Re: For those who use CPAP machines...
- From: "Julie Bove" <juliebove@xxxxxxxxxxx>
- Date: Sun, 22 Mar 2009 10:19:58 -0700
"sanforized" <sanforized@xxxxxxxx> wrote in message
Julie Bove wrote:I was told to wash the mask and hose every day. Disinfect the humidifier
How long did it take for you to feel better?
When I got my first full night of sleep I felt like
a completely different (better off) person.
I've been using mine for 2 weeks now. I think I've only had it on for
the full night twice.
Sometimes have to yank it off after two hours.
I don't know how much instruction you got with the machine
and mask, but you're supposed to wash a full face mask
every day, new mask every 3 months or so. Rinse the hose
weekly. Use distilled water. New mask and filters at 6 months. I have
allergies and need new paper filters. He said to change those monthly. I
have read on the Internet to change weekly or every 15 days, whenever it
looks dirty. I have ordered those.
When things aren't going well I've had the same experience
as you, with very limited use. I tighten the mask only so
far as necessary to prevent any leakage. You have to get
used to not letting the pillow dislodge the seal. There
are things about this process that take some time. Yes, I
was quite frustrated with the process at times. *But* if
you have sleep apnea as I do, and you get a really good
night of sleep, its like a whole new world in the morning.
I don't think there is a broken seal.
And yes, I often wake in the night with the mask loose or
the headgear shifted, and have to make adjustments. However
I wake up less now with "night sweats" that can be one of
the consequences of sleep apnea.
I don't have those problems.
If you smoke, you need to stop.
i don't smoke.
Once it was because I felt I would
throw up. Another time I couldn't stop coughing and I have the full face
Sugar free cough drops are like candy during the winter.
Sugar free things give me gas and diarrhea. I can't have them.
Other times it seems to get all wet and it makes me miserable.
Several times I woke up to find myself snoring and the mask was totally
sucked up against my face.
That's odd. Isn't the body of the mask rigid with a soft
sealing structure around the perimeter?
It's not all that rigid.
My machine has a humidifier. I was told to set it at 1 to start out with
as that was the most common setting. The moist air was sooo cold though
that I put it on 2. Then it felt like I was breathing in hot steam. I
didn't like that at all. When I looked on the Internet it said 2 was the
most common setting. So I don't know about that. It's the Remstar
I use it without the humidifier whenever I can, and that's
pretty much whenever the weather is above freezing (for me.)
It is getting to the time of year I won't be needing any
humidification at all. Very soon now. For winter I have
a solution that is unique to my situation so it won't do
anyone else any good.
I was told never to use it without the humidifier.
I seemed to feel a bit better the first two times I used it. Like...
More alert or something.
But since then I have just been exhausted. After I get up in the
morning, I can't wait to get back to bed. I feel sooo sleep deprived!
And I can't bring myself to put the machine back on. Mostly I stay in
bed till lunch time.
Strangely enough when I sleep on the sofa I don't
get apneas like I do in bed. But it takes an observer
to tell how well, or badly, alternate locations can
serve. At night I seem to get apneas on the sofa as well
so it might have to do with what phase of sleep I'm in.
I view sleep apnea as another, very nuisance, handicap,
and do work-arounds, whatever it takes.
I am more forgetful than ever. I keep forgetting to take my meds. Then
I try to concentrate so much on taking the meds, I forget to shoot my
insulin. I sit here wondering why my BG is so high. Now it wasn't this
way when I first started using the machine. My BG went down to normal.
But the past few days it is bad again. Of course forgetting the meds and
insulin likely isn't helping.
A neurologist told me that some large percentage of adults
diagnosed to have adult ADD had all symptoms disappear once
they were diagnosed with sleep apnea and treated for that.
My dad has ADD and his symptoms never disappeared.
I also wonder if it could be the illness. I am done with the 2nd Z pack.
I felt better while on it but now the cough has come back and my mom says
I sound worse.
You are your own best advocate and I'm pleased to see you
working out the problems by considering the entire organism
all the time.
Today I stayed in bed pretty much all day. I just didn't have the
strength to do anything else.
Whenever times get tough (and they do for everyone, most
folks try to ignore difficulties) I am fortunate to be
in a position to take daytime naps. On the sofa works well
for me, but if I'm really tired, I'll put the mask back on.
Come hell or high water I'll work to get some proper sleep.
I gave up complaining to the equipment supplier and the
physician, and work on getting sleep. In my case I use
2 pillows, the top one is a down pillow that I can mold
into any shape I need to support the top of my head but
leave a pocket for the mask when I lie on my side.
I am allergic to down. I have to sleep on a GERD wedge but I put a regular
pillow on top of that.
They probably gave you a 6 foot hose. First chance you
get, try to acquire a 10 foot hose and route it over
the headboard if you think that will work for you. Under
medicare I get 2 new hoses a year.
I have a 6 foot hose and no headboard.
Not all masks are the same, no matter what they tell you.
For me, some fit better than others. I have numbered my
masks with a permanent marker and I circle through them.
Eventually each gets to the point where they just won't
seal very well. I get two headgears a year. Eventually
you can build up a useful collection, though I never discuss
that with the providers.
Yes, sleep apnea is a pain in the ass. Yes, the solutions
seem easy, but for the most part they're not as advertised.
It is another whole thing to get used to with a series of
problems to work through. But it is better than spending
the rest of one's life sleep deprived.
Right now I feel more sleep deprived than ever.
I wish you well in this journey. You'll end up being a
better organized much more patient person once you do.
No matter how good things were before, they'll get even
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