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 been using CPAP but haven't experienced much symptom relief, so I'm planning on trying BiPAP. It seems like a lot of the stories around treatment are partial — people feel a bit better, or 70% resolved. Are there people who have treated their UARS completely with PAP therapy?
I'd love to hear if so. Buying an expensive machine and going down the rabbit hole of dialing in the right settings to resolve flow limitation is daunting, and knowing others have successfully completed the journey would be a massive morale boost.
Also if you have moved from bipap to asv can u explain why and is there even any point in using bipap first - should I just move straight to asv ?
I've been using my CPAP for about 6 weeks and am fairly comfortable with it, but I still wake up several times a night. I'm most interested in understanding my flow limitation data and whether that might be what is causing my wakeups. I haven't slept through the night in YEARS. I just got an HD card and uploaded last night's data.
Please feel free to send me to youtube videos/articles... I don't even know where to start but I want to learn! ANY help is welcomed. Thank you!
During my titration study, 14 was determined to be my most optimal pressure during the study.
I was on cpap and they titrated using a VPAP TX device.
I use epr 3, so should I do IPAP 14 EPAP 11 or IPAP 17 EPAP 14. I know, high pressures , whatever lol. Just trying to understand the theory behind whether titration pressure on a cpap corresponds to IPAP or EPAP with EPR on CPAP.
been on nasal cradle for 8 months, i like it it's comfy and the pressures I use (13-15) are fine with the machine. Tried vcom so that when I up the pressure since i sleep on my back, i wuold be able to tolerate a higher IPAP (I use cpap but use epr so i was thinking IPAP 17 and EPAP 14) so I could hit the best pressure for rem on my back and overall flow limits). But the vcom was terrible
I've tried full face (f30i and F20), both airtouch, i need to tighten them a lot or else they will leak, so too much pain.
haven't tried good pillows yet, tried one i found in my house, pretty hold and it scratched by nose from the tiny tears in the wholes. Didn't sleep with it tho.
And this is important, I use airtouch for all my masks, the i cant tolerate silicone ( not an allergy)
Haven't tried f40, should I do that instead or do pillows or stick to nasal?
if pillows which do you guys recommend?
Bit of a strange ask I know, but long story short, I’ve been dealing with what I believe to be potential UARS or some sort of micro arousals which are disrupting my sleep.
I have all the hallmark signs and symptoms: recessed jaw, reduced nasal airflow, narrow palate, along with chronic fatigue, headaches after waking up, anxiety, low mood, worsening ADHD symptoms, lack of energy and motivation, cognitive and memory issues.
I did a home sleep test a few days ago and it came back negative for sleep apnea. I took the test to a sleep doc who said he cannot diagnose UARS either as my RDI is normal. He suggested to do a PSG but it probably won’t be for another year.
I’m desperate to try CPAP in the meantime to see if I can get relief from my symptoms.
Would someone be kind enough to let me use their prescription or sleep test results to get a CPAP. I’ve heard you can buy them from the second hand market but I don’t want to risk getting a dodgy machine and losing my money.
You can blank out any personal details and I’ll add my name and details to make it look like it’s mine.
Got a super shitty nights sleep due to being neurotic and anxious and putting myself under pressure to sleep lol. Anyway there were some results which were interpreted - any thoughts from the community?
If we really say that sleep debt is real, it doesn't make sense how someone with severe sleep apnea( so tons of oxygen desaturations) after years of no treatment can feel perfect on one night. Yes it's relative but it's a huge difference.
Sure they could get the right settings and everyone else just be unlucky, but no way. I refuse to believe that's the only reason. There's gotta be some other stuff. Arousal threshold? Maybe.
https://docs.google.com/document/d/1dwH74YNkuFmRPGMepMNlUXERoVop7pvN6g7lolQPtK4/edit?usp=sharing
Titration pressure range was 12-15 so this fits there...
and I only slept 5 hrs, yep from 5 am to 10 am lol. Very late. and hopefully the answer isn't some delayed circadian rhythm cuz no work or job or stuff is gonna work like that lol. Well, the truth will remain the truth either way.
Hi everyone. I’ve been lurking awhile and never posted. I’m looking for more answers (not diagnoses) to my horrible daytime fatigue. I was diagnosed with mild OSA in 2015? I’ve had cpap since then and have no issues wearing it other than having to put it on immediately or not waking up to put it on. I take Sunosi currently and have done armoda in the past. The fatigue persists.
I had an ahi of 6 with o2 min of 89 with an at home sleep study. My MSLT showed latency of 10.2 min without rem episodes. Phys exam “Mallampati 3, narrow/high-arched palate with redundant soft tissue, tonsils 2+ bilaterally, normal tongue”
I’m just trying to figure out if I can better manage my symptoms. I attached some logs from my pulse ox while on cpap. Should I dig further in the uars route?
After 2 months I got sick of waiting for the nhs sleep study results so had a private one done, the private one is the one I’ve posted.
Eventually I got a call from the NHS one saying no sleep apnea and I was snoring all the way through the sleep study, I brought up uars and she said no because my blood oxygen was normal, I asked for the results to be sent to me but she only sent a report on what we spoke about and not the actual sleep study results.
I can’t make sense of it myself, please can someone help, just confused with private saying I may have it and NHS saying I don’t.
I’m looking to get referred to the snoring and sleep disorders clinic at UCLH. Ideally I’d like to see Mr Vik Veer, but I’ve heard he has an extremely long wait list, and only works once per week so waiting times to see him are over a year. Does anyone from experience know if this is the case? Should I book my referral with another clinician?
Can you guys take a look at my CBCT? Don't know to look for really? But I would love to hear if you guys think there is any confirmation that my airways are narrow or any other useful info one could get from a CBCT.
Now, I got this CBCT as part of a consultation with an orthodontist. I am thinking of doing a palatal expansion with MARPE. So I would really appreciate if you guys could comment on it as well and share if you think MARPE is warranted given the scans I got -- like, if there is any palatal narrowing, nasal cavity volume reduction, or anything like that.
Also, I heard that SARPE is a waste of time. How come? I would think that SARPE would be even better cause they slice your face right where it should be sliced and then expand it and let it heal.
EDIT 1: considering MARPE because my nose is chronically congested and no treatment seems to work. ENT says everything looks fine in my nose but I always feel some sort of resistance. I am 27 yo. , and I know it is older than ideal for MARPE but at this point I am ready to try anything really.
Average prdi is 12. I thought for sure this meant uars and then I did research and found that the WatchPAT isn’t always accurate, sometimes people will go into the clinic and have a completely different number. I’ve been through a lot of stress and wouldn’t be surprised if it was that than a breathing issue. It doesn’t seem like the breathing events are super correlated to REM. I noticed I didn’t have breathing events during deep sleep. It’s been hard for me to get an in clinic study right now. I do have a lot of day time symptoms but usually I end up not getting a lot of sleep because I’ll wake up early or not be able to sleep because of anxiety and nightmares.y daytime symptoms are severe but also could be explained by stress and just not much sleep in general.
For those of you who have recorded video footage of yourself having UARS episodes. What does it look like? My preliminary searches indicate anything from mild arousals to full body tantrums. I realize video footage alone is not a full diagnostic tool but it is valuable.
Myself for example, I'm not entirely sure if it is UARS, but my arousals seem to be side to side head shaking (looks like bad dreaming- but it's very repetitive and rem focused) and a lot of eye/ nose rubbing. No gasping, chest movement looks normal.
Curious about those of you who have gone down the video recording path, and if you haven't, I do recommend the cheap insight it can provide. (Using Wyze of cam myself)
This year or rather the last two I have committed to doing the upmost possible to figure out what is wrong with me.
After figuring out i had UARS or some related SBD, I naturally wanting to just sleep, rented out a CPAP which I couldn’t tolerate for even a minute. I then got a BiPAP which I was able to tolerate for a couple days before I ultimately panicked to the idea of putting it on.
I also had 3 sleep studies, a CBT scan, spoke to 3 neurologist, nada. This only related to sleep related stuff I have been trying to cure whatever I thought I had previously for half a decade.
After that didn’t work I got a MAD which didn’t really do anything other than hurt my jaw, although not permanently which is good. Afterwards I did Myofunctional therapy up until pretty much now which I have been diligent with.
After starting Myo (11 months ago) I followed through with the recommendation to get a lingual frenectomy, that didn’t do a whole lot so I did my first major invasive surgery and got a MARPE.
MARPE was maybe where I noticed some progress. But we’re talking like 10% better maybe, I feel like increased my baseline by a bit. My nose at the time was pretty clogged or I just wasn’t able to use it as effectively, because of either the turbinates or some mucosa that changes air dynamics when you are asleep.
Following that up in April I got a septoplasty, my thoughts were open space up with MARPE and then if I’m still suffering and not sleeping get a septoplasty.
I actually felt a decent amount of relief in May, post septoplasty, like I could feel my body becoming more resilient and sleeping heavier and feeling that sleep was deeper and more pleasant.
Catch up to now and my nose is worsened and more clogged than May. Right nostril is just 95% closed on exhale, inhale maybe 75% closed. When I wake up at night it is laborious to breathe through my nose so my body resorts to mouth breathing and obviously with mouth breathing my sleep is terrible.
I’m almost positive that SDB issue is nasal related and that my brain is super sensitive to the smallest decrease in nasal flow resistance. I got an allergy Panel done 2 weeks ago. Negative on literally every single allergen. I’m still doing saline rinse + Flonase + breathe right strips. I also tried Claritin but that did nothing really same goes with Xclear. I have yet to try Afrin but maybe that is what should be next, I don’t know what it would tell in terms of longer term solutions.
My ENT says that I look good and that everything looks fine, but he isn’t looking up my nose when I wake up /when I’m congested, so I would agree with him my nose is functional during the day.
Summer definitely plays a role in how badly I sleep. I made another post about that earlier this month. Most likely related to temperature/humidity (yes I have a humidifier and AC).
Just not sure what’s next at this point. Tomorrow morning I’m going to try and record my turbinate with one of those Amazon otoscope and see if my ENT can tell if my nose turbinates or tissue needs more reduction.
If anyone has any ideas I am ears but I have probably already tried it.
I am also on 1 mg of clonazepam nightly, which I have been taking for a while but I’m afraid to taper since it helps me relax before falling asleep, which my body naturally fears. Also on a small dose of magnesium.
I just want to be done, I’m sure you all can relate.
I've had UARS symptoms my entire life. I'm currently 27 years old. Like a lot of people here, I had to quit my job due to my health declining to a level that has left me incapable of committing to anything.
I'm still waiting on results from a sleep study I did with PES and I'm having a DISE in 2 weeks.
However, I did an awake CBCT scan and I believe it looks relatively normal compared to some of the narrowed airways I see in the forum?
Has anyone else had a similar experience with their CBCT despite having UARS symptoms? Were you able to treat yourself somewhat successfully?
Hopefully the pics are good enough, I did a home sleep study a little while ago and was looking for some thoughts on these results. Funnily enough I actually slept better than usual while doing the test and I think I only woke up once to go to the toilet. Despite everything seeming not that bad from reading it I usually wake up every couple hours over and over every day.
Thank you.
I have had a turbinate reduction in the past which helped me to usually sleep around 4-5 hours straight before waking up a lot of the time but the effect has since worn off. Turbinates on a recent CT scan looked fine as did my septum but also showed the chronic sinusitis I was already aware of. FLO nasal rinses and dymista spray help the sinusitis and breathing but seemingly not much effect on my sleep.
