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Medical update 
11th-Dec-2006 10:53 pm
Misc: brain side view on black
So the CPAP machine has been helping; it helped a huge amount when I first started using it, but has seemed to be getting less effective. Over the last couple weeks the effectiveness has gone down enough that I’m starting to feel like I’m dragging the way I did before I started using it.

One thing I discovered is that now that I’ve gotten more comfortable with the masks, they don’t work as well. The nose-only mask used to work really well; I’d wake up several times a night because I’d open my mouth and the rush of air out my mouth would wake me up, but I woke up in the morning feeling fantastic. But over time I stopped waking up in the night when I wore it. Well, a date with Mare made it clear that I’ve just learned to sleep with my mouth open and all the air escaping for extended periods of time. So that’s why the mask wasn’t working as well any more. (I tried propping my chin on a pillow to keep my mouth closed, and discovered that I can open my lips while keeping my jaw closed, so the chinstrap some people use wouldn’t be a perfect solution, although it would help some. My sleep specialist tells me some people actually use tape, but, um, not my first choice.)

The full-face mask solves the mouth-breathing problem, but (1) it just doesn’t fit (it chews the bridge of my nose up and pokes into my eyes), (2) it has some stupid design features that make it uncomfortable at the pressure I use, and (3) it doesn’t seem to maintain as much pressure as the nasal mask. I think the valves and connections on it just aren’t as high-quality as on the other mask.

Anyway, I had my followup appointment with my sleep specialist on Friday, and it was very productive:

  • I’m going to try a pressure of 17 (inches of water, I believe the units are) instead of the 15 she originally prescribed me. During my initial sleep study, 15 seemed to work, but I only got that high at the very end of my study and woke up shortly afterwards, so it didn’t get tested very thoroughly.
  • I’m going to get somebody who’s better at it fit me for a mask. This isn’t covered by insurance, but it’s only $50, and it’s better than being turned into a mental zombie by not having the CPAP work, or having chunks torn out of my face so I look like a physical zombie. :-)
  • I’m getting a referral to an ENT specialist. (I think this is a Very Good Idea.)
  • I’m having another sleep study in a few months.
She also gave me some recommendations about how to get more sleep independently of the quality of my sleep, which will be useful, I think.

I should say that I’m still doing much, much better than I was before I started using the CPAP machine, but I’d like to get back to feeling as fantastic as I did for the first few weeks. And I’ve got a bunch of things to try.

12th-Dec-2006 04:10 am (UTC)
For starters, you could try actually going to bed when you're tired. :-)
12th-Dec-2006 04:35 am (UTC)
What kinda crazy idea is that? I bet you’re one of those wackos who think if our military occupation of a foreign country is making things worse rather than better we should change our tactics, aren’t you? Sheesh, you just can’t talk to some people!

12th-Dec-2006 04:46 am (UTC)
So… what other mask choices are there?
12th-Dec-2006 02:12 pm (UTC)
So… what other mask choices are there?
For full-face masks, probably couple dozen different brands and models, some of them in several sizes. The one I’m using now has only one size, and comes with three little differently-sized inserts you fit into the edges of the mask to theoretically make it fit your face. No wonder it doesn’t fit so well. :-) Some brands of full-face mask come in as many as five or six different sizes.

There are all sorts of other differences among them, too, like whether the soft bits are gel-filled or not, whether they have a spacer on the forehead or not, how the straps connect, and so on. Froogling for “"full-face" "CPAP mask"” will tell you far more than you want to know.
12th-Dec-2006 04:51 pm (UTC)
Sadly (he says before even googling), my experience with a full-face mask is that they don't play well with full facial hair.

More generally, the few times I've tried using my cpap, I've ended up with reasonably significant nasal/sinus-based sicknesses, which has really turned me off.

I should try sterilizing the whole system and using distilled water for the humidifier, but it's been hard to work up the excitement for it...
12th-Dec-2006 05:49 am (UTC)
Have you considered taping your mouth shut before bed? :)
12th-Dec-2006 02:17 pm (UTC)
You wouldn’t be the first person who’s wanted my mouth taped shut. :-)
12th-Dec-2006 04:15 pm (UTC)
You've probably already looked at every CPAP model in the known universe, but I found this mask with a gel strip that can be boiled and molded to your face. I couldn't say how well it would mold, but have your doctors mentioned any products like that?

*kisses your sore nose*
12th-Dec-2006 04:49 pm (UTC)
Thanks; that does look marginally nicer than my current nose-only mask, but my current nose-only mask is actually fine, except for being nose-only. What I need is a full-face mask that fits (and maintains an appropriate amount of pressure). There are lots of alternatives, and I’m sure most of them would be better than what I have, but I want to wait before buying something (that insurance won’t reimburse me for, most likely) until my fitting. That’ll probably be an opportunity to try something in person, or at least see it, before buying it.

(Speaking of which, I’m puzzled that nobody has called me to make appointments; I was expecting phone calls yesterday.)

I love your userpic, BTW. That’s Rowley, isn’t it?

See you at Diesel!
12th-Dec-2006 05:39 pm (UTC)
Yep, that's The Rowler, taken on the first day I got my web cam. (Web cam which I forgot I had until just now -- I could have taken a picture of the mask you gave me after all!)

*clocks self on head*
12th-Dec-2006 08:54 pm (UTC)
just catching up on all of this. (yes, i still disappear for long periods of time. sigh.) i was set up with CPAP last year. it made a big difference for me, too.

unfortunately, i've rarely been wearing it for the past several months, which i know is Not Good. i've had some other medical issues which have caused nausea on and off, and i can't face wearing my mask at those times, even though it's nose-only.

i've had trouble finding a chin strap that keeps my mouth closed adequately. i'll be interested in hearing how the full-face mask works out.

if you want to compare notes, feel free to e-mail me. :)
12th-Dec-2006 10:45 pm (UTC)
Now you see why I couldn't bear to wear mine -- they gave me a nose mask and I can't relax with my mouth clamped shut. Knowing that there's a place that can fit a full-face mask is really encouraging, though; can you pass on their info?
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