Narcolepsy

About

Narcolepsy

What is narcolepsy?

A sleep disorder marked by persistent sleep attacks and daytime drowsiness, narcolepsy is estimated to affect 1 in every 2,000 Americans. This sleep disorder can severely disrupt an individual’s life. It is also sometimes accompanied by cataplexy, a condition in which a strong emotion causes a collapse in muscle tone, affecting the body. Therefore, medical professionals have identified two kinds of different narcolepsy: type 1 narcolepsy occurs with cataplexy, while type 2 narcolepsy occurs without it.

Causes

What causes narcolepsy?

The exact causes of narcolepsy remain a mystery. One sign of narcolepsy is low levels of hypocretin in the brain, which could be due to an autoimmune reaction. Genetics may also play a role in narcolepsy, but the risk level of transmitting the condition from parent to child is rather low, at around only 1%. Males and females are affected at the same rate.

Who does narcolepsy affect?

Besides the possible genetic linkage, there are only a few known risk factors of narcolepsy, which are:

  • Age: Narcolepsy typically develops in an individual between the ages of 10 and 30. 
  • Family history: If you have a family history of narcolepsy, your risk of developing the condition is 20 to 40 times higher than average.

Can narcolepsy develop later in life?

While it’s certainly most common for narcoleptic symptoms to develop in childhood, adolescence, and early adulthood, the onset of narcolepsy can occur at any time. Due to frequent misdiagnoses and a misunderstanding of the condition, many people are officially diagnosed years after they first develop narcolepsy.

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Symptoms

What are the symptoms of narcolepsy?

The symptoms of narcolepsy may be most apparent immediately following the condition’s onset and then may taper off after a few years. However, this is subject to change from individual to individual. Some of the most commonly experienced symptoms of narcolepsy include:

  • Cataplexy: Those with type 1 narcolepsy also experience cataplexy, which is an abrupt loss of muscle tone. Cataplexy attacks can range from mild to severe - examples include a slack jaw or a complete full-body collapse. Episodes are usually induced by intense emotions, frequently positive ones, although negative emotions can trigger episodes as well. The frequency of these episodes varies widely from case to case. 
  • Daytime fatigue: Those with narcolepsy can fall asleep anywhere, with no prior warning. Excessive sleepiness during the day makes it difficult to function properly and is one of the first and most widespread signs of narcolepsy.
  • Sleep paralysis: While not everyone who experiences sleep paralysis has narcolepsy, it is a common experience among those diagnosed with the condition. Sleep paralysis usually involves an inability to move or speak upon first waking in the morning or while falling asleep. Even though episodes are generally brief, they can be frightening for some individuals.
  • Hallucinations: Sometimes, while waking up or falling asleep, people with narcolepsy experience hallucinations. Because the person is not fully asleep, they may experience dreams as reality, which may be scary.
  • Alterations in rapid eye movement (REM) cycles: REM is when a person’s deep sleep occurs and when most dreaming happens. Those experiencing narcolepsy transition very quickly to REM sleep, altering their sleep cycles.
  • Other conditions: It’s also fairly common for people diagnosed with narcolepsy to suffer from other sleep disorders, such as insomnia, restless leg, or obstructive sleep apnea.

Is narcolepsy dangerous?

Yes, it’s possible for narcolepsy to be dangerous. Some people with narcolepsy experience attacks while performing automatic actions, such as driving or writing, and may continue to perform these actions for the duration of an episode. When they awake, however, they’ve rarely performed the task at hand well.

As you can tell, this behavior is risky. If you experience an episode while driving, you’re much more likely to get into a car accident. Another example of a common daily activity that becomes dangerous with narcolepsy is cooking, as it involves working with heat and sharp objects. It’s important to properly understand and manage your condition in order to protect yourself and those around you.

Diagnosis

How is narcolepsy diagnosed?

While over 200,000 Americans are impacted by narcolepsy, it is estimated that only a quarter of those who experience the disorder seek and receive treatment. For those who do seek treatment, they may be misdiagnosed because some of its symptoms overlap with other conditions. That’s a big part of the reason that the average time period between development and diagnosis of narcolepsy is seven years.

As an example, fatigue and other common symptoms of narcolepsy can often be mistaken for depression and insomnia. That’s why it’s essential to undergo a proper diagnosis process involving a sleep study. Through a series of diagnostic tests, your doctor will be able to determine whether or not you suffer from narcolepsy.

Treatment

What treatments are there for narcolepsy?

Depending on your case, there are several treatment options to choose from. Speak with your medical professional to determine which combination may be most beneficial to you. The most common forms of treatment and management for narcolepsy are:

  • Medications: Medications, such as stimulants and antidepressants, may be useful in helping you stay awake during the day and improve nighttime sleep. They can also help relieve the symptoms of cataplexy, hallucinations, or sleep paralysis.
  • Lifestyle changes: There are also some simple steps you can take at home to help better manage your narcoleptic symptoms. These changes include cutting out drugs and alcohol, exercising regularly, establishing a sleep schedule and routine, and taking naps throughout the day if possible.
  • Build a support network: By visiting a medical professional, you’ve already taken the first step to managing your narcolepsy. However, it’s also important to communicate your diagnosis to those around you, including your school, workplace, friends, partners, and family members. Under the Americans with Disabilities Act (ADA), your workplace is required to provide you with reasonable accommodation for your condition.

Can narcolepsy be cured?

There is no cure for narcolepsy, but medication and lifestyle changes can allow you to better manage symptoms. With help from a medical professional, you may be able to resume the daily activities you love.

Information

Medically reviewed by:

Dr Roy Kedem, MD

Dr Zenon Andreou studied medicine at University College London, graduating in 2006. His postgraduate training was in hospitals in and around London and he trained for four years in Otolaryngology before completing his training in General practice

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