Finally, some progress

[Mnementh]

When I first joined here, it was because I was looking for ways to keep my mask on my face, as I kept taking it off in my sleep. This problem is still with me, but I'm finally starting to see some progress! When I got the machine and they were setting it up, I asked for the leak alert to be turned on. They asked me why, and I explained my problem with taking it off. I wanted it to start alarming and wake me up, as I can't really reason when I'm half asleep. They said no, as a mask leak could cause it to go off, waking me up constantly. I responded that if it was waking me up when the mask was still on, causing a nuisance, that I'd just turn the alarm off. They said only they could do that, and that I'd have to come back in (an hour and a half drive for me just to get there) to turn it off again.

I kept trying different things I read about here and thought of on my own. I wash my face thoroughly, scratch any potential itches, basically just make sure I'm as comfortable as possible. Taping it to my face didn't help, as I still took it off without waking up. I tried better tape, but this left a residue on my face that took a long time to clean, meaning I had to get up earlier to get ready for work. (I refuse to wake up earlier than the 4:15 AM I already get up at.) Putting mittons on my hands so I couldn't grip the strap clips didn't work, as I took those off as well. I'd pretty much have to handcuff myself to keep the mask on. (Didn't try, as we don't have handcuffs in the bedroom. )

I put the mask on, and it starts at 4 cm, then settles for however long I have the timer set to, then goes up to whatever it needs to keep me breathing. My theory is that I'm fine when I put the mask on, as the pressure is low. I'm comfortable when I fall asleep. When it ramps up, the pressure is causing nose hairs to tickle me, so I would take the mask off. The scissors I normal used not being enough, apparently, I bought an electric trimmer and that seems to have helped. I also broke into the clinical menu (not exactly Fort Knox) and turned the leak alert on.

Sorry, DME, but I firmly believe both in:
1. Patients taking an active role in their treatment
2. Doing what I want with my own property

I seem to have trained myself to turn the CPAP off when I take the mask off, as at first I noticed no difference. The mask would be on the floor and the machine would be off when I woke up, the same as before. I then tried moved the machine to put it out of reach, but the hose isn't long enough. When nosing around the clinical menu, I noticed the hose length can only be adjusted up to 3 meters, so putting two 6 foot hoses together with the coupler ResMed sells would also result in lower pressure. So, I purchased a 10 foot hose so I can move the machine out of my reach. The hose is still on the way, so I've moved the machine to the floor for the moment. It's still in reach, but I have to dangle most of the way out of the bed to get to it. That seems to have made the most difference. When I take the mask off, the CPAP starts alarming shortly after. The path of least resistance is no longer to turn the machine off, so I wake up enough to realize what's going on. I put the mask back on and go back to sleep. I find I'm waking up about three times in the night, and am putting the mask back on, instead of having no memory of it and leaving it off.

Still progress to be made, but am at least moving forward!

[Madalot]

Congratulations on making this progress!! Your post shows that sometimes, you have to come up with creative ways to resolve issues.

Way to go!!

[Scarlet834]

This was a most entertaining story. Your motivation is inspiring and I'm sure you'll continue to make progress.

[DoriC]

Glad you're making progress. Have you tried to raise the ramp pressure closer to your regular pressure. And do you adjust your mask for leaks at your regular sleeping pressure and not your ramp? Is your bed pillow causing any problem? Keep us posted.

[Jersey Girl]

Wow! You certainly are innovative. That is good that you were able to do what you needed to make your therapy work for you. Keep up the good work!

Regards,

Jersey Girl

[Mnementh]

Glad you're making progress. Have you tried to raise the ramp pressure closer to your regular pressure. And do you adjust your mask for leaks at your regular sleeping pressure and not your ramp? Is your bed pillow causing any problem? Keep us posted.

I did raise the minimum pressure to 6 cm, (forgot to put that in there) as it was more comfortable to breathe at 6 than at 4. I adjust the mask for leaks by pressing the on button for several seconds, this starts the leak check feature. It turns on constantly at 10 cm till you press it again. That also helps me to find out if a nose hair or something is going to cause a problem later that isn't bothering me at lower pressures.

Thanks for the congrats, everyone!

[Nord]

This was a most entertaining story. Your motivation is inspiring and I'm sure you'll continue to make progress.

+1

I enjoyed your story of motivation and style...

Nord

[echo]

Indeed, kudos for your perseverence and ingenuity! And great story

You might also try locking your CPAP in a pet-travel box (read that on Ty'smoms thread I think) and then really LOCK it with a key (or combination lock, and if you can unlock that puppy in your sleep then WOW )

I was going to suggest bumping up the ramp too, but Dori beat me to it
You might find that in time, you won't even need the ramp feature anymore.

[Mnementh]

Indeed, kudos for your perseverence and ingenuity! And great story

You might also try locking your CPAP in a pet-travel box (read that on Ty'smoms thread I think) and then really LOCK it with a key (or combination lock, and if you can unlock that puppy in your sleep then WOW )

I was going to suggest bumping up the ramp too, but Dori beat me to it
You might find that in time, you won't even need the ramp feature anymore.

I actually considered locking it up in some sort of a box, but I'm afraid I'll muffle the alarm so much I won't wake up to it. The problem mostly is that when I'm half asleep I take the path of least resistance to get back to sleep. Hopefully the 10 foot hose will do the trick, at least until I get totally used to it. I still have hope that someday I won't need to move it away, or do a bunch of fancy tricks, I'll just put it on when I go to sleep and leave it there till I wake up.

We'll see.

[echo]

Hopefully the 10 foot hose will do the trick, at least until I get totally used to it. I still have hope that someday I won't need to move it away, or do a bunch of fancy tricks, I'll just put it on when I go to sleep and leave it there till I wake up.

I hope so too! I also did the mask removal trick in the first months, but not every night. Once, even after a whole year of happy cpapping, I woke up one morning with the mask off and the machine off too! So strange, the things we do while we "sleep"

[Mnementh]

Yes, that semi-awake/semi-asleep state is particularly bad for me. I'm unfortunately capable in that state of fairly impressive feats of dexterity, but minus any actual logic or reason. I'm perfectly normal while awake, but if I'm really tired and am forced to wake up, my brain stays fuzzy and I forget how to do simple tasks. But I can do complicated ones. It used to be worse when I was younger. For example: I have in the past been awakened by my alarm clock, but I forgot how to turn it off, so I disassembled it. I unplugged it, but the battery backup kept it beeping. I tried to remove the battery, but I either couldn't figure out how or the battery was stuck in the connector, so I ripped the cables out of the clock. It had no power, so it must have stopped beeping, but I apparently didn't think that was good enough. So I got a screwdriver out and disassembled it. I took all the screws out, removed the circuit boards and the display, disconnected every wire, and laid it out all nice and neat. Then I went back to sleep.

I would set my stereo to blast some truly ungodly music, and one early morning I couldn't figure out how to turn it off. I took all the power and audio cables out of the back of my components, coiled them all neatly on the floor, and went to back to bed. (Including, I might add, the speaker cables that were dressed behind furniture and required me to move things to get to them!)

I have little memory of doing these things, but what memory I do have of them recalls a very fuzzy buzzing in my head during this, a great deal of confusion, and quite a bit of frustration. It's likely the frustration that caused me to overkill my clock and stereo.

It's been quite a few years since I've done anything like that, though, so I don't fear for my CPAP machine. The most I'll do it it now is turn it off.

[Mnementh]

Well, I seem to have adjusted to the 10 foot hose and the machine no longer being in reach without getting out of bed. By that, I mean I'm now getting out of bed and turning it off without having any memory of that, either. Sigh.
Something seems to be happening after about 2 hours. The data shows that after being on for about 2 hours I take the mask off and turn the machine off.

Maybe I'll have to tie myself to the bed. Don't really like that idea, but I'm really trying to keep the mask on all night. I'm not waking my wife up when I do this so she can't help me.

I'm also thinking of asking my DME to order a new mask for me. I'm using the Mirage Quattro right now, and it's fine when I fall asleep. I saw there is a mouth only mask available http://bit.ly/csfu9R, and am wondering if that might be the way to go for me with my nose issues. I still think I'm being tickled by nose hairs as the pressure increases. The data shows the pressure got up to 11 right before I took the mask off last night, but it's been around 10 every night before that when I've taken it off.

Any ideas, or thoughts on the mouth only mask?

[Wolfhound668]

Locking it in a box was something I never tried when I was taking my mask off. Moving it out of range wasn't an option. Even as far back as my college days (back when dinosaurs walked the Earth) I was notorious with my roommates for killing my alarm and going back to sleep. It was at the point where I would climb down from the top bunk, walk across the room, shut off the alarm, climb back up into bed, and fall back asleep. All without remembering it when I finally did wake up.

It stopped being funny (to them) when I started doing it to *their* clocks.

I think if I were to lock my cpap in a box I would have to lock the key in a safe in another room just to be sure my half awake mind didn't unlock it.

[pdean44]

You seem to have a pretty determined subconsciousness. How does one out smart themselves?

[Mnementh]

Ok, I actually did tie myself to the bed last night. (Never thought I'd say that sentence!) It helped me to actually wake up when the apparently designated two hours had passed. Almost on the money, at 2:07 hours (according to the data) I awoke trying to get out of bed. (I had tied my leg to one of the mattress handle thingies with the tie to my robe.) The leak alarm was going off, and the mask was in my hand. I had obviously just taken it off. I got back into bed and put the mask back on. Immediately, I had to take it off again.

What seems to be happening is that the pressure from the mask is triggering my nose sensitivity. I've combed the desert (or at least the internet) searching for a way to describe the feeling. I know of no word to convey it. It starts in the tip of the nose, the fleshy part, not the cartilage. It's not quite a tickle, but closer to that than an itch. The more I think about it, the more likely I am to trigger an attack. I'm actually risking one right now just typing about it.

When I was a child, I would go to desperate lengths to take my mind off it, as that was the only way I could get it to stop. I would daydream and fantasize about anything and everything to escape from it. Only time really worked.

Anyway, that's the feeling I got when I tried to put the mask back on. Based on that, I'm definitely going to try the Oracle HC452. I'll call my DME tomorrow, and hopefully my insurance won't raise a fuss.