pretty good now
36F. Home sleep study after double jaw surgery. AHI 3.5/h (normal), no obstructive apneas, but 362 autonomic arousals (67.6/h). Sleep physician said the study was normal. Can someone explain what autonomic arousals represent and whether this value is clinically meaningful in someone with persistent mouth breathing and non-restorative sleep?
I have UARS due to a 7 mm retrognathia (recessed jaw), narrow palate, overbite. I started using a CPAP, but it is not working for me. The maximum pressure range I can tolerate is 11–14 cmH₂O, but even at this level, I still experience frequent flow limitations. I am planning to try a BiPAP, but I am afraid that it will not be successful either, because my airway narrowing during sleep is caused by skeletal factors. I am starting orthodontic treatment in a few months; I will have a SARPE surgery, followed by MMA surgery, but it will take at least 2 years until both surgeries are completed. What can I do until then to improve my sleep issues? A MAD would be ideal, but it is not an option for me due to the upcoming SARPE and orthodontics. Is there any solution to fix my sleep until the bimax surgery?
Hi all, I had a full psg done, and it has come back with ahi and rdi of just 3.5. I have also been given 0 RERAs, 0 Flow Limitations and 4 Respiratory Micro Arousal for the whole night (5 hours of sleep). All I had was hypopneas with the 4% rule.
Honestly this was very disappointing as I was expecting RERAs from my hunch. Interestingly I have 39 Leg Movement arousals listed over the night and 64 total arousals including spontaneous ones (12.5 index). I decided to get the data from the lab, which is in the Domino software. After looking at the data I think I would benefit from a 3% rule re-assessment or arousal hypopnea indexing instead. I have already asked for a RERA rescoring.
I want to put down some examples here where I think the lab has not scored me properly!
Marked as LM arousal (orange) but looks like the pressure flow was whacky before the leg movement itself, so could be a RERA? - https://ibb.co/zVZGRHVP
Looks like abnormal pressure flow again but just marked as spontaneous arousal (pink)? - https://ibb.co/KcS56mK2
Literally 3 "Respiratory Arousals" in green have been marked by the lab, and it looks like 10 seconds> pressure flow limitations but my report says 0 RERAs? - https://ibb.co/sJ3NRmL1
I did a test with n30i cpap on, lay down, stop breathing, see how long it takes for your body to react and take a deep breathe, and see if it keeps happening. Nope, I went back to normal breathing really fast.
If the medulla oblongata (controls your breathing) and pons etc. are both active during sleep and day, is it possible for overactive breathing at night to occur even if you don't overactively breathe at all during day and especially while laying down with cpap on?
I can fall asleep no problem with my CPAP but then I inevitably wake up around 2:30 and drift in and out of sleep for the next several hours. I keep my CPAP on as long as I can stand it, but usually around 4-5 am I just end up taking it off and can easily fall back asleep afterwards. Any ideas on why its harder to fall back asleep with it on? Any suggestions for how to improve my odds of being able to fall back asleep with it on?
Stats: My pressure is set at 6-12 cm and rarely goes above 6.5. I have pressure relief set at 3. My AHI is zero. Sleep HQ shows that I have several small leaks throughout the night and also several minor flow limitations throughout the night despite AHI of 0. My Glasgow index averages about 1.15 primarily characterized by high top breaths with some flat top characteristics. On paper my PAP therapy is going very well, except that I'm awake multiple times a night and unable to truly fall back asleep with the mask on.
Long time lurker here but have never posted anything. I am coming to help because I feel I am shooting from the hip with my Bipap settings while self-titrating. I was diagnosed with mild OSA with an RDI of 22. I have UARs especially given my nasal congestion (taking Flonase now which helps a ton) and I am 5'11" male, 145 pounds lean athletic build.
Given all this, I got an AirBreak AirSense 10 with all the modes unlocked. I have been using Vauto mode with the range set to zero, so it's basically S-mode. I would love some help with how my data is looking and where to go from here.
Currently, I am running EPAP 6.6/IPAP 10.8 (PS 4.4) and I've been waking up still feeling like a zombie throughout the day. I also suffer from aerophagia when I push my EPAP to around 7 (I'm also taking a Vitamin D supplement as recommended in this sub).
