Meet Charlotte: Living with Idiopathic Hypersomnia

8th March, 2024    |    By  Sleep Health Foundation    |     343

Idiopathic Hypersomnia is a sleep disorder characterised by extreme sleepiness during the day, sleeping for longer than usual, difficulty waking and staying awake, and feeling unrefreshed and unrestored by sleep. It is a rare sleep disorder, not well-understood (“idiopathic” meaning of unknown cause or origin), and can be debilitating for sufferers. In this video, Charlotte shares her experience from childhood, through to diagnosis and treatment of her sleep disorder.


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Video provided by Sleep Health Foundation

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Living with Idiopathic Hypersomnia

Vincent:
“My name is Vincent, and I’m about to turn 42. I work as a policy advisor for the Victorian State Government.

Childhood Sleep Struggles:
For as long as I can remember, I was the butt of family jokes about not liking to get up in the morning. When I was around 11, I started noticing that my sleep issues were impacting me in ways that went beyond just wanting to sleep a lot or a normal level of tiredness.

My poor mum would come up to my room repeatedly to wake me up. She’d get so frustrated that, eventually, she’d have to stand over me and rip the duvet off.

University and Early Attempts to Seek Help:
I realized my sleep was a serious problem when I got to university. I went to my local GP, but their default reaction was to assume I had low iron. They ran some blood tests, which came back normal, and then suggested I just get a better alarm clock.

That experience discouraged me from seeking help for quite a while.

Diagnosis Journey:
Eventually, I was referred by my GP to see a sleep specialist. It didn’t take long—he seemed to know what I had the moment he saw me. After undergoing a sleep study and a multi-latency sleep test, I was diagnosed with idiopathic hypersomnia.

I was completely gobsmacked. One, that I had a real, known condition, and two, that it wasn’t just laziness. It had a name, there was research about it, and there were even people who specialized in sleep disorders.

It had never occurred to me that such a speciality existed. I couldn’t help but think, ‘If I’d known this earlier, I could have had 10 more years of better quality of life.’

Post-Diagnosis Journey:
After my diagnosis, there was a journey to go on. My sleep specialist was very good at guiding me through it. The initial approach was medication—a wakefulness agent.

This gave me a sense of control over my disorder. With the medication, I could dictate when I woke up, which helped me regain some of my pride and self-esteem. I stopped beating myself up so much.

The medication not only helped me wake up but also improved my energy levels throughout the day. It had a big impact on my quality of life.

Challenges of Hypersomnia and Stigma:
There’s a lot of stigma around hypersomnia. People tend to empathize more with those who can’t sleep at night and feel tired as a result. But when someone says, ‘I slept for 15 hours, and it was terrible,’ many people don’t understand.

Some even think it sounds great to sleep a lot. But my condition is extremely detrimental to my life. While it’s not life-threatening like cancer, it significantly affects my physical and mental health.

Sleep is such a fundamental pillar of overall health and well-being. I’m surprised it doesn’t get more focus, funding, and research. Society doesn’t seem to recognize how critical sleep is to health.

The Need for Greater Awareness and Action:
More needs to be done about sleep health, including understanding both good and bad sleep, as well as sleep disorders. If someone’s sleep issues could be fixed, it would likely have a ripple effect, improving their physical and mental health.

I believe governments need to step up and address this issue. Governments often focus on one type of health problem at a time—I would really like to see them focus on sleep. It’s not just impactful but foundational for addressing other health conditions.”

Video by sleephealthfoundation.org.au