Am I alone on this one?

[byront]

My experiences have been the same as bdp522 (Brenda). I was doing the same thing as you Melissa and most of the time would wake up with a headache or feeling like I had lost sleep. I try not to do it anymore. Like others have mentioned, it turns out that it's just not worth it. My problem now is that my lips are terribly chapped and sore from taping - so today my project is to try and come up with some kind of chinstrap device that will help. Getting it all just right certainly does seem to take some effort. --- BT

[snoregirl]

I like the 3 m paper tape (made by nextcare). Hard to find near me. Most stores have Johnson and Johnson which I find harsher on my lips.

I try to put some chapstick on earlier in the evening and not when I tape (as the tape won't stick) then when I take if off in the morning I immediately chapstick the whole area, lips and around lips.

With this routine I seem to be fine.

[snoregirl]

To go back to the orignial threat topic. I too like to stretch out in bed minus the mask in the morning.

Problem is if I do fall asleep I snore myself awake quickly. So I haven't gotten into the headache thing yet!

[DreamStalker]

My experiences have been the same as bdp522 (Brenda). I was doing the same thing as you Melissa and most of the time would wake up with a headache or feeling like I had lost sleep. I try not to do it anymore. Like others have mentioned, it turns out that it's just not worth it. My problem now is that my lips are terribly chapped and sore from taping - so today my project is to try and come up with some kind of chinstrap device that will help. Getting it all just right certainly does seem to take some effort. --- BT

BT -

How the heck do you tape with your whiskers? Have you shaved them off?

- r

[Patrick A]

[quote="NyNurse33"]As much as I look forward to my, old, faithul mask and the calm, soothing cpap every night, there is a part of me on the weekends that likes to take it off (easy,now).

What I mean is, that on the weekend when I can sleep in later, I wake up a little earlier than I'm ready to (force of habit, I'm sure), which is no big deal. But I actually like to shut the machine off, take off the mask, roll onto my stomach (ah, the good ol' days) and just sleep for another 45 minutes or so, naked Just once in a while on the weekends I do this.



Can we get 8x10 glossy pictures of that.

[rested gal]

Though my OSA is mild, I'm not real crazy about the idea of undergoing suffocation during a short nap, much less for an hour or two in the morning before getting up.

That four hour minimum notion is, as the others mentioned, for minimum number of hours to be covered by insurance. Even if a person lives in a country where there's no such thing as having to meet minimum compliance, the manuals are already printed up by the cpap manufacturers to speak about that minimum because it is so common in the U.S.

imho, any medical professional who tells a person, "As long as you use it at least 4 hours a night, that's good" is doing their patient a great disservice. Unless the health care provider is using that figure as an incentive to try to keep a person going who is about to drop out, I can't imagine any professional who really understands the seriousness of Obstructive Sleep Apnea thinking that way, or hinting that it's ok to sleep at ANY time without mask and machine.

Some use is better than no use, true. But no suffocation is better than some.

[CollegeGirl]

Going without your mask is never a good idea. I know, we all wish we could go back to the pre-cpap days...

Wait a second. I don't. I look forward to putting my mask on every night and getting what I know will be good, safe sleep. No way in heck would I *ever* sleep without it. I wouldn't want to.

I tried that once, early on in my treatment, and got the worst headache of my life, after only an hour-long nap. I will never, ever do that again. It seems obvious to me that if the majority of people are only experiencing headaches after sleeping without CPAP... the problem is not the mask and CO2 re-breathing. It's sleeping without CPAP.

To the guest that's only sleeping 4 hours: You need to sleep *all* night with it. I can't believe your DME told you that. What little good you are doing yourself in those 4 hours you sleep with it, is being undone by the the 4 hours you sleep without it. Do you think your apneas magically stop happening after hour 4? Damage to your heart and other vital organs is caused by oxygen deprivation, which is what you experience when you get an apnea. By sleeping without it, even for four hours a night, you are still damaging your heart and depriving your body of real sleep for four hours a night. NOT a good idea.

I know this is harsh, but it has to be said to all of you who are sleeping without it: Grow up, suck it up, and start wearing it all the time. It's what you have to do to live. If someone as young as I am can face the fact that it's for life and have the self-discipline to never sleep without it, so can you. At least you have an easily treatable disease. You owe it to your loved ones to USE it so that you can be with them as long as possible, and not in the form of a stroke patient whose diapers they have to chnage.

Melissa - I can still understand the need for stomach sleep. I can't sleep any other way but on my stomach. Next time you get a mask, try the Aura/Headrest. It allows me to sleep on my stomach without leaks or cutting off the airflow.

Sorry if this post was way harsher than my posts usually are - but it had to be said. I've been through hell and back in trying to find a "tolerable" mask and a treatment that actually made me feel better - took me longer than a year and a half to find that combination - but I NEVER went without my CPAP, no matter how uncomfortable I was. You can all do that, too. I know you can.

[Patrick A]

Some use is better than no use, true. But no suffocation is better than some.

Hi Hi to that one. (amatuer radio term)

[NyNurse33]

You are all absolutely right!! I didn't mean to hit a nerve by sounding stupid. I really didn't know the significance of even sleeping a few minutes without it. Even though I work in healthcare, I have no experience with OSA and cpap therapy until I became the patient. But as a nurse, it does make perfect sense why it is so life-threatening and crucial to wear it @ all times of sleeping. It would be no different with any other type of disease and "skipping" the treatment for it just once. Before cpap therapy, I remember the nights feeling like I was choking or waking up in a coughing fit and that should be enough for me to be consistent with treatment. Thanks guys for drilling some sense into me. You will never hear me mention that again.

[SelfSeeker]

Melissa you are not sounding stupid. You have a very legitimate question.

The only reason, I can say what I did, is because I went to a sleep apnea conference. The slides shown and the statistics were an eye openner.

I originally was told that OSA is only treated if it interfers with your life with fatigue. (Think how many years that takes.)

Later it was explained to me as each apnea episode is a mini stroke.

It is intresting, that you mentioned coughing. I just found out about chocking as a symthom of OSA. It has been more the 15 years, that I wake up from coughing/chocking at night , so I started putting Halls in my mouth during the night. (Not a good idea, I know.)

You are all absolutely right!! I didn't mean to hit a nerve by sounding stupid. I really didn't know the significance of even sleeping a few minutes without it. Even though I work in healthcare, I have no experience with OSA and cpap therapy until I became the patient. But as a nurse, it does make perfect sense why it is so life-threatening and crucial to wear it @ all times of sleeping. It would be no different with any other type of disease and "skipping" the treatment for it just once. Before cpap therapy, I remember the nights feeling like I was choking or waking up in a coughing fit and that should be enough for me to be consistent with treatment. Thanks guys for drilling some sense into me. You will never hear me mention that again.

[Patrick A]

SelfSeeker posted:I originally was told that OSA is only treated if it interferes with your life with fatigue. (Think how many years that takes.)
Is that why 20 years ago when I was diagnosed with OSA by a large So.Calif. HMO hospital they did nothing about it or was it that they were to cheap to give quality health care to their members. Thank you K@#$% hospital I could have died,and for what I paid from my paycheck each week I could vomit to think of the disregard by this Large HMO
Of course my union got this plan for it's members give us a break.

[gardenrodent]

OK I don't just wear it for four hours, I wear it as long as I can, but as long as I have had 4 hours with it I am happy. I am only repeating what was said to me, others may well be different. I will ask the questions directly the next time I see my people.

I DO NOT suffer a headache when I wake up from sleeping without the mask, and I also do not feel that my life is in danger through not wearing it. The whole point is I don't sleep because of OSA, my body wakes me up and stops me dying! Frankly I at more risk crossing the road than sleeping for an hour or two without my mask. Like all things perspective is required.

If I get answers to any of teh questions posed above I will post back.

Bob

[SelfSeeker]

PatrickA, even thought Sleep clinics, Drs etc have been doing research for 20+ years, I still think the treatment etc for the main public has been in its infancy and just beginning to walk so to speak. We need it off and running really fast.

I was a "light" sleeper and was always exhausted.

I think sleep studies should be more readily available for anyone who is sufferning from "insomina", has unexplained symptoms.

[bdp522]

Bob, My MD and RT both said that I had an irregular heart rythum whithout cpap. Every episode of apnea made the irregular rythum get worse. My heart was starting to enlarge. All due to apnea. Since starting cpap the heart beat is regular and the heart is almost back to normal size. I was diagnosed with MILD apnea. For me this is a VERY BIG DEAL!

Brenda

[rested gal]

OK I don't just wear it for four hours, I wear it as long as I can

That's good. Seriously.

but as long as I have had 4 hours with it I am happy.

This can be a really tough kind of treatment to do until we get used to this crazy new way of trying to sleep with so much stuff on our faces. It is especially difficult to get used to until we find a mask (or tweak a mask) to really suit us as well as possible. Sometimes it does take getting used to it in steps.

I am only repeating what was said to me, others may well be different. I will ask the questions directly the next time I see my people.

Even direct questions may not get correct answers -- even from health care professionals. But then, message board answers are not necessarily correct all the time, either.

I DO NOT suffer a headache when I wake up from sleeping without the mask

I've rarely had headaches in my entire life. I've cannot even remember ever waking up with a headache, as is so commonly reported. Possibly I escaped headaches because my OSA is mild. Nonetheless, given the choice between continuing to have little pinpricks of hypoxia killing a few more brain cells each time I sleep, even if it's not severe enough to cause me any headaches at all, or turning a leaf blower on when I sleep, I'll flip the switch on -- and keep it on until I'm ready to get up.

and I also do not feel that my life is in danger through not wearing it.

I don't think my life would be in immediate danger. However, like I said...those pinpricks add up over time. The possibility of stroke/nursinghome some day -- could happen in the middle of the day while I'm walking around -- not necessarily while sleeping without cpap going -- made me say to myself -- I'm not gonna spend one sleeping minute without the mask and machine. I'll do it to lessen the creeping damage over time that could lead to stroke.

The whole point is I don't sleep because of OSA, my body wakes me up and stops me dying!

Well, I slept through all my OSA episodes, all my life. My brain was, of course, waking me just enough to breathe, but if you'd asked me back then, "Do you sleep well?" I'd have answered "Yes, I go to sleep easily and don't wake up until morning." I thought getting drowsy driving happens to everyone. I thought bigtime snoring was unfortunately unlady-like; but heck, lots of people snore...no big deal. I thought wanting to hit the snooze alarm many times in the morning was because I simply wasn't a "morning person." No morning headaches...just always felt like, "I'm not ready to get up and get going."

Frankly I at more risk crossing the road than sleeping for an hour or two without my mask. Like all things perspective is required.

I agree, absolutely, about the risk factors of those two things. I guess to me, not using the cpap machine would be kinda' like crossing the road without looking both ways first.

Immediate danger of dying in my sleep if I don't use the mask and machine...nah, I don't worry about that. I just keep thinking about those easily avoidable pinpricks of hypoxia, over and over again...adding up over time. I like stopping that adding machine cold while I can. The day of a stroke, I might not have much decision-making capacity left. I don't like that idea at all.

If I get answers to any of teh questions posed above I will post back.

Bob

It will be interesting to hear what they say. Of course, if they say "4 hours is enough", I'll still not agree with them. Doesn't matter to me if they wear white coats. They are human and can be wrong just as easily as I can. But yes, I would like to see their answers.

Bob, I hope you don't take anything I'm saying as my being critical of you or how any person chooses to go about their own treatment. We each have to make our own decisions and consider what we think is the best advice....for us. Whatever you, I, or anyone do regarding cpap treatment, I hope we all get effective treatment that makes us feel well rested. Each person is different, and it's always good to hear different viewpoints about treatment. "Sleep" is a fascinating subject. I want to keep learning...

Laura