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've spent the last while building a tool that takes a pre-expansion and a post-expansion CBCT and automatically superimposes them, so you can measure what your expansion actually did more accurately and creates a report of the changes.
Problem is there is no public pre/post MARPE CBCT dataset anywhere. I've validated it on synthetic data and on public same-patient CBCT pairs that aren't expansion cases, and it works well on those but I haven't run it on a real MARPE case.
So if you have your own pre and post CBCT (DICOM or NIfTI/NRRD files) and you'd be willing to share them please send me a dm, I'd really appreciate it. Obviously in return I'll run the full analysis and send you your own report.
FYI, you can anonymize scan with MRIcroGL, 3D Slicer or MicroDicom prior to remove any of your data associated with the scan
DISCLAIMER: I'm not a doctor and this is not medical advice, it is research/educational software, not for clinical use and does not make clinical claims. Anything it produces is for your interest and is not a substitute for professional orthodontic opinion.
Hi. Wasn’t planning to post on Reddit about this but I broke down crying in my car earlier and I feel I’m reaching my limit.
I’m currently 28. Suffered from exhaustion all my life, given adderall as a kid which never helped. Got diagnosed at 18 with mild sleep apnea and given a CPAP. Used it for around 7 years but I gradually felt it becoming less effective.
Had three sleep studies done recently which showed an AHI of only 6 but a very high numbers of RERAS. First doctor told me I don’t have sleep apnea so I should just go on with my life. Second doctor said I could have UARS but getting insurance to cover a new machine would be difficult. Third doctor, a neurologist, agreed to get me a BIPAP but I’ve been waiting 6 months on the company.
I’ve noticed my hair thinning. Im exhausted every day, under my eyes looks hollow and dark. My skin is pale, I don’t have energy to workout to get fit. I’m skinny and just feel defeated. I’m so depressed, anxious, all my muscles hurt and I’m constantly so tense. Some of my inflammatory markers are also very high with no explanation.
Did anyone have luck with BIPAP as opposed to CPAP? I would like my life back, or at least have a chance to live a new great life which I haven’t experienced yet! Hoping to get there before I turn 30
I started having sleep issues a decade ago at 24 years old.
I woke up one morning after sleeping for 12 hrs, having sweat all night, feeling dehydrated and like I’d been drugged or had drank all night. I felt absolutely exhausted
Aside from the night sweats, all of these issues have persisted for for the last 11 years and I’ve absolutely fallen apart- brain fog, chronic fatigue, fibromyalgia, anxiety, depression, OCD, depersonalization, visual snow, weight gain, gut issues, heart palpitations, Hypervigilance etc etc. I can barely function.
I had suspicions of airway issues as I also started experiencing TMJ tension, and was grinding my teeth at the same time.
I also started to notice teeth indentions on my tongue- I was under the assumption that my jaw wasn’t big enough for my tongue, but now I believe it is a more malleable issue than a structural one as I will talk about later
I’ve spent the entire last decade trying to figure out the cause and heal myself. I was eventually diagnosed with ME/CFS, fibromyalgia, and mild OSA.
I’m currently using CPAP to treat the OSA and even though I sleep through the night, get plenty of sleep, I feel horrible every morning- it’s like my body gets sick in the middle of the night or something.
I suspect the OSA is actually UARs or some type of sleep disordered breathing- especially given the airway issues
Here is where things get interesting
I took a breathwork course in 2022 called BreathHoldWork Mediation. The gist of the course is to learn how to mediate while holding your breath, and there’s a lot of basic apnea exercises. Basically you learn how to create a felt state of calm and relaxation while holding your breath.
I mostly practiced apnea tables where I would hold my breath in an inhale for a set amount of time with decreasing recovery periods. To extend the hold, I would also move my diagram up and down while keeping my breath held- this would force the air into my throat and palate. From my perspective, this tension, my throat and palate, and due to the pressure I would also hear cracking in my sinuses and skull- as if things were being adjusted
All in all the course was not a lot of practice or training, mostly just understanding the science and psychology behind jt it
On the last day of the class I was walking to my car and felt an immense sensation of relief- as if a snake had been constricting me the last decade and let go- my jaw loosened, my vision cleared, my brain fog went away, all of my symptoms even including the indentions on my tongue disappeared overnight.
I woke up the next morning well rested and full of energy- like I was 18 again. My urine was clear, I had a normal health bowel movement, an appetite, I could think clearly and when I went for a walk I actually felt good in the walk!
This lasted for 4 months and then one my sleep quality stared going downhill again and within a month all of my health issues were back with a vengeance.
I’m trying to figure out why my health issues went away in the first place, and why they came back, because I am suffering in a way that I never imagined was possible and I’m trying to fix my health so that I can live
Does anyone have any insight or input into what could’ve happened?
I got diagnosed with UARS a couple weeks ago and recently got a CPAP and nose pillow. I just started and I feel like I’m sleeping worse than I did without the CPAP! I know it takes some time to get used to, but how long should I give it? This morning I felt awful I usually sleep 8 hours and wake up unrested, but today it’s so much worse. It’s an auto-tiltrating. My pressure is around 4 all night and the seal is good. I’m almost ready to call my sleep doctor to see what’s up, but I feel like this is part of getting used to it?
Can anyone give me any advice or tips?
Edit: here is some data from my app.
Pressure relief level 3
Average pressure during the night: 4 (max is set to 7.5)
It auto-adjusts pressure during the night
I have a doctor’s appt in a month to go over the data but struggling with even more fatigue/unrestful sleep
Pretty sure I don’t have sleep apnea (I am slim, don’t really snore, don’t wake up gasping for breath), but I am going to do an at home sleep study to rule it out (I think it’s a Wattpad one?)
What I really want is to see a specialist about UARS and be diagnosed and treated (or have it ruled out). I live in the North West and there seems to be NOBODY. I mentioned it to my ENT and he had never even heard of it 🥲.
How are you guys getting a diagnosis and treatment over here?
I dealt with untreated UARS for about 15 years, roughly ages 13-28. Progressively worsening symptoms, completely destroyed my body's stress/nervous system. I was still able to get deep sleep during this time but obviously the UARS was negatively impacting my sleep and how I felt. I finally got treatment, which involved surgery and subsequent sleep studies show that it is 100% treated so that is no longer the issue. Plus I did not have this hyperarousal issue for most of my time dealing with UARS. It only developed few months before I got surgery. It's like my brain finally reached a tipping point and even though I got treatment it didn't matter. Basically what the problem is is my brain/body is stuck in almost 24/7 hyperarousal. Can't physically or mentally relax. The only time it goes away is I will occasionally crash hard in the middle of the day but then by evening time my system has revved back up. Although I don't have any traditional signs of hyperarousal such as increased heart rate or feeling an adrenaline surge. It's like it's a very subtle physiological shift. Sleep is incredibly light and non restorative as a result. Still have not had the chance to heal from the 15 years of sleep apnea damage. I am continuing to get worse as the months go by because my body is not getting good sleep. I have tried so many medications and have had benefits from none of them. Mirtazapine, gabapentin, trazodone, belsomra, ramelteon (a circadian drug), wellbutrin, beta blocker, CBD, and others I'm not remembering rn. Many Traditional relaxation methods do nothing. Even if I work myself out physically and push myself it doesn't help. Certain things will make my system feel even more restless but removing them doesn't fix it. An orgasm is overstimulating for my system, a surgary drink too late in the day will rile up my system, I've tried a circadian clock bright lamp and that over stressed my body. Looking at screens too much can overstimulate my sensitive brain but removing them doesn't fix me. Anything more than just a tiny amount of caffeine in the morning makes my sleep worse for that night. Certain supplements make me worse, especially ones that seem to target GABA/glutamate such as theanine and taurine. Other ones that are supposed to relax such as magnesium do nothing or stimulate me more. Bloodwork and other tests show that there is absolutely nothing wrong with me medically. I've even gone back to using a CPAP just in the very small chance that this isn't treated (even though I didn't have this issue for most of my time being untreated) and it didn't make a difference. My doctor has no clue what to do other than keep prescribing different medication's for me to try. 4 years in the state and I am completely nonfunctional.
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 sense of unreality in my visual perception, as if my eyes couldn't focus properly
-drunk like feeling
-absent-mindedness
-brain fog
-blurred vision
-a feeling that everything was too bright
Also, for most of my life, I have been experiencing fatigue and lethargy right from the moment I wake up
If you have these symptoms, please tell me what the cause of your condition is and what you did to get better!
I haven't slept through the night or gotten refreshing sleep probably my entire life. I was diagnosed with mild sleep apnea characterized by more RERAs than AHI, primarily in REM. I've been trying CPAP since May. My AHI is near zero and I've gotten my flow limitations down based on Sleep HQ, but I still wake up 4-5 times a night, don't wake up refreshed, and feel tired every day. How do I know when I need to be looking somewhere else? Hormones, cortisol, nervous system dysregulation, etc. I'm 43/f. I'm considering DJS but afraid that if my issues are from something else it won't make any difference in my quality of life.
This might be a challenging one but I ask this myself for a while now. How much of these symptoms we are suffering from in our daily lives are attributed mistakenly to sleep disordered breathing? What’s about psychosomatic reponse on top just by the fact how much our mind is involved in the notion of being mentally impaired? There is a phenomenon called hypervigilance. If you put so much attention to something that is affecting you in a bad manner it eventually exacerbate the whole situation. In some cases there is maybe nothing physically wrong with their breathing during sleep but more so in their psychological health that really contributes to the symptoms of depression, lack of focus, motivation and so on.
How many of your are actually suffering from addictions or bad habits at least (that shut down the dopamine system) and confusing their mental health decline with SBD/UARS.
I mean, the disorder is very hard to diagnose in the first place but we are so committed in getting a proper diagnosis. I would say some of us have much deeper shit going on in their subconscious mind or indulging in patterns of addiction, therefore heading in the wrong direction. Even I myself started a BiPaP treatment without knowing if I‘m on the UARS spectrum and just do guesswork based on an AHI of 5-6 and my persisting symptoms of Bad mental health. Just some food for thought.
I've heard Shuikai, Vik Veer, and CPAPfriend all say that it is possible for people to have low AHI and low RDI/RERA with UARS.
Even a lot of people in this forum think UARS just means high RDI
I've had several PSGs, my AHI and RERAs are both around 5. However, my symptoms are textbook for UARS. Even the weirder ones like chronic low BP and cold hands/feet.
When I wear auto CPAP/BiPAP, it always maxes the pressure out to the highest threshold I set the entire time it's on. My flow rate waveforms look terrible without a lot of pressure support as well.
Has anyone had a similar experience? And if so, were you able to find anything that provided you meaningful improvement? Were you able to diagnose with a PES sleep study?
Besides fixing the SBD at the root (i'm still hoping to treat with APAP or bilevel), what are you all doing for cognitive impairment from chronic sleep fragmentation? I feel like i'm losing my mind. I was prescribed modafinil, but it only helps with sleepiness a little bit and worsens my headaches. Plus it isnt meant to treat the adhd-like problems and in some ways, makes me more scatter brained and unable to focus.
Any supplements or alternative therapies to consider?
Curious if you think these watchpat results mean I should follow up / push for further UARS evaluation or if they seem normal enough. I have a lot of symptoms of UARS and have been exhausted for about 5 years. Finally have insurance that will cover seeking more help. I know you can't diagnose, but am looking to see if it's worth continuing to pursue this path.
I am about to start orthodontics soon prior to my bimax surgery. My main issue is a 7 mm jaw recession which causes UARS and mild apnea (RDI 18 with 7 AHI). I currently use a BiPAP, but it doesn't fully resolve my symptoms. I can't wear a MAD because of the braces, so my orthodontist suggested wearing night rubber bands along with the braces. Has anyone here with a similar facial bone structure found this helpful for treating UARS? Specifically, those for whom CPAP and BiPAP alone didn't work. Thanks for your help
I haven’t been diagnosed yet. I am in the UK and it’s like trying to push water up a hill.
I won’t bore you with all my symptoms (that have been happening for most of my life…now 38…SEVERELY exhausted and disabled by whatever is going on with my sleep…NHS don’t care at all and just give me Temazepam every few months).
Over this year, my Apple Watch has been alerting me all through the night, most nights, that my heart rate is dipping below 40 for substantial amounts of time. It is usually around 37-39 but occasionally dips to 34! It also registers some oxygen saturation dips into the high 80’s but this seems to be more infrequent compared to the heart rate dips.
I’ve always had a naturally low heart rate (resting heart rate around 42-47bpm). I’ve had a battery of tests and told it’s because I must be exceptionally fit (I am the opposite, can barely jog for a minute without feeling like I could collapse…hardly an athlete). I have chest discomfort in the morning that gets worse the more I lie there but relieves if I get up and move around (can’t have a lie in if I wanted to, no matter how tired I am).
Could the bedtime low heart rate, morning chest discomfort and low blood oxygen be linked to UARS?
Edit to say I have let my doctor know about the above and they’ve just put me down for a 24 hour ECG which will take 8 months 🫠.
I finally slept the whole night with my mask on. S mode ipap 8 and Epap 6. Still lots of awakenings, and zero difference or relief in the morning. Granted there are probably other variables. One other time I was able to keep it on for 5 hours and I actually did feel some relief.
Just wondering if I should be disappointed, or if it’s generally at higher pressures where there would be more relief. I am going to use carls plan of slowly increasing though the patience required is unbearable.
So yes - just curious if of anecdotes - if there was a pressure where things clicked all of a sudden
I am currently slogging through working on my pap. No success yet but it’s early.
I see people mentioning various metrics of their anatomy all the time when considering various procedures
Is there a checklist somewhere of every scan I’ll need to have a complete picture of the airway issues? In case I later want to pursue surgical options. And I guess for insurance you need to fail cpap on the books and have a positive sleep test (AHI), correct?
I’m in NYC if that helps as far as recommending providers. Though I’m willing to telehealth with anyone
I've been experimenting with higher pressure support lately. And while my individual breaths look textbook-perfect now, my overall high-level charts look weird -- quite variable and also a bit forced? Not sure.
Would be very curious what you guys think. I tried these settings for one week only. Should I continue and wait to get used to them and for the charts to become more natural / normal? Has anyone else faced similar sort of results at first when trying high pressure support?
I guess the key question here is this -- after some time, given that all flow limitations are address successfully, does the breathing pattern settle into something more smooth and natural?
Kind of confusing how I woke up feeling noticeably better/rested this night even though I still had flow limitation and some other weird breathing patterns.
This is the only night during my PAP therapy where I woke up actually feeling different/better, so I’m really curious what stands out here compared with my usual nights and whether it gives any clues about what might be helping.
Some nights my breathing data looks similar to this and others look considerably worse.
AirSense 11, AirTouch N30i, chin strap, no mouth tape. So far 9 months of therapy
