Adjusted but not 100%

[Kahfree]

Hi everyone, its been a little while since I have been on here, but things are going alright, to a degree.

I have totally adjusted to the use of the nasal pillows and now I cant put the mask on till I am sure I want to fall asleep because when I do put it on, I am asleep in minutes. Its totally soothing I think, and relaxing for me. I use to put on the mask and watch television for up to an hour or more before I fell asleep with it. The proplem I am having is that I only use the mask from 1.5 hours to 3 hours max each night. I still am not conscious of the removal of my mask during the night. One night, I must have fought with the machine because after a few days my hose was dripping wet with moisture and that has not happened before. So, after cleaning it out and drying it, I noticed that for 4 days I had a 7 humidity level when it has been set to a comfortable 2. I must have changed the dial or something, but I have no memory of doing so. I never checked the humidity level each night before bed because I liked it on a 2 and in the past had no issues.

What is strange is my AHI is low (0.1-2.0) while wearing the mask, so I am not having a ton of apnea while wearing the mask, and my leak rate is the same every night at a 28. I am still very exhausted and need naps. I am beat actually and have no energy. So...what should I do about this? Is there something I should do, like set up a video devise and see what is going on with me in the night? I don't understand why I cant keep it on and why I cant remember. I wake up remembering my dreams, but not the issue with the mask. Suggestions please, as I want to make this work 100% of the time.

Treatment began in January, maybe I am still adjusting??

Kelly

[ozij]

Hi Kelly,
I think it's too long for you to be "still adjusting".
Have you tried wearing mittens to bed? Or taping your thumbs to your hand? It's no wonder you're tired, you're getting very little therapy time, so you have to find a way of making mask remove difficult enough for you to wake up when you attempt it. Someone once suggested taping part of the mask to their face -or maybe making it pull you hair somehow?

it would probably also help to tell yourself, kindly and firmly, every night before going to bed that for the therapy to work, you have to keep the mask on all night, and that you will not take it off, because you can't afford to. Try to visualize yourself sleeping through the night - turning over in bed, sensing slight discomfort, and not removing your mask. Try to discover what you miss most about your old way of sleeping - is this new way forcing a position you don't lke so much - and do you then snuggle comfortably once the mask is off? Do you miss the cool - or comforting touch of the pillows? Is the hose causing problem when you try to turn over? Promise youreslf that you will try to find a solution to any issue that's making this new way of sleeping difficult - but be honest: try to tell yourself that mask removal cannot be an option.

Try to listen to what removing the mask is trying to tell you - try to welcome that message, whatever it is, without condoning the deed. Maybe you have many concerns about using the mask - but haven't given yourself permission to sort them out - so the concerned part is simply doing what it wants. In welcoming the message I don't mean welcoming the deed - I mean really really listening to what this is about.

[Janknitz]

Is it possible to look at your graphs with that machine? It's a CPAP, not an APAP, right?

What I'd look for is whether the few apneas you are having tend to cluster anywhere--especially if you can tell on the graphs at what point you removed the mask. I'm wondering if perhaps your apneas are clustering during your REM sleep periods, and you may feel you are not getting enough air at that point so you remove the mask.

The other thing to try is to slightly increase the pressure (whatever your smallest increment is) and leave it there for several nights--see if there's any change good or bad regarding mask removal. Keep inching (centimetering?) it up as tolerated to see if that is the issue with your mask.

If there doesn't seem to be a reason for mask removal, then you have to make it difficult to remove the mask. Can that machine be set to sound an alarm for large leaks--in this case when the mask is removed but the machine is still running? I've seen some people attach a longer hose and make it difficult or impossible to turn the machine off without getting out of bed to do it (one post I remember is someone who put a hole in his wall and routed the hose through the hole to the machine in the room next door!). And of course tricks to wake you if you do remove the mask like taping the mask to your skin with some medical tape, bobby pins, etc. I think I also saw a post recently that the person set an alarm for 3 hours into the sleep cycle so he would wake up and check to see if the mask was still on or not--gradually he could set the alarm later and later.

[Kahfree]

Thank you for the suggestions. It would be nice to put the machine in a different room, but that wont happen. As for taping it to my head? I could try that too and tonight I think I will. Not sure I can handle the mitten suggestion as I hate my hands and feet to be hot. I will also try to talk myself into keeping it on all night. I am scheduled to go back to the doctor in May for my 4 month check up and I hope they can help me figure it out if I have not done so by then.

As for the graphs, it has a chart to show when I have apnea episodes, so I assume if I study these I may come to a conclusion about at what point in my sleep I am removing the mask. I have not changed the pressure on my machine, as I was afraid to do so, thinking I will void some medical issue or whatever with the health care company. I figured I would talk to the doctor about adjusting my pressure. She asked me If I find it hard to exhale with the air pressure, and I don't, so I assume that is not a problem.

I will try a few things this next week and post my results. I hope, and feel confident that one of the suggestions has to work.

Kelly

[robysue]

Kahfree,

You say:

I am still very exhausted and need naps. I am beat actually and have no energy. So...what should I do about this [taking the mask off at night]?

An obvious question, but one that needs to be asked: Do you use your CPAP for the naps?

Because if you DON'T use the machine for your naps, that MIGHT be why your unconscious is having such a tough time accepting that the mask is for real and has to stay on all night, every night. In this case, you need to use the CPAP for all naps as well as when you go to bed at night. And see if that helps convince your stubborn subconscious about the new reality of CPAP..

And if you DO use your CPAP for all your naps, there's another obvious question to ask: Do you have the same problem pulling the mask off in your sleep during naps?

[calgurl@hrt]

I am still a newbie to all of this but I wanted to add something here: At my first follow up appointment, after starting on the machine, I told the MD that I was still tired. He remembered that during my sleep studies, I moved around a lot. He then had me do some blood work, specifically checking my ferritin level. It was on the low end so he started me on ferrous sulfate and vitamin d. I'm not completely sure about the correlation between moving during sleep and ferritin levels but it seems to have worked for my lingering sleepiness. I don't think it was restless leg syndrome but something along those lines - I wasn't getting good quality sleep because I was moving. Not sure if this is possible for you but thought I would chime in.