Woman reveals how sleep disorder has robbed her of 'so many years'

The 23-year-old who has to nap for THREE HOURS every day: Constantly tired woman reveals how rare sleep disorder has robbed her of ‘so many years’

  • British woman has a rare disorder forcing her to nap repeatedly during the day 
  • The condition, called idiopathic hypersomnia, has no known causes or cures
  • The 23-year-old says she has fallen asleep in exams and has lost years to naps 

The 23-year-old first developed the condition in her early teens with the sleep disorder making her fall asleep during an A-level exam and forcing her to nap for up to three hours per day

A 23-year-old woman says her ‘insatiable appetite for sleep’ caused by a rare sleep disorder has robbed her of ‘years’ of life.

Helena Smythe, of Cambridgeshire, has idiopathic hypersomnia, a narcolepsy-like condition that is sometimes called ‘excessive daytime sleepiness’.

It leaves her feeling constantly tired, forcing her to take daily naps which last up to three hours. 

Ms Smythe, who has lived with the disorder since she was 12, said she feels groggy ‘no matter how much sleep I get at night’.

The condition even left her snoozing during A-level exams as a teenager. 

Doctors do not know the underlying cause of idiopathic hypersomnia so there is no cure and the condition can only be managed through medication.  

Discussing her battle with the disorder, Ms Smythe said: ‘I would miss school, have to cancel social events and even fell asleep during an A-Level exam.

‘I had to plan my whole life around sleep and pick between academia and friends.

‘I can’t tell you how much I missed out on as a teenager; I have lost so many years to sleep.’

Ms Smythe also revealed drinking a cup of coffee — a tactic used by many to perk themselves up — ‘doesn’t work’.

Helena Smythe, pictured here undergoing a sleep test at Royal Papworth Hospital in Cambridge, says her ‘insatiable appetite for sleep’ has robbed her of years of her life

Hypersomnia is a sleep disorder where people fall asleep repeatedly during the day; sometimes in the middle of eating a meal or during a conversation.

It is different from feeling tired due to the sometimes involuntary and overwhelming need to nap.

The condition can sometimes be a side affect of medication or the result of substance abuse. 

However it sometimes has no cause, this is called idiopathic hypersomnia.

The condition can emerge amongst people of any age but emerges most frequently during teenage years.  

Idiopathic hypersomnia has no known cure but suffers are prescribed medication to help them stay awake during the day. 

It is diagnosed after people undergo tests at a specialist sleep clinic.  

She added: ‘I have an insatiable appetite for sleep and while some people can just perk themselves up with a coffee or some caffeine, that doesn’t work for me.

‘I have to nap every day, and 20 minutes or half an hour is not enough. It needs to be two or three hours at a time.

‘The main symptom is that I feel excessively sleepy in the day, no matter how much sleep I get at night or how long I sleep for.’

Ms Smythe is now taking part in a sleep study Royal Papworth Hospital in Cambridge to help medics learn more about the condition.

She said that the medication she has been given to control her sleeping habits has helped. 

‘I am given medication which helps to alleviate my symptoms and although it has not entirely removed the problem, my quality of life is much better,’ she said.

‘And I am able to get on with life having had a much more “normal” level of sleep.’

Ms Smythe did not reveal what drugs she was taking, but NHS doctors can prescribe the stimulants modafinil and methylphenidate to people with the condition to stay awake during the day.

Additionally, she said having a strict bed time routine and ensuring she always gets up at the same time each day have also helped.

Ms Smythe also revealed she is due to start a full-time job soon, and is nervous that her need for sleep could disrupt her work. She did not reveal what the job was.

Studies into the prevalence of idiopathic hypersomnia are limited and it has been estimated that only between one in 10,000 people have the condition.  

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