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Notes on Narcolepsy

Separating Fact from Fiction

I recently attended the “SLEEP 2012” meeting in Boston. SLEEP is one of the biggest meetings of sleep professionals in the world, bringing together people from all different aspects of sleep medicine including (for example) MDs, PhDs, nurses, respiratory technicians, medical researchers, pharmaceutical company representatives, medical equipment vendors, and patient advocacy groups. The conference got me excited about new, up and coming areas of sleep research with hopes that this research will translate to even better treatment options for patients suffering from various sleep disorders.

While at SLEEP, I sat in on a talk about recent advances in narcolepsy research and treatment. The talk was excellent, informative and thorough. I then returned to my sleep practice in NYC and saw two patients with narcolepsy back-to-back, each of whom had a rough time getting properly diagnosed for nearly 15 years. This got me thinking about just how misunderstood narcolepsy is to the general public. Most people don’t know what narcolepsy is, and if they have an idea, it usually is quite stigmatized and drastic (for example, falling asleep constantly while talking with someone).

The symptoms of narcolepsy can be confusing to those who are unfamiliar with the official diagnostic criteria. Patients suffering from narcolepsy are commonly misdiagnosed with a myriad of medical issues, including psychiatric problems like depression, bipolar disorder, or even schizophrenia. They usually go through many medical tests before going to a sleep center for an evaluation. Many patients can go 10-15 years before getting a proper diagnosis. If not properly recognized, narcolepsy can have many negative repercussions on one’s life.

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What is narcolepsy?

Narcolepsy is actually just as common as Multiple Sclerosis, affecting 1 in every 2,000 people. It is a sleep disorder characterized by constant daytime sleepiness as well as a tendency to sleep at inappropriate times. The sleepiness is generally not relieved by sleep (though naps can be refreshing for short periods of time).

What are the symptoms of narcolepsy?

The symptoms of narcolepsy can appear all at once or slowly develop over time.

1. Excessive Daytime Sleepiness (EDS). EDS is present in every patient with narcolepsy, and it is usually the first symptom that appears. EDS is present during both “normal” times when most people tend to become sleepy (such as in sedentary situations) but also at times when most people would stay awake (such as while talking to someone). Narcolepsy patients may even become drowsy during dangerous situations such as driving or operating heavy machinery.

2. Cataplexy. Cataplexy affects nearly 50% of narcolepsy patients. It sometimes appears as the initial symptom and may change in severity over time. It is a sudden, short loss of muscle strength that is usually triggered by strong emotion such as anger, surprise, or even laughter. Cataplexy can range in severity from mild (brief weakness in the face or knees) to severe (resulting in a complete physical collapse). For some, even the memory of an event that is highly emotional can lead to an attack.

3. Hypnagogic hallucinations (HH). HH are vivid dreams/images that occur when a person is drowsy (especially while falling asleep or waking up). HH content varies from person to person, but can involve disturbing images and/or sound. Typically, the person is partly awake but has no ability to control the hallucination. As hallucinations are also seen in various mental illnesses, patients with narcolepsy who report HH may sometimes be misdiagnosed as having a psychiatric illness.

4. Sleep paralysis (SP). SP is also a very brief loss of muscle tone, but it happens when someone is falling asleep or waking up. It can be very alarming to the patient, as the person may mentally be awake but his or her body is unable to move or speak. It is not harmful (in fact, many people who are “normal sleepers” may report having had an episode of SP), but if you have SP along with other symptoms noted here (or it is repeatedly occurring), you should be evaluated at a sleep center.

5. Disturbed nighttime sleep. Despite being excessively sleepy during the daytime, many narcolepsy patients also report having trouble staying asleep throughout the night. Their sleep is commonly reported as broken up and non-restorative.

6. Automatic behaviors. Although not as common as the above symptoms, some patients may report performing habitual tasks while not being fully aware of it at the time. Sometimes, the patient may even fall asleep and continue an activity. This can be particularly dangerous if engaged in an activity such as driving or cooking.

7. Other symptoms. Narcolepsy patients may also report problems with attention/concentration/memory, occasional double vision, headaches and trouble losing weight. They often have other sleep disorders such as sleep apnea. Sleepiness may then negatively impact the ability to fulfill school, work or social obligations. Narcolepsy patients can develop in some as a result of social and occupational troubles. Some patients with narcolepsy may be labeled “lazy” or “unmotivated” because of their sleepiness, further worsening their mood.

In my next post, I will address current thought on what causes narcolepsy, what can be done about it, and when should someone seek help. Check back soon!

Shelby Harris, Psy.D., is a clinical psychologist and Director of the Behavioral Sleep Medicine Program at Montefiore Medical Center.

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