Why do people give up?

Maybe it's just because I have severe apnea (prescribed pressure of 20) but I can't for the life of me understand why anyone would stop using a machine. Even with a face-mask which wakes me up five times a night, I STILL have vastly better sleep and feel a hundred times better in the morning than I do without it. With the Swift FX I usually wake once a night with a dry mouth but have been getting 2-4 AHI's and feel incredibly different from when I didn't have a machine. I just can't imagine life without one now and dread when the rental period is up as I can't afford to rent continuously and it'll be several months before I can afford one for myself.

Why would anyone want to go back to feeling like crap all the time?

Not everyone with untreated sleep apnea feels like they get poor sleep, nor do they feel tired during the day.

I was recently diagnosed with severe obstructive sleep apnea. While others told me I've snored like a freight train for years, I never felt unrested in the morning, as long as I got at least 7.5 hours of sleep. It was only after my wife told me I was stopping breathing and gasping for breath that I started to get serious about having a sleep study and getting treatment. The first indication that I had a real problem came about when I bought a pulse oximeter and saw that I had serious desaturations multiple times a time, proving that I was not getting oxygen to my blood.

So now I've had my sleep study. Had the diagnosis confirmed, and been on CPAP for 25 days. The numbers (low AHI, and high blood oxygen saturation) tell the story - the therapy is working - but I can't honestly say I feel any different in the morning.

So - if I started on CPAP, and was having a poor experience, and if I hadn't proven to myself that I had a real problem, I could easily see myself giving up.

John

As JohnO said, not everyone feels sleepy or bad before being diagnosed with sleep apnea. My symptoms were very subtle and not anything one would normally associate with sleep. And the other side of the coin is that cpap can make some people feel horrible, at least at first. For the first 2 months, I felt MUCH worse than in my untreated state -- mental haze, cognitive problems, headaches, and irritability. So under these conditions it is a real act of faith to continue to hose up every night. And the expectation that things should instantly improve on cpap doesn't help in the least.

Count yourself lucky and have some sympathy for those who don't take to the therapy as easily as you have (even with your awakenings) or don't see immediate positive results.

Far too many reasons to list but they could range from no support from doctors/DME's to embarassment to the mask causing more issues than it resolves. Also, CPAP is not the solution for every case of apnea. It is one option, and a good one for many, but should not be considered the final word.

One night of bad sleep can make for bad decisions and poor problem-solving abilities; a few decades of bad sleep can make for exponentially worse decisions and abilities. It can even be difficult for the emotionally drained and the discouraged to care whether their decisions are right or not. Many may know the right decision to make but unfortunately do not find this forum or otherwise get the help they need to solve problems and make the therapy work for them. That's one of many reasons we all have to spread the word and help fellow pappers solve problems with the therapy.

http://postcog.ucd.ie/files/Hrrison%20and%20horne.pdf

On the other hand, I felt so horrible before therapy, that some (moderate) improvement was immediate.
I was actually able to SLEEP, after months of never having had a refreshing night.
The headaches and nightmares that I experienced before CPAP were, in fact a gift, making me one of the proverbial "ducks".
I had received, in a way, the proverbial "thorn in my side", making me aware of the power of CPAP.
I am grateful for past pain, because it gave me motivation to tolerate poorly fit masks for the first several months.

Come to think of it, maybe it was Carbonman who said it best:

viewtopic.php?f=1&t=38249&st=0&sk=t&sd=a

i could feel the same about stopping smoking. if i did why don't everybody? for cpap, i got my first generation respironics basic 3, not 5 button in 2001. i couldn't tolerate that constant 12 in, 12 out no matter how i tried so i gave up. then in 2010 i got my second generation m series with cflex. again with 12-12 and cflex on output but i still had trouble and quit. at this same time in 2010 i got adult onset asthma and in 2011 copd (emphysema and asthmatic bronchitis). i wound up in the ER in early 2012 and was told i must use the cpap. i couldn't. it was then that i got a prescription for my apap but had to pay out of pocket because of the 5 year thing. i've used it every night since then at 8-12 and seldom hit 11 or 12. i say this as i'm sitting in a hospital room with pnuemonia that came out of nowhere. were these lung problems undiagnosed developing all along and making it all difficult to handle the pressure? that's my bet. unless you have every problem and undisclosed or undiagnosed medical condition that people have, it's hard to judge them on why they don't try harder and make it work.

ddk wrote:... and dread when the rental period is up as I can't afford to rent continuously and it'll be several months before I can afford one for myself.

ddk, Your question is understandable given your experience, just as it's understandable that someone struggling with feeling worse on cpap would wonder why anyone wouldn't give up .

What seems more important about your post, though, is your rental/financial dilemma. This video by a very thoughtful sleep tech may give you some ideas on how to keep yourself on cpap (free or reduced cost) once your current rental runs out: http://www.youtube.com/watch?v=_PvNyIT00YI . Our fearless leader Pugsy also has info on where to get good secondhand machines for a reduced cost.

This is not a politically correct answer, but I see some people who are just not willing to put up with the difficult adjustment period because they never push themselves to do anything hard, ever. (The word "wimp" comes to mind, but I'm sure I'll draw flames).

Now I know I don't walk in other people's shoes and I really have no idea of their struggles, but we all know people who will give up way too easily.

This did not come easily to me, I came to CPAP kicking and screaming and had a rough adjustment. But one thing I do know how to do is to be persistent and work hard. I whined a lot, but I did not give up. And neither did most of the people here, because we wouldn't be here in the first place if it came easily.

Yes, lack of support is all too common and a very bad thing, but sometimes parsing it out on your own makes you own your therapy and manage it better.

I'm a wimp, and I'm not offended, Janknitz.

Or at least, I'm an aspiring wimp. I don't think I have what it takes to put the effort into being a complete wimp.

Whining takes too much effort, and kicking and screaming takes too much energy.

For many people, the BS, the ripoffs, the bad attitudes, and the incompetence of the medical system probably account for some of it.

A lot of people are probably told to just "suck it up" instead of getting effective help for their problems with CPAP.

I sometimes wonder if the claustrophobic feeling generated by the mask, pillows or whatever, along with having to breathe against the air pressure creates a "waterboarding effect" in many of us. It took me weeks to get over it, but I still have occassional times when I can't fall asleep and this feeling of panic makes me give up for the night. It's especially bad when lying on my back and the room is dark. We are primitive hard-wired to fight this smothering feeling.

But as already said, being dogged persistant and not giving up is the key. Unfortunately, most users do not have the support of a group like this and don't realize that these feelings are normal and we all must fight through it. Many start out thinking it should be easy and later realize they are not up to the challenge. Just like scuba breathing underwater, It IS a difficult thing to get over for many people. Sad, really, considering the great benefits of success.

Tom

The deep brain knows it has a breathing problem during sleep. At first, the mask can get lumped in with the breathing problem. The brain thinks: "Aha! I feel something on the face that I never noticed before--maybe that's what has been smothering me all these years and I'm just now noticing it!" It takes a while for the brain to figure out that the mask isn't part of the problem but is the solution. When the mask is worn all night every night and the brain notices the problem going away, the brain finally sees the mask as its friend instead of its enemy. And they live happily ever after. The end. Or the beginning. Depending kinda on how you look at it. The deep brain can seem stupid, but its got its own logic. It just needs its butt kicked now and then when we know better than it does.

jnk wrote:The deep brain knows it has a breathing problem during sleep. At first, the mask can get lumped in with the breathing problem. The brain thinks: "Aha! I feel something on the face that I never noticed before--maybe that's what has been smothering me all these years and I'm just now noticing it!" It takes a while for the brain to figure out that the mask isn't part of the problem but is the solution. When the mask is worn all night every night and the brain notices the problem going away, the brain finally sees the mask as its friend instead of its enemy. And they live happily ever after. The end.

heheheh - Pretty cool description, Jnk. I must agree. I hope my brain is starting to realize this...


Maybe it's time I broke down and tried a nasual pillow and got rid of this FF mask. Probably scaring the heck outa the brain.

T