Love/hate relationship with CPAP

[Geminidream]

Being a relatively new user of CPAP therapy, I have had the usual adjustment issues, but lately I have been taking my mask off half way thru the night and sometimes I don't recall doing it....other times I am aware. The first 3/4 weeks of CPAP I was doing so well. Total compliance, switched masks once, good AHI/AI numbers, etc. When I am aware of taking it off, its because I have a sudden panic feeling and I just want it off my face. One time I believe it was because I thought it was close to time for my alarm to go off, so I took it off for what I thought would be 10 more minutes of snooze. I really hate feeling like a mack truck hit me on the mornings that I hardly had the mask on.....the memory of how bad I used to feel comes back real quick. It ruins my whole day and I am forced to take a nap (especially if since I am going back to college). I feel like this is a bit of a set back....anyone else had this kind of experience? How did you get past it? I resent wearing that mask, but I know its my lifeline.....

[ozij]

The few times it happened to me had to do with definite discomfort from the mask.

Sit down and write all the reasons you resent the mask so badly - listen to yourself very carefuly, and write them all down, honestly - don't argue back. Listen.
Then, when you've convinced your protesting mask-resnting voice that you're really paying attetion to the protest, ask yourself if any of those reasons are worth feeling so bad for in the morning.
We have many voices, and those that feel they are not really heard, not really listened to, resort to deeds. When we listen well, we can live more harmoniously.

Good luck,
O.

[KatieW]

Yes, I remember that feeling so well! If it's been about month, could it be that your straps have stretched a little, or your nasal pillows need replacing? Or, maybe try a different mask?

I realized after a month of struggling, that nasal pillows just weren't comfortable for me. I switched to a nasal mask (covers whole nose) Mirage SoftGel and Activa LT, and like them much better. I also tried several full face masks, but am still working on that.

Ozij--I really like your suggestion of writing down resentments, giving them a voice, and listening to them. I'm going to do that.

[Phillysnooze]

Gemini, I can relate to your post 100%. I started using a CPAP in May of 2008. The first few months I would often wake up in the middle of the night, have some kind of claustrophobic panic attack and tear the thing off my face. That was in the past. I switched to the ComfortGel Nasal Mask instead of a full face mask and that suits me better ... but if you're a "mouth breather" it might not be right for you. Good luck!

[Julie]

Well, you're a Gemini. When's the last time you were able to just be on one side of the fence for sure about anything . I do hope you get sorted out - it's worth it.

[Geminidream]

Well, you're a Gemini. When's the last time you were able to just be on one side of the fence for sure about anything . I do hope you get sorted out - it's worth it.

LOL@ Julie......You have me pegged on that one

Thanks for the responses.....I know I have to overcome that feeling somehow. Perhaps a good meditation session is in order....that is IF I can quiet my mind long enough.....LOL.

And Ozij....I think I should give your idea a try too. I really want to be compliant and continue keeping other health issues caused by OSA away. I realize how hard this condition is on the body.

[grandmma]

Gemini, I think many, if not most of us, go through periods where everything changes. As you say, you are relatively new to the therapy, so this could be just settling in issues.

I myself have ongoing mask issues - what fits one day will not fit the next, and I'm constantly re-adjusting. However, luckily I've never done anything to the therapy I'd be unaware of - such as taking off the mask, or turning off the machine. These to me are a conscious thing, and while I don't know why this is, I'm grateful. I hope it settles down for you soon. And after good therapy, that 'hit by a truck' feeling is not pleasant, is it? Reminds you of how far you've come!!

We have many voices, and those that feel they are not really heard, not really listened to, resort to deeds. When we listen well, we can live more harmoniously.

Ozij, I really appreciate that advice - thank you so much. Makes so much sense, and you've worded it so deceptively simply.

Edit: my apologies ozij, reading that back, I could have phrased that better - I meant you've worded it so that it is very easy to understand and follow.

[Patrick A]

Gemini,
I think we all go thru what you are going thru.
More than once I wanted to throw my machine out the window. More than once I would take that mask off and try to go to sleep without wearing it.
It takes time some times I still have problems feeling like I can't breath when I go to bed and first put the mask on. Last night was a prime example. I woke this morning at 0415 and have been up since 0500 I just laid there. Could not go back to sleep.
Good luck it will pass.

[Geminidream]

Looks like some progress made....at least for one night. I managed to leave it on all night last night, but then again I was exhausted from being up til 2:30 after having had my mom at the ER for what seemed like an eternity. Everything turned out fine, but whew was I TIRED. Hopefully, this is the beginning of me over coming my subconcious inclination to take off that mask!

[Jaylee]

Have you tried any other masks? I swear the one I use now was made just specifically for my body I litterally don't even feel it on. But the others I have are very uncomfortable and I would only use them if I had no other choice. Like the time I washed my mask way late in the day and it was not dry yet.

Maybe if you can try some other masks you will find one that suits you better, good luck

[Rebecca R]

Do you have the software and card reader yet Gemini? If not I think it may give you the clues you are looking for.

I had a terrible time with removing my mask. Most of the time I just couldn't remember taking it off, but when I did, I vaguely remember being uncomfortable or couldn't fix a leak. I started cpap in July and didn't manage to get the reader until December. From the info from the LCD screen, because of the way it reports the data, that my leaks were mostly under control. Was I wrong. Because the reports are based on median data, it is possible to think the leaks are nothing to worry about. I had clusters with large leaks and many apneas. The apneas were close to my pre-cpap levels during the clusters. I believe that I was removing my mask because of both the discomfort from the leak and the sudden onset of apneas--the leak didn't always occur first and cause the apnea. The moment I saw this, I started concentrating on controlling leaks. I am still working on it, but I haven't been removing my mask in the night since.

When I first joined the forum it seemed like more experienced members repeated the same thing over and over:"work on your leaks, get the software, work on your leaks, get the software, work on your leaks, get the software....."

I also suspect that removing our masks in our sleep is a normal reflex for some of us, until we get used to the new normal... I think I'll try Ozij's suggestion even though I am not removing my mask...can't hurt.

R

[Geminidream]

Thanks Rebecca R,

I have not gotten the card reader yet....not sure how much it would cost or even how I would get my hands on it. I do look at my numbers on the LCD screen every day and note changes, but I can see why this would not be near as valuable as the card reader. I have an appointment with my DME next week to look over the results from the card. Is there anything I should ask about?

[Rebecca R]

Thanks Rebecca R,

I have not gotten the card reader yet....not sure how much it would cost or even how I would get my hands on it. I do look at my numbers on the LCD screen every day and note changes, but I can see why this would not be near as valuable as the card reader. I have an appointment with my DME next week to look over the results from the card. Is there anything I should ask about?

This is where I got mine:
https://www.cpap.com/productpage/resmed ... -cpap.html

I am a newbie still myself, but this is what I would ask for: I think the card only holds the past 3 days of detailed data, so ask for printouts of the reports for those 3 days as well as all the summary data. You can see the maximum and median level of leaks on the summary reports. Tell her you need to bring it to your doctor if she doesn't want to give it to you.

More experienced members may have other advice.

R

[Geminidream]

Thanks Rebecca R,

I have not gotten the card reader yet....not sure how much it would cost or even how I would get my hands on it. I do look at my numbers on the LCD screen every day and note changes, but I can see why this would not be near as valuable as the card reader. I have an appointment with my DME next week to look over the results from the card. Is there anything I should ask about?

This is where I got mine:
https://www.cpap.com/productpage/resmed ... -cpap.html

I am a newbie still myself, but this is what I would ask for: I think the card only holds the past 3 days of detailed data, so ask for printouts of the reports for those 3 days as well as all the summary data. You can see the maximum and median level of leaks on the summary reports. Tell her you need to bring it to your doctor if she doesn't want to give it to you.

More experienced members may have other advice.

R

Thanks for the info....my appointment got moved up to today at 2:30. I have yet to see my original results from the sleep study so I will be asking for that as well.

[Patrick A]

I have not gotten the card reader yet....not sure how much it would cost or even how I would get my hands on it. I do look at my numbers on the LCD screen every day and note changes, but I can see why this would not be near as valuable as the card reader. I have an appointment with my DME next week to look over the results from the card. Is there anything I should ask about?

This is where I got mine:
[url]https://www.cpap.com/productpage/resmed ... -cpap.html[/url

More experienced members may have other advice.

R

Thanks for the info....my appointment got moved up to today at 2:30. I have yet to see my original results from the sleep study so I will be asking for that as well.

I got mine from a palce in Tiawan It's the same reader they sell on cpap.com maybe pm Rested Gal she can tell you of a couple of places to get it.
When you see the sleep doctor ask them to explain the report to you I asked mine ansd he did.