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


The first GP in Australia I visited about narcolepsy didn’t believe me.

That was a nice feeling.  To be treated like a hypercondriac by your own Dr.  I took in all my letters and paperwork from London and explained that I reached the stage of being referred to a sleep clinic in London but then moved back to Australia.  He actually said to me in an accusatory tone “what makes you think you have narcolepsy?” he wanted to send me for blood tests.  I politely explained that this had been a long journey for me and that the neurologist in London also thought it was narcolepsy and that all I wanted was a referral for the sleep test.

I ended up telling him I wasn’t leaving without the referral.  Reluctantly, he gave me the referral and I called the sleep clinic to make an appointment.  The appointment was through Snore Australia.  I cannot recommend them highly enough.  They are really well set up and the staff are lovely.  My local clinic is set up in an old house, each room has been made to feel like a homey hotel room, there is a shared bathroom and  kitchenette and 4 rooms to conduct the studies with comfy beds, nice neutral furnishings, air conditioning and a TV.

My first test was a polysomnography test.  You go into the clinic at night, they hook you up with some fabulous electrodes all on your face, through your hair, on your legs.  You get a tube to stuff up your nose and a pulse reader to stick on your finger.  You are hooked up to a portable little machine that clicks into a docking station on your bedside table.  At an agreed time the technician comes in and explains that basically, you just need to go to sleep and they will monitor you throughout the night.  There is an infrared camera on you but you barely notice it.

I joke that half of the point of the test is that if you can sleep in those conditions then there must be something wrong with you!  It took me what seemed like forever to go to sleep that night.  The most annoying aspect was surprisingly not the tube in my nose, or the electrode wires all over the place, it was the pulse reader on my finger.  Every time I rolled over I felt like I was dragging the whole bed with me.

The technician had to come in a few times in the night. To fix an electrode that had come off, to fix my pulse reader, to ask me to turn onto my back and then onto my side.  However, I still slept.  I was woken up early, around 5am.  They don’t tell you much at that stage, basically just that I appeared to go into REM very quickly which is a classic sign of narcolepsy.  They advised that to really test for narcolepsy I needed to do a different test, an MSLT.

Basically, my useless GP had referred me for the wrong test.

My results showed that I went to sleep quickly (what had seemed like an eternity to me was actually only 8 minutes) and that I went into REM sleep very quickly.  They recommended an MSLT.

My results were sent directly to my GP.. but surprise surprise, guess who has never called me to discuss the results?

I changed Dr’s at that point and now see a Dr who operates from the clinic at University.  She immediately referred me for the MSLT.


« Sleep studies

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: