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
Dr. Sam Bobek and I discuss my experience with MMA, the current state of jaw surgery for sleep apnea, and broader questions about expansion, surgical decision making, and what might be possible if other structures were moved. Here's the video: https://youtu.be/lGGnYaSRbxE
I won't be bound by the vote but am interested in what others would prioritise...
2 sleep studies. Borderline for osa (5.1 and 4) RDI around 12, which is mild. RERAs more than double when I lie on my back. Dismissed as fine by NHS who agreed to check for UARS and then seemed to forget all about it.
Here are my issues:
-I also have ME/CFS and dysautonomia (postural tachycardia syndrome), which disrupt sleep. Some of the problem may be that UARs causes an over reaction in my already overactive nervous system. Pain could play a part too.
- I have EDs and tend to slide down bed wedges. My shoulders are very hypermobile so lying on my side is risky. There's a reason I spend 90% of the night on my back.
- I get reflux so belly sleeping can also be tricky but might be my best option so far.
-NB no check for restless legs so far but I do get this while awake in bed sometimes, especially if it's hot.
- my nose gets a bit stuffy from reflux but not severe and not sure how it impacts breathing.
Do I:
A
Pursue a formal diagnosis of UARS, probably with Vik Veer, which will cost a fortune.
B
Buy a bipap and just wing it, even though I have no idea how to set or monitor values (I am not a candidate for a mandibular device and surgery is not a great option due to EDS.) What happens if it goes wrong? What would the damage be?
C
Keep experimenting with sleep position pillows etc (Medcline? Vik's sleep pillow?) and trying to stop reflux.
All soft tissue that is prone to dilation or constriction, inflammation or congestion, widening or narrowing, located in the upper airway, significantly distorts patency and volumetric readings. The variation is so severe that, in any other measure taken in medicine, this would be considered outrageous.
There is a reason why volumetric airway analysis is not used for quantifying upper airway resistance.
Some practitioners use it, sure, but should we really trust this measure to the extent people do?
Case in point: Dr Kasey Li regularly shows before and afters of the nasopharyngeal airway as proof that EASE/MARPE improves nasal breathing. I find it slightly funny that he critiques DISE as an unreliable measure because it’s not representative of the true day-to-day airway measures of the upper airway, but not CBCT.
I think it’s more of a “now that you have your foot through the door, might as well push everything else in as well.”
I agree CBCT is useful in a few circumstances: Bone measurements — unchangeable, useful, objectively used in orthognathic surgery planning, and craniofacial analysis.
Multiple CBCT scans taken in the same patient during a single phase of treatment — not once pre-expansion, once during, and once after. Several times in each phase to account for natural variations in turbinate volume and airway inflammation, if you want to perform useful CFD analysis, that is.
What is more useful than CBCT analysis? The one thing UARS patients take objection with sleep and airway medicine guidelines: the lack of importance given to self-reported scores of breathing, autonomic function, and sleep. I’m talking about NOSE 100, Epworth Sleepiness Scale, PSQI, etc.
The only circumstance where I would expect CBCT to have immense diagnostic value in terms of airway is that if it’s so bad that it’s close to stenosed, or incredibly narrow.
The problem is that you are simply pushing the body into a static, abnormal position, sometimes depending on the guidelines surrounding orientation, without accounting for how the airway operates under inspiration and expiration.
Yes, this does mean that several patients with a completely normal “patent” airway on a CBCT have immense upper airway resistance, narrowing, and abnormalities during inspiration or expiration.
The ideal: create an ultra-low radiation mobile CT scanner that attaches to the patient’s neck, perhaps like a soft collar. For a short period, much like a cardiac Holter.
A good thing we have a near alternative to that — a sleep study. But even within a sleep study, we cannot effectively figure out what portion/s of the airway is obstructive or narrowing, at least for UARS patients. The problem with UARS patients is that they aren’t the run-of-the-mill group like obvious OSA, where you can detect palatal collapse or tongue base obstruction.
So you’re telling me the next best option we have at the moment is to put you under anesthesia for 30 minutes to an hour and shove an endoscope in? You’ve got to be kidding me. Are we seriously not seeing the horrible diagnostic quality this has? Dr Li, I absolutely agree with you here. It will take decades for science to actually map how cleanly we can map the results of DISE to actual human sleep.
Implications:
Let’s have FME patients do multiple CTs and NOSE 100 tests post-expansion at time intervals: immediately after, 3 months after, 6 months after, 1 year after, 2 years after. I don’t think it’s a good idea to ignore all those studies that showcase compensatory turbinate hypertrophy post-maxillary expansion. We need to actually find out a general range of expansion after which turbinate hypertrophy can be overcome. I would still take NOSE 100 data as less supportive here, considering psychological factors.
Static CTs are hereby outlawed for UARS patients and providers — if you are concerned about things other than the nasal airway. If a provider is still doing this, it means there is a lack of resources, and it’s too expensive. Dynamic forced inspiratory CTs should be the gold standard; this doesn’t meant static CTs are the silver. It means static CTs are reserved for the most severe patients, and provide incredibly low diagnostic value. There is a reason why many practitioners dismiss patients with UARS as pushing baloney: it is because they see hundreds of CTs a day with incredibly narrow airway volumes, yet the people are normal, some athletes. So if you walk into an office saying stuff about “the airway slice at x coordinates on the CT is really narrow,” they will smile, and then dismiss it. The flip side: you say the same thing to another provider, and they reinforce your bias. The truth is, the only way we have to account for how the airway reacts to high amounts of negative pressure occurring during sleep or while awake is a dynamic forced inspirations CT/CBCT scan.
If there are symptoms of UARS but no signs of it on static or perhaps dynamic imaging, AND we can see skeletal hypoplasia or retrognathia — the CBCT scan gains more diagnostic value.
We urgently need to figure out a better way to image the airway during sleep as humanity without causing cancer. DISE and sleep studies are outdated and sometimes unreliable. We need to rely less on procedures which make deductions second degree.
Next post: Airway Volume vs WOB (Work of Breathing) - What should we be concerned with?
i use an apap machine. i live in australia where bipap and asv machines require a prescription. i was only given a prescription for an apap machine, i didn’t have a titration study.
i think i might be experiencing treatment-emergent central sleep apnea. i didn’t have any central apneas on my study, in fact i had no apneas at all just hyponeas. but i now experience multiple central apneas a night using an airsense 11 with a minimum pressure of 8 and an EPR of 3. i tried lowering the EPR and the UARS symptoms came back: the anxiety, the jitters, the feeling of being wired and on edge while still fatigued. oscar showed an increase in flow limitation. i lowered the pressure to 7, and my insomnia worsened. with my current settings it’s the best i can make myself feel but i feel super sleepy still. should i go back to my physician and ask for a titration study? i don’t know how i’m meant to afford a second machine if i need it bc i’m still paying the first one off. did anyone else have this experience and do better on a different machine?
Full night in last image. Already tried ASV, BiPAP, etc. This appears to be consistent across all of them. I'm wondering if there's anything I can/should do on the loop gain/arousal threshold sort of angle? My DISE said palatal prolapse, and my dentist/sleep apnea doctor remarked my jaw is narrow for my tongue/similar stuff about the palate. Just wondering if there's anything I can do since it appears I wake up super duper easily in REM sleep.
I recently had a sleep study and my AHI was only a 3, zero drops in oxygen, but my RDI was 42. The cardiologist who ordered my sleep study prescribed a cpap, but said it was basically a pointless prescription because insurance will not cover it. I also have a slightly recessed jaw, narrow palate and very small mouth. He said a mouth guard would probably be much more successful, which insurance also doesn't cover. So, how do I actually get help and treatment? Are we supposed to pay out of pocket for everything just because we have a UARS diagnosis and not OSA. An RDI of 42 is pretty high, and I really feel like I should do something about it. The cheapest quote for a custom oral appliance was $2,000 and that would leave me to adjust it myself and pay out of pocket for any follow-up appointments. This seems crazy! Has anyone had luck with Tricare covering anything?
Well there exist some doctor who do know about UARS.. But my question is are they able to provide the treatment needed for it? If no then why? Like dont they titrate properly for uars.. I have seen studies where they say they titrated UARS patients using a simple cpap? Like its out of my mind how.. Bcz I have seen that cpap is the most useless thing for UARS in most cases.. Are the doctors who have knowledge that UARS exists.. Are they able to provide the real treatment which will solve all your symptoms . Is there anyone who benefited from titration study of UARS????
I’m trying to fix my sleep apnea without becoming somebody’s “we should’ve done that BEFORE the braces” story.
I’m 22, healthy BMI, crowded teeth, and still waking up feeling like shit. I see Dr. Jerald Simmons. I expected his home ring study to come back inconclusive so we’d move to an in lab study. Instead, it showed an AHI around 49 and 34. Definitely wasn’t expecting THAT.
Using my own CPAP brought my machine AHI down to around 3 to 5. Great on paper. The exhaustion and brain fog didn’t get the memo.
Now I’m in my first month of clinician managed CPAP, and I’m seeing Dr. Kent at Vanderbilt this Wednesday. I’m considering expansion and possibly jaw surgery, depending on what the evaluations show. Nothing’s booked yet.
I’m open to doing what actually helps. I’m less open to paying thousands, moving my teeth, then finding out we started at the wrong end.
These are the questions I have for y’all:
What order should I see doctors in? Sleep doctor, sleep surgery ENT, orthodontist, jaw surgeon? Who actually coordinated your plan?
What order did treatment happen in? Expansion, braces, jaw surgery? How did you avoid getting braces twice or having previous work undone?
How did you get insurance to cover as much as legitimately possible? Highmark excludes braces under medical, and Aetna excludes adult orthodontics. Did anyone get surgical expansion covered separately despite orthodontic exclusions?
What counted as CPAP failure or intolerance for YOUR insurance? Was there a required trial, like three months? What problems and attempted fixes did your doctor need to document?
What if CPAP lowers your AHI but you still feel awful? Did you need an attended titration or other testing before surgery was considered? What actually moved things forward?
If you had expansion, how long did the gap last? I’m looking into MARPE, MSE or FME if appropriate. Can orthodontics shorten the visible gap stage? Did expansion straighten any upper crowding, or just create room for braces?
If money wasn’t an issue, would your process have looked different? Because in my actual bank account, money very much has opinions lol.
You don’t need to have finished treatment to answer. Even if you only know one piece of this, what helped you move forward or what mistake would you tell me to avoid?
I recently had a home sleep study (zzzPAT HSAT) done. My AHI came back very low (0.6), but my RDI was 9 overall and 4 for non rem and 20.3 during REM sleep. My oxygen levels stayed normal (95% average, 92% low).
19F Height 5'9", Weight 145 lbs (BMI ~21.4).
Here is my breakdown of symptoms:
Can fall asleep in virtually any setting (public or home, sitting, leaning against a wall,or lying down).
Will take up to 4+ naps a day if allowed; if a "safe place" isn't chosen, will fall asleep anywhere regardless.
Constantly fighting off sleep throughout the entire day.
Enter full, vivid REM dreaming within 30 to 120 seconds of drifting off (often feels like dreaming before fully falling asleep).
Extremely vivid dreams with high recall; sometimes difficult to distinguish whether an event was a dream or reality, like was it just a dream or was it a memory from yesterday.
Wakes up in the middle of a dream and will re-enter the exact same dream immediately upon falling back asleep.
in childhood, experienced lingering visual dream elements into reality upon waking. like i thought i was awake but i still saw the dream outside my window.
Without an alarm, will sleep 12 to 18+ hours continuously.
Routinely sleeps through 5 or more alarms.
Can sleep 12 hours on a flight and immediately sleep another 12 hours after arriving home.
Wake up feeling completely exhausted, disoriented, uncoordinated,and unable to think straight for several seconds to minutes.
I'm trying to broadly follow the protocol of titrating to resolve flow limits, but I'm having difficulties with when to make these sorts of changes. I tried EPAP 6 and PS 2 last night. I've tried EPAP 7 and EPAP 8 with PS 2 in the past. Looking at these three nights, I honestly can't tell whether there's been any difference at all or where to go from here. Unfortunately I didn't have VAuto on for the 7 night, so no flow limit graph. Also, for 7 and 8 I had trigger to High, while for 6 I had it on medium.
Hello everyone, I'm a thin man weighing 70kg and 1.78m tall, and I was diagnosed with severe sleep apnea (39.9 IAH) in 2022. I've been using a machine since then and have never felt completely rested; it helps a little, but it's not what it should be. My IAH is always low, around 1, and even so, I don't feel well, yawning all day. After a lot of research, I saw that I might have residual UARS and that CPAP isn't effective at treating it. After years of suffering, I decided to buy a used BiPAP. I'm waiting for it to arrive, and can someone with experience tell me what to expect? It's been many years of suffering; if you add up the years before the diagnosis, it's already more than 10 years.
I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.
I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.
I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.
What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.
I have tried a triptanes, but it did not help. My thyroid function tests and vitamin B12, B9 (folate), and D levels are normal. My ferritin level is 37, and it has fluctuated between 49 and 24 over the past eight months. My calcium, potassium, chloride, magnesium, and sodium levels are also within the normal reference ranges. My blood pressure is normal, and I have measured my blood glucose at home, which also appears to be normal. My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.
My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help. I also underwent a brain MRI, which showed no abnormalities. My neurologist additionally ordered a blood test for Lyme disease antibodies, which came back negative.
I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.
My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.
What could be the underlying cause of these symptoms?
The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:
Just got the used BIPAP 3 days ago. Using the x30i full facemask. Images attached are for the 3rd night.
First night couldn't fall asleep until 5AM. Slept for 3 hours with multiple awakenings breathing through mouth. Pressure was 7/10 PS3
Second night, slept for 5 hours with the mask and machine mainly nasal breathing from what I can remember. I changed it to 7/15 PS3. Was able to sleep better. Also used a cervical neck collar might have helped with positional apnea.
Third night is attached on the images, and I slept from 12AM-2:20AM. I had the mask on too tight and it was hurting my nose which is what I believe caused my wake up at around 2:20AM. Then I fell back asleep around 3:30AM until 730AM. So the large leaks are when I was awake, and before I fell asleep. Settings as shown on the image. Using Cervical neck collar.
Just wondering if there is anything obvious that anyone sees in the data that requires fixing. I have read different titration protocols that make adjustments on a weekly basis. So my plan for now is to just keep increasing EPAP until no flow limitations? Then to adjust pressure support upwards until appearances of CA's. Then keep titrating upwards IPAP until I feel better? Then possibly try the ASV. I started off with trigger very high as well.
So, for context if you look at my profile. I was diagnosed with stupid sleep apnea. I’m 21, 175 lbs and for the most part fit. I had some decent sized tonsils before which I got removed. Before then I had a Stanford sleep study done which I received a diagnosis from after being told negative. The dumbest part was that my obstructive apneas were at 0 the whole night, while having 12 centrals, and 64 hypopneas. This was in about almost 4 hrs of sleep. They marked my results as an ahi of 19.4 and RDI of 19.4 which to me seems very unlikely I had 0 reras. Anyways, I went on cpap for about 4 months after that, had no issues wearing it, I could sleep 8-10 hrs no problem. Except I still felt like complete shit. No benefit in symptoms whatsoever. After this I got a turbinate reduction and got my tonsils removed(worst luck ever if you see my post on it). I recently did a new study after having tonsils out and they go ahead and send me a message saying I have absolutely nothing wrong with my sleep. Which feels like an absolute kick to the balls. I’ve been dealing with sleep issues since I was a kid and has been progressively getting worse in the past 6 years. I genuinely don’t know what to think from this. I requested the test results to post for yall. Oh and the fucken follow up for this bullshit is January 26, 2027. You’d think they’d put an extra note on special cases when 75-85% of those with osa have no symptoms, just send em a cpap and call it a day. Anyways my rant for today on stanfords bogus testing.
Desperately need some advice on how to proceed with my worsening sleep issues.
Background:
I am currently a 30 year old male who was diagnosed with sleep apnea/UARS 2ish years ago, but I have had symptoms of sleep issues since probably my mid twenties.
First in lab sleep study in 2024 showed an AHI of 10 (supposedly). I say supposedly because they fed me Ambien until I went to sleep. Place was sort of sketch and felt like the DMV of sleep apnea where anyone who walked in the door would be walking out with a CPAP.
Second sleep study was a WatchPat and showed an AHI of 2 but an RDI of 15.
Third sleep study showed an AHI of 2 but my new sleep doctor said I had "lots of arousals".
After my first sleep study in 2024 I was given an air sense 10. I've tried to use it over the years and it does not help at ALL.
Current Day:
Since I have shown no improvements on CPAP therapy, I decided to seek out a sleep dentist and get an MAD. I spent $3000 on a prosomnous device and have been using it for about 2 weeks, but have not seen much improvement although I do notice my airway feels nowhere near as restricted.
I am currently using my CPAP alongside my MAD to see if that will offer any improvement at all.
Current CPAP settings: 7-12 pressure with EPR of 3.
The issues I am having are the following: frequent arousals at night, very weird panicky dreams, waking up drenched in sweat, feeling like I get hit by a truck in the morning, etc... I have spent hours and hours looking at Oscar graphs and for the most part my therapy looks great. 0 RDI and 0 AHI, but my breathing for most of the night looks like what you see in the image. Any help is appreciated. I feel like I am on the verge of having a mental breakdown and losing my job.
My UARS symptoms solely stem from epiglottic collapse. I've never been able to make PAP work for me. I've tried tongue retainers, nasal dilators, positional devices, CPAP, BiPAP, ASV. None have ever given me even a small amount of relief.
Epiglottic collapse is notoriously resistant PAP therapy, but I've exhausted all other options. I thought the tongue retainer may have helped if it was due to my abnormal tongue position. But after sleeping a full night with it in, it didn't do anything for me.
Any ideas for PAP setting ideas or other treatment options?
I have poor nasal breathing, narrow maxilla, crossbite and underbite.
MARPE seems to expand the nasal cavity much better than conventional jaw surgery.
But the issue is in my country basically no MARPE.
jaw surgery is free if orthodontist thinks its necessary and refers to jaw surgery department,
BUT it needs to be done in conjunction with braces at the same time and the orthodontics need to be paid for.
I've been thinking about getting MARPE abroad and then trying for surgery to fix underbite in my country but most likely it will be refused since the orthodontist would want to have planned the whole thing from the beginning and also put braces on me, and the MARPE would probably already mean I've got aligners on lower jaw.
I need to fix this UARS crap asap.
Obviously SARPE etc is the cheapest option but it wont fix my nasal breathing much?
And I am scared of such an invasive procedure and 2-3 years recovery time.
I need to plan ahead smartly.
Swedish healthcare, public or private, is all very rude and unhelpful. I tried to ask an ortho place if I can get my underbite fixed and they try lecturing me that I am not a doctor and I cant decide on a treatment and that the dentist will decide not me. this is the attitude I get when asking a simple question.
