- Imaarl Duprey, 36, fell asleep for 14 days when she was a teen
- The disorder is called Kleine-Levin syndrome (KLS) otherwise known as ‘Sleeping Beauty syndrome’
- Her longest spell was 90 days
Here she shares her story in her own words.
Yawning, I rested my head against the window next to the passenger seat of the car.
I’m so tired, I thought.
I was 18 and we’d been at my aunty’s house for a New Year’s Eve party to welcome in 2008.
While it was a late night, it was by no means crazy. But as my mum, Kerry, drove me and my little sister, Pixie, then 16, home around 6pm the next day, I felt exhausted.
‘I’ll just close my eyes for a little bit,’ I said.
When I woke up, Mum and Pixie, were by my bed.
‘What’s going on?’ I asked.
‘I’d been in a zombie-like state for a fortnight.’
‘She’s back,’ Mum said, sounding relieved.
To my horror, I discovered I’d been in a zombie-like state for a fortnight.
‘You’ve been asleep for 14 days,’ Mum said.
Mum and Pixie explained how, on January 1, they’d helped me as I floppily ambled from the car to my bed, eyes closed.
Thinking I may have had the flu, Mum checked on me and woke me up to make sure I ate, drank and went to the toilet.
‘It was like you were in a trance,’ she added.
After three days, with Pixie’s help, Mum managed to take me – as though I was sleepwalking – to see our GP.
‘It’s typical teenage behaviour,’ the GP said, dismissively assuming I’d been drinking, taking drugs and partying hard.
‘I’d lost two weeks of my life.’
I’d never taken drugs and rarely drank! And, terrifyingly, I’d lost two weeks of my life.
Still, I went back to school and tried to forget about it.
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Later that year, in July after I left high school, I went on holiday for a week with friends in Cyprus. At an ATM withdrawing cash, that same woozy feeling came over me.
The next day out clubbing, I wasn’t drinking because I felt out of sorts, yet I felt drunk.
I wondered if my soft drink had been spiked.
Spaced out and extremely tired, I left the club alone to head back to where we were staying.
Next thing, I was woken by someone shaking my shoulder. I’d fallen asleep on the steps to a hotel, and a guy had spotted me. Worried, he sat with me while I was in my weird trance until my friends left the club and, finding me, took me home.
The rest of the holiday was a blur.
When I got back home, I’d stared at Mum vacantly and mumbled how tired I was then I’d gone to bed.
There I’d stayed for another 14 days.
‘It happened again,’ Mum said when I came to. Not straying too far from my bedside, distraught, she’d taken time off work to care for me.
When she’d woken me up to do the essentials, I’d mumbled and sulked, and got irritable if made to do something that didn’t please my sleepy state.
‘It was like dealing with a toddler again,’ Mum said.
I was so freaked out.
Seeing different doctors, a sleep specialist, and undergoing a string of tests at hospital for encephalitis and a brain tumour that were thankfully clear, didn’t bring any answers.
It was soul-destroying that no-one could work out what was wrong with me.
Then in August I had a consultation with a neurologist. ‘I think you have Kleine-Levin syndrome (KLS),’ he said.
‘There wasn’t a cure.’
Otherwise known as Sleeping Beauty syndrome, KLS only affected around 1000 people worldwide. While pleased to finally have a name for my disorder, and know it wasn’t life-threatening, I was disappointed to discover there was no treatment or cure.
‘It affects most sufferers in their teens and lasts around 10 years,’ the specialist said. ‘But some people can have it into their 50s.’
I just had to hope I’d be one of the lucky ones and grow out of it for good.
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Over time, I began to recognise the triggers.
‘I’m feeling fuzzy,’ I said to Mum in March 2010.
‘Don’t worry, darling, I’ll look after you,’ she said.
I was then out for the next month. Mum and Pixie looked after me, taking turns with my dad, Floyde, then 45, who didn’t live with us.
In a daze, it felt like I was under anaesthetic.
Falling asleep for a month one time, I missed uni exams and had to resit the entire second year.
‘I can’t go on like this,’ I sobbed.
During every episode I’d be out for the count for 20 hours a day. I was racked with guilt about how much it impacted my family.
Mum and Pixie had to watch me while I slept because I needed around the clock care. And I missed countless events and social occasions.
It was so hard for others to understand how debilitating my condition was.
‘I wish I could sleep all the time,’ people joked.
Really?! I’d inwardly scream, longing to live a normal life.
Despite feeling eternally exhausted, I managed to muddle through uni and graduate with a psychology degree.
But unable to hold down a permanent job because I didn’t know when an episode of KLS would hit and for how long, I took casual work as a fashion assistant.
Once I slept for 59 days and, in early 2013, aged 23, I was asleep for my longest ever spell… 90 days.
Waking, I cried my eyes out when Mum and Pixie told me I’d missed three months of my life.
Not only my mental health suffered, my physical health did too.
Sleeping for so long, my muscles whittled away, and bones weakened. I was gaunt and frail and had bed sores too.
Thankfully, I haven’t had an episode for 12 years now, and I’m hoping I won’t relapse. Aged 36 and single, I love my job as a mental health educator.
‘I’m revelling in every waking moment.’
While it’s always at the back of my mind, I haven’t let Sleeping Beauty syndrome rule my life.
For now, I’m revelling in every waking moment.
