Thursday, June 30, 2011

It's official ...

I am now a CPAP user.
Sort of.
At least, on a trial basis, anyway.
If I ever get it going properly.
After spending Monday night at the sleep lab, I went to the CPAP machine supplier and had an information session with them.  They lent me a machine for a month so we can find out if it will make a difference to my day-to-day functioning.
Well, it certainly is making a difference.
After the first night's use (Tuesday), I lost the following day (yesterday)!
I came home from that session quite confident about what to expect, not having had much difficulty at the sleep lab (other than not having "slept" much, in spite of the name).  Funny thing that.  The techie told me that I had actually slept better than the first time.
Yeh right!  My perception was that I had slept like a baby the first time.  Not so the second time through.  Go figure.
Anyway, on my way to bed that evening, I prepared everything as I had been instructed to do.  My first attempt at donning the mask didn't go so well but the second try seemed to be fine.
I hunkered down to go to sleep (I was truly exhausted and was quite ready to nod off).
It took me quite a while to lose consciousness because I was acutely aware of the vent that was directed right between my eyeballs.  I wasn't very happy about that but I had been warned that the air at the top of the mask was normal; it had to vent somewhere.  But right between my eyes?  Really?
I woke at my usual hour for that inevitable pee break.  But the dry mouth was unbelievable!  I removed the mask (there is an option to just pop off the tubing but I chose to remove the whole assembly)  and did my business.  On my return to bed, I put the mask on like a pro, cranked up the humidity setting on the unit (as I had been advised to do if dry mouth was a problem) and I settled back down to sleep in no time.
When I woke for the day (at 5:30am), my dry mouth was worse than ever and now I had a headache thrown into the mix.
What?
A headache?  I haven't had a headache since January 2008.
Sure hope this is a temporary, one-off incident.
I noticed that the reservoir of the CPAP machine was almost empty but I had no way of knowing if that was normal.  Never having used a unit before, I had no frame of reference.
As the day progressed yesterday, my headache worsened and I was drinking water non-stop, trying to get rid of the dry mouth sensation.
A double dose of fast acting extra strength Tylenol failed to relieve the headache.
Fortunately, my good friend RLR has been using a CPAP for two years (actually she uses the APAP but the principle is the same).  She was anxious to hear about my experience so we had a long discussion and she urged me to contact the supplier right away because something was amiss.
I called the supplier and she explained that it sounded like there had been a leak.  Had I not heard anything?
Actually, I wouldn't know if I heard anything.  I have no frame of reference.  I certainly didn't feel anything odd.  Everything appeared to be just as it did at her office.
Had the mask moved during the night?  That could happen.
I didn't think it had.  At least, it felt like it was still in place when I woke up.  I didn't need to reposition it.
OK, here's the thing.  Try it again tonight (Wednesday) but turn the humidity up higher still to see if that helps with the dry mouth.  Call her again in the morning to let her know how things work out because she might have to get me back in so she can do some troubleshooting.
So, later in the afternoon, I practised putting the mask on and taking it off, and running the machine to see if I could detect leakage.
And lo and behold!  When the machine powered on, it read out the message, "High leak in last session."
So, presumably, there was a leak the previous night (that being my last session).  But what in hell does "high leak" tell me?  I guess the supplier will know the answer to that one.
My headached progressed to an obvious migraine and for the first time in over three years, I had to resort to taking a Maxalt RPD.  I was not impressed.
On my way to bed, I took extra care putting the mask on, even taking the trouble to tighten the straps around my chin, just in case it wasn't quite tight enough (it had been positioned and tightened to the proper setting at the office).
And once I was all hooked up and ready to go, I powered it up and checked for obvious leakage.
There it was.  Where the tube connected to the mask, I could feel cold air being released and I'm fairly certain that shouldn't be.  So I disassembled it and repositioned the tube, pushing it as far as I could get it (that's not an easy feat for arthritic hands).  And I'm thinking, "high leak," of course -- a leak at the high end (mask) as opposed to the low end (machine itself).  I'm guessing.
Once I made that adjustment to the tube and turned the machine on again, I could no longer feel any air coming from that point.  And I could "hear" the difference; there was NO noise coming from the operation.  There was the very mild hum of the engine, practically imperceptible to my deaf ears.
When John came to bed, I asked him if he could hear the damned thing.
"No, not tonight," he said.  "But last night I sure heard it."
So, I figured I had it beat.
Last night, I again woke for my pee break and again I removed the mask.  Still had dry mouth, and now I'm nauseous.  On my return, I put the mask back on and settled back down but the stupid thing just wasn't right.
This time, the mask was buckling very noisily every time I breathed.  It hadn't been doing that before.
I tried adjusting it every which way from Sunday and the best I could do was minimize the buckling noise.  Back to sleep I went.
Again, when I woke, the dry mouth was severe, but not as bad as it had been yesterday morning.  The nausea was increasing though.  However, there was no headache to speak of (that Maxalt still doing its thing?).
I tested the machine.
"High leak in last session" -- damn!
O.K.  I guess a call to the supplier is in order.
But I'd have to wait 'til they open.  It being 4:00am and all, not much I could do about it at that hour.
By the time it reached a respectable hour, I had tested the tube and found no easily discernible leak.  I was armed with sufficient information to discuss the matter with the rep.
At 9:15am I was on the telephone to the supplier and fortunately, I reached her on my first attempt.
She was oh so sympathetic (perhaps because I sounded so pathetic?).
Her guess is that I'm not positioning the mask correctly but she agreed that I should be able to feel the leak.  She suggested that I bring the whole unit back and she would see if she could figure out what I'm doing wrong, if I'm doing anything wrong.  There could actually be something wrong with the unit itself.  (Let's not forget -- I WAS made on a Monday!).
Problem was, she couldn't fit me in today; tomorrow is a holiday; they are booked very heavily through until the appointment that I already have next Wednesday.  Unless I want to go to their other location this evening.  That's out of the question because I'm going for a massage at noon today and after my massage, I do NOTHING.  Nada.
I'll struggle along, try again tonight to position the mask and see if I can get it right.
Third time's the charm, right?
It better be because I need to get some restful sleep and thus far this week, I haven't had any.

2 comments:

Heather said...

those machines give me severe headaches and upset stomaches even when they are on right. I just can't take them. Yes, they help my breathing, but my head and stomach is so bad that it isn't worth to me to use. Good luck!

Heather

C. Bonnie Fowler said...

Thank you Heather
This morning, I didn't have an error message (suggesting that everything operated properly last night) yet still I am dry mouthed and headachey. I don't feel rested at all, in fact I'm thinking of abandoning the project altogether.
Your comment kind of reinforces my gut instinct.
Bonnie