Narcolepsy: Understanding the Sleep Disorder and Its Impact

One will agree with the fact that getting a night of proper sleep is as important for functioning as is exercise and maintaining a healthy diet. Sleep helps in reducing stress and being active during the day. But how does our body understand that it is time to rest and sleep, is it a natural process or are there some changes or secretions in our body that help facilitate sleep? In fact, we spend 1/3rd of our life sleeping, and to help this process our brain contains hormones and special chemicals like hypocretin (orexin) to naturally facilitate a good night’s sleep. But in every 1 out of 2000 individuals, the secretion of this chemical is hindered, which inhibits the natural cycle of sleep and wakefulness. This neurological disorder is called Narcolepsy and people suffering from this disorder experience intermittent and uncontrollable episodes of excessive daytime sleepiness. These sudden sleep attacks may occur during any type of activity at any time during the day. Some patients with narcolepsy experience sudden muscle weakness with laughter, anger, or other strong emotions. It was originally coined by Jean-Baptiste-Edouard Gélineau a French physician who joined the Greek words narke (numbness or stupor) and lepsis (attack) It was one of the first and primary sleep disorder to be identified and described with symptoms.

Symptoms of Narcolepsy:-

1. Excessive daytime sleepiness (EDS)
2. Cataplexy
3. Fragmented sleep
4. Sleep paralysis
5. Hypnagogic hallucinations (brief hallucinations that take place as you’re falling asleep)
6. Weight gain and obstructive apnea.

EDS is one of the 1st symptoms to appear which results in the person taking repeated naps or falling into lapses of sleep which leads to difficulty staying awake and being alert during the majority of the day and this can lead to psychosocial problems. The naps can be short and refreshing but can vary in severity and timing and its repetitive pattern makes it hard to distinguish it from other disorders.

Cataplexy can be defined as, “sudden loss of muscle tone that occurs most often in the knees, face, and neck.” These episodes of muscle weakness usually are provoked by strong emotions such as laughter or anger. A mild occurrence may lead a person’s head to drop or knees to buckle. A severe episode may cause his or her legs to give out and may also lead the body to collapse. These episodes are usually brief, tending to last only for a few seconds or minutes although recovery is immediate.

Narcolepsy can be of 2 types:-

1. Narcolepsy I (with cataplexy)
2. Narcolepsy II (without cataplexy).

Sleep paralysis is usually brief and it occurs when a person is unable to speak or move as they fall asleep or wake up. Hallucinations experienced by people having narcolepsy are very vivid in their perceptual experiences and occur as soon as the person falls asleep and enters the REM sleep (the rapid eye moment stage-this is the stage where dreams are formed and experienced). People with narcolepsy may also have a problem frequently waking up at night and experiencing bouts of sleep.

Causes of Narcolepsy can range from genetic inheritance to chemical imbalance in the brain. In most cases the part of the brain which controls falling asleep functions abnormally. During the day when normally awake and active, one might fall asleep with little warning, rapidly moving into REM sleep. During normal REM sleep, there is both dreaming and temporary loss of muscle tone but for people suffering from Narcolepsy, REM sleep might lead to vivid hallucinations, cataplexy, and sleep paralysis. Hypocretin a chemical in the brain is responsible for preventing REM sleep from occurring at the wrong times and helping the body to be awake and active during the day but in a maximum of narcolepsy cases hypocretin cells die as the body mistakenly attacks it thus affecting one’s natural sleep and wake cycle. REM sleep can become so poorly regulated that the paralysis or dreaming that normally occurs only in REM sleep can mix into wakefulness, causing cataplexy and dreamlike hallucinations. Some conditions that can result in narcolepsy include traumatic brain injury, tumors, and strokes.

In majority of the cases, diagnosis of narcolepsy is often late or delayed and this leads to delays in further treatment of the disorder. Onset may be gradual or sudden which can range from childhood to almost 50 years of age (peak age is either 15 or 36). Often, sleepiness is termed as lack of motivation or laziness. People do often report feeling tired after an attack and this constant sleepiness hampers their ability to work and learn thus contributing more to the term ‘laziness’. If one is affected by unexplained sleepiness during the day, they should consult their doctors or sleep specialists. Usually, to diagnose narcolepsy, a Multiple Latency test is conducted wherein 2 things need to be verified, first is, the time taken by the person to fall asleep and whether or not the person attains REM sleep as soon as asleep (usually REM sleep is attained after 90 minutes in normally functioning sleep-wake cycles) According to experts in this field if one is experiencing cataplexy like symptoms (that is a sudden loss of muscle tone) then it shouldn’t be ignored and one should be testing for Narcolepsy right away. Other tests include measuring CSF Hypocretin levels or doing an Actigraphy where the patient has to wear a bracelet that measures sleep-wake patterns

There is no definite cure for Narcoplexy but its symptoms can be controlled by medications and some lifestyle changes. Stimulants and other psychiatric medicines like sodium oxybate, methylphenidate, and solriamfetol are prescribed to help with sleepiness and cataplexy (consultation with a doctor is important before taking any kind of medication). Research states that people suffering from narcolepsy feel more alert if they build in planned power naps across the day. Scheduled naps for 15 to 20 minutes can help in improving alertness. One should avoid situations where sleepiness is dangerous, such as driving. A consistent sleep schedule with good sleep hygiene, ensuring sufficient nightly sleep, with regular wakeful hours is also very important. In one study, the combination of scheduled naps and regular sleep times reduced the level of daytime sleepiness and unintentional daytime sleep. One must avoid things that can disrupt sleep like caffeine or alcohol as much as possible. Routine screening should be performed for other sleep disorders which should be treated if identified. Support groups like Narcolepsy Network are believed to help learn coping skills and connect with people suffering from Narcolepsy. Counseling for the patient, and the family, can also be useful as family and friends need to be supportive of people with narcolepsy.

Narcolepsy as a disorder is not known to many which can delay its diagnoses thus hampering a person’s day-to-day life. Even though there is no cure for it as of today and research is still an ongoing effort to find out as much about this disorder and find a cure for people suffering from Narcolepsy. Through symptom management, Narcolepsy can be controlled to some extent and an individual can live a self-fulfilled life, but we as a society should spread awareness about the same through NGOs and campaigns to make people understand and lend a helping hand to support people suffering from Narcolepsy.

By Sneha Suvarna

-Krsh Welfare Foundation.