"The problem with ENS is probably not that it does not exist."
April 18, 2016 4:30 PM Subscribe
Is Empty Nose Syndrome Real? And if Not, Why are People Killing Themselves Over it?
This medical mystery — a byproduct of common nasal surgery — has stumped many doctors and scientists, some of whom suspect the suffocating condition may just be imaginary. But that isn’t making the people who feel suicidal over its horrific symptoms feel any better.
This medical mystery — a byproduct of common nasal surgery — has stumped many doctors and scientists, some of whom suspect the suffocating condition may just be imaginary. But that isn’t making the people who feel suicidal over its horrific symptoms feel any better.
I read this article, which is excellent.
However, as a not-quite-trigger warning: hypochondriacs beware, the article totally had me feeling weird about my sinuses. Also, the surgery it discusses is incredibly common, so you may not want to read it if you have had nasal surgery and feel good about it. Body horror meets medical mystery.
posted by blahblahblah at 4:44 PM on April 18, 2016 [18 favorites]
However, as a not-quite-trigger warning: hypochondriacs beware, the article totally had me feeling weird about my sinuses. Also, the surgery it discusses is incredibly common, so you may not want to read it if you have had nasal surgery and feel good about it. Body horror meets medical mystery.
posted by blahblahblah at 4:44 PM on April 18, 2016 [18 favorites]
This was the weirdest medical story I've read in some time. It sounds horrible. There has to be some node of nerves that are damaged by the surgery?
posted by Bee'sWing at 4:47 PM on April 18, 2016 [1 favorite]
posted by Bee'sWing at 4:47 PM on April 18, 2016 [1 favorite]
"You are making a mistake. There has disappeared, goodness knows whither, my nose, my own actual nose. Presumably it is trying to make a fool of me."
-- Nikolai Gogol, "The Nose"
posted by zachlipton at 4:47 PM on April 18, 2016 [20 favorites]
-- Nikolai Gogol, "The Nose"
posted by zachlipton at 4:47 PM on April 18, 2016 [20 favorites]
It would've been great if the doctor doing the restorative surgeries had done a controlled trial right off the bat similar to the arthroscopic knee surgery trials. If he had, it would've either erased the skepticism or told us that we should be looking elsewhere.
posted by clawsoon at 4:48 PM on April 18, 2016
posted by clawsoon at 4:48 PM on April 18, 2016
It's like the "got your nose" gag taken to Cronenbergian extremes.
posted by Strange Interlude at 4:54 PM on April 18, 2016 [7 favorites]
posted by Strange Interlude at 4:54 PM on April 18, 2016 [7 favorites]
As I a hypochondriac who has had his turbinates removed, no joke, I had to stop reading. I don't even want any more details...ugh...is it hard to breath in here or is it me?
posted by ill3 at 4:55 PM on April 18, 2016 [3 favorites]
posted by ill3 at 4:55 PM on April 18, 2016 [3 favorites]
I've developed some low-level allergies as I got older, and they occasionally ended up blocking my nose entirely while I was sleeping. It only takes a couple of times of waking up oxygen-deprived and gasping to make you really anxious every time your your nose feels constricted at night, so I can empathize. In fact, I'm fighting back the urge to go hit up the Flonase now...
posted by tavella at 4:59 PM on April 18, 2016 [3 favorites]
posted by tavella at 4:59 PM on April 18, 2016 [3 favorites]
Stuff like this has got to sort of be a little from all the columns, yeah? Like, I don't find it inconceivable that, given there are a ton of nerves in your nose, some patients may experience nerve damage after a surgery. But underlying anxiety and poor coping skills surely don't help when it comes to adjusting to a new, highly unpleasant sensation. I wouldn't even place this in the same category as Morgellons, since that really has no possible organic cause and nothing that all the sufferers have in common as the trigger. All these folks had the same surgery and at some point afterwards report the same sensations in the same place they had the surgery. I also found myself wondering what it is like to live your whole life with chronically obstructed nasal passages and then suddenly your nose is clear. That's got to be weird, right?
posted by soren_lorensen at 5:02 PM on April 18, 2016 [2 favorites]
posted by soren_lorensen at 5:02 PM on April 18, 2016 [2 favorites]
The comments on that article contain stories by a few people who say they suffer from ENS. It sounds so horrible. The mind and body are on a constant loop, checking in, referencing, adapting, overcoming. There's so much we don't know. And there's so much we won't know when we just send people off with a "must be crazy" diagnosis.
posted by amanda at 5:03 PM on April 18, 2016 [1 favorite]
posted by amanda at 5:03 PM on April 18, 2016 [1 favorite]
To suffer is one thing. To suffer and be told by medical professionals that nothing is wrong? That’s enough to make some people want to end it all.
A key point, I think. And it's often not just that nothing is wrong, it's that you're weird, crazy, attention-seeking for continuing to try to figure out why you feel awful. There's no question our medical establishment has not figured out ways to ease rather than amplify the suffering of people who have physical pain not readily explained by our current understanding of the body. (I say this even though I believe that "conditions" like Morgellons aren't actually physical illnesses.)
posted by praemunire at 5:03 PM on April 18, 2016 [17 favorites]
A key point, I think. And it's often not just that nothing is wrong, it's that you're weird, crazy, attention-seeking for continuing to try to figure out why you feel awful. There's no question our medical establishment has not figured out ways to ease rather than amplify the suffering of people who have physical pain not readily explained by our current understanding of the body. (I say this even though I believe that "conditions" like Morgellons aren't actually physical illnesses.)
posted by praemunire at 5:03 PM on April 18, 2016 [17 favorites]
This is really interesting! I have to imagine there's some combination of physiology and surgery that causes these people to lose the sensation that they can breathe through their nose. They're perfectly fine and can breathe as much as they want but something about the structure of the turbinates and their lack thereof causes them to feel otherwise, to the point it consumes their lives. But how much of it has to do with their mental state and inability to cope with the new sensation? Could it even be that the surgery actually makes them feel just like everyone else but they're so accustomed to the way their shitty clogged nose felt that the change is unbearable? I'm not a hypochondriac and my turbinates are intact but even I acutely feel the way air flows through my nose.
I'm not a doctor, but I don't understand how you can be drawn to the profession but be so ready to disbelieve someone when they say they feel something is physically wrong with them.
posted by Mr.Encyclopedia at 5:09 PM on April 18, 2016 [11 favorites]
I'm not a doctor, but I don't understand how you can be drawn to the profession but be so ready to disbelieve someone when they say they feel something is physically wrong with them.
posted by Mr.Encyclopedia at 5:09 PM on April 18, 2016 [11 favorites]
This is one of those times i want to scream at the doctors "does it matter if it's not real? They are still in pain!!!!" The dismissive it's all in your head attitude is infuriating.
posted by double bubble at 5:10 PM on April 18, 2016 [29 favorites]
posted by double bubble at 5:10 PM on April 18, 2016 [29 favorites]
The symptoms as described in relation to the surgery remind me of phantom limb pain. Basically every organ that has sensory nerves and can be removed has documented cases of phantom sensation, predominantly pain. It would make intuitive sense to me that some people with removed turbinates would experience phantom congestion.
Personally, when cold season hits, I am willing to be put on as many meth-smurf watch lists as necessary to ensure that there is enough sudafed stashed away in my house, at work, basically anywhere I could possibly be, such is my hatred of feeling congested. If I had to endure phantom congestion every day of my life, with no relief and people telling me that I was just a crazy idiot crybaby, well, I would probably just want to kill myself.
posted by [expletive deleted] at 5:10 PM on April 18, 2016 [19 favorites]
Personally, when cold season hits, I am willing to be put on as many meth-smurf watch lists as necessary to ensure that there is enough sudafed stashed away in my house, at work, basically anywhere I could possibly be, such is my hatred of feeling congested. If I had to endure phantom congestion every day of my life, with no relief and people telling me that I was just a crazy idiot crybaby, well, I would probably just want to kill myself.
posted by [expletive deleted] at 5:10 PM on April 18, 2016 [19 favorites]
I'm not a doctor, but I don't understand how you can be drawn to the profession but be so ready to disbelieve someone when they say they feel something is physically wrong with them.
I get the feeling that "nothing is wrong" is a sort of shorthand for "there is nothing wrong with you according to my field, so if you need help then you need to go somewhere else". I mean, even if it's "all in their head" (a phrase that I dislike), that still means that they are suffering from something. People with Morgellon's are suffering from something, it's just not what they think it is (IMHO, obviously).
posted by It's Never Lurgi at 5:12 PM on April 18, 2016 [3 favorites]
I get the feeling that "nothing is wrong" is a sort of shorthand for "there is nothing wrong with you according to my field, so if you need help then you need to go somewhere else". I mean, even if it's "all in their head" (a phrase that I dislike), that still means that they are suffering from something. People with Morgellon's are suffering from something, it's just not what they think it is (IMHO, obviously).
posted by It's Never Lurgi at 5:12 PM on April 18, 2016 [3 favorites]
It says they feel like they're drowning all the time. I can imagine how hard it would be to get to sleep feeling like that. And not letting someone get any sleep is a proven torture technique, isn't it, one of the most consistent ways to drive someone to a breakdown?
posted by clawsoon at 5:13 PM on April 18, 2016 [2 favorites]
posted by clawsoon at 5:13 PM on April 18, 2016 [2 favorites]
I've lost sensation in my nasal cavity temporarily and on one side only (local anesthesia during dental work on the back upper molar), and it's a really weird and unpleasant sensation. I wonder if this is something similar.
posted by infinitywaltz at 5:14 PM on April 18, 2016 [1 favorite]
posted by infinitywaltz at 5:14 PM on April 18, 2016 [1 favorite]
The brain often doesn't deal very well with losing sensation. Famously with phantom limb pains, but there's cases with people who had intact limbs but some kind of nerve damage from injury and suffered absolute agonies because the brain isn't getting the feedback it expects and starts yelling. So I have no problem believing that in the case of some people that their brain is no longer getting feedback it was used to from the turbinates and is thus convinced that suffocation is at hand.
But yeah, some double-blind trials would be useful to establish whether the people with cloth implants are improving because of different feedback to the brain or placebo.
posted by tavella at 5:15 PM on April 18, 2016 [9 favorites]
But yeah, some double-blind trials would be useful to establish whether the people with cloth implants are improving because of different feedback to the brain or placebo.
posted by tavella at 5:15 PM on April 18, 2016 [9 favorites]
I haven't had turbinate reduction, but it might be in my future since I have the, uh, ample turbinates my family is blessed with. And allergies that fluctuate-- with age or with where I live, who knows. For now sudafed's my answer (and yeah, I'm on every meth watch list there is surely-- I've bought sudafed in 10 different countries and at least as many states).
But it's confusing, as someone with enlarged turbinates- I don't breathe through my nose. My nose is not a breathing organ. So it must be quite weird to have a surgery that's supposed to help-- and then discover that it makes it worse? How can anything be more blocked than the current state of "my nose is full of nose"?
I also wonder if these possible complications is what the last ENT I spoke to was talking about when he mentioned that drugs might actually be a better route that surgery.
posted by nat at 5:18 PM on April 18, 2016
But it's confusing, as someone with enlarged turbinates- I don't breathe through my nose. My nose is not a breathing organ. So it must be quite weird to have a surgery that's supposed to help-- and then discover that it makes it worse? How can anything be more blocked than the current state of "my nose is full of nose"?
I also wonder if these possible complications is what the last ENT I spoke to was talking about when he mentioned that drugs might actually be a better route that surgery.
posted by nat at 5:18 PM on April 18, 2016
I am so annoyed at how many doctors and professionals are recommending CBT as first line treatment for many chronic illnesses - and the suggestion that because CBT helps, there must be no physical illness.
Getting therapy to deal with having a chronic illness helps you deal with living with a chronic illness. It does not fix your illness and it doesn't mean you get your life back.
posted by congen at 5:25 PM on April 18, 2016 [40 favorites]
Getting therapy to deal with having a chronic illness helps you deal with living with a chronic illness. It does not fix your illness and it doesn't mean you get your life back.
posted by congen at 5:25 PM on April 18, 2016 [40 favorites]
congen: Getting therapy to deal with having a chronic illness helps you deal with living with a chronic illness. It does not fix your illness and it doesn't mean you get your life back.
CBT was inspired by Stoicism, so that makes sense.
posted by clawsoon at 5:30 PM on April 18, 2016 [3 favorites]
CBT was inspired by Stoicism, so that makes sense.
posted by clawsoon at 5:30 PM on April 18, 2016 [3 favorites]
Commenter Mark Swope suggested the only possible cause that occurred to me as I read this:
Mark Swopeposted by jamjam at 5:43 PM on April 18, 2016 [12 favorites]
This sounds like the surgery causes a permanent trigger of the "mammalian dive reflex." This is the same thing that happens to you when a cold blast of wind hits you in the face and you suddenly can't breathe.
I suspect in the case of the dive reflex, the nose is actually closing up and from the story, these are people where their nose is totally clear, but at the same time they feel like they are suffocating. Which sounds like a classic case of brain-body disjunction. The brain can sometimes be soothed by remarkably simple tricks; I remember an -- Atul Gawande, I think? - article in the New Yorker where he was exploring phantom itches, and is interviewing one guy with a phantom itch in an amputated limb, mentions to him that he's seen mirror therapy work, they find one in the house, and discover that just moving his good arm while he's looking at the mirrored one makes it go away. So I can absolutely believe that a little cotton can provide just enough feedback or turbulence or pressure to sooth the brain's desire for missing sensation. But it would be nice to establish it scientifically.
posted by tavella at 5:54 PM on April 18, 2016 [2 favorites]
posted by tavella at 5:54 PM on April 18, 2016 [2 favorites]
oh god why did i read this article
i haven't even had nasal surgery and suddenly i'm feeling the symptoms
posted by Jacqueline at 5:55 PM on April 18, 2016 [3 favorites]
i haven't even had nasal surgery and suddenly i'm feeling the symptoms
posted by Jacqueline at 5:55 PM on April 18, 2016 [3 favorites]
i am now breathing manually
posted by Jacqueline at 6:01 PM on April 18, 2016 [14 favorites]
posted by Jacqueline at 6:01 PM on April 18, 2016 [14 favorites]
And since I think the dive reflex is also responsible for Raynaud's phenomenon, I would expect ENS sufferers to experience the cold hands with whitened fingers (in pale people) characteristic of Raynaud's -- if ENS is a manifestation of the diving reflex.
posted by jamjam at 6:03 PM on April 18, 2016 [1 favorite]
posted by jamjam at 6:03 PM on April 18, 2016 [1 favorite]
I suspect in the case of the dive reflex, the nose is actually closing up
Is this simply your impression of how the diving reflex works, tavella, or do you have a reference for us?
posted by jamjam at 6:07 PM on April 18, 2016
Is this simply your impression of how the diving reflex works, tavella, or do you have a reference for us?
posted by jamjam at 6:07 PM on April 18, 2016
The Gawande article tavella referred to.
posted by emilypdx at 6:07 PM on April 18, 2016 [1 favorite]
posted by emilypdx at 6:07 PM on April 18, 2016 [1 favorite]
The Itch is available on the New Yorker's site, if you want to read about just how tormenting these phantom sensations can be. I would definitely avoid it if you are suggestible, though!
posted by tavella at 6:07 PM on April 18, 2016 [3 favorites]
posted by tavella at 6:07 PM on April 18, 2016 [3 favorites]
Sync! I did recall it slightly wrong though -- it was nerve damage to his arm, rather than amputation.
posted by tavella at 6:08 PM on April 18, 2016
posted by tavella at 6:08 PM on April 18, 2016
I don't know what it really is, but the anesthetic situation--I had problems with it, too--made me think that it might have to do with the fact that I have been having sinus problems for so long... I want to stop getting the barometric headaches. But I can't imagine what it'd feel like to inhale without resistance. How much resistance there is... is like my cue for how hard I'm breathing. It'd be like trying to eat when your body has lost all sense of when you're hungry or full. Changing how one feels hunger or satiation could seriously mess with you, but it's not going to impact everyone the same. Some of these things are just so personal and constant. Stuffy noses are distressing even when you can totally get enough oxygen. Why shouldn't the alternative also be difficult for some people?
posted by Sequence at 6:09 PM on April 18, 2016 [1 favorite]
posted by Sequence at 6:09 PM on April 18, 2016 [1 favorite]
Don't read it!
If it's undiagnosable, it may be at least partially memetic. So don't read a description of the symptoms.
I know that sounds like voodoo, but Interns' Syndrome is no laughing matter.
posted by gmonkeylouie at 6:14 PM on April 18, 2016 [3 favorites]
If it's undiagnosable, it may be at least partially memetic. So don't read a description of the symptoms.
I know that sounds like voodoo, but Interns' Syndrome is no laughing matter.
posted by gmonkeylouie at 6:14 PM on April 18, 2016 [3 favorites]
This just made me realize, too: My grandfather, just before he died, was going through heart failure, and was prescribed a benzo for anxiety. Because when he woke up and couldn't breathe, he'd get anxious and it'd make it even harder to breathe. That sort of thing can have a real origin and yet also be the sort of thing that creates a feedback loop with the anxiety to make it considerably worse. The benzo didn't help his breathing, strictly speaking, but it did let him rest more comfortably when it was a problem. Anxiety treatment might be useful even if there's a root biological problem.
posted by Sequence at 6:24 PM on April 18, 2016 [1 favorite]
posted by Sequence at 6:24 PM on April 18, 2016 [1 favorite]
"And so you scratch your head, because as a physician, it’s the hardest thing trying to understand when are symptoms real, when are symptoms real but exacerbated by underlying psychological issues, and when are symptoms completely psychological.”Hey doctor, psychological and real are not opposites.
posted by parudox at 6:28 PM on April 18, 2016 [23 favorites]
jamjam, checking the writeup of MDR it doesn't close up the nose as I was thinking, it just stops the breathing reflex. However, given the distinct symptoms of MDR -- not breathing, bradycardia, limited circulation to limbs -- I doubt there would be much trouble in diagnosing a issue, and the problem appears to be that there's nothing identifiably physically wrong.
posted by tavella at 6:30 PM on April 18, 2016
posted by tavella at 6:30 PM on April 18, 2016
Oh man, tavella's comment ("that their brain is no longer getting feedback it was used to from the turbinates and is thus convinced that suffocation is at hand") sequence's comment ("How much resistance there is... is like my cue for how hard I'm breathing") and this article are really making me re-evaluate my medical experiences.
I had enormous adenoids as a child. "Softball sized!" the doctor said excitedly after the two surgeries to remove them. One surgery was planned, but became two surgeries because they removed the normal amount of tissue for adenoids, then had to go back in 2 hours later and get the rest. After my surgery at age 9 I had to go to therapy to learn to breathe through my nose, as my nose had been significantly blocked by the adenoids and I was a mouthbreather. I *always* felt like I was drowning during those exercises. The amount of air I could get through my nose was not enough to make me feel sated, even though my airway was totally clear and I was taking in a normal volume. I was supposed to close my mouth and breathe through my nose to go to sleep. I could do that for about 2 minutes before opening my mouth and gasping for air, my heart pounding. No one believed me that I felt like I was dying during therapy and when practicing. I remember thinking, "How do people even live like this? Is everyone just feeling crappy and unable to breathe all the time?" Remembering this and writing this is kind of giving me a little flashback and making me breathe really heavy.
I am now 35 and started breathing through my nose during non-strenuous activities without thinking about it consciously at about age 30. I did my exercises almost every day in between. It just took 20 years for my brain to go from "different amount of air, must be not enough air" to "oh this is enough air." If I had this length of adjustment when so young, I can only imagine the amount of unconscious mental adjustment that these folks must be going through, when they have these surgeries at age 20, 30, 40.
posted by holyrood at 6:58 PM on April 18, 2016 [53 favorites]
I had enormous adenoids as a child. "Softball sized!" the doctor said excitedly after the two surgeries to remove them. One surgery was planned, but became two surgeries because they removed the normal amount of tissue for adenoids, then had to go back in 2 hours later and get the rest. After my surgery at age 9 I had to go to therapy to learn to breathe through my nose, as my nose had been significantly blocked by the adenoids and I was a mouthbreather. I *always* felt like I was drowning during those exercises. The amount of air I could get through my nose was not enough to make me feel sated, even though my airway was totally clear and I was taking in a normal volume. I was supposed to close my mouth and breathe through my nose to go to sleep. I could do that for about 2 minutes before opening my mouth and gasping for air, my heart pounding. No one believed me that I felt like I was dying during therapy and when practicing. I remember thinking, "How do people even live like this? Is everyone just feeling crappy and unable to breathe all the time?" Remembering this and writing this is kind of giving me a little flashback and making me breathe really heavy.
I am now 35 and started breathing through my nose during non-strenuous activities without thinking about it consciously at about age 30. I did my exercises almost every day in between. It just took 20 years for my brain to go from "different amount of air, must be not enough air" to "oh this is enough air." If I had this length of adjustment when so young, I can only imagine the amount of unconscious mental adjustment that these folks must be going through, when they have these surgeries at age 20, 30, 40.
posted by holyrood at 6:58 PM on April 18, 2016 [53 favorites]
can things, rather than people, be well-heeled? stopped me in my tracks, first graf.
posted by Zerowensboring at 7:00 PM on April 18, 2016
posted by Zerowensboring at 7:00 PM on April 18, 2016
I was already feeling a bit apprehensive about the prospect of my deviated septum surgery, which is scheduled for June. This did not help.
posted by The Card Cheat at 7:24 PM on April 18, 2016 [1 favorite]
posted by The Card Cheat at 7:24 PM on April 18, 2016 [1 favorite]
I also found myself wondering what it is like to live your whole life with chronically obstructed nasal passages and then suddenly your nose is clear. That's got to be weird, right?
It is glorious. You learn that things taste better. Chocolate was good before but orgasmic after. Finally being able to pull air through your nose was a miracle of modern medicine. Also, the floral section near produce is just gross.
I had the surgery in 2010. Weirdly, my ENT informed me of the risk of Empty Nose Syndrome, though not by name. But he described it as being if too much turbinate was removed, that there is a risk of the air pressure within the nasal cavities being wrong and causing other problems with breathing even though the passageway is clear. And as such, he had to be conservative with the turbinate reduction.
Anyway, he didn't call it ENS, but I'm certain that's what he was describing. The article obviously talks about a number of possible causes, but it does mention the pressure bit. I wonder why he would have been on board and aware of it? I suppose just random conincidence. But he was also a younger doctor, which I've seen tends to lead to more open mindedness.
I still breath through my mouth more than I'd like, but I can breath through my nose in all but the most allergyrific days.
posted by [insert clever name here] at 7:33 PM on April 18, 2016 [9 favorites]
It is glorious. You learn that things taste better. Chocolate was good before but orgasmic after. Finally being able to pull air through your nose was a miracle of modern medicine. Also, the floral section near produce is just gross.
I had the surgery in 2010. Weirdly, my ENT informed me of the risk of Empty Nose Syndrome, though not by name. But he described it as being if too much turbinate was removed, that there is a risk of the air pressure within the nasal cavities being wrong and causing other problems with breathing even though the passageway is clear. And as such, he had to be conservative with the turbinate reduction.
Anyway, he didn't call it ENS, but I'm certain that's what he was describing. The article obviously talks about a number of possible causes, but it does mention the pressure bit. I wonder why he would have been on board and aware of it? I suppose just random conincidence. But he was also a younger doctor, which I've seen tends to lead to more open mindedness.
I still breath through my mouth more than I'd like, but I can breath through my nose in all but the most allergyrific days.
posted by [insert clever name here] at 7:33 PM on April 18, 2016 [9 favorites]
Lifelong asthmatic and this, of course, makes me uncomfortable. I've awoken from dreams of suffocation to find that my nasal passages were completely blocked. Scary as hell.
posted by evilDoug at 9:45 PM on April 18, 2016 [1 favorite]
posted by evilDoug at 9:45 PM on April 18, 2016 [1 favorite]
Looking at the structure of the turbinates, they look like a triad on both sides. It makes me think there are connections to balance, location in space, and sighting. Medicine is great, but there are things where the dots don't get connected. Some concepts are for ease of medicine and research, but not valid, like Junk DNA, or like taking out large portions of this quirky organ that is right in the middle of human line of sight, sense of smell, part of sound production tone and echoing, and possibly with a lot of other functions not yet understood.
Last year, last year, medicine discovered that some females have prostate tissue. There is only one researcher studying the uterus. Stuff gets overlooked. It is interesting to me because we are looking at microscopic levels, chemical levels, sub-microscopic levels and still some functions are overlooked. But great stuff is happening, there are great ah has. My neighbor had a coronary stent put in, the doctor went in at his wrist.
As for me, I have given up on my left sinus. Never mind, I have a brick in there, and so it shall remain. Then you are down to how do I sleep? Not on the right side, because then my left sinus keeps me awake, but my right shoulder hurts, then my hand goes to sleep, then my left foot will hurt, then this doesn't work, then there is the other thing. I sleep like someone drowning slowly; thrashing up waves that launch the cats off the kitty corner of the bed.
posted by Oyéah at 10:09 PM on April 18, 2016 [4 favorites]
Last year, last year, medicine discovered that some females have prostate tissue. There is only one researcher studying the uterus. Stuff gets overlooked. It is interesting to me because we are looking at microscopic levels, chemical levels, sub-microscopic levels and still some functions are overlooked. But great stuff is happening, there are great ah has. My neighbor had a coronary stent put in, the doctor went in at his wrist.
As for me, I have given up on my left sinus. Never mind, I have a brick in there, and so it shall remain. Then you are down to how do I sleep? Not on the right side, because then my left sinus keeps me awake, but my right shoulder hurts, then my hand goes to sleep, then my left foot will hurt, then this doesn't work, then there is the other thing. I sleep like someone drowning slowly; thrashing up waves that launch the cats off the kitty corner of the bed.
posted by Oyéah at 10:09 PM on April 18, 2016 [4 favorites]
jamjam, checking the writeup of MDR it doesn't close up the nose as I was thinking, it just stops the breathing reflex. However, given the distinct symptoms of MDR -- not breathing, bradycardia, limited circulation to limbs -- I doubt there would be much trouble in diagnosing a issue, and the problem appears to be that there's nothing identifiably physically wrong.
I think the point is not that the reflex is really being triggered but that the brain thinks it is. So it's constantly waking you up to breathe because it thinks you aren't. That sounds incredibly awful and torturous.
And, no wonder these people are depressed. If I don't get enough sleep a few nights in a row I'm a weepy, angry moron. I can't imagine how it must feel to never get enough sleep.
posted by fshgrl at 11:24 PM on April 18, 2016 [2 favorites]
I think the point is not that the reflex is really being triggered but that the brain thinks it is. So it's constantly waking you up to breathe because it thinks you aren't. That sounds incredibly awful and torturous.
And, no wonder these people are depressed. If I don't get enough sleep a few nights in a row I'm a weepy, angry moron. I can't imagine how it must feel to never get enough sleep.
posted by fshgrl at 11:24 PM on April 18, 2016 [2 favorites]
This is why Voldemort was evil.
posted by Violet Hour at 12:13 AM on April 19, 2016 [4 favorites]
posted by Violet Hour at 12:13 AM on April 19, 2016 [4 favorites]
My heart breaks for sufferers of this condition.
As a medical transcriptionist for an HEENT MD for a few years, I found cases of dysosmia especially chilling. This term describes a range of olfactory distortion, phantom aromas and absence of smelling ability. One patient perceived everything, absolutely everything as having an aroma of feces. The woman was half-mad, unable to eat, recoiling from others, needlessly obsessed with her own hygiene. The cause was likely minor surgery performed a year earlier. She was being treated with SSRIs as nothing seemed to help or change her condition. Another patient experienced the world as burnt, with everything smelling of fire and smoke. He spent time in a psychiatric facility when he could no longer sleep inside a building as his nose told him the structure was ablaze.
Our bodies are elaborate and delicate constructions, with systems that overlap and interact. Cuts or trauma can have consequences beyond imagination, especially where delicate sensory structures are concentrated.
This sort of thing is precisely why I avoid surgery for anything that can be treated alternatively. Most scribes that I've known, in fact, avoid going to doctors altogether.
posted by kinnakeet at 2:49 AM on April 19, 2016 [9 favorites]
As a medical transcriptionist for an HEENT MD for a few years, I found cases of dysosmia especially chilling. This term describes a range of olfactory distortion, phantom aromas and absence of smelling ability. One patient perceived everything, absolutely everything as having an aroma of feces. The woman was half-mad, unable to eat, recoiling from others, needlessly obsessed with her own hygiene. The cause was likely minor surgery performed a year earlier. She was being treated with SSRIs as nothing seemed to help or change her condition. Another patient experienced the world as burnt, with everything smelling of fire and smoke. He spent time in a psychiatric facility when he could no longer sleep inside a building as his nose told him the structure was ablaze.
Our bodies are elaborate and delicate constructions, with systems that overlap and interact. Cuts or trauma can have consequences beyond imagination, especially where delicate sensory structures are concentrated.
This sort of thing is precisely why I avoid surgery for anything that can be treated alternatively. Most scribes that I've known, in fact, avoid going to doctors altogether.
posted by kinnakeet at 2:49 AM on April 19, 2016 [9 favorites]
After prolonged use of Flonase I too perceive much of the world as burnt. Luckily, I don't pay much attention to it, especially if my husband makes sure before he goes to bed that the stove burners are turned off.
posted by Peach at 3:57 AM on April 19, 2016 [1 favorite]
posted by Peach at 3:57 AM on April 19, 2016 [1 favorite]
I have a deviated septum (that every single doctor failed to mention 'til I was like 16), have had constant breathing problems throughout my life, really terrible allergies, asthma, a tendency for sinus infections, etc.
I haven't seriously considered this surgery because money but to be honest, on the one hand despite the article [insert clever name here]'s comment is making me consider it. I'm terribly congested right now reading this, and I often wonder about this but I like really really bland food? Wondering if that would change if I got my nose fixed. But on the other hand this sounds so terrible, and I feel so badly for the people who are suffering from it. I'm prone to mental issues as well, so even if a lot of it is "only" psychosomatic or whatever (as other commentators have mentioned, this doesn't make it any less real) that seems like a pretty big concern.
Maybe someday when I can afford it we'll have a better understanding of this syndrome.
posted by suddenly, and without warning, at 4:02 AM on April 19, 2016
I haven't seriously considered this surgery because money but to be honest, on the one hand despite the article [insert clever name here]'s comment is making me consider it. I'm terribly congested right now reading this, and I often wonder about this but I like really really bland food? Wondering if that would change if I got my nose fixed. But on the other hand this sounds so terrible, and I feel so badly for the people who are suffering from it. I'm prone to mental issues as well, so even if a lot of it is "only" psychosomatic or whatever (as other commentators have mentioned, this doesn't make it any less real) that seems like a pretty big concern.
Maybe someday when I can afford it we'll have a better understanding of this syndrome.
posted by suddenly, and without warning, at 4:02 AM on April 19, 2016
I forgot the reason for my first comment, whoops.
A drowning sensation isn't actually from not being able to get enough oxygen, it's caused by a build up of carbon dioxide in the blood. The drive to breathe isn't to get more oxygen but to release CO2. So, this feeling wouldn't be an inability to inhale, but an inability to exhale sufficiently, so the mention of all of these people about how clear their nose feels and how easy it is to breathe in is sort of off point, I think, and I think it's looking in the wrong place for a solution. Everyone seems to be hyper focused on breathing in.
I don't know why they might have issues exhaling completely, but maybe it is a psychosomatic thing that could be helped or cured by physical therapy after these treatments as mentioned above, or a physiological setting that needs to be tweaked. Like maybe the ability to breathe so deeply after not being able to for so long triggers an unconscious response to favor inhaling more than exhaling? Could this be something that could be investigated by looking more closely at people's basic breathing patterns and functions (both sufferers of ENS and not) as regulated by the medulla oblongata. Do we have a good understanding of the basics of how breathing is regulated by the brain? Would some kind of scan shed any light on any of it?
Anyway I have no idea if any of this would be a reasonable explanation but I hadn't seen it addressed so I'm just spitballing here.
posted by suddenly, and without warning, at 4:13 AM on April 19, 2016 [3 favorites]
A drowning sensation isn't actually from not being able to get enough oxygen, it's caused by a build up of carbon dioxide in the blood. The drive to breathe isn't to get more oxygen but to release CO2. So, this feeling wouldn't be an inability to inhale, but an inability to exhale sufficiently, so the mention of all of these people about how clear their nose feels and how easy it is to breathe in is sort of off point, I think, and I think it's looking in the wrong place for a solution. Everyone seems to be hyper focused on breathing in.
I don't know why they might have issues exhaling completely, but maybe it is a psychosomatic thing that could be helped or cured by physical therapy after these treatments as mentioned above, or a physiological setting that needs to be tweaked. Like maybe the ability to breathe so deeply after not being able to for so long triggers an unconscious response to favor inhaling more than exhaling? Could this be something that could be investigated by looking more closely at people's basic breathing patterns and functions (both sufferers of ENS and not) as regulated by the medulla oblongata. Do we have a good understanding of the basics of how breathing is regulated by the brain? Would some kind of scan shed any light on any of it?
Anyway I have no idea if any of this would be a reasonable explanation but I hadn't seen it addressed so I'm just spitballing here.
posted by suddenly, and without warning, at 4:13 AM on April 19, 2016 [3 favorites]
One side or other of the nose is usually blocked due to the "nasal cycle". The side alternates every few hours.
Unsure if relevant, but something to be aware of if you are now suddenly and intensely aware of your nose.
posted by pfh at 5:17 AM on April 19, 2016 [4 favorites]
Unsure if relevant, but something to be aware of if you are now suddenly and intensely aware of your nose.
posted by pfh at 5:17 AM on April 19, 2016 [4 favorites]
I have a deviated septum and allergies and was recently considering surgery. This is so terrifying maybe I will leave well enough alone. So awful.
posted by agregoli at 5:51 AM on April 19, 2016
posted by agregoli at 5:51 AM on April 19, 2016
There's a little animation of the structures in question, before and after removal. I don't know if that's the actual size, but if it is and if that's the actual procedure people are getting then the only reaction conceivable is HUH? Why? On earth? Would you do that to somebody? I'm sure it's like the picture of the spoonful of cereal on the cereal box: enlarged to show detail. But really: it's a part of the body that evolved over millennia to assist in respiration. It's intimately connected to the brain, just like the eyes and the ears. How could snatching it out NOT cause people horrific problems? Do the earnosenthroat guys tackle deafness this way? "Can't hear anything? Oh, here's your problem, it's this hammer thingy you got in your ear. It looks weird and it's probably blocking the sound. I'll take it out for you."
I don't get this about the medicos: how many times do they have to learn the exact same simple lesson that they probably don't actually know what they think they know? For threethousand years or so people get told, "O, yeah, Willy Loman, you fit the profile: yr ulcer is 'cause you're worried about your sales. Drink milk and pop antacids like candy and don't ever get mad and if you do, do some deep breathing and tell yourself to relax. It's all in your head cuz you got the stress. [fifty years pass] Oh, wait, shet my mouth, turns out ulcers is caused by the Helicobacter pylori, whaddaya know, ain't life a beautiful mystery! Sorry 'bout the last five decades of your life being ruined and stuff I guess whatever." "You got headaches? It's the demons: they all trapped up in your headrock, here. Sit still while I drill a lil egress hole for them. There! A-a-all better! ... What are you doing back? Oh, blah blah, you still got headaches and now there's a family of earwigs nesting in your skullhole, cry me a river, pal, I told you to cover that shizz with a leaf overnight: patient is a noncompliant histrionic hypochondriac and a hopeless loon."
PS: you guys, for real, pleaseplease lay off the flonase. You don't want to mess with the nose. It's not just for laffs, it's your pal, and it's vulnerable. I killed mine for 24 hours once blasting it with some expired Afrin. Worst. Experience. Ever.
posted by Don Pepino at 7:28 AM on April 19, 2016 [5 favorites]
I don't get this about the medicos: how many times do they have to learn the exact same simple lesson that they probably don't actually know what they think they know? For threethousand years or so people get told, "O, yeah, Willy Loman, you fit the profile: yr ulcer is 'cause you're worried about your sales. Drink milk and pop antacids like candy and don't ever get mad and if you do, do some deep breathing and tell yourself to relax. It's all in your head cuz you got the stress. [fifty years pass] Oh, wait, shet my mouth, turns out ulcers is caused by the Helicobacter pylori, whaddaya know, ain't life a beautiful mystery! Sorry 'bout the last five decades of your life being ruined and stuff I guess whatever." "You got headaches? It's the demons: they all trapped up in your headrock, here. Sit still while I drill a lil egress hole for them. There! A-a-all better! ... What are you doing back? Oh, blah blah, you still got headaches and now there's a family of earwigs nesting in your skullhole, cry me a river, pal, I told you to cover that shizz with a leaf overnight: patient is a noncompliant histrionic hypochondriac and a hopeless loon."
PS: you guys, for real, pleaseplease lay off the flonase. You don't want to mess with the nose. It's not just for laffs, it's your pal, and it's vulnerable. I killed mine for 24 hours once blasting it with some expired Afrin. Worst. Experience. Ever.
posted by Don Pepino at 7:28 AM on April 19, 2016 [5 favorites]
The turbinates become enlarged as the result of chronic sinus infections or allergies. My ENT said it was important not to remove the turbinates; he just trims them down to the normal size they would have been without the chronic illness. Maybe that's why my septoplasty/polyp removal/turbinate reduction did only good things for me, not bad. That was over fifteen years ago and I am still reaping the benefits. I never get sinus infections anymore, rarely even a cold, and my allergies are now well controlled with just Flonase. Which, by the way, has been a very nice drug for me.
Reading this is making me hyper-aware of how well the air moves in and out of my nose now. I'd forgotten how fortunate I am.
posted by artistic verisimilitude at 8:15 AM on April 19, 2016
Reading this is making me hyper-aware of how well the air moves in and out of my nose now. I'd forgotten how fortunate I am.
posted by artistic verisimilitude at 8:15 AM on April 19, 2016
Don Pepino, I try to be sparing with the Flonase and use it only one one side, one spray, and skipping when I am reasonably clear. But one of the things it has revealed is that how comparatively badly I've been sleeping, due to congestion. For example, I hadn't woken up dreaming hardly at all for months, and now I regularly do, which means I'm sleeping deeper and through full cycles.
And given the options of decongestants (only effective ones for me will leave me feeling crappy the next day if I use them two days in a row) or Afrin (we all know the rebound effect), Flonase has been a blessing.
But man, the feeling of suffocating... I just cringe in empathy when reading these accounts.
posted by tavella at 8:52 AM on April 19, 2016
And given the options of decongestants (only effective ones for me will leave me feeling crappy the next day if I use them two days in a row) or Afrin (we all know the rebound effect), Flonase has been a blessing.
But man, the feeling of suffocating... I just cringe in empathy when reading these accounts.
posted by tavella at 8:52 AM on April 19, 2016
What am I missing? Why don't these people breathe through their mouths? I have some structural issue with my nose (since birth) and have been a mouth breather for 30+ years. I physically can breathe through my nose but I have to concentrate on it, so I'd probably die if I were gagged and fell asleep. Is this the issue? Can nose-breathers not breathe through their mouth without constant concentration?
posted by AFABulous at 9:04 AM on April 19, 2016
posted by AFABulous at 9:04 AM on April 19, 2016
The problem isn't getting oxygen, they are getting plenty of it. It's that their brains don't believe it. If they had breathed only through their mouth their whole lives maybe they wouldn't have had ENS, but they did breathe through their nose at least part of the time and now their brains are setting off the "I am suffocating!" alarm even though blood oxygen levels are fine.
I do wonder if CPAP might help them, though -- there were mentions that air flow helped relieve the symptoms, and that's what CPAP does. Also makes it less likely for their mouth/throat to close so that they are breathing only through their nose. I would have thought someone had already tried that, though, and there's no mention of it working in the article.
posted by tavella at 9:13 AM on April 19, 2016
I do wonder if CPAP might help them, though -- there were mentions that air flow helped relieve the symptoms, and that's what CPAP does. Also makes it less likely for their mouth/throat to close so that they are breathing only through their nose. I would have thought someone had already tried that, though, and there's no mention of it working in the article.
posted by tavella at 9:13 AM on April 19, 2016
I am a human who had his nose remodeled in the manner that risks this mysterious side effect. Being able to breathe through my nose improved my moment-to-moment comfort considerably. I did have one minor side effect: The left side of my nose (the nostril most noticeably) is half numb, even ~2 years later. But it seldom bothers me.
Regardless, for those of you who are considering the surgery, keep in mind that the chance of experiencing this ENS complication is vanishingly small. The risk-versus-reward is pretty solid on this one.
posted by Hot Pastrami! at 9:29 AM on April 19, 2016
Regardless, for those of you who are considering the surgery, keep in mind that the chance of experiencing this ENS complication is vanishingly small. The risk-versus-reward is pretty solid on this one.
posted by Hot Pastrami! at 9:29 AM on April 19, 2016
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posted by mccarty.tim at 4:40 PM on April 18, 2016 [2 favorites]