When more than sleep "almost torture" becomes: what it is like to live with idiopathic hypersomnia

"I think the longest period I slept from Friday afternoon to Sunday afternoon has been", says Lucy Taylor.

"There was no one at home to wake me up," he adds.

"I finished working on Friday, went home, went to bed and woke up on Sunday."

  • "No, I'm not drunk, I have extreme narcolepsy"

Taylor is 42 years old, lives in the UK and suffers from a rare condition, idiopathic hypersomnia.

For her, sleep is a nightmare. Instead of letting her relax and relax, the hair causes a deep fatigue.

Two out of 100,000

"Hypersomnia is a condition that makes me sleep very long." The idiopathic term means that the cause is unknown, "explains Taylor.

"We are not sure what the origin is."

Lucy Taylor

Taylor has to take medicine to wake up.

"In most cases they have no trouble falling asleep, this is continuous, but it is not recovering, but they usually have problems when they get up and feel confused and irritable," sources say. the Spanish Association for Narcolepsy and Hypersomnia Centrals (AEN).

Taylor needs multiple alarms, medicines and of course his family to wake up.

In fact, it takes between 12 and 15 pills daily, not just to wake up, but to stay awake.

According to experts, this condition relates to 2 persons per 100,000.

"Sleeping has nothing refreshing"

According to the American Sleep Association (ASA), hypersomnia can be caused by other sleep disorders and also by genetic factors, in addition to the intake of certain medications and medicines.

An alarm clock

Alarms do not work in extreme cases of hypersomnia.

It can also occur in people with fibromyalgia or in people with brain damage.

  • Hypersomnia – what happens when you sleep, but not rest – BBC News World

When sleep is a recovery process for most people, for Taylor, "sleeping is nothing refreshing".

"It is as if I am under water and I try to come to the surface, it almost looks like torture."

"I just want to be left alone, I want to sleep," he says.

"It is very difficult to fight against the need to get enough sleep to get up and be able to function."


Types of hypersomnia

  • Recurring hypersomnia: rare. It occurs between 1 and 10 times a year.
  • Idiopathic (or primary) hypersomnia in prolonged sleep: excessive, constant and daily sleepiness for at least three months. The night's rest lasts about 12-14 hours. Great difficulty to wake up.
  • Idiopathic (or primary) hypersomnia with reduced sleep: Sleep lasts between 6 and 10 am. Patients may have difficulty with waking up from nighttime sleep and also from naps.
  • Insufficient sleep caused by behavior: voluntary, but not directly sought, derived from behavior that prevents the amount of sleep that is needed to maintain an adequate level of alertness and alertness.
  • Other types of hypersomnia: due to a medical illness (neurological diseases or metabolic disorders, among others), hypersomnia secondary to the consumption of drugs or drugs, and hypersomnia not because of mental disorders.

Source: Spanish association of narcolepsy and central hypersomnia

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