dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

Mike Whiskey Tango

on October 13, 2012

So, I went back to the sleep clinic on 1 October to re-sit the Maintenance of Wakefulness Test (MWT) this time on medication.

As you may recall, my first efforts were pretty appalling.. or a resoundingly successful test failure as I like to put it (makes me feel better that way!).

So this time I was allowed to have medication during the test period.  The idea of this test is still the same as the last one, I get hooked up to the electrodes (I’m getting quite used to this now).  Then I need to entertain myself for 2 hours and then the technician comes in and I am asked to sit quietly for 40 minutes on a chair with no distractions whilst staring at the wall.

Exciting times.

My sleep technician is a total gem and we had a big chat about what I should do.  So we agreed that seeing as I am allowed 4 pills per day, that is what I will take for this test.  So I had a pill roughly 30 minutes before each testing period is due to commence.

A friend suggested I concentrate on learning the alphabet backwards.  Not because this is a particularly useful skill, but because its tricky and keeps you thinking and might keep me awake.  So I gave it a go.  I nailed it in the first session.. I got really fast at it, to the point where the backwards alphabet started to sound more familiar than the forwards alphabet.

Then my mind starts wandering.. hmm who decided this alphabet order anyway?  Do Greek’s sing their alphabet to the same singy songy tune..?  You know, thrilling, absolute Nobel Prize winning thoughts going on here.  But.. it worked!  I got through the first test.

You’re Nicked!!

Second test.. not so great.. Now that I can scratch “learn alphabet backwards” off my list of things to do before I die,  what else could I do?  I tried to learn the military alphabet.. Honestly I don’t know the correct name for it, but you know. Alpha, Bravo Charlie.. I couldn’t remember it all.  Apparently I didn’t pay quite enough attention during my childhood when my parents were repeatedly watching back to back episodes of the Bill.

So.. during the second test I felt my mind wandering.. in comes dreaming day dream time .. and woooaaah no you don’t.. I manage to sort of snap myself out of it.. thinking possibly a microsleep?  (quick little head nod moment).. not sure.. I’m so incredibly mad at myself I get little pin pricks of tears in the corners of my eyes.  I need to pass this test, or I cannot drive any more.  I need to drive so I can get to Uni, to work, to have any kind of a semblance of a life in this place.

The technician comes in at the end of this 2nd test period shaking her head at me a little concerned.  It is clear I’m struggling, I’m tired.  She says “what is making you so tired?” .. I retort all smart arsey “umm I have narcolepsy!”.. *little cataplexy moment*.. I apologise for being so obnoxious.  We have a really long chat about my medication.  I explain that while it is great, and helps me immensely, I can still sleep if needed.  I still think about sleep a lot, and I can still nap easily after having it if I let myself lay down.  It’s just that the tiredness is easier to fight now.  She says I shouldn’t feel like that on the medication and tells me I need to discuss it with the sleep specialist at my next visit.  She says if she hadn’t seen me take my medication with her own eyes she wouldn’t believe that I had taken it at all.

It’s while talking to her that I can feel the medication start to kick in.  I get a little prickly feeling along the back of my neck towards my shoulders and a tingle in my inner forearm.  Like a little adrenalin rush.  I’m cursing my body for finally deciding to kick in with the goods at this late stage, right after it is needed.

The last 2 tests I did just fine.  I googled the military/police alphabety type thing in the break.  So now I’m all over it.  I race myself with the alphabet backwards as fast as I possibly can.  I say the military alphabet backwards too.  I spell out words in the military alphabet.  I try to find words that spell out as sentences that actually mean something.. etc etc.. I stay awake!

I received the results today.


As you can see, this is a significant improvement from my last MWT.  The notes say that there was one microsleep present in Test # 2 at about 20 minutes in.  However I am hoping.. that these results mean that I can drive at least after taking medication.

I will know after my visit with the specialist on 22 October..

In the meantime, if you ever hear of anyone wanting someone who can rattle off the alphabet backwards, you just point them in my direction!



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