Idiopathic hypersomnia: Rare disorder means the woman sleeps 22 hours a day

A woman says she’s a true ‘Beauty Sleeper’ thanks to a disorder that causes her to sleep up to 22 hours a day.

Joanna Cox, 38, once slept for four days without waking due to idiopathic hypersomnia.

She was diagnosed after years of sleeping too much and struggling to stay awake during the day. The rare condition leaves sufferers with extreme daytime sleepiness – often resulting in the agony of waking up and feeling “restless” and “mentally foggy”. The sleep disorder means Joanna “never feels rested” and often sleeps 18 to 22 hours each day.

Before her diagnosis, Joanna found herself falling asleep in unusual places – including in a club during a night out and behind the wheel of a car.

The mum-of-two even slept on flights and missed out on a holiday to Spain with Caitlin, 20, and Isabelle, 18. He survives on protein shakes and ready meals because they are eaten “quickly” before he falls asleep again.

She also suffers from “vivid hallucinations” while struggling to stay awake and has a recurring vision of “hundreds of spiders crawling” all over her bed. Joanna has even ended up in hospital with low blood sugar after spending four days sleeping without waking up to eat.

She doesn’t know what caused the condition she was diagnosed with in October 2021, but is desperate to find a doctor who can help her manage her symptoms. Joanna, who is currently unemployed, from Castleford, West Yorkshire, said: “It’s honestly ruining my life – I’m like Sleeping Beauty in real life.

“I can’t be woken up once I’m asleep. “I can’t work, I can’t drive and I can never make plans because I don’t know if I’ll be awake.

“I wake up not knowing what day it is or how long I’ve been asleep.

“It’s such an isolating situation to be in and I really want some help.”

Joanna began experiencing symptoms in 2017 when she noticed herself feeling extremely tired during the day. She owned her own cleaning company and struggled to get through the day without needing to rest and eventually sleep.

Joanna even found herself falling asleep while out in the car and had to give up driving.

(Joanna Cox/SWNS)

Over the next few years, she went back and forth to the GP, trying to overcome her fatigue.

She continues: “It started out of nowhere – nothing triggered it, I just felt really tired.

“At first they thought it was depression and referred me to a mental health specialist. “But that was ruled out because I had no signs other than fatigue. specialist in case a snoring problem was affecting my sleep. “I went for a lot of tests, the doctors thought it was an infection, multiple sclerosis and even cancer at one point.” worse.”In the end, I had to quit my job around 2019.”

After speaking to several different psychologists, Joanna was finally referred to a sleep clinic at Pontefract Hospital in Yorkshire in October 2021.

He watched through the night and was officially diagnosed with the rare sleep disorder, idiopathic hypersomnia. The condition continued to worsen over the years, and now Joanne struggles to stay awake for more than a few hours a day.

Mom tends to feel most alert in the early hours of the morning, so she often walks her cockapoos, Autumn and Bobby, both six, around 2am.

As well as struggling to stay away, Joanna says she has been experiencing ‘horribly vivid dreams’ when struggling to wake up from a deep sleep. She currently lives alone, but is regularly visited by her two daughters Caitlin Cox, 20, a student nurse, and her younger daughter Isabelle, 18, a waitress.

The couple pops in to check on their mom and walk the dogs if she hasn’t woken up to take them out.

“It was very hard on my daughters,” she said.

“When it first happened in 2017, they were both living at home and everything changed overnight.

“I couldn’t drive them to school because I fell asleep at the wheel, so we had to arrange it through the school.

“I couldn’t have done it without their support.” Isabelle saw me at my worst and basically had to step up and be a mom – wake me up as best she could to get me to eat or help me go to the bathroom.

“I’ve had carers before but no one knows how to look after me because it’s such an unusual situation.

(Joanna Cox/SWNS)

“I can wash and feed myself, but it makes me wake up which is impossible.” Just try to deal with it on my own, which can be difficult, but I don’t know what else to do.”

Joanna had experienced many “embarrassing” moments because of her condition, and now often avoids making plans and meeting people.

She has also “put off” dating and doesn’t think she can sustain a relationship because of the disorder.

“Before I was diagnosed, I fell asleep in a booth at a club on a night out,” she continues.

“The liar thought I was just drunk and kicked me out – it was so embarrassing.

“I had no idea what was wrong with me and it was so upsetting.

“I’ve been single for seven years now.

“I never entertain the thought of having a partner again – it doesn’t even cross my mind.

“I can’t imagine being with someone with this condition.”

Joanna has tried many different treatments and medications, but has not found anything that helps relieve her symptoms.

She is desperate to find a doctor who can help her live a more normal life. “It’s really upsetting when people just say I’m ‘lazy’ or I need to set more alarms,” ​​she said.

“One day recently, I was up for 12 hours, and that was the longest I’d been up in almost six years.

“The shortest is usually a few minutes, just enough time to wake up, have a drink and then go back to sleep.

“I really hope that sharing my story will help me reach out to others with the condition and hopefully find a doctor who can help.”

SWNS

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