Narcolepsy

Expert care for narcolepsy and excessive daytime sleepiness.

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Narcolepsy

1 in 2000 people have it. Its impact on a person’s life can be significant even disabling.

These are facts you might not know about narcolepsy, but your friends and neighbours who suffer from this sleep disorder know how serious an issue it is.

What is Narcolepsy?

Narcolepsy is a sleep disorder defined by constant sleepiness and a tendency to sleep at inappropriate times.

Typically, a person with narcolepsy suffers sleep attacks as well as continual sleepiness and a feeling of tiredness that is not completely relieved by any amount of sleep.

If not recognised and appropriately managed, narcolepsy can drastically and negatively affect the quality of a person’s life. Although a cure for narcolepsy has not yet been found, most people with this disorder can lead nearly normal lives under the proper treatment.

What cuses Narcolepsy?

Although the exact cause is not known, narcolepsy appears to be a disorder of the part of the brain that controls sleep and wakefulness. As a result, sleep or parts of sleep intrude into the times they are awake.

The symptom most easily understood is the sleepiness, which is just the brain being unable to control when the individual falls asleep. Other symptoms, such as cataplexy, hypnagogic hallucinations and sleep paralysis are similar to the loss of muscle tone of dreaming that accompanies a normal part of sleep called REM.

In people with narcolepsy, these events (the lack of muscle tone or the dream experiences) occur at inappropriate times while they are awake.

Narcolepsy is not caused by psychiatric or psychological problems. Recent studies have found low levels of a brain chemical called hypocretin in people with narcolepsy. Some researchers have suggested that a problem with the gene responsible for making hypocretin, combined with other factors in a person’s life, may cause the disorder.

What are the symptoms of Narcolepsy?

The four most common symptoms of narcolepsy are:

Excessive daytime sleepiness
Cataplexy (brief, sudden loss of muscle strength)
Sleep paralysis, and
Hypnagogic hallucinations

Exessesive daytime sleepiness

Daytime sleepiness is present in all narcoleptics and is usually the first symptom that appears. People with narcolepsy report feeling continually tired or sleepy all the time.

They tend to fall asleep not only in situations in which many people normally feel sleepy (after meals or during a dull lecture) but also when most people would remain awake (while having a conversation, writing a letter or watching a movie).

These “naps” tend to be short and may be refreshing, at least for a short period of time.

People with narcolepsy may become drowsy or feel foggy at very unusual times, even in dangerous situation such as while driving.

Cataplexy

Attacks of cataplexy – sudden, brief losses of muscle strength – are sometimes the first symptom of narcolepsy, but more often develop months or years after the onset of sleepiness.

Cataplexy can be mild – such as a brief feeling of weakness in the knees – or it may cause a complete physical collapse, resulting in a fall. A person having such an attack is fully awake and knows what is happening.

Cataplexy is usually triggered by strong emotion, such as laughter, anger or surprise. In some individuals, simply remembering or anticipating an emotional or anxiety producing situation can produce attacks.

Sleep Paralysis

Sleep paralysis is also a brief loss of muscle strength but it occurs when a person if falling asleep or waking up. The person may be somewhat aware of his or her surroundings, but is unable to move or speak.

Sleep paralysis can be frightening but is not dangerous since the muscles that maintain life (the main breathing muscles and the heart) are not affected.

Hypnagogic hallucinations

Hypnagogic hallucinations are vivid dreams that occur when a person is drowsy. The hallucinations may involve disturbing images or sounds such as of strange animals or prowlers.

These hallucinations may be frightening because the person is partly awake but has no control over the events. The dreams can also be upsetting if they are mistaken for hallucinations caused by mental illness.

Other symptoms of Narcolepsy

Automatic behaviours

Automatic behaviours are routine tasks performed by a person who is not aware of doing the activity. Sometimes a person may actually fall asleep and continue an activity but not remember it after waking up.

Automatic behaviours can be a symptom of narcolepsy and can be dangerous if a person is involved in a potentially hazardous activity such as driving or cooking.

Disturbed night time sleep

People with narcolepsy often have trouble staying asleep at night due to the brain’s inability to properly control waking and sleeping. In such cases their daytime sleepiness is made worse by the many night time awakenings.

Other symptoms

Other symptoms include:

double vision
an inability to concentrate
memory loss
headaches.
Children with this disorder are often unable to keep up with their friends or schoolwork
Adults may be unable to fulfil normal obligations relating to work or family.
Depression may develop
Sleep disorders such as sleep apnoea and periodic limb movement disorder occur more frequently in people with narcolepsy.

When to see a healthcare professional

If you experience any of the above symptoms, and they are impacting on your ability to drive, hold a job, stay in school, perform normal daily activities, or interfering with your social activities and personal relationships, it is important for you to see your healthcare professional.

How is Narcolepsy diagnosed?

Eliminate any other possible illnesses

The first step in diagnosing this disorder would be an evaluation by your healthcare professional to make sure that some other medical illness is not the cause.

Visit a sleep specialist at a sleep disorder centre

At a sleep disorders centre the specialist would thoroughly review your medical history and perform a complete physical examination.

If the specialist suspects narcolepsy you will usually be asked to undergo testing at the sleep centre.

Sleep testing

Two tests are commonly performed to confirm the diagnosis of narcolepsy and determine its severity:

Polysomnogram
Multiple Sleep Latency Test (MSLT)

Polysomnogram

During a polysomnogram, you would spend the night at the sleep centre in a comfortable and private room. Small electrodes placed on your skin record brain waves, muscle activity, heart rate and eye movements while other devices measure breathing. The procedure is painless and does not involve needles. This test is needed to determine whether you have other disorders that may be contributing to your symptoms.

Multiple sleep latency test (MSLT)

An MSLT is conducted the following day. With the electrodes still in place, you will be asked to take four or five 20 minute naps at two hour intervals.

The MSLT monitors how quickly you fall asleep and also your sleep pattern since people with narcolepsy frequently have REM (dreaming) sleep even during a brief nap.

Consequently, these two tests – together with your symptoms and sometimes a blood test call HLA typing – help the sleep specialist determine whether your symptoms are caused by narcolepsy or by another disorder that shares some of its features.

How is Narcolepsy treated?

Although narcolepsy cannot yet be cured, its symptoms can usually be controlled or improved so that sufferers experience symptoms less frequently and lead fairly normal lives.

If you are diagnosed with narcolepsy your treatment plan would likely have several parts

medication
behaviour treatment
management of your environment.

Over the counter medications containing caffeine usually do not work well for narcolepsy. However, prescription medications are available and can be effective in controlling excessive daytime sleepiness, cataplexy, hallucinations and sleep disruptions.

These medications include:

Stimulants like methylphenidate and dexamphetamines
Wakefulness-promoting agents like modafinil to control the sleepiness
Other medications that suppress the cataplexy, sleep paralysis and hypnagogic hallucinations.

You and your healthcare professional must work together to find the best balance between control of the symptoms and unwanted side effects of a drug.

Cognitive behaviour treatment

Treating your narcolepsy would probably require not only medication but also adjustments in your lifestyle. Following these suggestions may significantly improve your feeling of well being:

Follow a regular sleep/wake schedule. Go to bed and get up at approximately the same time each day. People with narcolepsy generally should not work night shifts or rotating shifts or inordinately long hours.
Regular short naps may be helpful since it is generally harder for people with narcolepsy to fall asleep within an hour or two after a nap.
Be cautious during activities that can be dangerous if you fall asleep or have an episode of cataplexy, such as driving or cooking. Try to plan your schedule so that you will be alert at these times.
Carefully follow your healthcare professional’s instructions regarding medications. Immediately inform him or her of any changes or problems with your medications.

Management of the environment

Narcolepsy can be difficult to manage if your family, acquaintances and co-workers do not understand the disorder. Daytime sleepiness may be mistaken for laziness, depression or lack of ability. The signs of cataplexy and dreaming during wakefulness may be mistakenly seen as a psychiatric problem.

If you have narcolepsy you and your healthcare professional can do the following:

Educate family members. Reassure your spouse or family members, who may have felt neglected for mistreated, that your behaviour is not willful or crazy. Family support is an important step in learning to cope with this disorder.
Let friends know about the disorder and give them this information to read.
Educate your employer about the disorder. Asking for certain accommodations at work can help you continue to be a productive employee.
Find a narcolepsy support group. Knowing that other individuals share this disorder can be reassuring.
If narcolepsy interferes with your ability to work, look into disability benefits that may be available.

Children with Narcolepsy

If your child suffers from narcolepsy make sure his or her teachers know about the disorder.

Small adjustments in the classroom can make a tremendous difference in terms of your child’s self esteem and ability to obtain a good education. Make certain that the teacher understands that narcolepsy can cause symptoms of inattention and hyperactivity.