Life with Narcolepsy: No matter what Aaron tried, he just couldn't stay awake
Updated
Narcolepsy destroyed Aaron's life, his cataplexy almost killed him.
Aaron Schokman was in his second year of university when his life took a dramatic turn for the worse.
No matter what he tried, he just couldn't stay awake.
He would zone out during lectures. When he came to, he was still taking notes but they didn't make any sense.
At first, he thought drifting off in lectures was just a normal symptom of being in his 20s.
But before long it became a constant struggle to stay awake.
Aaron's world was spiralling out of control.
He constantly felt like he hadn't slept for days.
And his relationships with his friends and family were crumbling around him.
The simplest of tasks became an immense struggle.
Some like driving even became dangerous.
But Aaron's condition was about to get much worse.
Emotions such as sadness, happiness, and anger began triggering paralysis.
If Aaron laughed, got angry or felt excitement, his whole body would freeze.
Aaron used to love swimming. But even that became dangerous.
On a trip to the beach, the exhilaration of catching a wave caused Aaron's body to freeze up.
He was left bobbing, face-down in the water, fully conscious but unable to move or call for help.
Luckily for Aaron, a passer-by spotted him and dragged him back to shore.
It took a while but Aaron finally got a diagnosis from his doctors.
He had narcolepsy and a rare condition known as cataplexy.
Narcolepsy is a neurological disorder that causes people to be excessively drowsy.
It's caused when the part of the brain that regulates sleep stops working properly.
It's unknown how common it is but is thought to affect approximately three in 10,000 Australians.
Cataplexy — a symptom of narcolepsy — is a condition where strong emotional reactions cause sudden and temporary paralysis.
To control his symptoms, Aaron was prescribed strong anti-depressants.
They made him numb and emotionless.
He says it was like the world had been painted grey.
Aaron clashed with his dad Shane, something he never would have imagined doing before.
If there was one emotion that Aaron was left with, it was anger.
"Suddenly he became quite violent, we had a lot of clashes with his siblings, with my wife, he was aggressive... It was very frightening times."
Finally a doctor suggested a new drug called Xyrem.
Xyrem is the brand name of the drug sodium oxybate.
In the US, it was approved for the treatment of narcolepsy and cataplexy in 2002.
Around the world, Xyrem is viewed as the best treatment for Aaron's condition.
The Australian distributor of the drug UCB gave him six free bottles as part of its compassionate access scheme.
Its effect was incredible. For the first time in years, Aaron felt like his old self again.
But there was a catch.
After a few months, the free trial ended and he had to find $1,800 a month to pay for the drug himself.
In the US, the drug manufacturer Jazz has been criticised for continually increasing the cost of Xyrem.
Its price per millilitre jumped from $US2 to $19 between 2007 and 2014.
More than 40 Australians have used Xyrem.
Most paid for it themselves, but at least three lucky patients have it funded by their hospital.
Aaron is not one of the lucky ones.
The thought of returning to life without the drug fills him with dread.
"Now that I'm on this medication and I've been given a taste of how my life can be I don't want to go back to the way things were."
Credits
Reporting: Sophie Scott, Meredith Griffiths; Digital production, photography: Mark Doman; Video: David Maguire Design: Ben Spraggon; Development: Colin Gourlay;
Topics: sleep-disorders, diseases-and-disorders, health, sleep, sydney-2000, nsw, australia
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