What is narcolepsy? (A complete guide)

Narcolepsy is a sleep disorder that is characterized by excessive, uncontrollable daytime sleepiness. 

What is narcolepsy?

Narcolepsy is a chronic sleep disorder characterized by uncontrollable daytime drowsiness and sudden sleep attacks. People with narcolepsy can experience sudden loss of muscle tone, which is known as cataplexy. Cataplexy can sometimes be triggered by strong emotions. 

Unfortunately, there is no cure to date for narcolepsy, but medications are available to help and lifestyle changes can help manage the symptoms. 

Excessive daytime sleepiness is a sign of narcolepsy.

What are the signs and symptoms of narcolepsy? 

There are several symptoms of narcolepsy which might worsen for the first few years after diagnosis, but then plateau for the rest of the person’s life. 

These symptoms include the following:

·      excessive daytime sleepiness

·      sudden loss of muscle tone

·      sleep paralysis

·      changes in rapid eye movement (REM) sleep

·      hallucinations.

How is narcolepsy diagnosed?

A doctor may make a preliminary diagnosis of narcolepsy based on excessive daytime sleepiness and sudden loss of muscle tone (cataplexy). After an initial diagnosis, a doctor will probably refer a patient to a sleep specialist for further evaluation.

Formal diagnosis requires staying overnight at a sleep center for an in-depth sleep analysis by sleep specialists. Methods of diagnosing narcolepsy and determining its severity include:

·       Sleep history. The doctor will ask for a detailed sleep history. A part of the history involves filling out the Epworth Sleepiness Scale, which uses a series of short questions to gauge the degree of sleepiness. For instance, a patient indicates on a numbered scale how likely it is that they would doze off in certain situations, such as sitting down after lunch.

·       Sleep records. The patient may be asked to keep a detailed diary of their sleep pattern for a week or two, so the doctor can compare how the sleep pattern and alertness are related. Often, in addition to this sleep log, the doctor will ask the patient to wear an actigraph. This device has the look and feel of a wristwatch. It measures periods of activity and rest and provides an indirect measure of how and when sleep happens.

·       Polysomnography. This test measures a variety of signals during sleep using electrodes placed on a patient’s scalp. For this test, the patient must spend a night at a medical facility. The test measures the electrical activity of the brain (electroencephalogram) and heart (electrocardiogram) and the movement of the muscles (electromyogram) and eyes (electro-oculogram). It also monitors breathing.

·       Multiple sleep latency test. This examination measures how long it takes the patient to fall asleep during the day. The patient will be asked to take four or five naps, each nap two hours apart. Specialists will observe the resultant sleep patterns. People who have narcolepsy fall asleep easily and enter into rapid eye movement (REM) sleep quickly.

What are the causes of narcolepsy? 

Many cases of narcolepsy are thought to be caused by a lack of a brain chemical called hypocretin (also known as orexin), which regulates sleep. The deficiency is thought to be the result of the immune system mistakenly attacking parts of the brain that produce hypocretin.

A doctor will probably refer a patient to a sleep specialist for further evaluation.

What are the treatments for narcolepsy? 

Narcolepsy cannot be ‘cured’ as such, but medications can help with symptoms, these include:

·       Stimulants. Drugs that stimulate the central nervous system are the primary treatment to help people with narcolepsy stay awake during the day. Doctors often try modafinil (Provigil) or armodafinil (Nuvigil) first. Modafinil and armodafinil aren’t as addictive as older stimulants and don’t produce the highs and lows often associated with older stimulants. Side effects are uncommon, but may include headache, nausea or anxiety.

Some people need treatment with methylphenidate (Aptensio XR, Concerta, Ritalin, others) or various amphetamines. These medications are very effective but can be addictive. They may cause side effects such as nervousness and heart palpitations.

·       Selective serotonin reuptake inhibitors (SSRIs) or serotonin and norepinephrine reuptake inhibitors (SNRIs). Doctors often prescribe these medications, which suppress REM sleep, to help alleviate the symptoms of cataplexy, hypnagogic hallucinations and sleep paralysis. They include fluoxetine (Prozac, Sarafem, Selfemra) and venlafaxine (Effexor XR). Side effects can include weight gain, insomnia and digestive problems.

·       Tricyclic antidepressants. These older antidepressants, such as protriptyline (Vivactil), imipramine (Tofranil) and clomipramine (Anafranil), are effective for cataplexy, but many people complain of side effects, such as dry mouth and lightheadedness.

·       Sodium oxybate (Xyrem). This medication is highly effective for cataplexy. Sodium oxybate helps to improve nighttime sleep, which is often poor in narcolepsy. In high doses it may also help control daytime sleepiness. It must be taken in two doses, one at bedtime and one up to four hours later.

Xyrem can have side effects, such as nausea, bed-wetting and worsening of sleepwalking. Taking sodium oxybate together with other sleeping medications, narcotic pain relievers or alcohol can lead to difficulty breathing, coma and death.

Is there treatment for narcolepsy alongside medication?

Narcolepsy is usually treated with behavioral strategies plus carefully chosen medications. Behavioral strategies include taking daytime naps and staying active. These lifestyle changes can include good sleep habits, napping, knowing how to stay alert, and developing self-awareness.

Maintain good sleep habits. Keep a regular bedtime, make your room cool and dark (use darkening shades or curtains, remove any electronic devices from your room, and use ear plugs if necessary), and avoid heavy meals or alcohol before bed. If you can’t sleep in the middle of the night, leave your bed to read a book or do another non-stimulating activity until you feel drowsy again. Do not look at your cell phone, computer or other electronic screen during the night.

Take smart naps. Strategic naps can help people with narcolepsy feel refreshed and productive. The best naps are 15-20 minutes and spaced throughout the day, without happening too close to bedtime. The point in the day when people often feel most sleepy is 2:00 – 3:00 p.m. If it’s appropriate, find a place to nap at work and explain your condition to your co-workers. Napping can increase your work productivity.

Get to know your triggers, and stay active.

Stay active. Sitting for long periods of time can increase sleepiness. Stand up and take walks, go outside, sit near a window or in the back of class so you can stand up periodically. If you can use an adjustable standing desk, or a yoga ball to sit on, this may help you stay alert.

Get to know your triggers. What are the factors that cause you to be most drowsy? Consider time of day, activities, temperature, and light. Are you more likely to experience cataplexy when you’re very tired or during a strong emotion? It helps to know your triggers and manage them so you feel more in control.

Seek counseling. You don’t have to do this alone. Counseling is an important aspect of narcolepsy treatment. Talk to an individual therapist and/or join a support group (whether online or in person). Anxiety, isolation, or self-esteem issues can arise because of narcolepsy symptoms and talking about this with others helps you learn, take control, and not feel alone.

Frequently asked questions (FAQs) about narcolepsy: 

1.    What triggers narcolepsy?

Narcolepsy is thought to be caused by deficiencies in hypocretin, which is a chemical naturally produced in the brain. Hypocretin regulates sleep and wakefulness. It has been hypothesized that the immune system mistakenly attacks the areas of the brain that produce hypocretin. 

2.    Can you die from narcolepsy?

Narcolepsy is not a fatal disease by itself, however, the sudden sleep attacks and sudden loss of muscle tone or cataplexy can lead to car accidents, injuries, or other life-threatening situations.

3.    Can I drive if I have narcolepsy?

This depends from locale to locale. When sleepiness is under good control, many people with narcolepsy are safe to drive. However, they must know their limits. Some individuals may be safe driving around town for 30 minutes but not on a four-hour, boring highway drive.

Many people with narcolepsy can drive, but must know their limits.

4.    What are the five signs of narcolepsy?

·      an uncontrollable urge to sleep, often at inappropriate times

·      weak muscles e.g. knee buckle or eye droop with strong emotions like laughing

·      poor quality sleep at night

·      feeling unable to speak or move when falling asleep or waking up

·      vivid, often scary, dreamlike experiences when falling asleep or waking up.

5.    Do narcoleptics know when they fall asleep?

People with narcolepsy fall asleep without warning, anywhere, anytime. For example, you may be working or talking with friends and suddenly you nod off, sleeping for a few minutes up to a half-hour. When you awaken, you feel refreshed, but eventually you get sleepy again.

6.    Can narcoleptics fight sleep?

It’s actually a chronic brain disorder. People with narcolepsy have poorly regulated sleep-wake cycles, so they experience sudden and involuntary attacks of daytime sleepiness—whether for a few seconds or minutes—and often aren’t able to resist the urge to sleep.

7.    How do doctors test for narcolepsy?

A narcolepsy diagnosis requires several tests. A doctor will perform a physical exam and an in-depth medical history to rule out other causes of symptoms. … Two tests that are considered essential in confirming a diagnosis of narcolepsy are the polysomnogram (PSG) and the multiple sleep latency test (MSLT).

8.    Does coffee help with narcolepsy?

Some people with narcolepsy find coffee or other caffeinated beverages helpful to staying awake. For others, coffee is ineffective, or, in combination with stimulant medications, it can cause jitteriness, diarrhea, anxiety, or a racing heart.

9.     What is Type 2 narcolepsy? 

Type 2 narcolepsy (previously termed narcolepsy without cataplexy). People with this condition experience excessive daytime sleepiness but usually do not have muscle weakness triggered by emotions. They usually also have less severe symptoms and have normal levels of the brain hormone hypocretin.

10.                  Is narcolepsy genetic?

Although there are rare families where narcolepsy is passed on through several generations, most cases of narcolepsy occur at random rather than being inherited. The likelihood of developing narcolepsy is influenced by proteins known as histocompatibility leukocyte antigens (HLA).

For further reading on narcolepsy try these books:

Wide Awake and Dreaming: A Memoir of Narcolepsy

Julie Flygare was on an ambitious path to success, entering law school at age 22, when narcolepsy destroyed the neurological boundaries between dreaming and reality in her brain. She faced terrifying hallucinations, paralysis, and excruciating sleepiness, aspects of dream sleep taking place while wide awake. 

Yet, narcolepsy was a wake-up call for Julie. Her illness propelled her onto a journey she never imagined, from lying paralyzed on her apartment floor to dancing euphorically at a nightclub; from the classrooms of Harvard Medical School to the start line of the Boston Marathon. 

Winner of the San Francisco Book Festival Award for Biography/Autobiography, Wide Awake and Dreaming is a revealing first-hand account of dreams gone wrong with narcolepsy.

Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night

When Henry Nicholls was twenty-one, he was diagnosed with narcolepsy: a medical disorder causing him to fall asleep with no warning. For the healthy but overworked majority, this might sound like an enviable condition, but for Henry, the inability to stay awake is profoundly disabling, especially as it is accompanied by mysterious collapses called cataplexy, poor night-time sleep, hallucinations and sleep paralysis. A writer and biologist, Nicholls explores the science of disordered sleep, discovering that around half of us will experience some kind of sleep dysfunction in our lives. From a CBT course to tackle insomnia to a colony of narcoleptic Dobermans, his journey takes him through the half-lit world of sleep to genuine revelations about his own life and health.

Narcolepsy: A Funny Disorder That’s No Laughing Matter

This book provides accurate facts about all aspects of narcolepsy, a little-known neurological sleep disorder. It is estimated that 150,000-250,000 people in the U.S. have narcolepsy, but most of those have not yet been diagnosed. In the past, patients have seen an average of five or more physicians over a decade or longer before receiving a correct diagnosis of narcolepsy.

40 Winks: A Narcoleptic’s Journey Through Sleep, Dreams & Spirituality

40 Winks takes readers on a journey into the mind of a narcoleptic. The reader not only sees the hardships of daily life, but also experiences the fears and thrills of nightmares, lucid dreaming, sleep paralysis and after death communication. With her many experiences in the REM/wake mixed state of consciousness and with an education in Polysomnography, the author provides evidence to bridge the gap between medical advances in sleep and neurology and spiritual teachings of the afterlife. We all have a connection to those in the spirit world, and through REM, we open a direct line of communication. 40 Winks offers affirmation to those who may be questioning their own dream experiences as coincidence or being “just a dream.”

References:

Narcolepsy – Overview – NHS UK – May 2019

Narcolepsy – Mayo Clinic – January 2020

Narcolepsy – WebMD – December 2019

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