Narcolepsy is a term many people have heard, but few understand what it is and the implications it can have on a person’s daily life. It impacts 200,000 Americans, but only 25 percent of people know they have it and receive treatment. In order to help loved ones who may not realize they have this or to help yourself come to an understanding of this condition, take a moment to learn what it is and the different ways it manifests.
What is Narcolepsy?
It is a sleep disorder and neurological condition that prevents the brain from regulating sleep patterns. It affects males and females at the same rate, although women are often diagnosed much later.1 It peaks during the 2nd and 3rd decade of a person’s life. A basic definition of what happens to a person with narcolepsy is they incur a sudden attack of sleep which can also be shown as hallucinations or a loss of muscle tone. There are two different types of narcolepsy:
Type 1: Excessive sleepiness with cataplexy
This is when extreme sleepiness occurs during the day. Cataplexy occurs when there is a loss of muscle tone in the body, triggered by a pleasant emotion. A laugh or simple burst of excitement can trigger this response. It can be alarming to those around the person experiencing it because it can come without warning and in extreme cases, can last for several minutes. It can appear as a total weakness in the face, arms, legs or trunk. Type 1 is better understood and recognized by medical professionals.
Type 2: Excessive sleepiness without cataplexy
Although less recognized by medical professionals, many people with narcolepsy have Type 2. They have no muscle weakness triggered by emotions. Their side effects are generally less severe. It is often caused by an injury, not due to inadequate hormone levels like Type 1.
While the major symptom or marker for narcolepsy is excessive daytime sleepiness, there is more to the story and many symptoms that can go unnoticed or not show at all.
- Cataplexy: As aforementioned, cataplexy does not impact everyone with narcolepsy. However, it is often the first symptom to show. At the least, they demonstrate signs of mild weakness in muscles, like droopy eyelids. In extreme cases, it can present as an extreme collapse and inability to speak that many confuse for a seizure.
- Hypnotic Hallucinations: Hypnotic hallucinations are similar to dreams in that they occur as one is falling asleep or waking up. They are not asleep while these occur. They are extremely detailed and for that reason can be frightening, especially to children2. Because of the low rate of narcolepsy, some patients with these symptoms are treated for issues like depression instead of narcolepsy3.
- Sleep Paralysis: This is when an individual has the complete inability to move when they fall asleep or wake up. They are often unable to speak. At the longest, this lasts for a few minutes while the person is awake.
- Sleep Attacks: When an individual is sleepy or falls asleep and cannot resist it, it is known as a sleep attack. It is a literal attack on the ability to stay awake, no matter what is happening.
- Asymptomatic: A person may have narcolepsy, without any of these symptoms. However, a narcoleptic individual will always display signs of excessive sleepiness.
What Causes Narcolepsy?
Injury: The seriousness of a brain injury is well known. Although this cause is very rare, injury to the brain may result in a sleep disorder like narcolepsy. When the region of the brain that regulates sleep is altered or damaged, it can create sleep disturbances.
Hormonal: The hormone that helps you sleep is called Hypocretin. It is a naturally occurring chemical in the brain that regulates your sleep cycles. A lack of this hormone may be the cause of the disorder, but more research needs to be done to understand what all can impact this hormone.
Genetics: Genetics and narcolepsy can be complex. Some have no family history of the disorder, however, there are recurring cases where the gene HALDQB10602 is strongly correlated with narcolepsy. As many as 90% of people with narcolepsy have this gene. It’s important to note that even if this gene is not present, they could still have the disease.
Narcolepsy significantly impacts day to day life. Not knowing when you will suddenly fall asleep can be dangerous to those around you, especially when driving. In order to get diagnosed, a person needs to undergo overnight sleep testing (polysomnography). They will then need to follow up with a day time sleep test. Diagnoses are incomplete if this is not done because narcolepsy affects most people in the day. For this reason, analysis needs to be done in the day and night.
The daytime test is called a Multiple Sleep Latency Test (MSLT). It consists of five napping opportunities that are monitored for 20 minutes every 2 hours. During the evaluation, sleep specialists look to see the rate at which an individual falls asleep and the quality of the REM cycle. A marker for narcolepsy is if the patient falls asleep in less than 8 minutes and have REMs in 2 naps.
Narcolepsy can greatly affect your quality of life and may even put you or others in danger. If you fit these symptoms or think you may have narcolepsy, it may be a good time to consult a doctor for a sleep test and contact us for testing today.
1) The Impact of Gender on Timeliness of Narcolepsy Diagnosis
Christine Won, Mandana Mahmoudi, Li Qin, Taylor Purvis, Aditi Mathur, Vahid Mohsenin
J Clin Sleep Med. 2014 Jan 15; 10(1): 89–95. Published online 2014 Jan 15. doi: 10.5664/jcsm.3370
2) Plazzi G, Pizza F, Palaia V, Franceschini C, Poli F, Moghadam KK, Cortelli P, Nobili L, Bruni O, Dauvilliers Y, Lin L, Edwards MJ, Mignot E, Bhatia KP. Complex movement disorders at disease onset in childhood narcolepsy with cataplexy. Brain 2011; 134:3480–92.
3) Narcolepsy in Adolescence—A Missed Diagnosis: A Case Report
Anoop K. Gupta, MBBS, Swapnajeet Sahoo, MD, and Sandeep Grover, MD. Innov Clin Neurosci. 2017 Jul-Aug; 14(7-8): 20–23.