Just Curious......

[DreamLady]

I see several have posted in the last few weeks about waking up after 6 or so hours, removing the mask, and going back to sleep without cpap. Why do you do that? I tried doing it once in the very early going, and ended up with the worst headache I could imagine within 1 hour. After that I decided no more sleeping or naps without my mask, as it was obviously not for me.

Being a curious animal, and relatively new to cpap, I wonder why anyone would even want to sleep without it. I'm really not trying to 'preach', I just want to understand. Are some just 'lucky' that it doesn't cause symptoms to sleep for a while without it?

Strangely enough, I clicked submit for this post, and saw the article above about the State Representative who died because he couldn't adjust to using a mask and machine (according to his doctor). That is very sad for his family.

[DocWeezy]

I have no idea! I'm still a real newbie with a cpap, and I would love it if I didn't wake up and take off my mask after about 4 or 5 hours. It's unconscious--I don't remember doing it, although I manage to unclip the mask and turn off the machine. Go figure.....

I'll be interested to see replies from more experienced users.

[tattooyu]

I was lucky in that it never happened to me, but I can only figure this:

• Your mind is relearning how to sleep without interruptions
• You have a foreign device stuck to your face AND blowing air up your honker, causing newer interruptions

The more you do it, and not fight it, the more your body and mind will accept it.

[Uncle_Bob]

If you can't get used to a mask,why not try a different mask?

I went through 11 masks

Whatever it takes

[trike-mike]

I concur with the different mask thought (and have several) but I am also going through, it seems, pressure issues (not enough) that may well be causing me to yank the mask in the night as I am getting used to this.

[jweeks]

Being a curious animal, and relatively new to cpap, I wonder why anyone would even want to sleep without it. I'm really not trying to 'preach', I just want to understand. Are some just 'lucky' that it doesn't cause symptoms to sleep for a while without it?

Hi,

The funny thing about the human brain is that it seems to have a mind of itself. Many people who wake up without their mask on don't remember taking it off. Something aroused them, possibly a sleep disturbance, possibly normal changes in sleep levels, and they got close enough to awake to remove the mask, but not awake enough to decide to keep it on. The other major group of mask removers are people who do wake up enough to make that decision, and they simply are not comfortable. This might be due to having a series of events that the machine did not treat, having high leaks, or the machine going to a high pressure level. The first group generally outgrows the issue. The latter group often has to troubleshoot the problem, which can be hard when you are foggy due to having sleep issues.

-john-

[jonquiljo]

I think it's the machines that people can't tolerate more than the masks. I bet the compliance rate is lowest when people get old machines with no "flex" or EPR, when they are titrated too high (the sleep Dr. adds a couple of cm for "good luck), and when they are not allowed access to their data or told what it means.

I can tell first hand that when I started 15 years ago I had an old machine that was set too high and I gave up, no Flex, no APAP, no data and no information (and no Internet - so no boards like this). I lasted on and off about 3 months and put all the junk in the closet. When I restarted PAP therapy 3 months ago - I had an APAP with A-flex - and I brought my pressure up slowly and let myself adjust. There was no extra pressure to blow out my butt and make me miserable.

Most of all - it was looking at the O2 saturation from the initial data - to the reports from my home oximeter - that make me put that thing on my face every night. When you realize you are suffocating it can be very motivating. Maybe someday soon all CPAPs will come with data and integrated oximeters. A few less bad Dr.'s and terrible DME's and a lot of people may actually live for a change.

[trike-mike]

I echo what jonquiljo says and add what I got for a bit of advice on this very board as I am starting out that has served me well. It is a system that needs to be tuned to you specifically and it is the combo of the mask, pressure, how it's delivered, and subjective comfort items suitable for you. Where jonquiljo was originally titrated too high, my "titration" (I put in quotes as it can only be called that process in the broadest of terms) was far too low. While I thought I was having trouble adjusting to the mask (there was some of that but an assortment helped me, at least, get past that pretty fast) it turned out the low pressure was not handling a large majority of events and I was still failing.

If nothing else, the very low pressure helped me get used to the treatment relatively quickly and have gotten to where I am comfortable with higher.

I don't have an pulse oximeter (yet) but just knowing how I was waking with screaming headaches all the time (now gone), recalling waking in choking terror in the night, and now looking at the bluntly stated data has been my "holy crap" moment. Even with currently somewhat poor medical involvement, I'm not giving up and I won't go without it.

[lfreese]

I took my mask off in my sleep numerous times in the past year and have no clue why or how i did it. Anyway, now after a year of fighting mask leaks and claustrophobia I am getting much better in keeping the mask on all night. Don't let this problem discourage you. Hang in there and you will succeed.
Good luck.

[Shellie_p]

I see several have posted in the last few weeks about waking up after 6 or so hours, removing the mask, and going back to sleep without cpap. Why do you do that? I tried doing it once in the very early going, and ended up with the worst headache I could imagine within 1 hour. After that I decided no more sleeping or naps without my mask, as it was obviously not for me.

Being a curious animal, and relatively new to cpap, I wonder why anyone would even want to sleep without it. I'm really not trying to 'preach', I just want to understand. Are some just 'lucky' that it doesn't cause symptoms to sleep for a while without it?

Strangely enough, I clicked submit for this post, and saw the article above about the State Representative who died because he couldn't adjust to using a mask and machine (according to his doctor). That is very sad for his family.

Oh thats easy they DON'T REALIZE they have taken it off till they wake up without it. Either from discomfort or arousal or whatever reason, the subconcious mind made a decision to take it off.
As for symptoms. Many peoples symptoms aren't severe enough for immediate symptoms to show up after only a few hours of not wearing, Or they haven't had enough effective treatment yet to realize what a good nights sleep feels like. For some it takes months of hard work and effort to get their treatment just right for them. And if your still in the process of finding out what works for you well.
Now if you like me with seriously SEVERE apnea taking off the mask for 10 minutes is a frightening feeling, waking up with your heart pounding, gasping for air, and jumping up to sit on the edge of the bed (I breathe better sitting) So rarely do I ever take mine off. But there are the rare occasions. Usually when seriously sick and running fevers though.

And as for someone who *Can't* get used to it. I hope everyone don't get to mad at me but My personal thoughts is thats allot of BULL.. Btw I'm not saying that people don't have a rough time. Many do. But the question is why???

But many people just don't take sleep apnea seriously, even after being diagnosed, well maybe thats not the best way to put it. Subconciously they aren't TOTALLY dedicated to it. I guess would be more correct. Why? who knows denial, mis-education, hope that it will somehow go away? Often they don't even know.

It's like becoming a diabetic, how many people do you know/have seen who only semi seriously handle their diabetes? Who still don't truly follow their diet/excercise/meds and only give it a half hearted try.
But if it were something like cancer they would be on time for every doctor appointment every shot/treatment etc. And be searching/begging for other options.

My daughters a good example, she doesn't take either her apnea or diabetes seriously at her age. Shes 18, "Those are OLD People illnesses" She says.
And despite her own father GOING BLIND from untreated diabetes, she refuses to accept it is a serious illness, not really. Sure she puts on a good show at the doctors, but watching her daily, you KNOW she isn't really trying, shes not convinced, shes just putting on a show or half hearted attempt to comply. Or its the other option of not having enough of the right kind of information and or the drive/desire to find it.

As for trying different masks, often your DME would like you to think you have to live with what they give you to save them money, and its not till they meet someone like the people on this forum or find places like here that teach them different.

[DreamLady]

Thanks for all the replies.

This is something that has baffled me from the beginning. I can understand taking it off unknowingly in the night. I get that. What I really don't get is those who on purpose take their mask off and go back to sleep. To my way of thinking, doing so is almost as bad as not treating apnea at all.

From my understanding, people with apnea develop it slowly over time, to the point they don't always even know there is a problem. Feeling crappy is simply 'normal'. That's the way it happened for me. My doctor said the body 'adjusts' and tries to compensate for the lack of oxygen. It does so quite well at first, but as the apnea worsens, the body doesn't cope as well, and we start to get symptoms.

This is why I made up my mind before I ever got my machine that I would use it every time I slept, no matter what. So if I wake up and decide I can't to wear the mask or pillows for another minute, I simply get up and start my day. To my way of thinking, taking your mask off (consciously) and going back to sleep is the same as deciding to drive without my glasses (I'm legally blind without). Some might say the difference there is that you are in danger of hurting others. But when you sleep without therapy, isn't it running the same risk? Sort of like playing Russian Roulette?

I guess it's human nature to rebel at times, and I've always been a person to obey the law, and follow instructions. Maybe it's as simple as that? I guess if everyone behaved the same, life would be much more boring, right?

[Myolin]

I am very not well with the mask that I wear for 7 months.

Before I was sleeping 5 to 6 hrs by night unaware that I had a serious problem. I was tired and often with headache in the morning but worked my 10 to 12 hrs a day.

The first month the DME gave me the LT for her as it was the smallest but I cannot keep my mouth shut! I was keeping it the most I could. Two hours at the time, 4 hrs by nigth. The RT told that there was no important leak but the one who sleep with me was awaked not by my snooring but by the noise of the expulsed air. I was more tired than before.

My pulmologist told me that 4 hres by night was good as I my apnea dropped from 38 to 0. She counselled a chinstap and the full mask. She also permit me to not take the machine with me for my 3 weeks travel in Europe.

Since, I am taking some break from the mask as I am less tired if I am sleeping without it. My eyes are so sore in the morning with the FF Quattro and the DME had no alternative. Some days I have to work and be concentrated so I put off the mask consciouly.

It is better with the Hybrid and I will receive an oral mask next week.

I will continue the treatment. I know that it is for life. I still hope to find a mask that will fit and make the treatment like a cure and not like a punishment.

You were curious why one would do that on purpose, that is it.

Take care.