Meet Aaron: Living with Narcolepsy

8th March, 2024    |    By  Sleep Health Foundation    |     269

Narcolepsy is a chronic disorder which is characterised by excessive daytime sleepiness. The sleepiness may be characterised by an inability to stay awake during passive situations, an irresistible urge to nap or falling asleep in situations where it is inappropriate to do so (such as in meetings, classes or cinemas). It may occur with other symptoms such as cataplexy, sleep paralysis and hallucinations. Cataplexy occurs with classic narcolepsy, now referred to as narcolepsy type 1. It involves a sudden loss of muscle power which is triggered by strong emotion such as laughter. In this video, Aaron shares his experience from childhood, through to his first symptoms, diagnosis and treatment of his sleep disorder.


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Video Transcription

Living with Narcolepsy

Aaron:
“My name’s Aaron. I’m 32, and I’ve just finished my PhD on the lived experience of narcolepsy in Australia.

When I was younger, I had really good sleep. I did a lot of sport, so I didn’t have any problems with sleep or think about my sleep quality. That was until my late teens or early 20s. I went to Europe on a Contiki tour, where I had a really bad flu. After coming back, I started feeling really, really sleepy during the day.

I’d go to university lectures and fall asleep mid-lecture, no matter what I did. I’d end up with a page full of scribbles instead of proper notes. At the time, I didn’t know what was wrong or what was happening.

The main sign that something was wrong was cataplexy. I remember the first time it happened—I was crossing the road at university. The light turned red, and I panicked a little. My legs gave way, and my laptop and books went flying.

What is Cataplexy?
Cataplexy is a symptom of narcolepsy. For me, it happens when I experience a positive emotion, like laughing or anticipating telling a joke. My muscles give way, and sometimes it leads to full paralysis for up to two minutes during a severe attack.

At the time, I didn’t know what was happening. A simple Google search—‘Why do I collapse every time I laugh?’—brought up narcolepsy as the top result. That gave me an idea of what I might be dealing with.

Diagnosis and Early Struggles:
When I first thought about narcolepsy, I assumed it was something temporary—something I could fix with medication. I didn’t realize that, 12–13 years later, I’d still be dealing with it. But that’s the reality of living with a chronic illness or health condition.

My first discussion with a sleep physician was pretty straightforward. I described my sleepiness and cataplexy, and they immediately put me on the waitlist for a sleep study. At the time, my sleep was fragmented—I’d wake up 10–15 times a night and never felt rested. I even started falling asleep while driving, which was a major red flag I brought up with my GP and sleep specialist.

Living with Narcolepsy:
The closest comparison to how it feels is staying awake for 48–72 hours straight. That’s what living with untreated narcolepsy is like. I was diagnosed at 19 or 20, but it took seeing multiple sleep physicians to find a workable treatment plan.

The medications available back then weren’t very effective. That’s when my mental health started to deteriorate. I realized I needed to find better treatment options, and eventually, I discovered sodium oxybate (Xyrem). It’s been a game-changer. I’ve been on it for five or six years now, and without it, I doubt I’d have been able to finish my PhD or get to where I am today.

I’ve also made lifestyle adjustments, like following a low-carb, low-sugar diet. If I eat something sugary, I feel sleepy for the rest of the day.

Stigma and Awareness:
There’s a lot of stigma around sleepiness, especially in workplaces and schools. It’s important for people with narcolepsy or excessive daytime sleepiness to know it’s okay to ask for help. Narcolepsy is a legitimate medical condition, and people need support.

In Australia, I think sleep is undervalued because we lack a dedicated sleep field. Sleep isn’t treated as its own discipline—it’s often lumped together with respiratory education. We need more psychologists, psychiatrists, and neurologists trained specifically in sleep.

The Future:
There’s hope for the future. More medications and treatments are becoming available, and research into narcolepsy is growing. However, self-advocacy is still crucial. Many people don’t know how to navigate the healthcare system or ask for the right help.

We need better education, more accessible information, and greater awareness about narcolepsy. That’s the only way to ensure people get the support they need.”

Video by sleephealthfoundation.org.au