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Re: Love your CPAP so much that your afraid to sleep without
Posted: Sun Apr 06, 2008 1:22 am
by MrGrumpy
[quote="Fredman"]I have been using CPAP for 2 1/2 years. I feel so much better now that faced without using it to sleep with, I become a bit panicked.
My ear drum burst once due to an ear infection (which really I had no idea, it wasn't painful. Just a bit plugged), upshot - doc said to NOT use my CPAP until the eardrum healed.
I hated sleeping without...all the old symptoms came back...headaches, grogginess, crumpy etc.
Anyways, I think most of you feel the same way...at least the folks that have their therapies and machines tweaked to work well for them.
Curious to hear your thoughts!
Posted: Sun Apr 06, 2008 12:50 pm
by tangents
Love it? I wouldn't go that far, but I do think of it as my guardian angel. Once it's strapped on and humming, I can completely relax, knowing that it'll keep me safe while I sleep. I have battery back-up ready to go, but I really should rehearse setting it up a few times so that I could do it in the dark if I had to. I never sleep without it, nor do I want to.
Regards,
Cathy
Posted: Sun Apr 06, 2008 12:59 pm
by Fredman
I wonder if the power goes out, would you wake up when the machine stops?
Gee a person could get right worked up about what ifs!!!! Let's see a surge protected UPS or power strip plugged into a power pack that switches over automatically when the power goes out....
loverly
Posted: Sun Apr 06, 2008 1:17 pm
by Wulfman
Fredman wrote:I wonder if the power goes out, would you wake up when the machine stops?
Gee a person could get right worked up about what ifs!!!! Let's see a surge protected UPS or power strip plugged into a power pack that switches over automatically when the power goes out....
loverly
Well, I did. I had this happen to me about a year ago (or was it two?) when there was a power outage in our section of town when a transformer went out. I woke up the the sensation that nothing was blowing on my face.....no pressure. I did a calculation by the time the power went off compared to my internal clock on the machine and it was probably less than a couple of minutes.....if that. No big deal to me.
I was more worried that I hadn't gotten enough sleep time to be "compliant" for the night......but it was just a little beyond 4 hours of use, so I was compliant.
Den
Posted: Sun Apr 06, 2008 2:28 pm
by RAINSUX
Almost 16 months and I haven't missed a single night. I DO love it and look forward to hosing up every night. I sleep so much more peacefully than I used to and I feel SO much better than I did before. I WILL NOT sleep wothout it. My wife and I named her Wendy.
Sam
Posted: Mon Apr 07, 2008 7:18 am
by tangents
I wonder if the power goes out, would you wake up when the machine stops?
Once we had a power glitch in the middle of the night. Apparently, my machine doesn't turn itself back on automatically if the power is interrupted. I was awake
instantly, with the sensation of suffocating. So I'm not worried that I won't know if the power goes off.
I was more worried that I hadn't gotten enough sleep time to be "compliant" for the night......but it was just a little beyond 4 hours of use, so I was compliant.
Den, I find it sort of funny that you're worried about your compliance numbers! Are you afraid the CPAP Police will blacklist you or something?
Take Care,
Cathy
If your machine has an external power 'brick'
Posted: Mon Apr 07, 2008 7:29 am
by SleepyInIndy
that provides the 12V necessary to run the machine, there are devices available that will monitor your 12V output from the brick and if it fails, automatically switch over to 12V battery or alternate power. When running normally the device provides a small charge to keep the battery topped off.
I do not know if the switch over is quick enough to prevent the machine from shutting down, but they do work pretty well with ham radios.
If you live in a area with power interruptions it could make that early AM change-over easier.
Now the HH however, is a different fish.
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Posted: Mon Apr 07, 2008 8:06 am
by Bonnie
RAINSUX said
My wife and I named her Wendy.
I don't know your reasoning for Wendy but I would think Windy would be more appropriate
Posted: Mon Apr 07, 2008 10:48 am
by Wulfman
tangents wrote:I wonder if the power goes out, would you wake up when the machine stops?
Once we had a power glitch in the middle of the night. Apparently, my machine doesn't turn itself back on automatically if the power is interrupted. I was awake
instantly, with the sensation of suffocating. So I'm not worried that I won't know if the power goes off.
I was more worried that I hadn't gotten enough sleep time to be "compliant" for the night......but it was just a little beyond 4 hours of use, so I was compliant.
Den, I find it sort of funny that you're worried about your compliance numbers! Are you afraid the CPAP Police will blacklist you or something?
Take Care,
Cathy
Durned tootin'! Those folks can be "nasty"......every once in awhile they make semi-anonymous posts on the forum, too......
No, seriously, it's just that since the first month of my therapy when I had to go off of it for 10 nights due to a horrible cough/cold, I've tried to keep my compliance 100%. There have been a few nights when I just barely made it past 4 hours, but those were due to other circumstances......like situations at work (met myself coming and going) and the power outage. I KNOW how bad I feel from either too short of a night or having to be off of therapy.....and I don't want to go through it again, if at all possible.
That WAS a weird sensation, though......waking up to nothing coming out of the machine. It's amazing how "comfortable" we get with this therapy when it's working. (and dependent on it)
Den
Posted: Mon Apr 07, 2008 2:33 pm
by sharon1965
i've been on cpap for 15 months, with only time off for septoplasty a year ago in april
up till recently i've been 100% compliant, and doing fairly well with it, though thanks to the fact that i have 3 separate sleep disorders and live with chronic pain, i've never "felt" so much better...the biggest change for me is that i no longer sleep round the clock and i no longer crave sleep constantly, so at that point i would say i definitely loved my cpap (well, love/hate would describe it more accurately)
in december i broke my mask and had to wait almost 2 weeks for a new one: i spent most of those nights sleeping upright in an armchair in my livingroom because if i tried to sleep in my bed i woke up every 1/2 hour in a panic...not pretty..but yeah, at that point i was afraid to sleep without my cpap
in january i had another titration where they increased my pressure from 8.5 to 10 (though since i've been home i've used 9.5 at dr's suggestion) and from that night to this i've had a lot of trouble with mouth leaking...i've tried taping again, two full face masks and now i'm working on trying to get a chinstrap to work...i've been so frustrated with not being able to get a seal, with leaks and mouth leaks, and subsequently getting almost no sleep, i was ready to pack the whole thing in
last week around midnight i had a BIG tantrum complete with crying and flinging my mask across the room...my hubby was on midnights so my best friend came over, calmed me down, helped me get hooked back up and stayed the night to watch over me
i'm sad to say that i went 4 nights without it after that...the first 3 were absolute bliss, i won't lie to ya...i slept curled in a ball, felt like i slept all night and woke with a smile each morning
last night, though, i had the worst night of my life: i dreamed over and over that i was dead, went back to having episodes where i woke up gasping, shaking, heart pounding, sweating, like i did pre-cpap...this morning after i sent the kids to school i went back to bed and slept till they came home again at 4:00
i never want to go back to that half life i was living for so many years and i caught a glimpse of that just by avoiding the necessary for 4 nights
sorry this is so long...i've been wanting to post about being so stupid and reckless but didn't really want to admit it
i have to go back to finding that love/hate relationship with my cpap again, now that i seem to have re-developed my healthy fear of sleeping without it
Posted: Mon Apr 07, 2008 7:54 pm
by filbert
In a year and a half I've only slept without CPAP one night, and that was because the electricity was out. I was miserable. Since then I've moved to an area where the electricity is more reliable. Even with no power outages in over a year I'm considering a battery backup system.
A couple times I've fallen asleep (without the CPAP) while reading in bed. I was not comfortable and awoke quickly.
I do actually look forward to putting on the mask at night. It's a comfortable feeling when I turn on the CPAP. I'm so comfortable that I no longer rip off the mask the moment I wake.
Posted: Mon Apr 07, 2008 8:52 pm
by RAINSUX
I don't know your reasoning for Wendy but I would think Windy would be more appropriate
We named her Wendy because it sounds like Windy!
Posted: Mon Apr 07, 2008 10:32 pm
by Patrick A
In the three years (almost) I have been on C-PAP, I have only not used my machine 4 times. Once when I was sick with the flu. Once when I spent the night in the Emergency room. Once when I was hurting so bad that even the morphine didn't help. And last but not least when we were in the motor home and the cpap machine took a dump on me and quit running. Thank God I had a spare machine at home. I now carry two machines and two Back-up power devices with me when we goANYWHERE
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Sleeping without CPAP and rashes
Posted: Tue Apr 08, 2008 5:12 pm
by chapsmom
It's good to know others are like me...I too love my machine and can't seem to imagine sleeping without it...I tried one night because of a stupid rash I'm having ...but panicked and put on anyway...anybody else have a probel with rashes??
Relationship with CPAP
Posted: Tue Apr 08, 2008 11:13 pm
by kteague
Sharon - I've read on here something about the effects of cpap can extend a while after stopping using it. Someone said they were instructed to go off theirs 3 nights before another sleep study or something like that. Maybe that was true for you in the beginning. Sorry to hear you had a "meltdown".
I thought sure I had already responded to this post, but I don't see it. Can't say I love my machine, but I love the security of sleeping with it and don't mind using it at all. Afraid to (lay down) sleep without it? Oh yeah! My health is so compromised already, I don't have much confidence in my body's ability to withstand the stress of severe events.
Kathy