Narcolepsy – have you heard of it?
Narcolepsy is estimated to affect around one in 2000 to 5000 Australians, though there’s no official data on its prevalence.
Monday 22 September was World Narcolepsy Day, which was an international effort to raise awareness about the rare sleep disorder known for causing excessive daytime sleepiness, sleep attacks and cataplexy (the sudden loss of muscle strength caused by emotion).
Sleep Health Foundation chief executive officer Dr Moira Junge outlined how the challenges people with narcolepsy face are multifaceted.
Firstly, the condition is misdiagnosed as depression or labelled as laziness.
“Many sleep disorders, including narcolepsy, are misattributed to laziness, depression, or poor lifestyle choices, and this delays diagnosis often for up to 10 years,” Dr Junge said.
People with narcolepsy experience an overwhelming exhaustion and thus struggle to keep up with day-to-day demands, impacting their ability to hold down full time work and earn a living.
“In car-dependent regions like the Yarra Ranges, narcolepsy poses unique risks and lifestyle limitations. People with untreated narcolepsy may be advised not to drive, especially if they experience cataplexy or sleep attacks,” Dr Junge said.
“There are safety implications as untreated sleep disorders can lead to accidents, especially when driving or operating machinery. This can isolate them socially and economically.”
I have narcolepsy, and I was lucky enough to get diagnosed at 12-years-old, which meant I’ve been able to learn how to adapt to the condition.
But most people with narcolepsy aren’t so lucky. For most of 48-year-old Mark Taylor’s life, he had no idea why he was more tired than others.
“I thought there’s something not right here, I shouldn’t be this tired, I should be more functional,” the Yarra Ranges local said.
He was around 30-years-old and working in the navy when he decided to figure out why he’d always struggle to stay awake in certain situations.
But it would take him 10 years and multiple sleep studies to finally get a diagnosis for narcolepsy.
Things got worse when he got dengue fever on a deployment, and it resulted in him getting medically discharged in 2020.
“It was much harder to get through my day… I found I had to get up and do things at work. If I was sitting at my desk, all of a sudden I’d be tired and I couldn’t think,” Mr Taylor said.
Now, he’s a stay at home dad. But even without employment, living with narcolepsy is still a battle for him.
“You’ve got to prioritise what you’re going to do each day… I really only get half an effective day.
“I’ve got kids and I want to be a good dad, but it makes it hard for when you’re trying to manage your family and your own expectations with the needs of your kids.”
“You have to fail at something,” Mr Taylor said.
Narcolepsy is caused by the deficiency of a neuropeptide called orexin, which is responsible for regulating wakefulness, appetite, mood and addiction.
If being awake and asleep is a light switch that turns on in the morning, and off at night, then living with narcolepsy is like having a faulty switch that keeps flickering on and off. Sleep constantly spills into the wake, causing the sudden onsets of tiredness typical of narcolepsy.
The second, lesser-known symptom of narcolepsy is cataplexy – the sudden loss of muscle tone caused by emotion such as laughter.
This symptom only appears in narcolepsy type one, while narcolepsy type two does not include cataplexy.
Treatment options for narcolepsy commonly include stimulants such as dexamphetamine and methylphenidate and wakefulness promoters such as modafinil, but these are only bandaid fixes which don’t
Dr Junge explained how living in car-dependent regions like the Yarra Ranges, narcolepsy poses unique risks and lifestyle limitations.
“With sparse public transport, not being able to drive can mean missing medical appointments, work opportunities, or community events, as well as an increased reliance on others.
“People with sleep disorders such as narcolepsy may need to depend on family or community transport, which can strain relationships or reduce independence.”
For Healesville-born Connor Millsom, getting his narcolepsy diagnosis at 24-years-old was a positive step forward, but it also came with grief for the years he’d missed out on in his life.
“After diagnosing it, I felt a sort of grief I suppose, or a guilt about the years that I’d been unmedicated.
“The mental health effect was extremely big for me before diagnosing it,” Mr Millsom said.
What if he had that medication and understanding throughout his teenage years? How much easier would it have been to be diagnosed while he was studying at university? These are the questions that run through his head.
Dr Junge said the mental health impacts of narcolepsy often co-exist.
“There is also the mental health overlap: Sleep disorders often co-exist with anxiety and depression. There is also social stigma… People may be judged unfairly for symptoms like sudden sleep attacks or excessive daytime sleepiness.”
The bottom line to all of this is that there’s often a huge mental health toll for those living with narcolepsy. I can vouch firsthand on that, and the current range of treatments don’t offer much reprieve.
Mr Millsom said the tiredness felt by those with narcolepsy is on a different level to those without it.
“It’s not just tiredness. It’s exhaustion, it’s incapacity, it’s paralysis.”
