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
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.
And somehow that result has me more confused than a negative test would have.
I was pretty convinced I had UARS. That was the whole reason I contacted Dr. Jerald Simmons in Texas.
The plan was simple. They would first send me a ring connected to an iPod for an at home study. If that came back negative or inconclusive, which is what I expected, I would go to Texas for the full in lab study with Simmons.
Except the home test was not inconclusive.
It was not even close.
On the first night, my AHI using the 3 percent rule was 48.68. Using the 4 percent rule, it was 22.85. My oxygen dropped to 78 percent, and I spent 14 percent of the study below 90 percent.
On the second night, my AHI was 33.53 using the 3 percent rule and 9.38 using the 4 percent rule. My oxygen dropped to 81 percent.
Almost everything was obstructive. The doctor signed the report and diagnosed moderate to severe obstructive sleep apnea.
And honestly, I am glad it finally caught something.
I have spent so long knowing my sleep was not right and trying to figure out what the hell was happening. Seeing an actual diagnosis felt like a relief. I am not upset that the test came back positive. I am glad I finally have proof that something is wrong and something real to treat.
I am just confused about what this diagnosis means for everything I thought was happening.
One study was during the day because of my railroad schedule. The other was overnight. Both were positive.
That should make this simple, right?
Apparently I have sleep apnea.
But this is where my brain starts breaking.
I already own a CPAP. I adjusted the settings, titrated it, and watched the data through OSCAR. While using the CPAP, my AHI never looked anything close to 30 or 40.
I understand that could simply mean the CPAP was doing its job and preventing the events.
I also hacked the CPAP so it could run in bilevel mode. So when I say I tried BiPAP or bilevel, I am talking about the same hacked machine, not a separate prescribed BiPAP. The AHI looked low on that too.
The problem is I still did not feel better.
I did not wake up refreshed. I did not feel like the machine changed my life. I felt basically the same the next day.
The only obvious difference was that I stopped snoring while wearing it.
I use a nasal mask because I breathe through my nose. I am not normally a mouth breather.
I am also not overweight. I am 23, 5 foot 8, 165 pounds, and my BMI is around 25.
I do snore badly. I have a recessed jawline, crowded teeth, and a tongue tie. I suspect my airway is narrow, but I have not actually had it measured yet.
All of that, plus my symptoms, made me think UARS.
Most people with UARS seem to have a low or normal AHI. Their regular studies miss everything, especially home studies, and they eventually need someone like Simmons to look closely at flow limitation and RERAs.
I thought that was exactly what would happen to me.
Instead, the damn ring basically screamed severe sleep apnea before I ever made it to the lab.
Now my follow up is September 3, and I honestly do not know what the next move should be.
Does this mean my UARS self diagnosis was simply wrong and I have regular obstructive sleep apnea?
Can someone have a high AHI and still have UARS type flow limitation or RERAs that explain why CPAP lowers the AHI but does not make them feel better?
Could this ring be overestimating my AHI, especially with such a big difference between the 3 percent and 4 percent numbers?
Or are the oxygen drops and repeated events too significant to write off?
If the home study already confirmed sleep apnea, is there still a reason to go to Texas for the full Simmons in lab study?
If you had this report, your CPAP data looked fine, but you still felt like shit every morning, what would you ask Simmons on September 3?
As confusing as all of this is, I am grateful that I finally have a diagnosis. I would much rather know something is wrong and figure out how to treat it than keep going in circles while every test says I am fine.
I just want to make sure I am chasing the right problem now.
If anyone here understands UARS, CPC ring testing, OSCAR, or Simmons and his in lab studies, I really want to know what you think is happening.
I have completed a HST (WatchPAT) and CBCT and have been told different things from multiple specialists.
The ENT strongly suggested I should get my grade 2 tonsils removed and fix my mildly deviated septum.
The airway orthodontist believes my upper and lower jaw are a bit too narrow and suggested MARPE.
Another provider said it was my tongue tie and nasal valve collapse and urged me to get both of those issues surgically treated.
I’m sure you’re all familiar with the saying, if you ask a barber if you need a haircut, he’s going to tell you you do. Or, to a man with a hammer, everything looks like a nail. This is kind of how I’ve been feeling going to each of these specialists and not getting everything looked at in totality.
Does anyone have a suggestion for a an expert in UARS who can assess you from all aspects of breathing and point to different specialists if needed? Or someone to even tell me if my sleep/breathing is the cause of all of my issues (crushing fatigue, brain fog, reliance on prescription stimulants to survive each day, etc.)?
ETA: For context, I live in SoCal but am willing to travel.
Ive basically been in a deep hole with all the awful hpa axis dysfunction symptoms for about two years. You name it i have it. Gastro problems, mood issues, dysautonomia, fluctuating between total insomnia and sleeping ok, full body akathisia level panic. I have had extensivr bloodwork and there is nothing abnormal. But finally got in for a sleep study and doc is convinced i have a sleep disorder. We just dont know what kind yet. Now I havent had an mslt because i have to finish weaning off a dumb antidepressant i was stuck on when i was gaslit into thinking it was “just stress,” so narcolepsy without cataplexy is still a possibility as is plmd. But because i have multiple mris showing sinusitis (my right nostril is always blocked) and i have a very thin neck and hypermobile tissue, i think uars is a valid potential issue.
My sleep study does include a reras index. It is 0. Is it safe to say i can probably rule this out? Or is it still worth maybr coming by a bipap and self experimenting with it?
I asked Claude Fable for the mechanism, and the logic is very similar to how repeated use of Afrin causes chronic nasal congestion.
There's cyclic causal model here, which I'm hypothesizing:
Flow limitations due to narrow pharyngeal airway damaging the autonomic nervous system over years, causing vasomotor rhinitis and nasal congestion which causes more flow limitations and worsens sleep and damages the autonomic nervous system more, leading to even more congestion
My specific case and data points:
Narrow pharyngeal airway + dust mite allergy (swelling up my turbinates by itself) + deviated septum ruining my sleep in my teenage years and causing autonomic nervous system damage leading to a complete lack of circadian rhythm, post exertional malaise (PEM), cognitive impairment, post prandial crashes, poor sexual function, gut issues, anhedonia with emotions suppressed significantly.
I did 3 turbinate reductions, septoplasty, EASE expansion, and treated my dust mite allergy; and I still have nasal congestion alternating from side to side wildly, effectively rendered with a single nose for breathing while sleep, and zero symptom improvement overall. I was labelled by ENTs with a vasomotor rhinitis or non-allergic rhinitis diagnosis. As I treat my pharyngeal airway with MMA surgery, I'm thinking the vasomotor rhinitis will disappear only as my autonomic nervous system heals. And this is what I realized when I did electrotherapy (similar to TENS), it improved my circadian rhythm, nasal breathing (vasomotor rhinitis), sexual function, emotions coming back and led to deeper sleep (a higher arousal threshold?). It cut through a lot of these symptoms all at once. But this didn't last since I hadn't gotten my MMA then, so I did have the flow limitations, and electrotherapy was only a small dose of parasympathetic shift. I'm glad I did EASE, but the vasomotor rhinitis persisting means that I have realized no symptomatic benefit of the bigger nasal airway, because I could sense even during expansion that my turbinates were swelling up to take up the additional space, it happens even now. Yoga, meditation, Nuropod vagus nerve stimulation had no noticeable effect on my nervous system, I'm guessing I needed a stronger dose of parasympathetic shift.
My prediction after MMA:
MMA reduces flow limitations despite only a single nose available for breathing during sleep, that's going to heal my autonomic nervous system with lower flow limitations to respond to, and once that heals the rhinitis is going to slowly disappear which is going to make my airway bigger with an extra nose for breathing, and this is going to compound and improve my sleep. I'm guessing it's going to take a few months to heal my autonomic nervous system with a single nose despite a larger pharyngeal airway. My sleep has been improving slowly, I'm now a month post MMA. If things plateau, I'm considering a stellate ganglion block (SGB) which is a much stronger dose of parasympathetic shift, and now I have the MMA to support it.
I recently just found this forum and am so thankful there's a community for people who have experienced this sleep disorder. Since January:
- I've worked with a myofunctional therapist and learned I have a tongue tie at the back holding my tongue down
- Visited an orthodontist for potential jaw surgery about my recessed chin (was told the chin recession was very slight and he didn't believe I needed surgery)
- Done at home sleep studies (which came back all regular)
Basically this year I realized that my extremely loud snoring (seriously, so bad that friends have said they wanted to film it) was an indication of a bigger issue.
I just did an airway assessment and was shown that my tongue takes up pretty much my entire airway, and they suggested that when I'm sleeping it likely is fully blocking my airway. The dentist told me to look for UARS indicators on my sleep test at home, which I saw was not tested for.
I've gotten a referral for an in-lab sleep study and then for an ENT (I live in British Columbia).
I am feeling so overwhelmed right now with this news. The exhaustion and fatigue make so much sense, continuously feeling wired and tense. Extremely irritable over nothing. I have had so much anxiety and felt so heavy and negative for years but realized I might not be sleeping properly.
Does anybody have a similar story or have any recommendations on what they did? The dentist suggested Marpe, releasing the tongue tie and then doing myofunctional therapy which I plan to do, I'm going to try to get a machine to hold these symptoms down in the mean time. Just feeling so discouraged about my future with the belief this will get worst and worst.
Any advice or suggestions are extremely appreciated.
Barry Krakow says this all the time; prioritize clearing the nasal airway!!!!
Personally, if I'm stuffy, not even BIPAP works. Hell, even getting 9 hours of sleep doesn't work either.
What I use is nasal rinse to shrink the turbinates and clear out the gunk, flonase to keep it open, as well as claritin-d generic (every single thing here is KEY!)
For example, 2 days ago I had 8 hours of sleep, and I still felt like crap because I forgot to do my nasal routine
and 3 days ago, I had 7 hours of sleep with the bilevel, but again, I felt like crap beacuse I skipped my nasal routine
Just last night, I ONLY did my nasal routine and got 6 hours of sleep (i skipped my bilevel because I couldnt' sleep with it last night, which happens occasionally), and I feel 10x better than I did the previous nights even with bi-level and having 8 hours of sleep.
I'd say I subjectively feel 7.5/8 out of 10 on the energy scale.
Obviously, if I had combined bi-level and gotten 8 hours of sleep, I'd be at a 9.5/10
Just do a test yourself: lay down on your side, let your jaw completely relax, and try breathing through your nose. If you're stuffy, it's impossible - and that's how you're sleeping at night every night when you're congested, no wonder you'll feel like crap. And if your nasal passages are clera, it's MUCH easier.
I recently made the switch from CPAP (with EPR 3, Pressure at 7.2) to a Bilevel machine (Aircurve Vauto 10). Being roughly inspired by some of the posts on here, I decided to use the following settings on my first night:
Mode: S
EPAP: 4.0
IPAP: 9.0
Easy-Breathe: On
Ti Max: 4.0s
Ti Min: 0.1s
Trigger: Medium
Cycle: Medium
Below is a screenshot from OSCAR from when I was on CPAP:
Below is this night on CPAP on the Glasgow index:
Below is a Screenshot from OSCAR of my first night on Bilevel:
Below is this first night on Bilevel on the Glasgow Index:
As can be seen, the use of the bilevel machine has basically eliminated the instances of flow limitation at least as recognized by the machine. This is seemingly reflected in the fact that the instances of 'Flat Top' and 'Top Heavy' events have been significantly reduced. When I zoom in on the periods of stable breathing, the individual breaths appear more rounded compared to when I was on CPAP.
I am now interested in the emergence of these 'Skew' events which have significantly increased by using Bilevel. I am also interested in improving the 'No Pause' and 'Variable Amplitude' metrics. My understanding from Barry Krakow MD is that a good goal is to maximize the instances of normal sleep breathing.
Just from eyeballing, my theory is that my breathing is becoming unstable during periods of REM. Do you think that I would benefit from increased pressure support during these periods and that I should therefore trial an ASV device?
Just to summarize my questions, based on your experience and/or theories:
What settings do you think I should change to eliminate these Skew, No Pause and Variable Amplitude Events?
Moreover, does the clustering of breathing instability as can be seen in the graphs of the night I used Bilevel suggest that I would benefit from increased pressure support during REM and that I should try an ASV?
I would be extraordinarily grateful for any help.
Please also forgive me for my ignorance when it comes to this area. I have tried my best to learn from this forum and from other resources. I am definitely a complete novice when it comes to this.
Let me know if there is any vital information that you need and that I have left out.
Wanna ask you out what kind of tools, medication or routines you‘ve implemented in your daily life to deal with your UARS symptoms the best you can, given being untreated ist your current state.
For me it’s a combination of keeping my circadian rhtyms on track, enough sun light exposure, cognitive stimuli, running a healthy diet, working out 2-3x per week, creatine supplementation and other key nutritional components, avoiding porn and masturbation, (underrated for mental health, if you‘ve struggled in your teens and early adult life).
Now, I‘m considering to re-integrate a sauna protocol because of its neuroprotective and detox benefits.
Wondering about how you experience dreams. Do you often dream, or do you rarely remember your dreams? Are they intense, vivid and long dreams, or are they rather vague and generally short?
For those who managed to treat their sdb, have you noticed a difference in the frequency or how your dreams are before vs after treatment?
Do any of you experience a rocking/bobbing/swaying (like MdDS) with your UARS? I'm trying to ascertain if my UARS/SA is the actual cause of this particular form of vertigo for me...? 🤔 (alongside/due to my OI too).
For those with a high arched or narrow palate, and for whom consequently a suction hold with proper tongue posture isn’t really doable, what do you do when breathing?
I find that I‘m very often aware of my tongue/mouth due to not natively being a nose breather. Even after years now of exclusive nasal breathing, it’s still unnatural and inconsistent, and always comes to the forefront of my mind, eating up my brain bandwidth and can drive me crazy, since there’s no comfortable/healthy posture I can maintain for extended periods. I’m constantly twitching/pursing my lips or moving my tongue.
*edit found my latest sleep test so added the result for it
Non rem ahi 7.5 Rem ahi 34.5 , rem sleep 25% of total sleep Respitory arousal index 8.8 Spotanious arousal index 8.8 Rera index 0.3 Total arousal index 17.8 Saturation median 92% Lowest saturation 86%
As we all here I am sleeping to to bad. Waking up as I know of between 1-5 times before needing to take a pee that is usually on the clock after 5 hours (have medication for it but). If I manage to re-sleep its even more fragmented sleep. This is a normal night for the sake of generalization.
I don't know my arousals, but latest measurement sleeping in hospital with all possible gadgets connected including brainwave things. AHI 7-8 side sleeping not Rem sleep, sleeping supine when in rem 30-35 AHI (can’t find the papers now, so going by memory). So rem-induced sleep apnea but I also think UARS since the non tolerance of c-pap and so on.
I have had surgery to remove tonsils and to make the tongue tighter and these are the two only surgery's they perform here in the Nordics in the mouth. I also had smaller surgery to straighten the septum and make nose less runny and easily irritated (this to aid with c-pap since I could not use).
I have tried different c-pap during different times, with of course different masks back and forth since 12 years, and the last time after my nose surgery to see if I could tolerate it, and I couldn’t and also it didn’t work (had sleep hq, checked oscar and so on). Those few nights with very low ahi I still felt like shit and record on time to have mask on was 5-6 hours.
What I have now and what I have tried.
Now:
I sleep in somewhat incline bed, with dentist made MAD that I most times use in conjunction with a tongue retainer and nose dilator. I also made my an ad-on on the MAD that would keep most of the uvula in check so it could not fall backwards as much, but since I didn’t feel any difference I removed it since it was harder to use the tongue retainer at the same time
I train the muscles with the Emst 150 and I mostly nose breath when awake. I also do singing bell canto exersizes.
I am in the age where belly fat don’t disappear so easily but also quite well trained and I also do yoga and meditation.
I do have reflux possible also silent so inclined bed as I told and I also take supplements for it, not doctor prescribed though.
Use red-light therapy on the turbinates.
I mostly sleep like shit and in the nose nostril it mostly feels like one of the nostrils is always a little bit to much congested (swollen turbinates) to feel good. The spray one is not supposed to use, will help for the moment if I use it. To ad to it I have a quite nasal voice. I also use nosespray that is non addictive and do nearly daily nettipot cleanings.
What I wan’t to do but can’t do in my country is the DISE to look on wtf is happening when I sleep (not available in my country as I spoke to several doctors who said no we dont do that). And also since I can’t do it, I cannot have surgery here for anything more anyhow so I am quite burned on that road. Jaw surgeries do not exist.
What I have tried but am not using now (regulary)
Already mentioned fail of c-pap
Tongue depressor to keep the tongue from falling back (impored from new zeeland)
Positional therapy with woody backpack as the latest (well it do work to not keep me on the back, but I wake up since I want to go on back because of pain in my body on sleeping just on the side. I woke up and changed side. Still felt terrible even though sleeping on my side should be good enough. Maybe sleep got fragmented because of pain.
Those EPAP air vent one use on the nose to create back pressure. I even had one I built my self into an unused c-pap mask in order for it to fit better that did not work.
I also bought the sleeping system from the very nice brittish sleep doctor, to sleep in recovery position but me and him gave up since I always ended up on back anyhow (I even filmed my self sleeping with night camera)
ExiteOsa to train the tongue muscles. I used the highest setting for several months, nothing happened appart from making hole in my pocket since it was subscription based and then their remote connection turned of the device even if it was unused (sneaky bstards)
I-coro training of muscles.
Butekeyo breathing (still do this to some extent when doing yoga or walks)
2-3 different external devices to use electrical pulse to keep throat open and tongue protruded. The ones that you put on your throat. Apart from skin rash and that them sucked in counting ahi, they did not work at all for me.
What I know my self that may be left to try (and possible additional tips much appreciated)
What I might try depending on your advice and experience is to import a possible chineese bi-pap or if I can find some that is not breaking the bank on e-bay or similar (they don’t sell bi-pap here and when I asked my sleep doctor if I could test she basically gas-lighted me and said no we don’t do respiration devices).
iNAP the device that you put in your mouth that make vacuum in order to prohibit the soft parts.
I think that possible my epiglottis is not in the best shape since former smoking and drinking (stopped several years ago) and the somewhat smal reflux, if they are part of the puzzle I don't know.
I am honestly out of ideas apart from the bi-pap or the other device, and will my nose even tolerate bi-pap? I also heard that the surgery I had made is not super compatible with c-pap and such.
Please do not be ignorant and just say stick with the c-pap is going to get better (no its not and in this group I think you know that).
I might have forgot some things I have tried since I basically bought the most I could import to my country.
Sorry for a long post, but this was the shortest I could write.
Thanks for taking your time to reading it and appreciate every small tips and tricks as every little possible extra percent of better sleep I gladly take.
Background: Diagnosed with OSA through at home Watchpat. AHI: 26, RDI: 35. I am lean so I was confused by the whole diagnosis. I did the sleep test because I typically wake up about every 2 hours give or take 30 minutes throughout the night. Doc suspected apnea.
I have been using the Airsense 11 for the last month. Got used to sleeping with it, no leaks, mouth taping with N30i. Can sleep about 6-8 hours with it, but I'm still waking up roughly the same amount of time, like it has not helped maintain sleep. I started to wonder if maybe I have UARS and decided to get my data and assess it via OSCAR. The Flow limitation however appears pretty low(just based on my first night of data collection), which I think is a good sign.
The flow rate, well this is beyond my wheelhouse. Sometimes it looks crazy before a wakeup or a detected apnea or a CA, and the rest I have no idea if it's normal or not. I need help from someone capable to interpret these graphs and what they mean.
The tidal volume looks pretty jagged at some points and steady at others. And the others graphs like inspiratory/exp time is beyond me.
I lack the knowledge/experience to assess all these graphs and whether my breathing is disordered. I would love feedback on what's going on, possible reasons why I'm waking up every couple of hours. Potential solutions, adjustments to the cpap settings. I've read to try more pressure, turn off EPR, etc.
Genuinely thank you for your input, let me know if you need any other details to assess this more in-depth.
I am seeking second opinion from raw data from my home sleep study (AHI 2.5) and awaiting response. In the meantime i learned about glasgow index and uploaded the edf to check what it shows.
I recently had an appointment with a respiratory consultant to request a sleep study for suspected apnea/UARS. While I managed to get referred to a sleep study in this appointment, as I have significant symptoms of a sleep disorder, I am very concerned by some of the comments made by the consultant which came across as dismissive and ignorant.
As soon as I sat down, he started commenting on how I was very young to be having this problem (26), very skinny with a thin neck (measured it by sight across the table).
But most concerning to me was that he examined my airway in, at most, five seconds, by asking me to open my mouth, glancing in, and concluding that “it looks open and fine”.
When I could ask questions at the end, I brought up the possibility of UARS, which he immediately dismissed saying that his examination proved I don’t have it. He did not look at my nose at all or even seemed to think it was relevant. I was exhausted on that day and a bit stunned by this, so didn’t challenge him on this, as I was also just grateful to have gotten referred to a sleep study and didn’t want to mess that up.
Now I’m concerned about the sleep study itself. Do all sleep studies usually measure breathing effort through your nose? Is it only apneas that get measured or scored unless the consultant requests it? Can a patient call the hospital that conducts the study to request this?
I’m worried that either this won’t be measured in the sleep study, or even if it is, the consultant will dismiss the results if it doesn’t present as classic sleep apnea.
To be clear, I have difficulty breathing through my nose at times, it often feels narrow and the airflow insufficient. I have two immediate family members who have had similar issues with nose breathing their whole lives, although I’m the only one with this level of sleep problems.
It’s hard to put into words just how exhausted I feel every single day, how much of my life is impacted by this, and how much worse it has been getting every year for over a decade (although I think I’ve had this in some degree for most or all of my life). This feels like hell and I’m terrified that all the time (and money) I have put into getting this examined will be wasted by an ignorant and lazy doctor.
My 20 yr old daughter did a home sleep study. Her results were AHI 5.7, RDI 12.8, 3% REM RDI 19.9. She has a genetic disorder with craniofacial features that indicate predisposition to sleep apnea. She sleeps on her stomach all night. The doctor said CPAP is totally optional for her but they will support it if she wants to try. She has significant daytime fatigue and slow processing speed. She is in college so I don't want to make her do this if it won't help her. Doctor is recommending APAP expedited at 4-8 CWP. My questions are: 1. does this seem like UARS? 2. Do you think APAP will help? 3. Does that setting look correct for her results?
i flat out can’t afford a sleep study rn, but i was wondering.
i cannot breathe through my nose very well, it’s definitely worse lying down and i have a small palate, but not by a huge margin. i had braces as a child but no extractions and i used a palate expander beforehand (clearly not expanded enough). i don’t really mouth breathe except during intensive exercise, i struggle to take deep breaths which led to me thinking i have asthma.
pulling on the sides of my nose massively improves nasal breathing. I’m exhausted all the time, sleep is unrefreshing and crazy brain fog, irritable, poor memory, dizzy when standing (iron levels are fine) but i dont snore, i dont wake up gasping for breath or with a pounding heart, recording myself sleeping showed my eyes opening randomly at times and tossing and turning but not really any stopping of breaths or mouth breathing. i wake up maybe once a night randomly but my mandible is definitely recessed so maybe OSA??
