Posted by: Jan | June 3, 2010

I’ve got data!

I couldn’t stand it anymore, so I got Encore Viewer software so I can see my data.  I HAD to see what’s going on. 

For the past 9 years, I thought I was in “peri-menopause”.  Since my youngest was born, I wake most days at 4:30 a.m. sweating profusely and with my heart pounding.  Every negative thought I can possibly think of runs through my head, and I often cannot go back to sleep for hours.  Sometimes I just get up and DO something, rather than ruminating over everything that’s wrong (or not) with my life for hours.  When I get good and cold again, I can return to sleep, often just a short time before I need to get up for work.

So I developed some really rotten sleep habits to thwart my 4:30 a.m. “wake up calls”.  One trick was to go to bed REALLY late–1 or 2 a.m.  When I do that, my chances of sleeping through until my alarm at 6:45 are pretty good.  But, the sleep debt was not good, and I would be very tired during the day.  After a few days of this, I’d be exhausted and go to sleep around 10 p.m. for the entire night.  Back on a normal schedule the next night, the whole cycle would start again.

I had a very hard time adjusting to CPAP, and the first weeks weren’t good.  But finally I hit that sweet spot, where I could sleep most of the night, waking only to manage the hose when I turned over, then quickly back to sleep.  Hey, no hot flashes!

When I switched to the Swift LT mask, hose management was no longer an issue.  I already suspend my hose from my wall-mounted swivel lamp.  Now, with the little hose attached to the top of my head, I didn’t have to physically move the hose to turn on my back or left side.  I started sleeping all night, waking to a wonderful, delicious calm. 

I realized that the 4:30 wake up calls might actually have been OSA.  When I was paralyzed in REM sleep and my airway was obstructed, my body had to throw everything it could at me to wake so I could breathe.  A big hit of adrenaline could explain my symptoms.  So with CPAP, the 4:30 wake ups seemed to be blessedly gone. 

Until a few weeks ago . . . 

I woke with a BIG hot flash.  Heart was pounding, sweat was soaking my nightgown and bedding.  Just like old times.  Rah . . .

The next night, it happened again, not quite as severe.  And the following night, too.  Why was it back???

That was around the time of the Great Pillow Exchange, and with my new, firm nasal pillows, I had a leak-free, hot flash free night.  Aha!

But as the pillows soften up, the hot flashes are returning to a lesser degree, now several nights a week. My first guess was that my mask was leaking too much. It sure felt like it.  Sometimes I wake with a swollen eye from the constant barrage of air leaking all night. 

 I was certain I’d find a lot of leakage in my data to explain it.  Nope, data shows low leakage all the time.

Or, while my AHI’s are very low (averaging about 0.5 over time), I thought perhaps at least once a night I  had a “big one”  (obstructive event) that my machine couldn’t handle, and that was causing the wake up call.  Nope, the data shows NO obstructive apneas (none, zip, zilch!), a very few scattered centrals (not on this particular sample) and periodic breathing (not enough to register 1% on my machine’s LED screen).  It does show some significant RERA’s and Vibratory snoring when the pressure goes up.  I don’t know why I have those, but that’s not likely to cause the hot flashes.  So I just don’t know.

My theories are all shot to hell, and I’m back to peri-menopause, year 10.  YUCK!  I’m tired of that.  I wanted OSA to be the cause and CPAP to be the cure, but I guess not.

I do have an appointment at the sleep lab Friday to look at all this, but I’m guessing they won’t have anything to tell me.  DARN!

But, I will say how great it is to be able to look at my own data to see what the heck is going on.  I don’t feel like I’m flying blind anymore.  I feel like I can spot a problem that needs attention before it gets big, or reassure myself that everything is going well.  I feel like I can steer the ship–with the help of medical professionals.  Having that control makes this all the easier for me.

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Responses

  1. Your final paragraph is a big YES for me, you say what I feel in a direct way I usually can’t manage.

  2. My biggest problem with CPAP at the beginning was that awful feeling of not being in control. I think that’s a big factor in compliance, but the “system” is not set up to give you control. You have to TAKE it!

  3. or maybe the first nine years were OSA and now you are really starting peri-menopause! Hopefully it won’t be too bad. Now what may sound like a strange question. How long is your hair? I find that if my hair is to the bottom of my neck or longer and I leave it down at night I wake up drenched in sweat. Dripping. If I braid my hair, I don’t. It may just be me and as my hair tangles around my throat my sleeping subconscious thinks somebody is trying to strangle me or something. But if you have long hair, it might be worth trying!

  4. I have really short hair–especially in the back ;o)

  5. Is this report from Encore Viewer or Encore Pro? I have Viewer and I don’t have that chart of Daily Events per hour. I guess it also depends on the machine – I have CPAP instead of AFlex.

  6. Hmmm, my Encore Viewer does show Daily Events per Hour for the last 5 days of the report range.

    These are 13 page reports. Are you sure you are looking at all of the pages?

    • I’m only getting 11 pages of reports per week. The difference must be in what data your machine produces and what mine does.

  7. Sometimes I get 12 pages, it seems to vary. In any case, look at pages 5 and beyond and make sure you scroll down as the daily events per hour chart is at the bottom.


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