RE: New And Throwing in the Towel
Welcome to Apnea Board, Duckdog.
Oh, boy...where to begin.
Let me start with this: In one way, I'm kind of an ancient character around this place, but, as strange as it may sound, in one way I'm just as new here as you are. Sorry if that sounds like a riddle. I'll make you a promise, though...if you're curious as to how that's possible, stick around, and I'll explain once you've had some good, solid sleep.
Anyway, about your xPAP therapy. One thing you can take to the bank, is that everyone here, myself included, feels for you. We've all been there...and personally, I fought it every step of the way.
You might be interested to know that the inventor of CPAP, the good Doctor Colin Sullivan of God's Own Country (Australia) essentially used reversed vacuum cleaners on his first CPAP patients. By the time I was diagnosed in 1993, the machines were purpose-built and passably...uh...biomedical in appearance, but really, they weren't much more sophisticated than a rewired Hoover. You set them to one pressure (the medical term at the time, if I remember correctly, was something like, "IT IS BALLOOOOOON!"), and that's what you got. All pressure, all the time.
To make matters worse, mask technology 20 years ago was the pits. Most masks in use at that time were based on simple oxygen delivery systems and weren't designed to seal against any significant pressure, so (spoiler alert) they didn't.
I tried for two weeks to make that setup work. It was like blowing up an air mattress by mouth every time I tried to exhale. And the mask leaked like a sieve, air whistling across my face (and over my eyes, my gosh, how pleasant that was), the mask seal flapping, the CPAP blower roaring like a 727 on takeoff...and I'm talking about an old original 727-100 flying out of Cameroon, not some fancy FedEx -200 with a Stage III hushkit that can actually operate over the United States.
What would happen was I would lie there bolt awake for an hour or so, until finally I was exhausted - breathing is hard work - so I'd tear the mask off, roll over, and fall asleep. So that didn't work out for me, and I was determined never to try that infernal contraption again.
I tried everything else. Dental appliances, pillows, Breathe-Right strips, and surgery. And more surgery. Uvulopalatopharyngoplasty, Genioglossus Advancement, Hyoid Myotomy, Septoplasty, Turbinate Reduction, you name it, I tried it. Well, I didn't have every surgery. I stopped at Maxillomandibular Advancement, because they told me all my teeth might fall out. You don't want the details.
I thought long and hard about a tracheotomy, and did a lot of research. I finally went to a local sleep center about it, and a nurse there told me I was too young to have a trache. I said, "Well, I'm a zombie now, what have I got to lose?"
She wanted me to try CPAP, specifically, a new Autopap or APAP machine, a sleek microprocessor-controlled gadget that only gave as much pressure as necessary to keep your airway open at any given time, plus an advanced new mask that didn't look anything like the ones I had tried just a few years before.
I wasn't happy about it but I agreed to try it on. She fitted the mask for me and turned on the machine. I said, "Hey, this is really comf...ZZZZZZZ". I was out like a light.
When I woke up, I said, "Oh, sorry, I guess I closed my eyes there for a second." She said, "You slept for 20 minutes. I didn't have the heart to wake you up, you seemed like you really needed it."
After that, I agreed to a new home APAP trial. Now, it wasn't a walk in the park. I had to try three different machines and a number of different masks, but when I hit the sweet spot, I started sleeping again, like I hadn't slept in 15 years.
I hadn't been able to work for years. I had fallen asleep pretty much everywhere you can imagine, including the shower. I had developed strategies for dealing with it, but the bottom line is that I just couldn't function. Within months of starting to get good sleep again, I interviewed for and got a new job. I was able to drive again, to socialize, to talk on the phone.
Within about six months, I was so comfortable with my APAP, I couldn't imagine sleeping without it. I used it every night. I even brought it on vacation with me.
Mask and machine technology continued to improve. After a year or so, I switched to a new mask, and my AHI (basically the number of times per hour that I didn't breathe, or took too shallow a breath) went down from 10 or 12 to 2.5. I lost weight and started feeling pretty good. So good, in fact, that I took a second, part-time job.
Fast forward a couple of years. One day, Supersleeper, or Supe as I like to call him (this is his little store here, by the way) was looking around and wondering what happened to me, because he hadn't seen me around. Well, since he knew my apnea to be pretty severe, he was concerned that my health had deteriorated.
If he's reading this, he's in for a surprise. I was at the gym. That's right, Supe, for the first time in my life I was going to a gym regularly and working on my cardiovascular health. That is just one thing that xPAP therapy has made possible for me.
In the interest of full disclosure, I have to say that after one full year, for reasons that are beyond the scope of this post, I fell off the gym wagon. My weight has been up and down some, but I'm working on getting and keeping it down. I do think I'll be back to the gym eventually. The point is that my xPAP situation was pretty much hopeless, and thanks largely to the perserverance of a very dedicated RN, I kept at it until I found a solution that worked for me, and it changed my life.
When I was sleep deprived, I kept my job for years because of the constant intervention of a good boss who wasn't afraid to defend me at every turn, telling the HR department, "Have you people ever heard of the ADA?!?" whenever someone complained. But when he got laid off, I followed soon after, and no one would hire me after that.
Now, my employer loves me. I'd forgotten what that was like! I've had opportunities for advancement, but the truth is, I'm pretty comfortable where I am, so that's where I stay.
Life's not perfect. I still suffer from some daytime somnolence, which means that I fall asleep during the day more easily than I should, particularly with boring, repetitive tasks. The memory loss from all those years of sleep deprivation hasn't really come back. The side effects of all those useless surgeries haunt me pretty much daily.
But in light of the vast improvements in the quality of my life, I've no business complaining. The best part is, the technology keeps getting better and better! The machines have gotten so quiet and comfortable...I can't believe I'm saying this...sometimes I have to double check to make sure the thing is switched on.
Do yourself, and the people you care about a big favor. Stick with it. Tell your DME provider you want to try some other masks, or ask if they can special order a machine if you need to try something different. Do what you have to do to make it work for you.
If the quality of your life doesn't improve, you can always come back here and call me a jack ass.
Sorry about the long post. Good luck! Carl