01-21-2020, 04:16 PM
(This post was last modified: 01-21-2020, 04:21 PM by Woke.
Edit Reason: I overuse ellipses...
)
Please Let it Be the Apnea
I have been lurking for a bit here, this is an amazing site and it is wonderful how you all help each other.
I know it isn’t really productive, but I have enough weighing on me that an anonymous forum seems like the place to get some stuff off my chest where everyone can ignore it easier than me unintentionally exploding on some innocent bystander in the real world.
-Rambling backstory incoming-
I have birth defects which have meant many surgeries starting at age two. I have had unresolved constant pain and sleep problems since at least childhood, perhaps lifelong. Kids manage to thrive around these things though, don’t they? In high school my performance abruptly tanked without me understanding why—going in one year from apparently the top ranked student in a class of about 900 to just scraping by—I had until then been keeping up despite the surgeries and other challenges.
Attempting a surgery a year or so ago, I aspirated and had a lung collapse before they even began operating, resulting in a very Stephen King experience of waking up paralyzed without explanation as people shoved tubes in and out of my throat, unaware that I was awake. After a night in the ICU the take-away was that I have “silent” acid reflux. Heck of a way to find out—0/10, would not recommend. I sought out an ENT, had nasal surgery, and eventually was sent to one of those totally fun fancy labs for a couple sleep tests.
Conclusion: I have obstructive sleep apnea with an AHI of 118. Some BiPAP therapy, discussion, and examination later, the surgeon said he does not have the resources to handle the complexity of my case and sent me downstate to an expert, who I just saw a few days ago. Though he came in talking about the importance of conservative therapy, by the time I left the poor scheduling lady had to find a different form that let her type in all the components of this lengthily-named operation that needs to happen dealing with nasal/tonsil/palate anatomy…possibly jaw, too, dependent on success.
Despite its limitations, I do know CPAP is an improvement because it got yanked out from under me due to an insurance change, so I purchased my own and programed in the settings, coming across your board here at some point in this process (again, you guys are great).
Where I’m at:
I recently hit 30 and hit it hard. I am not a happy person, life is not fun, and all signs say it will only continue getting rougher. I am nominally earning my keep as half of a care team for a terminally ill relative on life support, but I am critically under-employed with no social life at all beyond the house, unless you count medical offices. I had conveniently in my mind that I would never hit 30, so I would not have to face that I did a poor enough job succeeding as a young man. But, as it turns out, you don’t just fade away from being miserable. Nothing wrong with me is a critical failure.* (* Yet, anyway.)
So now I have this fancy new diagnosis and an upcoming big nose/throat/whatever surgery, and I am wondering…is this just another defect of mine to add to my ridiculous collection, or could this be a missing link that ties together a number of connected problems? The original ENT asked me if I experienced a number of things before saying the mental symptoms (memory loss, difficulty focusing), pain, and reflux are all very linked to sleep deprivation, and it sounds like some of these conditions could be exacerbating one another cyclically. After fruitless decades, is there any realistic hope then that sleep apnea could actually pull any of this back?
If it is so significant, how was it overlooked for so long? Perhaps when I was still bothering to look for answers I was doomed as a skinny, athletic kid? I generally look/sound like a healthy person despite all this nonsense, and perhaps the squeaky wheel is the only one that will get the grease. Let this be a lesson: gripe more to your doctors! Or something. Try to be more obviously unhealthy if you’re going to have a problem?
There really isn’t any useful question in here, other than:
Has it been the ultimate difference for any of you between pointless existence and living life? Can treating this correctly change your entire outlook and prospects? I know nothing is an overnight life-change or a cure-all, but have any of you been in a boat like this and managed to climb all the way out of it, or at least far enough up that you could see the shore? Maybe I am just fishing for other people to say “yes, I was/am a total screw-up, too” so I feel like it isn’t I alone who has handled this all so pathetically.
Apologies for the whining, I wouldn’t want to read all of that either. Thank you yet again for being here as a board, empowering self-care and taking some of the mystery out of this monster.
I know it isn’t really productive, but I have enough weighing on me that an anonymous forum seems like the place to get some stuff off my chest where everyone can ignore it easier than me unintentionally exploding on some innocent bystander in the real world.
-Rambling backstory incoming-
I have birth defects which have meant many surgeries starting at age two. I have had unresolved constant pain and sleep problems since at least childhood, perhaps lifelong. Kids manage to thrive around these things though, don’t they? In high school my performance abruptly tanked without me understanding why—going in one year from apparently the top ranked student in a class of about 900 to just scraping by—I had until then been keeping up despite the surgeries and other challenges.
Attempting a surgery a year or so ago, I aspirated and had a lung collapse before they even began operating, resulting in a very Stephen King experience of waking up paralyzed without explanation as people shoved tubes in and out of my throat, unaware that I was awake. After a night in the ICU the take-away was that I have “silent” acid reflux. Heck of a way to find out—0/10, would not recommend. I sought out an ENT, had nasal surgery, and eventually was sent to one of those totally fun fancy labs for a couple sleep tests.
Conclusion: I have obstructive sleep apnea with an AHI of 118. Some BiPAP therapy, discussion, and examination later, the surgeon said he does not have the resources to handle the complexity of my case and sent me downstate to an expert, who I just saw a few days ago. Though he came in talking about the importance of conservative therapy, by the time I left the poor scheduling lady had to find a different form that let her type in all the components of this lengthily-named operation that needs to happen dealing with nasal/tonsil/palate anatomy…possibly jaw, too, dependent on success.
Despite its limitations, I do know CPAP is an improvement because it got yanked out from under me due to an insurance change, so I purchased my own and programed in the settings, coming across your board here at some point in this process (again, you guys are great).
Where I’m at:
I recently hit 30 and hit it hard. I am not a happy person, life is not fun, and all signs say it will only continue getting rougher. I am nominally earning my keep as half of a care team for a terminally ill relative on life support, but I am critically under-employed with no social life at all beyond the house, unless you count medical offices. I had conveniently in my mind that I would never hit 30, so I would not have to face that I did a poor enough job succeeding as a young man. But, as it turns out, you don’t just fade away from being miserable. Nothing wrong with me is a critical failure.* (* Yet, anyway.)
So now I have this fancy new diagnosis and an upcoming big nose/throat/whatever surgery, and I am wondering…is this just another defect of mine to add to my ridiculous collection, or could this be a missing link that ties together a number of connected problems? The original ENT asked me if I experienced a number of things before saying the mental symptoms (memory loss, difficulty focusing), pain, and reflux are all very linked to sleep deprivation, and it sounds like some of these conditions could be exacerbating one another cyclically. After fruitless decades, is there any realistic hope then that sleep apnea could actually pull any of this back?
If it is so significant, how was it overlooked for so long? Perhaps when I was still bothering to look for answers I was doomed as a skinny, athletic kid? I generally look/sound like a healthy person despite all this nonsense, and perhaps the squeaky wheel is the only one that will get the grease. Let this be a lesson: gripe more to your doctors! Or something. Try to be more obviously unhealthy if you’re going to have a problem?
There really isn’t any useful question in here, other than:
Has it been the ultimate difference for any of you between pointless existence and living life? Can treating this correctly change your entire outlook and prospects? I know nothing is an overnight life-change or a cure-all, but have any of you been in a boat like this and managed to climb all the way out of it, or at least far enough up that you could see the shore? Maybe I am just fishing for other people to say “yes, I was/am a total screw-up, too” so I feel like it isn’t I alone who has handled this all so pathetically.
Apologies for the whining, I wouldn’t want to read all of that either. Thank you yet again for being here as a board, empowering self-care and taking some of the mystery out of this monster.
