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.