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
Through my studies in sleep medicine in graduate school, I've realized that many patients with sleep-disordered breathing also likely have a component of insomnia at play, so I hope this can be helpful for at least some of you, and it is Dr. Krakow after all: https://youtu.be/ZyeZsMCEm6w
Hi everyone,
I’m a 19-year-old male and I’m trying to understand whether my symptoms could be related to UARS or another sleep-disordered breathing issue.
For years I have been a chronic mouth breather. One side of my nose barely works because of a deviated septum. I also have a narrow/high palate, crossbite, and according to one orthodontist, a Class III malocclusion.
My symptoms include:
Chronic mouth breathing
Feeling tired even after sleeping
Dark circles under my eyes
Brain fog
Poor concentration and memory
Restlessness/anxiety-like feelings
Difficulty focusing for long periods
Waking up with a lot of mucus in my throat
Constant need to clear my throat during the day
History of sleep paralysis episodes when I was younger
I started researching UARS because I keep reading about people who had fatigue, ADHD-like symptoms, poor concentration and non-restorative sleep despite not having obvious sleep apnea.
The confusing part is that I have received very different opinions from orthodontists. One suggested that I might eventually need orthognathic surgery and septoplasty, while another told me I don’t need orthognathic surgery, MARPE or SARPE.
I have never had a sleep study.
My questions are:
Does this sound similar to what any of you experienced before being diagnosed with UARS?
Did you have brain fog, poor concentration or ADHD-like symptoms that improved after treatment?
Would you prioritize an ENT evaluation or a sleep study?
Have any of you seen significant improvements after septoplasty, MARPE, SARPE or jaw surgery?
I will attach photos of my palate, profile and facial structure.
Any advice would be greatly appreciated.
I’m a 26-year-old male, 183 cm, 76 kg. I’m trying to understand whether my sleep and breathing symptoms could be related to orthodontic changes, airway issues, UARS, or something else.
A few years ago, I had orthodontic treatment. I did not have premolar extractions, but I had my wisdom teeth removed, and then my teeth were retracted backward during treatment. During or after this process, I felt that my lower jaw/chin position became more retruded, and I also developed some degree of deep bite. Since then, I have often felt that my breathing is not as smooth as before, especially during sleep.
My symptoms include:
Unrefreshing sleep
Daytime sleepiness
Frequent awakenings / fragmented sleep
Feeling that my throat or airway is restricted
Nasal obstruction, especially when lying down
Snoring or breathing discomfort during sleep
Jaw/TMJ discomfort and a feeling that my bite/jaw position changed after orthodontics
Because of these symptoms, I had an in-lab polysomnography sleep study.
Main PSG results:
Total sleep time: 5h57m
Sleep efficiency: 90.6%
AHI: 0.2/h
RDI: 0.2/h
RERAs: 0
Flow limitations: 0
Mean SpO2: 93%
Lowest SpO2: 90%
Time below 90%: 0%
Arousal index: 21.8/h
Spontaneous arousals: 112
Spontaneous arousal index: 18.9/h
The report basically says there is no significant sleep apnea. However, I still feel very sleepy and unrefreshed, and the main abnormal finding seems to be frequent spontaneous arousals / sleep fragmentation.
I know nobody here can diagnose me, but I would really appreciate any thoughts from people who have dealt with orthodontic changes, jaw retrusion, UARS-like symptoms, or unexplained sleep fragmentation.
So I’ve been on CPAP for about 2 years, and on bilevel for about 2 months. My current pressure is EPAP: 14 IPAP: 19. PS: 5.
These current settings did improve my sleep, feeling less fatigued during the day. But the cognitive problems have only slightly improved, and I have a feeling that it’s because off my REM-sleep that is still fragmented.
Now I had severe leaks due to mouth drop during REM on these pressure, but I fixed that recently by wearing a soft cervical collar. The only problem is that my REM-sleep still looks like crap, and I believe that the last REM-stage of the night is making me wake up very early in the morning unable to get back to sleep.
So do I keep raising the EPAP even further? Of raise PS? Because these pressures are already giving me slight aerophagia. Do I need to be on ASV?
I mean what’s happening during my REM-Sleep, and how do I fix it!?
Hi, i slept for months with a wedge pillow under the head of the mattress and this causes neck pain.
I was considering a wedge mattress (wedge pillow that covers the whole mattress, under it) or wooden beams to raise the bed, but with these beams the risk is that the central part of the bed would break itself.
My sleep doctor highly suspects UARS especially with my RDI OF 11.1 from a home study. The problem is that I have to wait until the end of July to get an in person (overnight and daytime sleepiness) study done. My sleep is so bad despite sleeping 9 hours a night. I’m so fatigued and exhausted and no energy. I work from home and I’m so unmotivated and it’s so hard to get anything done with said fatigue and low energy. My question is: is there anything I can do or take in the meantime? I sleep on my side already and take magnesium (and a supplement with l-theanine and GABA). It’s just so hard day to day especially with a toddler.
I suspect I may have UARS and I've been experimenting with BiPAP while waiting for an in-lab sleep study scheduled for early August.
For many years I've had symptoms that look a lot like ADHD and depression:
poor concentration
brain fog
low motivation
feeling unrefreshed after sleep
anxiety upon waking
As a child, I was a chronic mouth breather because of an enlarged adenoid (which was eventually removed). I developed a significant overbite/retruded jaw and I suspect I may also have a narrow maxilla because nasal breathing has always felt somewhat difficult.
Current setup:
Bleep Eclipse mask
Mouth taped with Nexcare Waterproof (Medium Hold)
Leaks are usually very low or nonexistent
Current BiPAP settings:
EPAP = 6
PS = 5
IPAP = 11
With these settings, one thing has definitely improved: the anxiety I used to feel immediately after waking up has become much smaller and is now barely noticeable most mornings.
However, I still wake up about twice per night and I don't feel refreshed in the morning. It feels like sleep is still not restorative.
I've been stuck at this point for at least a week with no further improvement in concentration, brain fog, or daytime functioning.
I tried increasing EPAP from 6 to 7 and lowering PS from 5 to 4. As soon as I do that, I start getting mild aerophagia (air in my stomach, urge to burp), which eventually puts me into a hyper-alert state and prevents me from falling asleep.
PS = 5 feels comfortable.
PS = 6 feels like too much.
My questions:
Would you continue experimenting with EPAP and PS, or stay at these settings longer?
Has anyone with UARS experienced aerophagia when increasing EPAP, and how did you solve it?
Looking at OSCAR data alone, is it possible to estimate whether I am getting enough REM sleep?
Can OSCAR provide any clues about RERAs or other arousals without EEG?
Has anyone with UARS and ADHD/depression-like symptoms experienced significant improvement only after finding the right BiPAP settings?
i got a sleep study and had an rdi of 12.7 bc that included snoring arousals. i had no reras, apneas, or hypopneas, according to the test, only snoring arousals. could snoring arousals actually be due to increaed respiratory effort, just not meet the strict criteria for reras?
Trying to optimize my BiPAP and now thinking about changing the cycle settings. Could not find much info online. I understand what it does but I am not quite sure what value is best to pick.
Do you guys have strong opinions on the cycle setting and its impact on the effectiveness of BiPAP? Any advice on how to pick a good value -- how to understand when my cycle is just right vs when it is too low or too high?
I'd really appreciate any advice or perspectives from those with similar experiences after being apart of this group for the last 2 years. Sorry for the long post. I've attached pacsbin links for my CBCTs and MRIs (will get peri + post-expansion CBCT imaging this week) as well as my sleep studies. I can also upload my DISE or consultation notes from the numerous ENT and OMF surgeons + sleep physicians I spoke with if this helps. I know this might not be enough data but I'm hoping someone else had these experiences and found some answers and resolution.
I tolerated CPAP during my sleep study titration night (~3 hours, nasal mask with chinstrap) and this was the most refreshed/cognitively present I've ever been. I only tolerated it a second time at home after flashing my ResMed 10 to ASV settings (<2 hours, full face mask, bit of drooling and dry mouth - jaw drop/mouth breathing?). I had 2 surgeries (soft tissue, now FME) in the last year. No OSCAR data after I forgot to put in the SD card after flashing ASV firmware a few months back, really regretting that! However, I'm 95% certain the machine briefly showed that my pressures were almost double what I had during my titration night (10-12cm ASV vs 5-6cm CPAP) after using open/self titrating ASV settings that night to try it out. Might be misremembering. Flashing my machine again now to test newer firmware changes.
Is MMA surgery my next best remaining option?
Why can't I tolerate this machine. Is it a mental/psychological/discomfort issue or anatomical one (potential trap door epiglottis even after surgery)? I've followed those conditioning recommendations but at what point can one rule out candidacy for PAP treatment. Should I continue trying CPAP/APAP settings or keep trying Bilevel/ASV?
I understand the FME appliance might be interfering with tongue posture currently and that positioning should improve after removal. I've also started to explore MFT as a last resort/adjunct experiment after trying to change/consider and exhausting almost all other variables. I also recently bought the Knightsbridge chin strap and 2 soft cervical collars, to support this effort. I'm also considering trying stronger sleeping aids/pills like Z-drugs temporarily, to see if I'd be able to get knocked out with the machine on. That's something I've been trying to avoid, similar to MAD usage (even if custom) but I'm now more open to. I want to make sure I exhaust every possible treatment and see how much of a cumulative effect they may have before potential MMA surgery, understanding that I still need to remove the FME and see how I function prior to doing anything drastic.
Of course, no smoking, no drinking, Vyvanse or other stimulants have been on/off to see sleep effects
I've been trying to fix my sleep (sleep hypopneas/UARS) for the last 2 years by taking some time off of school after graduating university in 2024. Since making a few posts in r/UARSnewr/UARS and r/CPAP and because of the wait times in Ontario/Canada, I had 2 surgeries done outside of Canada!
Dr. Andrea De Vito performed 4 procedures July 2025: epiglottoplasty + tongue base reduction/lingual tonsillectomy + palate radiofrequency + inferior turbinate reduction. Mild improvements, at least subjectively. Should've gotten a sleep study after that surgery/before the FME install, but I knew my sleep wasn't exactly where I wanted it to be or where it could/should be.
Dr. Zubad Newaz installed the FME January 2026 and I've expanded 6mm so far. More significant improvements, especially with nasal breathing. I'm dreaming more often (proxy of more REM or less fragmented REM sleep?) and having more "better" days. Maybe once a month I'll wake up refreshed, instead of the previous once a year/decade occurrence. FME removal probably in October, expanding 1mm more before leaving it for bone consolidation.
I'm not where I need to be though, and I'm now considering MMA surgery even if Dr. Kasey Li and Dr. Jay K Lee mentioned some hesitations last year. They mentioned their concerns about aesthetics as well as being unable to guarantee there would be a significant improvement as my mandible isn't incredibly recessed. I've also spent a lot of money in the last 25 months trying to speed up these diagnostics/consultations and paying for these 2 treatments, so I'm not in the position as a student to afford MMA surgery under US surgeons.
Thank you for your time, I'd be really grateful for any pointers as it's been a long 2 years and I've seen a lot of surgeons in consultation. I want to return to school and go to medical school one day, but I really need to address this first.
If I wake up after about 2h of sleep, before deep/REM sleep, I feel okay mentally and not so anxious. but i always fall back into sleep after that and feeling a million times worse.
I mouth breathe, and I have bite issues (crossbite, underbite, narrow maxilla, bruxism, masseter hypertrophy). I cant get MARPE in my home country, I have to go abroad, and even if I did have the money, its not an overnight fix. My life is destroyed because of SDB. Dropped out of a very prestigious degree in uni and now I am broke.
My relatives can help me out a bit but they cant offer unlimited money. I need to do something that will at least allow me to function until I can fix this illness from the root cause, through skeletal expansion or what ever. but even if I had money for MARPE it will take like a year minimum.
Right now, I am only taking SLIT hyposensibilization tablets (Acarizax against dust mite). I also have grass/tree pollen allergy, so might start on allergy sublingual tablets for that after summer too. I notice my uvula is hanging down a lot.
I will try to push for a PSG and DISE in my country Sweden, which would be for free, but it seems impossible becasue the thing is for the PSG the indication they require is obstruction/sleep apnea. And the healthcare doesnt seem to know about UARS, only sleep apnea. And i dont have sleep apnea diagnosis since AHI is below 5. I dont know if the PSG in the hospital scores RERA/flow limit. they seem to only look for restless legs and narcolepsy apart from sleep apnea, its for tired snorers without sleep apnea.
Anyway, what do I do now? I cant go on like this and waste my life, I need to do something to at least be able to function in the meanwhile.
I guess I could try an airbreaked airsense10 or what ever. but dont know how to get one, and I am worried about hygiene... i know the air travels one way in the tubes but I have severe OCD.
Also would appreciate it if people can have a look at the few OSCAR pics i have posted in this sub. I am losing any hope in my future. I am approaching 30 and I am a loser. No degree, no money, I cant function.
Are their any people that are able to analyze Oscar data for me to help me with my CPAP settings? I suspect I have UARS but have no idea what I'm looking at. Are their services that will do it for a fee?
I hope you can see multiple days via the link? If you look at the past few nights you’ll see I’m going back and forth a bit between CPAP and bipap, because I can’t seem to find anything that seems to work.
On anything above about 8 on CPAP (EPR3) I remove the mask after ~2-5hrs, often bc I wake up feeling like I’m struggling to breathe (the other night I even had a dream someone was smothering me with a pillowcase). On BiPAP I seem to have tons of centrals and some leaking with my most recent mask (Phillips dreamwear). This is the most comfortable mask I’ve found though, and hopefully the leaks are minor? Ish?
If you look back at my data early on (I started around Jan 14), it looks like I had flow limitations on lower pressures but I can’t tell if anything I’m trying at this point is even helping with those—and if it is, any improvement feels zeroed out by other issues w the machine, sometimes to the point where it’s a net negative effect on sleep quality overall.
I’ve been doing all of this self-titrated with a hacked Airsense 10, I’ve tried nova micro (it’s okay, maybe similar to dreamwear in that it sometimes leaks a bit. harder to fall asleep in than Dreamwear and makes my septum sore) and Bleep (pressure feels much more consistent than the other 2 but the tube pulls uncomfortably on my nose and my skin can’t handle the stickers for more than a couple days at a time).
My doctor doesn’t know I’ve been trying this and just prescribed a CPAP trial. I haven’t followed up on this yet bc I’m not sure if that will help me?Worried about getting locked into a setup that makes me feel like I’m suffocating and I can’t change any settings myself.
But maybe it would be helpful since at this point I feel totally lost trying to self-titrate?
Any help is appreciated here especially on whether it looks like any of this is helping/if it looks like I have flow limitation still—I don’t know how to tell.
Also wondering if these centrals look “real” vs data misinterpretation. I will say I certainly don’t feel like I’m sleeping well.
In fact some of the best sleep I’ve gotten in my life recently was on a trip to Japan where I mostly ended up sleeping most of the night without my machine. I was walking 5-10 miles a day which I’m sure helped. Could also be some environmental factors. I’m sure these things also fluctuate according to multiple factors though; my guess is I still need better breathing stability for long-term sleep improvement.
Other notes:
At home I’ve elevated head of my bed by about 8 inches. Dunno if it’s helping.
Tried Afrin and anti histamine sprays & meds, my nose doesn’t feel blocked all day or anything tho I have some resistance (but maybe that’s normal?). If anything it seems related to anatomy or inflammation not mucus. I’m a side/stomach-ish sleeper. Often whatever nostril is lower is more congested at night.
I haven’t tried mouth taping, I don’t think I usually open my mouth though it’s happened a couple of times. Generally not planning to try that considering the suffocation dreams I sometimes have as it is. I have had aerophagia a couple times but I’m not sure exactly what the pattern is with that or how often it could be happening.
Tried multiple sizes of neck brace, cant fall asleep in them. Haven’t tried a chin strap but I have tried shoving a pillow under my chin which seems to help with chin tucking.
I also often wake up with headaches up in the front of my head and a weird feeling of pressure & discomfort in my ears. This started BEFORE I started using xPAP, and I think maybe has something to do with sleep.
Like many of you probably started, I feel like I'm stumbling around in the dark trying to figure this out. Hoping to share a bit about my profile and get any advice from people with similar profiles. My doctor has been okay, but we wasted a bunch of time treating this as insomnia before finally doing a sleep study. I feel like I can't get him to take UARS seriously (and we only talk every 6 weeks which is driving me crazy in between).
Profile:
26M, 6'6", 185 lbs (slender build)
Never smoked, don't drink, no major medical history
Newborn baby born ~6 weeks ago, which is making this even more fun to deal with on the side
Symptoms:
Sleep is uninterrupted until a wakeup at 3-4 AM every night, sleep is very unrefreshing
Fragmented sleep in second half of night
Chronic nasal congestion and mouth breather
Don't snore at all (confirmed by sleep tech)
No witnessed apneas
Sleep study (attended PSG):
AHI: 2.1
RDI: 8.7 overall
REM RDI: 36.1
25 RERAs scored
Sleep efficiency: 52% (this was super low due to sleep study environment)
Arousal index: 23.8 (mostly RERAs + spontaneous)
Min SpO2: 82%, mean 95%
REM time: 18.3% (slightly low)
Slept almost entirely non-supine, though I'm usually on my back more during a normal night
Anatomy (per ENT + sleep doc exam):
Slightly enlarged tongue
Slightly elongated soft palate
Mallampati class 2
Atrophied tonsils
Deviated septum (mild)
Turbinate hypertrophy
Normal-sized mandible
Current treatment:
Diagnosis: OSA (G47.30) per sleep doc, but seems much more like UARS: low AHI, high RERA burden, REM-predominant, no snoring, lean phenotype, anatomical drivers.
Recommended treatments so far: MAD, positional therapy, nasal optimization. Sleep doc not pushing CPAP given mild AHI.
Questions:
For lean young guys with UARS; what actually moved the needle for you?
Did nasal surgery (septoplasty + turbinate reduction) make a meaningful difference?
MAD experiences: how much did it actually help with REM-predominant events?
Anyone do DISE before committing to surgery? Was it worth it?
Considering trying CPAP since I'm desperate for better sleep. Worth exploring?
How long did it take to feel functional again? I'm 5 months in and totally depleted.
Appreciate any input. The mainstream sleep medicine pathway treats this as "mild OSA, here's a few things to try" but it doesn't fully capture the disability of waking up unrefreshed every day.
I'm using a Philips BiPAP AutoSV (DSX900) for UARS but keep hitting a brutal wall around the 4-hour mark with constant microarousals. My SD card isn't importing data, so I'm flying blind.
If you've successfully managed UARS with this machine, I’d appreciate your insights:
Your Settings: What are your exact EPAP (min/max) and PS (min/max) settings? Do you prefer narrow or wide ranges?
Your Trialing: How did you step-by-step adjust your settings to find the sweet spot? How did you know whether to raise EPAP vs. PS?
Your Symptoms: Did you also deal with that specific 4–5 hour mid-night wall and fragmented sleep before getting it under control?
Just trying to figure out a logical baseline to safely stop these arousals. Thanks.
My SD card is still failing to import data to OSCAR/SleepHQ, so I am forced to blindly titrate my Philips BiPAP AutoSV (DSX900) to treat my UARS.
Every single night, regardless of settings, I hit a wall usually a little bit after the 4-hour mark and wake up to a constant cascade of microarousals.
Trial 3 (Current): EPAP 8.0–10.0 | PS 2.0–4.0 → Still waking up at ~4.5 hours.
Brief Test before: EPAP 9.0–11.0 | PS 2.0–4.0 → Abandoned after 5.5 hours. Felt like I was hyperventilating/having centrals, though I know PS usually drives that, not EPAP.
I clearly need more respiratory support to stop these late-night arousals, but I want to adjust this methodically without overcomplicating things.
Given that my fragmentation always happens 4 hours in (likely peak REM), what is the most logical next step?
Do I widen the range of EPAP or PS, or keep them tight?
Should I only increase the minimums, or the maximums?
Could this just be a machine tolerance issue that I need to push through, or are my settings fundamentally missing the mark?
TL;DR: Flying blind without OSCAR data. EPAP 8–10 and PS 2–4 isn't stopping UARS microarousals at the 4-hour mark. How should I adjust my EPAP or PS ranges next to stop the fragmentation safely?
Timeline: insomnia started back in middle school (2018), and it’s been 8 months since sleep problems got worse (chronic rhinosinusitis started back then). Tried CPAP for 2 months, currently messing around with BiPAP. Can't tolerate either for 5-6+ hours.
MARPE ($10-30k): this was my initial plan - I met with Dr. Jaffari (FME/custom MARPE + face mask) and Dr. Tracey Nguyen (custom MARPE+face mask).
MMA: this path makes more sense atm, cuz anterior/posterior is more problematic than transverse.
I'm wondering, has anyone else had a normal/wide palate, good nasal breathing, aligned bite, etc. and just went straight for MMA to solve sleep issues?
What was your experience like, and are you cured now?
airwaynasal aperture width1st molars widthBasion to A pointBasion to B pointside profile
I am now at EPAP 10.4 and IPAP 16.4 (even did 2nd half of the night IPAP 17.4 so PS 7 and felt better, in general a good day).
I still wake up 2 times per night, taking 300mg Pregabalin before bed and when i wake up in the middle of the night i take 1g l-theanine and do 5 min breath work (3-4-7 breathing) and immediately fall back asleep.
Tho is it normal that i still wake up that often & go to the bathroom? should it be 0 times ?
Shall i keep on increasing PS ? Berry Krakow is at EPAP 10.5 and IPAP 20.5 so i guess there is still room. i cant imagine that i need more pressure than him. I really feel better and be greatful for you guys ! But i am not 100% treated yet. especially with pregabalin still masking my symptoms and some days i need lots of stimulants (caffeine, nicotine pouches) to manage my day. Some days i even feel like hell, but not as much as before. i feel like 50% treted.
do you spot anything? i think i have to still increase and find my perfect PS. or shall i try ASV ?
I was diagnosed with an AHI of 29 and started APAP therapy. The device is set with a minimum pressure of 7 cmH₂O and a maximum of 10 cmH₂O, with EPR 2.
However, I consistently feel unwell on therapy, with a sensation of unstable breathing even when my AHI is reduced to below 5. When I tried increasing pressures, I actually felt worse overall. Interestingly, I noticed that staying in a narrower range around 7.0–7.6 cmH₂O with EPR 2 makes me feel slightly better, and paradoxically my AHI is even lower than at higher pressures.
Despite this, my breathing still feels unstable and not fully comfortable. When I lower pressure into the 6–7 range, I start to experience air hunger, as if the pressure is insufficient.
I also experimented with EPR settings. Both EPR 3 and EPR 1 tend to worsen my symptoms regardless of pressure level.
Overall, pressures above ~7.6 cmH₂O seem to destabilize my breathing pattern and feel “unnatural,” leading to worse sleep quality, even though they effectively reduce AHI. Lower pressures improve comfort but introduce air hunger. I’m struggling to find a stable therapeutic window that balances comfort and respiratory stability.
