Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Please Let it Be the Apnea
#1
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.
Post Reply Post Reply
#2
RE: Please Let it Be the Apnea
Welcome to the forum.

You have a lot going on and I'll guarantee that we cannot fix all of it.
What we can do is help you with the apnea, so step 1 is to post daily charts. See my signature of the link to the organization so you get the more important charts included and the calendar and pi chart dropped.
Post Reply Post Reply
#3
RE: Please Let it Be the Apnea
First off.....hello & welcome! 

Second.....you obviously have a lot on your plate to deal with. Sounds as if, for a very long time. 30 is still relatively young and you still have a long ways to go.....and plenty of time to improve. 

I deal with a moderate amount of depression. I'm 65, and I've been dealing with it since my early 30's. I'm not saying that I have it as bad as you, or are in any way, making comparisons. 

I more-or-less focused in on your last paragraph. I've been on SA Therapy since Sept. of 2018, and I'm still patiently waiting for it to kick in. I don't expect it to do anything for the depression though. 

Consider seeking some professional mental-health assistance. You didn't mention that in your post. If you have, or still am in therapy, stick with it. 

This present day & age, to be quite honest, really sucks. It's a very messed up society and world. And, it's only going to get worse with time. Believe me when I say this, you are not alone in how or the way you feel. 

It is good though, that you sought out this forum and have come forward and stated your case, so to speak. There are a lot of individuals on here with a lifetime of various knowledge and experience. It's only a matter of time until they come forward and offer their assistance. 

My very best to you! Please don't dismiss the mental-health suggestion I made. I've been there and done that. It did help.
Post Reply Post Reply
#4
RE: Please Let it Be the Apnea
Let me start by saying welcome... Welcome! (there are some ellipses for you too, I saw your editing reason) ;-)

I guess you know what's coming next... (boy I'm self-conscious about those ellipses now).

Why not upload the complete study showing the AHI of 118 and all the detailed tables?
As always.. redact any identifying info such as SS#, name, address etc.

Since it sounds like you have a PAP machine, a recent night's data would be good to have too.

Look at my sig for the usual hints on downloading OSCAR and tweaking the UI to optimize what we can see in your data.
Post Reply Post Reply
#5
RE: Please Let it Be the Apnea
Hi Woke,
Welcome to Apnea Board!
You have been through a lot, and as bonjour says, we will do everything possible to help you get dialed in with your machine and start you on optimal therapy.  

If at all possible, get second opinions on any surgery you may be considering.

According to your profile, it looks like you have OSCAR installed. Make sure there is an SD  card in your machine.  

Many of us have links in our signature lines that will guide you on how to organize and take a screenshot of the daily page in Oscar.  Then you can use the attachment feature to post a couple nights data here.  Once that's done, I'm sure you will receive much needed guidance.
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#6
RE: Please Let it Be the Apnea
"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."

my test ahi was 'only' 72 but I can tell you from my experience that apnea can cause those symptoms & more. I was 'unabled' for years prior to & even fairly long after beginning cpap. it sounds like you have a lot going on but an ahi of 118 alone is likely to leave you in rough shape.

"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 prospect?"

the short answer is absolutely, although it may take time to optimize therapy & recover from years of damage.
Post Reply Post Reply
#7
RE: Please Let it Be the Apnea
Hi Woke,

Welcome to the Apnea Board. As suggested, post redacted detailed sleep study report and OSCAR Daily data. We here at AB will help optimize the Apnea therapy. Best to your just around the corner success.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#8
RE: Please Let it Be the Apnea
Thank you all for the honesty, kindness, ellipses, and offers of assistance.  I do not want to be a further burden on the universe, but I suppose if anyone wants to look things over then I cannot complain about knowledgeable opinions.

I am waiting on getting hold of an SD card reader to try OSCAR, though I do have it installed.  Dang devices these days only having microSD readers…  I have been just looking at ResMed’s myAir information so far, I do not know how that got off in my profile.

Attached in abysmal document quality is the first sleep study, a split-night between no treatment and CPAP.  The second test was assessing if BiPAP was an improvement over CPAP, something they apparently concluded, but I do not have a copy of that.  Let me know if I have obscured too much.
Do these machines have any sensors to detect when we are nominally asleep?

The main challenge identified in my sleep study, and in general, is the small amount of time I am “asleep.”  As vindicating as it is to hear after not having any answer to how often I think I sleep at night, this means that the data they have applies to a very limited period of time appropriately tagged “sleep.”  If my machine is showing what my numbers are as if I am asleep, despite all the time spent definitively awake, this would make my events rate falsely appear to lower/improve compared to the study.  To that end, if it is not a function of the machine: is there a mechanism for intelligently omitting wake time?


Attached Files Thumbnail(s)
           
Post Reply Post Reply
#9
RE: Please Let it Be the Apnea
Your first 2 studies should have charts showing what stage sleep you are in but you don't have the complete study. The second report details a significant number of PLM, Periodic Limb Movements. You made no mention of this. Have you been treated for this condition?
Post Reply Post Reply
#10
RE: Please Let it Be the Apnea
Woke, with such long-standing and complex medical issues there isn't going to be one magic bullet to fix everything. However an AHI of 118 combined with insomnia is guaranteed to make even the fittest person feel like a wreck, so getting your sleep under control is an obvious place to start.

In addition to the excellent advice given above, can I say - do NOT be rushed into this surgery! Over the years we have heard many (too many) stories of people who have suffered invasive, non-reversible and extremely painful procedures and still needed a CPAP machine at the end of it. Give CPAP (APAP, BiPAP, ASV) a really good go and see if that will help get things under control first. Only if you've given it a genuine chance (which will likely take months not weeks) should you consider the surgery as a last resort.
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  Invisalign to help sleep apnea and dental extractions as a cause of sleep apnea SingleH 10 616 03-24-2024, 07:00 PM
Last Post: stevew168
  Central Apnea or Obstructive Apnea GoodSleepHunting 0 1,007 03-01-2023, 11:15 AM
Last Post: GoodSleepHunting
  Self-Treating Sleep Apnea | First Night with CPAP = 0,87 AHI | Central Apnea? Dumdi 22 3,400 08-02-2022, 05:26 AM
Last Post: Dumdi
  Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods lazysunday 9 1,585 12-17-2021, 03:35 PM
Last Post: Zackio
  Apnea statistics question, how tightly controlled is your apnea? happydreams 24 2,852 06-13-2021, 04:38 AM
Last Post: ICEMAN
  New to Sleep Apnea (central Apnea) cyipher 17 1,896 05-18-2021, 10:52 AM
Last Post: SarcasticDave94
  Can large tonsils cause sleep apnea? Would removing them prevent sleep apnea? WWu777 4 1,529 12-12-2020, 11:54 AM
Last Post: Big Guy


New Posts   Today's Posts


About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.