How to “Deal” with Narcolepsy: Part One, What IS this Narcolepsy Thing?

One of the narcolepsy support groups I am a member of reminded me of why I decided to write the series “How to ‘Deal’ With Narcolepsy.”  The member posted the following question:  Do you ever feel like everybody thinks narcolepsy is a joke and nobody really understands how embarrassing and frustrating it is?

The focus of Part One in the series seeks to provide information regarding the basics of narcolepsy, as well as a glimpse into the lives of those living with the disorder.  The mission of this post is to dispel myths and present factual information to reduce the embarrassment and frustration people with narcolepsy feel when interacting with others.  It will also educate those who interact with someone who has narcolepsy.  Before you can understand how narcolepsy impacts someone’s life, you’ve got to know the basics of the disorder.

The purpose of this post isn’t to share medical jargon.  It is to put narcolepsy into terms that the average person can understand.  If you’d like more technical information, I’d encourage you to visit www.narcolepsynetwork.org and the Stanford Center for Narcolepsy.

What is narcolepsy?

Narcolepsy is a neurological disorder that affects the control of sleep and wakefulness.    It is characterized by interruptions in regular patterns of REM sleep.  It is not a mental disorder.

A person with narcolepsy does not sleep in the same way as someone without a sleep disorder.  In a typical sleep cycle, the process of going through the entire cycle of stages takes about 90 minutes.  However, people with narcolepsy can enter REM sleep almost immediately, including during waking hours.  It is thought that people with narcolepsy sleep more than those without the disorder, but that is often not the case.  It simply means we sleep differently at different parts of the day, but it all adds up to be roughly the same number of hours. Those suffering from narcolepsy often spend too much of their sleep in light sleep and REM sleep and not enough time in the stages that promote restorative sleep, so an eight-hour stretch of sleep (IF it ever happens) is still not refreshing for someone with narcolepsy.   That is why people with narcolepsy feel tired even after a full night of sleep.

What are the symptoms of narcolepsy?

Because of irregular sleep cycles, people with narcolepsy often experience fragmented nighttime sleep, which leads to excessive daytime sleepiness – the primary symptom of narcolepsy.   The most effective way I have found to explain how the level of sleepiness of someone with narcolepsy compares to someone without narcolepsy is to have people think about how difficult it is to get through the day after a night of bad sleep or staying up too late.  It is hard!  The ability to concentrate on anything else except staying awake is gone.  Easy tasks seem to present themselves as some sort of foreign science.  Now, imagine feeling that every single day of your life and you might begin to understand just how frustrating it can be to live with narcolepsy.  The problem is further compounded because, unlike someone without narcolepsy, we can’t simply make up that debt of sleep by sleeping in the next day.  We are in a constant sleep debt, day in and day out.

Another symptom of narcolepsy is cataplexy – a sudden loss of transient muscle tone often triggered by emotion.  This symptom is even more difficult to explain to someone who has not experienced it for themselves.  Therefore, I often direct people to the videos on http://med.stanford.edu/school/Psychiatry/narcolepsy/moviedog.html

Cataplexy is considered by many to be the most severe side-effect since it can cause bumps, bruises, sprains, and even fractures.  It is also quite an embarrassing symptom.  As such, it is not uncommon for people with cataplexy to begin to socially isolate themselves.  In some cases, people with cataplexy may seem emotionally apathetic, meaning they learn not to let situations affect them emotionally so as not to have a cataplexy attack.

The severity levels of cataplexy can range from a slight weakness that isn’t perceptive to the untrained eye to a full body collapse.  Triggers for cataplexy attacks include: laughing at a joke, telling a joke, being embarrassed, orgasm, anger, frustration, and strenuous exercise.  Cataplexy is often mistaken for seizures or fainting, but it neither.

A person with cataplexy most likely has narcolepsy since there are very few conditions in which cataplexy are present.  However, not everyone with narcolepsy has cataplexy.

In addition to excessive daytime sleepiness, people with narcolepsy often suffer from disruptive nighttime sleep, automatic behavior, and sleep paralysis with hypnagogic or hypnopompic hallucinations.   Hypnagogic hallucinations occur as dreaming is beginning before the person is totally asleep.  If it occurs while waking, it is hypnopompic.  These dreams are usually very vivid and sometimes frightening.  As you can imagine, people with narcolepsy don’t always disclose this particular symptom for fear they will be viewed as having a mental disorder.

How is narcolepsy diagnosed?

Narcolepsy is diagnosed through a physical examination, questionnaires, and sleep studies.  For the sleep studies, an overnight polysomnograms (PSG) are scheduled to be followed up with a Multiple Sleep Latency Test (MSLT), which is the main diagnostic tool.  The MSLT is a series of four or five naps schedules two hours apart.  A diagnosis is confirmed if sleep occurs within 5 minutes with a REM onset period during at least two of the naps.

How is narcolepsy treated?

Day to day life for a person with narcolepsy can be a struggle, especially before diagnosis is made.  Sadly, there is often a difference of 10-15 years between symptom onset and diagnosis.  That’s a lot of years of living with being excruciatingly tired!  While there is no cure for narcolepsy, there are several medications available to help treat symptoms.  Lifestyle changes can also be beneficial.  However, even with medications, exercise, and proper sleep hygiene, symptoms seem to rarely go into remission for most people with narcolepsy.

Stimulants are among the most commonly prescribed medications for treating excessive daytime sleepiness.  Nuvigil, Provigil, Ritalin, and Adderal are just a few examples of stimulants doctors prescribe.

 Anti-Depressants are prescribed to treat cataplexy, hallucinations, and sleep paralysis.  Effexor, Strattera, and Venlafaxine are just a few examples of this type of medication.

REM-Suppressing medications – most notably Xyrem – are prescribed to treat excessive daytime sleepiness, cataplexy, hallucinations, and sleep paralysis.  While the potential for this drug seems great, it can be expensive.  Not all doctors will prescribe this medication because of potential side-effects.

In addition to medications, it is important to take good care of your health.  Maintaining good sleep hygiene is important.  People with narcolepsy should follow the same schedule of sleeping and waking whenever possible – even on weekends and vacations.  Exercise is also beneficial in improving energy levels, but the level of exercise will depend on severity if symptoms.  Please talk to your doctor before beginning any exercise program and make sure you’ve got some sort of medial ID, especially if you have cataplexy.

Narcolepsy is a lifelong disorder requiring patience and understanding, from both the patient and those who support them.   Stay tuned for part 2 on how to support a loved one with narcolepsy and part 3 on how to become an advocate for yourself if you have narcolepsy….

Comments

  1. shekinah419 says:

    Great post. I’m adding you to my blogroll. My blog touches on Narcolepsy and Cataplexy as oneaspect of my life, but it will not be the main focus, therefore I am happy to have found yours as a place to send my readers for more information.

  2. Matthew Vanderlip says:

    Hi there I read your webpage thank you I was diagnose with narcolepsy and then later found out I have cataplexy. and your information was right on.

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