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Narcolepsy

Narcolepsy is a chronic condition that results in disruption to normal sleep patterns, causing someone to fall asleep at unpredictable times. It also stops the brain from being able to regulate sleep properly.

  1. Symptoms include persistent daytime sleepiness and chronic fatigue
  2. Caused by a lack of the chemical hypocretin
  3. Treatment involves minimising the impact of symptoms

Narcolepsy can be a very disruptive and distressing condition. If you want to talk to someone about narcolepsy symptoms and how you can manage them, our doctors can help.

Narcolepsy
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Description

Narcolepsy is a neurological condition where regular sleep patterns are disturbed, which leads to excessive sleepiness. It may or may not include cataplexy (loss of consciousness triggered by an emotional response) and sleep attacks. Narcolepsy can also be associated with sleep paralysis, which is the inability to move whilst falling asleep, excessive dreaming and frequently waking up during the night.

Currently, the exact cause of narcolepsy is unknown. However there are a couple of theories relating to genetics and autoimmunity. Many people (thought to be around 40%) who have narcolepsy have a specific version of the human leukocyte antigen (HLA). The other theory is that it is caused by an autoimmune reaction, which leads to a hypocretin insufficiency (hypocretin helps the body to know when to sleep and when to be awake).

People with narcolepsy do not actually sleep any less time on average than people without narcolepsy. The difference is that sleep is far more fragmented. It is thought that most of this is down to the process of entering REM sleep, so people with narcolepsy enter REM sleep much quicker. One study claims that problems associated with narcolepsy such as cataplexy and EDS could be due to REM functioning when the body is awake.

Narcolepsy is a relatively common condition. In Europe and the US, the prevalence is around 0.2 to 2 people per 1,000. It typically presents itself in adolescence, and studies have shown that there are more males with narcolepsy than females. There is a higher risk of developing the condition in those who have a first-degree relative with it.

Cataplexy and sleep paralysis are common occurrences for people with narcolepsy. Cataplexy is the complete involuntary relaxing of the muscles whilst remaining conscious. It is triggered by an emotional response to something such as laughter, excitement or anger, and is present in around 70% of narcolepsy cases. The severity can vary from a slight weakening of the facial muscles to a complete bodily collapse. Sleep paralysis only affects around a third of people with narcolepsy, and occurs in the state of awakening or falling asleep where someone cannot move their body or eyes. It can also cause a sensation resembling an inability to breathe.

Psychological complications of narcolepsy are related to the tiredness that it causes. Daytime sleepiness can have a severe impact on home, work and social life because of poor concentration and memory loss. There is also a higher risk of obesity and metabolic syndromes in people with narcolepsy, which can be attributed to an increased propensity to binge eat.

Page last reviewed:  29/04/2020
Diagnosis and treatment

What are the causes of narcolepsy?

There are several different theories about the cause of narcolepsy, but its root cause is not yet fully understood. The two most commonly suggested theories are genetic disposition, and an insufficient level of hypocretin caused by an autoimmune reaction. 

How is narcolepsy diagnosed?

Diagnosis of narcolepsy is based on a combination of patient history and an analysis of sleep patterns. Narcolepsy can either be with or without cataplexy, which is a supplementary condition where the body has a sudden muscle collapse due to an emotional response, such as laughter. 

Almost all people with narcolepsy will experience daytime sleepiness and have chronic fatigue, which can be measured using the Epworth Sleepiness Scale (ESS). Sleep attacks (a propensity to fall asleep randomly throughout the day regardless of the activity) are also very common. These can last for a few minutes to an hour.

Will I need tests?

Aside from diagnostic factors, it is possible that a doctor may want to perform some tests. This will usually be a polysomnography (PSG) and a multiple latency test (MLT). The PSG test will be able to assess the sleep quality and any potential causes of daytime sleepiness such as sleep apnoea, rapid eye movement disorder and limb movement. The sleep latency test is used to measure the time between the start of a nap during the day and the period at which sleep begins.

How is narcolepsy managed?

Narcolepsy is mostly treated without medication, which is only used to relieve daytime sleepiness. A doctor is likely to recommend formulating a sleep plan, to ensure that sleep hygiene is maintained and that daytime sleepiness is eliminated. This could include the introduction of scheduled naps, which can improve cognitive function if limited to around 30 minutes. Other helpful lifestyle measures may include not smoking, avoiding alcohol and caffeine and keeping your bedroom at a comfortable temperature and ambience.

It’s also important to exercise regularly, as this can encourage the body to get into a better pattern of being ready to sleep at more suitable times. Furthermore, telling family members and others that you have the condition is important, so that they can help in the event of sleep attacks or cataplexy.

Medications may help to reduce the effects of excessive daytime sleepiness (EDS). There are several stimulants available. For example, modafinil can help to improve cognitive function, although caution is advised as it can have harmful side effects if used inappropriately. 

Page last reviewed:  29/04/2020
Questions and Answers

How is narcolepsy treated?

Narcolepsy is treated mostly via non-pharmacological means. A doctor will suggest various lifestyle adjustments that may be required, as well as general sleep hygiene techniques. For example, keeping a strict sleep schedule and napping for an appropriate amount of time. 

There are also stimulants that can be taken to help with EDS.

How long will it take for me to recover?

Narcolepsy is a lifetime condition that leads to daily impairments of EDS or episodes of cataplexy in nearly half of people with the condition. Although daytime sleepiness can be combated with lifestyle adjustments and strict sleep hygiene, it is a difficult symptom to completely eradicate. 

Can I consult a doctor about narcolepsy online?

You can use our consultation service if you would like to speak to a UK doctor online about narcolepsy. The service enables you to book an appointment at a suitable time for you and discuss your symptoms with a doctor, who can suggest ways to manage them. They will also be able to refer you to a sleep centre in order to conduct some tests, should you need a diagnosis.

Page last reviewed:  29/04/2020

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