The Social and Emotional Toll of Narcolepsy

 Normally, turning on the light in your house is as easy as flipping a switch. Now, imagine if the light didn’t work properly. Imagine that flipping a switch on or off meant guessing if the light would turn on or off, or just flicker. Not knowing what your light is going to do at any moment would severely limit your ability to function in your house and would be exhausting, frustrating, and very disrupting. For people with narcolepsy, this is an everyday reality. The light represents the brain of a person with narcolepsy, as they can feel tired or awake at any time, not knowing when sleep will attack. Although the physiological effects of narcolepsy are well-known and studied more, the social and emotional toll is not talked about as much but can have equally devastating and life-altering effects. 

Narcolepsy

Narcolepsy is primarily characterized by sleep-related symptoms (e.g. daytime sleepiness, sleep paralysis), as well as hallucinations and sometimes cataplexy, which is a partial or total loss of muscle tone that can occur after experiencing intense emotion (such as excitement or high stress). Furthermore, disruption in sleep cycles can cause sleepiness during the day and sleeplessness at night. This creates an everyday battle between living a neurotypical life and grappling with the symptoms of narcolepsy. 

This disease only affects 0.002% to 0.016% of people worldwide and exists in two types: narcolepsy type 1 (NT1) and narcolepsy type 2 (NT2), which are differentiated by the existence of (NT1) or the absence of (NT2) cataplexy [1]. Narcolepsy also presents with disrupted sleep cycles: a neurotypical person experiences five stages of sleep, starting with non-REM sleep, characterized by light or deep sleep, in stages one through three. The fourth stage of sleep is REM, or rapid eye movement, in which an individual experiences an increased heart rate and more frequent dreams. People with narcolepsy, however, have inefficient non-REM sleep and a disrupted sleep cycle that does not follow this typical pattern [2], something that, along with other factors, can indicate a narcolepsy diagnosis. 

There are four main etiologies, or causes, of narcolepsy. The first is that narcolepsy is heritable, in that abnormal gene expression could be passed down to family members. Specifically, individuals who have first-degree relatives with narcolepsy are ten to forty times more likely to develop this disease [1]. The second is related to the gene HLA DQB1*0602, which is present in people with NT1, but not in people with NT2. The HLA gene is human leukocyte antigen, which codes for proteins that help one’s immune system fight infections; this simply serves as a marker that can help indicate narcolepsy (along with other factors) and which type a person has. The last main cause of narcolepsy is a deficiency in a brain chemical called hypocretin. Hypocretin regulates our sleep-wake cycle using chemical messengers in the brain called neurotransmitters, specifically norepinephrine, serotonin, and dopamine. Individuals with narcolepsy show a loss of hypocretin neurons, causing abnormalities in producing these neurotransmitters, which project to areas that regulate sleep [1].

Diagnosis and Comorbidities

It can be a difficult journey from the first signs of symptoms of narcolepsy to an official diagnosis. During one’s childhood, narcolepsy symptoms tend to be mild and can be attributed to other external factors. Similarly, in adolescence, daytime sleepiness and emotional outbursts/mood swings as an effect of sleepiness are common, but can also be a result of biological and developmental changes that occur during this time. In their early teens, people with narcolepsy begin to show most, if not all, symptoms of the disease (e.g. sleep attacks, nighttime hallucinations), forcing lifestyle and school adaptation. Reports show adolescents with NT1 narcolepsy (with cataplexy) isolate themselves because of the cataplexy symptom and can experience academic difficulties due to encoding deficits that affect learning and memory [3]. Having trouble learning and falling behind in school can be devastating to a teenager’s self-esteem, making them feel as if they are put at a disadvantage or not good enough [3]. These problems, however, do not stop in childhood and continue into an individual’s professional life in adulthood. When people with narcolepsy go to work, they are at a higher risk of accidents and may lose their job due to poor performance [3]. Narcolepsy having this large of an impact on one’s life can be very difficult to manage. 

This misattribution of characteristics and symptoms, as we see during childhood and adolescence, continues into adulthood, this time with other, related disorders. People with narcolepsy often are diagnosed with another disorder simply based on overlapping symptoms; an attention problem being attributed to ADHD, hallucinations attributed to schizophrenia, etc. [4] This misdiagnosis can have serious consequences, including the prescription of the wrong medication that could potentially worsen one’s symptoms associated with narcolepsy. This kind of misdiagnosis delays treatment for narcolepsy, causing additional strain on one’s long-term health. The large overlap in symptoms between these related disorders is why diagnosing narcolepsy is difficult without careful symptom tracking over time and a comprehensive assessment of biological (e.g. hypocretin) and self-reported (e.g. sleepiness) symptoms.

Narcolepsy can also cause a number of psychiatric comorbidities, including ADHD, anxiety, and even eating disorders. Individuals with narcolepsy often experience sleepiness due to their disrupted sleep cycles, which can cause difficulty with attention, something attributed to ADHD. This sleepiness can also limit physical activity, which can lead to obesity [5] or various eating disorders, such as anorexia or bulimia nervosa. Additionally, the loss of control during a cataplectic event or frequent hallucinations for a person with narcolepsy can cause anxiety [4].

The main disease associated with narcolepsy, however, is depression. According to a study done in Taiwan about the comorbidity between narcolepsy and depression, patients with narcolepsy had a significantly greater risk of developing depression, including dysthymic disorder and major depressive disorder [6]. The results of this study were consequential, but not surprising. The daytime sleepiness and hallucinations can make it difficult to focus in school and work, therefore causing difficulty in daily life. Depression can be caused by the difficulty dealing with and managing a chronic disease, which explains the 57% comorbidity rate between depression and narcolepsy [4].

The symptoms of narcolepsy causing these various disorders can severely affect the life of someone with the disease. In addition to the treatment of narcolepsy, they must treat their other comorbidities with more medication and more therapies, which can be detrimental to one’s mental and physical health, as well as expensive.

Treatment

Treatment for narcolepsy can help control its damaging effects. The first and most common method is pharmacological treatment. Although there are no medications that treat or cure narcolepsy directly, there are those that can manage some of its symptoms. There are four categories of medications that help control specific narcolepsy symptoms: stimulants and wakefulness-promoting agents control excessive daytime sleepiness and sleep attacks, while sodium oxybate and antidepressants control almost all narcolepsy symptoms, including cataplexy, sleep paralysis, and hallucinations [1, 7].  As managing symptoms is one of the most difficult parts of narcolepsy, many find these medications to be helpful in curbing symptoms that are harmful to daily functioning.

The other treatment of narcolepsy involves education and lifestyle adaptations. People with narcolepsy must be knowledgeable in their disease and educate those around them in order to understand it better and know what they can and cannot do. Understanding one’s limitations, such as when to operate a car or not, is important for their safety as well as the safety of those around them. Lifestyle adaptations include practicing good sleep habits, such as establishing a nighttime routine and getting enough hours of sleep every night, both of which can help manage the REM cycle disturbance caused by narcolepsy. Strategic napping, which includes a few 15-minute naps a day in order to curb excessive daytime sleepiness and improve alertness, is a popular practice of those with narcolepsy as well [7]. The last treatment can involve cognitive behavioral therapy (CBT), which can help someone with narcolepsy get accustomed to how the disease will affect their life and relationships. CBT can also potentially help with the comorbidities that someone with narcolepsy might have.

Conclusion

Narcolepsy is an inherently underdiagnosed and rare disease. This rarity causes more difficulty to those who have it as education, diagnosis, and treatment can all be overlooked for other, more prevalent diseases. Studying the causes of narcolepsy and how they affect the brain is important, however, the psychosocial aspects of narcolepsy can be just as impactful on one’s daily life and should be treated with equal importance. Educating the population on the hidden battles of narcolepsy not only can raise awareness but allows us to understand the impact of it and support all of those who struggle with it. 

References:

1. Akintomide, G., & Rickards. (2011). Narcolepsy: A review. Neuropsychiatric Disease and  Treatment, 507. doi:10.2147/ndt.s23624

2. Khatami, R., Landolt, H., Achermann, P., Rétey, J. V., Werth, E., Mathis, J., & Bassetti, C. L. (2007). Insufficient non-rem sleep intensity in narcolepsy-cataplexy. Sleep, 30(8), 980-989. doi:10.1093/sleep/30.8.980

3. Broughton, R. J., Guberman, A., & Roberts, J. (1984). Comparison of the psychosocial effects of epilepsy and narcolepsy/cataplexy: A controlled study. Epilepsia, 25(4), 423-433.  doi:10.1111/j.1528-1157.1984.tb03438.x 

4. Morse, A., & Sanjeev, K. (2018). Narcolepsy and psychiatric disorders: Comorbidities or shared  pathophysiology? Medical Sciences, 6(1), 16. doi:10.3390/medsci6010016

5. Chabas, D., Foulon, C., Gonzalez, J., Nasr, M., Lyon-Caen, O., Willer, J., . . . Arnulf, I. (2007). Eating disorder and metabolism in narcoleptic patients. Sleep, 30(10), 1267-1273. doi:10.1093/sleep/30.10.1267

6. Lee, M., Lee, S., Yuan, S., Yang, C., Yang, K., Lee, T., . . . Wang, L. (2017). Comorbidity of narcolepsy and depressive DISORDERS: A NATIONWIDE population-based study in Taiwan. Sleep Medicine, 39, 95-100. doi:10.1016/j.sleep.2017.07.022

7. Bhattarai, J., & Sumerall, S. (2017). Current and future treatment options for narcolepsy: A review. Sleep Science, 10(1). doi:10.5935/1984-0063.20170004