If it gets worse, I can’t think, speak, or stand. They feel light and tingly, but they also become so heavy I can’t lift them up. I can feel an attack coming on in my arms first. Similar to cataplexy, these attacks are triggered by a moment of intense emotion. This isn’t a walk in the park, but it’s what my online support group calls “sleep attacks” that do me in. Plus, most people don’t start slurring their words when it happens to them. For most of my life, I thought this was what everyone else called “the afternoon slump.” Except it doesn’t go away after I take a nap. If I’m not ultra-careful about my diet, my mind is foggy most of the day, and by three in the afternoon, I feel like I could fall asleep at my desk-which I mean literally. I can’t do much before I take my medication, which kicks in with a feeling like my power switch has been flipped on. But the truth is, waking up in the morning is excruciating.
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I dress well, stand up straight, and never leave my apartment without a full face of makeup. There's all these new treatments coming out for narcolepsy in Europe and places like that, and Australia is really falling behind," he said.I expend a great deal of my energy every day trying not to look sick. "We're nearly 20 years behind the US in terms of treatment. The Senate inquiry into sleep recommended changing this. Having specialists that focus on sleep, their training focuses on sleep, would be really good," Aaron said.Īaron relies on a type of medication called Xyrem, which isn't distributed by pharmaceutical companies in Australia. So sleep medicine doesn't have its own field of medicine. "Sleep medicine specialists are linked to respiratory medicine. He said Australia needs to lift its game when it comes to sleep medicine. The first recommendation in the report was that sleep should be a health priority on par with nutrition and exercise.Īaron, who's now doing his PhD on narcolepsy through Sydney Uni, is disappointed by the lack of action on those recommendations. "I found it really hard to accept that I had a condition that wouldn't go away and I'd have to be on medication forever." 'Australia is falling behind'Ī Senate inquiry into sleep health reported back in April last year. "The diagnosis was really really hard for me," Laura said. Laura and Aaron were diagnosed after doing an overnight sleep study - similar to how people get diagnosed with sleep apnoea.īoth are managing their condition with medication, but Laura said if she accidentally misses a dose, her cataplexy can come back with force.
To a 21-year old girl, that was a really awful answer to get." "The first GP I saw said, well you just shouldn't laugh.
"The best description is like a normal healthy person being awake for 72 hours. That faulty switch means people with narcolepsy don't get the sleep they need at night, which means they're sleepy during the day. "In narcolepsy there's a group of cells deep within the brain that malfunction and that leads to an instability between sleep and wake." So for most of us, wake is a fairly stable state, and sleep is a fairly stable state and it's a short, sharp transition between the two," Professor David Hillman from the Sleep Health Foundation told Hack. "We've got some complicated circuitry in our brains to work the switching between wake and sleep. Narcolepsy is a sleep disorder that occurs in about every one in 2000 Australians.
It's like a weight on top of you and you're just waiting for it to be lifted so you can move again," Laura explained. Your mind races and you feel really panicked. "To me cataplexy feels like being trapped in your own body and being able to hear and think. Cataplexy is a common symptom of one type of the sleeping disorder. Laura didn't know it then, but she has a sleep disorder called narcolepsy. "Being paralysed in your own body is very very terrifying."
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