"Normally, when I'm at a public event, it just creeps up on me – and before I know it I've missed a bit of the concert or film."
While there are drugs that can help manage the worst of the symptoms, none come close to repairing the underlying brain damage.
It's worse than wondering if you really ate that late-night sandwich.
Rebis Abolar wants to change the way narcolepsy is perceived in popular culture.
"I can’t go to a movie theater without falling asleep.”
I took some to find out.
For women with narcolepsy, one extreme symptom—cataplexy—can lead to them falling asleep in moments of extreme emotion. Even a simple laughing fit could be dangerous to their health.
Imagine stopping mid-coitus to grab your inhaler because sex is causing an asthma attack.
Xyrem is one of the most effective treatments for narcolepsy—only it's nearly impossible to get hold of, leading to fears that sufferers might start to self-medicate with drugs bought off the dark web.
The FDA approved modafinil to treat narcolepsy, but people are taking it illegally — off-label and without a prescription — to study or work on big projects.
My condition means I have to live with numb limbs, silent screams, and demons that sit on my chest.