I GAVE UP

Glassgal, read my post on my 3rd sleep study I posted yesterday. I, too gained weight and now we think we know why. I was still not getting deep sleep after 6 months of therapy. You have to get the deep, restorative sleep for that to happen, I think, but I have had lower blood pressure, disapperance of having to go to the bathroom every few hours and no more night sweats or hot flashes. I'm starting a drug called Xyrem very soon that is primarily for narcolepsy and having an EEG next week to see if narcolepsy might be one of my problems. Even though I had a DSLT I never had an EEG to rule out narcolepsy.

Liam1965 wrote:Ultimately, my sleep is disturbed far more by the machine that by not having it. I find if I sleep on my couch, it sort of forces me to lie on my side, and I sleep pretty well (except for waking up about once a week with a bad back). If I sleep in bed, I spend most of my time on my back and awake either tired (from repeated apnea arousals) or tired and bruised (from being elbowed by my lovely wife every time I start snoring).

Hmm. I never thought having a bad back would be a blessing, but I can't sleep on my back because of it. I sleep on my side. As I described elsewhere, I have a very firm pillow and sleep with my full face mask hanging off the edge so it doesn't get pushed around.

You and I started about the same time. I'm finally getting the hang of this and doing much better. I just posted a message about this:

viewtopic.php?p=24073#24073

I have three pieces of advice. If nasal congestion is a problem, use a full face mask. I actually found it easier and more important to wear the mask later in the morning. Don't give up at 5AM. That just might be the easiest and most important time to wear it.

It's important to convince yourself how critical this is. A while back I woke at about 7:30 feeling halfway decent. I went back to sleep without the mask and 45 minutes later felt crappy. That really showed me how important it was to use the mask, especially later in the morning.

It's very easy to give up. and understandable, too. Sleeping with a mask, hose & blower? Every night! Throw in the leaky masks and often clueless and unresponsive doctors and DMEs it's no wonder giving up is so tempting!

BUT, do you really want to go through life as a Zombie? Barely living, shrouded in an energy sucking fog?
That is the alternative.

Unfortunately, you cannot sleep and breathe at the same time. There are now treatments available other than tracheotomies. They're still not pleasant or easy but it can give you your life back. Hopefully, someday people will look back at cpaps, oral appliances, etc. as archaic, medieval devices for an easily treated problem. But until then, they are all we have.
This forum will help you with info and support. Find a doctor who will listen.
Don't give up.

I understand the sentiment, but I have to say that the argument only works if the CPAP works for you (eventually). Your argument works for someone who merely *doesn't like* their CPAP machine, or finds it a pain.

Personally, I just don't sleep with it on. Period. I may doze off occasionally, but I'm *FAR* more of a zombie when I've been using the CPAP machine than I am when I haven't been.

That's not to say I don't have a problem, I do. But CPAP isn't the answer for me.

Consider it this way: Suppose you have strep throat. Penicillan is wonderful for it, and makes sure it goes away without turning into something nastier, and for most people, that's true. There are, however, people who are allergic to Penicillan. For them, the strep is actually the LESSER of two evils.

I think I am the same way with CPAP. I can have a minor problem which is an annoyance and perhaps mildly bad for my health and productivity, or I can treat it and suddenly have a HUGE problem.

Liam, who realizes that's probably the longest entirely serious post he's ever posted here.

Here's the 'tough love' approach.

Posted: Thu Jun 09, 2005 11:02 am --------------------------------------------------------------------------------

Sleepless on LI wrote:

...You know, I think more than anything, when I started CPAP therapy, I expected that when I slept finally, I would wake with this new found exhilaration and energy that I hadn't felt in years. And I even read about some people who claimed to have experienced just that. So when I actually had four and a half hours straight sleep with the mask, I was a bit disappointed to awaken with such exhaustion, more so than without the mask and machine. Less fatigue? Hmm, I'd have to really think about that. I don't know if I'd agree on that. I was exhausted this morning. All I can say is, I won't give up. I didn't expect to sleep this much the second night of therapy, so I won't expect to have results this fast, either. Hey, anything worth having is worth fighting for, and I've got my gloves on.

neversleeps responded:

....I agree with you. I am not ever giving up on this! Thanks to the incredibly knowledgable, helpful and encouraging members of this forum, I've come to realize there just isn't a good excuse for quitting. Yes, its uncomfortable; yes, its difficult to get used to; yes, at first you get even less sleep than b4 you started the therapy. We have to tough it out. I can't imagine what it would be like to end up having a stroke or a heart attack with permanent damage..... or even dying because I was too wimpy to stick with CPAP. (And that's what I keep telling myself when I want to throw the thing across the room!) Plus I have a 10 year old son, which in my mind means I'm obligated to do all I can to be around for him in the future. It isn't an option, it's a requirement. (Another thing I keep telling myself when I get sooooo frustrated!)

Your perseverance helps me to keep persevering! Thank you!

______________________________________________________________________

It's the same situation with losing weight.

Posted: Fri Jun 10, 2005 8:19 pm

neversleeps wrote:

...Here I am, given a proven remedy to many life-threatening health issues:

If you lose weight, you probably won't need CPAP anymore.
If you lose weight, you probably won't need high blood pressure medication.
If you lose weight, you probably won't need knee and hip replacement surgery.
If you lose weight, you may not have that heart attack next year.
If you lose weight, you may not need insulin anymore.
If you lose weight, you may not have that permanently debilitating stroke that will leave you partially paralyzed, unable to speak and confined to a wheelchair for the rest of your life.

And what do I do? Nothing. I am, in essence, choosing to have a stroke.... Suddenly I have absolutely no sympathy for myself whatsoever. I have the power to undo so much damage! I have the power to prevent so much future damage....

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By choosing not to use CPAP because of it's initially debilitating effects, one is knowingly choosing to remain unhealthy. By choosing not to lose weight because of a lack of will power, one is knowingly choosing to remain unhealthy.

I hate this about myself. I am endangering my life and jeopardizing my son's future. So now, I'm finally doing something about it. I'm using the CPAP no matter how hard it is, and I'm starting to exercise and put less food in my mouth. I want a future!!!

To Sleepless on LI,

The good news is you got 4-1/2 hours on the CPAP machine. The bad news is this may not be enough. I know I HAVE to get over six hours for it to do me any good. Even then, I am slowly getting better and I expect it to be many more weeks before I feel really normal.

See the message I posted here:

viewtopic.php?t=3173

LitteBaddow wrote a great post about his experience:

viewtopic.php?t=1177

My AHI score at my sleep study was 80. I stopped breathing over once per minute and got almost no deep sleep. If I sleep without the machine, I almost might as well not bother since I will not get decent sleep.


My doc tells me I have probably had sleep apnea all my life and I know I've had severe sleep apnea for almost ten years. It isn't going to get better overnight.

To make matters worse, when I first started sleeping the entire night with the mask I felt worse. That is now changing. I'm now feeling better than I did before the severe sleep apnea set in ten years ago, but still not really good.

But if you can sleep 4-1/2 hours, you can sleep more.

The way my RT explained it to me was that even though you may only be able to sleep a few hours with it at first those hours of sleep will be more oxygenated, more beneficial to your heart and overall health than the same number of hours without.

And if you are going to decide you can only wear it a few hours do it between midnight and 6 a.m. That is when sleep apnea patients check in to ERs for heart attacks and strokes. The rest of the world goes in during the day. So this indicates that the majority of apneas and other events occur during those hours and that should be your primary concern in using the machine.

SleepyGuy wrote:

The good news is you got 4-1/2 hours on the CPAP machine. The bad news is this may not be enough. I know I HAVE to get over six hours for it to do me any good.

I don't know what is going on, but I consistently now have certain wake-up hours during the night and do not even get that 4-1/2 hours I did get that one night. I go to bed at about 11:30-12, wake up at 1:30, then again at 4:00 and finally for the day at about 7-7:30. Why? I am having some trouble with this Oracle mask and may have to change it, but that's a topic for another post. Maybe that is the reason; I don't know. Like I said, I will keep fighting. Believe it or not, my BP has already dropped to a level where I don't need my meds, and that is in one week. I stopped taking them about three weeks before I started CPAP coincidentally (I know, no yelling please, got enough from everyone who knows me) but now have a pretty decent level that wouldn't require them anyway. So I know I am more oxygenated, as Janelle wrote in her reply post after yours.
I know I'm in for the long haul. I can't give up. My lips look like a bad Botox injection every morning and I think I may have TMJ in the left jaw, all from this Oracle - well, at least the Oracle gives my lips that appearance in the AM and the realization that keeping my jaws apart during the night due to the mask must aggravate someone's condition IF they have TMJ, which I never knew I had. But I will persevere until I get to that sleep-through-the-night, well-rested stage because it's not a question of should I, but I must. Thanks for your input.

Now i can't sleep without it!!!!!!!!I don't know about anybody else but now that i'm used to it if i try to sleep without it i feel like i'm not getting enough air!!!