The Woolcock Institute of Medical Research

What's it like living with the sleep condition narcolepsy? What are the day-to-day challenges? What could our health system be doing better? We asked Harrison, a Computer Science student at Wollongong University in NSW, about how narcolepsy affects his life.

Tell us about your journey. How did you find out you had narcolepsy?

In year ten, I got sick with a virus. Eight months or so after that, I started feeling tired. All throughout high school, I'd regularly nod off for five minutes in the first class of the day. I'd come home and feel really tired in the afternoon.

But I didn't really think anything of it. I was just keeping up. You put it down to being a teenager.

Then at uni I was falling asleep during lectures. I'd be halfway through writing a sentence and I'd pass out with my pen on the page. I'd try not to fall asleep, I'd be trying to hold my head up, trying to keep writing.

But, still, I didn't realise that anything was particularly wrong. I was just kind of trying to get on with it and do my thing, just keep going.

It wasn't until my mum and fiancée put the whole picture together, we realised I had a significant problem.

I got a referral to a sleep specialist, who didn't really have a lot of solutions. I don't even think he knew the diagnostic process for narcolepsy, because I got a sleep study, but it was just an overnight sleep study; it didn't involve any daytime tests.

The specialist ruled out sleep apnea, and said it must be narcolepsy. He suggested I go out in the morning and get more sunlight, so I wake up better! This doesn't work – an hour later, I'm tired again.

It felt like the specialist didn't want to invest the time to investigate my condition properly, or just didn't know enough. He seemed pretty poorly educated about narcolepsy.

So we looked up other options in Sydney and came across the Woolcock Clinic.

That was around mid 2019. The first time I saw Dr Sheila Sivam at the Woolcock, she was immediately very, very helpful. On my first visit I was straight away put on a clinical trial for sodium oxybate.

It was just night and day in terms of how much they wanted to help me. I feel lucky to have found someone who legitimately had solutions and wanted to help.

What's it like living with narcolepsy?

I currently take stimulants to keep me awake during the day. I take a long-acting one in the morning and sometimes I'll need a short-acting one in the afternoon.

At night I take sodium oxybate. It helps me get a better sleep. Without it, I'd wake up multiple times a night, and then in the morning I'd still be tired. 

If I wasn't medicated, I'd probably sleep 20 hours a day. Even so, the fatigue is always there.

Cataplexy is also a part of my condition. That's a loss of muscle control. If I have a cataplexy attack it'll start in my face. My cheeks will feel numb, then I just lose all my muscle control. I'm conscious – I'm still there, but I'm just paralysed.

My cataplexy can be brought on by strong emotions. Any kind of strong emotion can cause an attack. I can have an attack if I find something particularly funny.

It happens very rarely now, maybe once every couple of months, max. But if I wasn't on a good treatment plan, I'd probably I have a cataplexy attack every day.

People don't know much about narcolepsy. If anything, they might have heard it randomly dropped in as a buzz word, like on a TV show for a funny storyline where somebody falls asleep too much. 

Pretty much in any representation I've ever seen of narcolepsy in the media, people with narcolepsy are the butt of a joke.

It's really hard to get people to understand when all I can really do is tell them I'm tired or exhausted, because everybody's tired, everybody would like a bit more sleep.

People say "I wish I could sleep all the time too!" Trust me, you don't wish you could do what I do.

People don’t have the knowledge to approach narcolepsy in a way they can empathise.

What sort of strategies do you use day to day?

I get pretty tired around 2:30 in the afternoon, so at that point I'll have a 15 minute nap. Any longer and it's not actually helpful. If I need to, I'll take a short-acting stimulant. Sometimes I have to nap when I get home.

I have to plan well to make sure my uni classes and need to nap don't cross over too much. You can't just do everything that everybody else can. You've got to be aware of your condition so you can manage it.

It's a lot of effort. I feel bad for the people around me because they care about me. I catch public transport, but my fiancée is always worrying I might fall asleep on the bus. She prefers to pick me up. But I feel guilty. I don't want to get driven around like I've got a chauffeur. I just have to understand, it makes her feel better if she knows I'm getting home safely.

I'm lucky to have people who are willing to help me out.

What's your hope for the future?

At the moment sodium oxybate costs $15,000 to $20,000 a year. Though I finished the clinical trial at the start of 2020, the company that sponsored the trial is paying for my meds. But they'll only pay for them until May next year. 

If sodium oxybate isn't on the Pharmaceutical Benefits Scheme by May 2023, I'm just not going to be able to take it anymore.

I think it would be a good idea to have resources that can be distributed to GPs and healthcare professionals to educate them that narcolepsy symptoms might not just be sleep problems. I can understand how a doctor might think symptoms like mine are insomnia, because you fall asleep for a couple of hours, then get up, then back down, and then up again. It seems like you can't stay asleep.

If I went to a GP to complain about being tired, they're likely to give me melatonin or something else. If someone's coming in and complaining about chronic fatigue, I feel your average GP wouldn't consider hypersomnia or narcolepsy.

We need to work harder to get treatment up to the standard that it's meant to be in 2022. We're years, if not decades, behind.

There's no registry for people with narcolepsy. If there was a way to keep track of the number of people who have narcolepsy, like a registry, I think that would help bring treatment up to speed. Right now, it's kind of like narcolepsy doesn't exist.

It's good I found the Woolcock. It's good to know that there's this organisation that cares about what's happening to me. It's great knowing that there's people trying to look for better options for me.

Find out more

• The Woolcock's Dr Sheila Sivam and other experts have released recommendations for improving the healthcare of people with narcolepsy and related conditions. Read Narcolepsy in Australia – problems and solutions
• About our Narcolepsy Clinic