Wednesday, September 28, 2011

Oh the travails ...

My life just keeps getting more and more complicated (or I'm simply becoming less able to cope).
I hadn't yet blogged about a distressing incident that happened while we were away earlier this month so I'll describe it now.
On our second night of travel, our first in the hotel, I awakened in the wee hours with a sense of something being "not quite right."
And I had to go to the bathroom really badly.
I disconnected myself from the CPAP machine and made my way to the washroom.
I remember having my hand on the light switch (it was the toggle-type) but not being able to make it work.  The light simply would not turn on. Fortunately, there was an excellent night light in place so I was able to make my way to the toilet on time.
And when I say "on time" that is precisely what I mean. Because I for one would not have wanted to clean up the mess that would have ensued had I not got there.
Everything was spinning by this time, and I tried to call for John to come help me, but no sound would come out.  I knew it was going to be lights out.
Which is exactly what happened.
When I came to, some 30 minutes later, I was still sitting on the commode and I had immediate recall of the event.
But, oh I wanted to sleep.
I cleaned up and made my way back to bed.
As I was hooking myself back up to the CPAP machine, I first checked the AHI to that point.
It was an astonishing 168 after only 2.5 hours of sleep!
I remember thinking, "That can't be right, I should have been dead!"
But I had to go back to sleep.
When I woke at around 6:00am, my AHI had dropped to 47 (still way too high but having been 168 at 2:30am, I guess this was progress).
The target AHI is less than five.
You will recall that the AHI is the total number of apnea/hypopnea events that occurred divided by the duration slept (in hours).  And the machine only registers breathing cessations longer than ten seconds.  So how on earth do I get an AHI of 168 after only two and a half hours of sleep?  I must have been "not breathing" the entire time!
I felt perfectly normal the next day but was concerned.  Had I had a seizure?  How would we ever know?  There were no witnesses to what had happened.  Yet the incident had all the hallmarks of every other seizure I've had.
On my return home, I booked an appointment with the respirologist so he could give me a printout from the CPAP machine for that night.  When he looked at the report, he immediately suggested that I certainly might have been seizing because "something fishy was going on.  These numbers are off the chart."
I brought the report to my doctor yesterday and explained what had happened so he checked me out thoroughly.  There appears to be "nothing amiss."
But he ordered bloodwork again, the whole gamut.  And I was to go "immediately, first chance I get, fasting."  (I did that this morning.)
He's also requesting another EEG, on a priority basis, to see if it will give us answers.  Obviously, since I don't have these events during the day (I have nocturnal epilepsy), an EEG taken during the day would be of little value; it's always going to show normal.  So we discussed having a sleeping EEG performed.
My doctor suggested that we could do the sleeping EEG and if I don't have an episode, we still might not be any the wiser.
I maintain that when I sleep, my brain does funky stuff.  Just because I don't always have a seizure, does not mean that an EEG won't show abnormal brain waves while I'm in a sleeping state.  As I recall, the only way we found out that I had nocturnal epilepsy, way back in 1988, was because I just happened to briefly fall asleep during a routine EEG.  Immediately that I did, the wonky brain waves started.  My neurologist was able to diagnose me because of that single occurrence.
My doctor's office will contact me to let me know when I am to go for that EEG.  Depending on the results, he will refer me back to the neurologist.
So, the waiting starts anew, again.

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