Narcolepsy is a condition that causes abnormal sleeping. This condition affects the nervous system and can have a significant impact on a person’s quality of life. Narcolepsy is a rare and chronic condition, and the symptoms typically begin between the ages of 10 and 25 years. Narcolepsy often tends to get misdiagnosed, and many doctors fail to recognize it right away. People with narcolepsy face many issues and challenges in their day-to-day life. Here’s everything you need to know about narcolepsy and how to live your life with this condition.
What is Narcolepsy?
Narcolepsy is a condition of the nervous system that causes people to have an abnormal sleep. It is a rare and chronic condition, and experts estimate that it only affects about 1 in 2000 people.1,2
The symptoms of narcolepsy tend to start between the ages of 10 to 25 years. The condition causes a lot of daytime drowsiness along with more serious ‘sleep attacks.’ Sleep attacks can be best described as an overwhelming urge to fall asleep. People with narcolepsy also tend to have poor and fragmented sleep at night.3
In most cases of narcolepsy, the condition also leads to an unexpected and temporary loss of muscle control. This is known as cataplexy and can often be mistaken for being seizure activity, especially in children.4
While narcolepsy is not a deadly disease by itself, but having episodes of the disease while driving or doing some dangerous works can lead to injuries, accidents, and even life-threatening situations. People with this condition also have difficulty maintaining jobs, doing well at school, and have trouble maintaining social relationships due to the inevitable attacks of daytime drowsiness.
There are various treatments that are available for managing the condition.
There are two types of narcolepsy – type 1 and type 2.
- Type 1 Narcolepsy: This is the most common type of narcolepsy. People with this type of narcolepsy also have cataplexy or the sudden loss of muscle control or muscle tone. In type 1 narcolepsy, people experience episodes of extreme cataplexy and sleepiness during the day because of having low levels of a protein known as hypocretin. Hypocretin is sometimes also known as orexin.5
- Type 2 narcolepsy: Type 2 narcolepsy is not accompanied by cataplexy. People with type 2 narcolepsy have been found to have normal levels of hypocretin.
What are the Symptoms of Narcolepsy?
The frequency and severity of narcolepsy symptoms vary from person to person. Here are some of the common symptoms.
Extreme Daytime Sleepiness
The most common symptom of narcolepsy is extreme daytime sleepiness. Everyone with narcolepsy experiences excessive daytime sleepiness (EDS). In EDS, you will suddenly feel an overwhelming urge to sleep. EDS makes it difficult for a person to continue functioning properly during the day.
Another common symptom of narcolepsy is cataplexy. Cataplexy causes a sudden but temporary loss of muscle tone and control. This can range from the simple drooping of eyelids (known as partial cataplexy) to a total body collapse.
Intense emotions like fear and excitement and laughing can also trigger cataplexy. However, how often the incidents happen varies from person to person. It can either occur several times in a day or even once a year.
It is not necessary that cataplexy also develops at the same time as narcolepsy. In some cases, cataplexy can even occur later in the course of the disease. Or, you may not come to know that you have cataplexy if your doctor has already prescribed medications to suppress it. Even some antidepressants are known to suppress cataplexy.6,7
Sleep paralysis can also happen in some people with narcolepsy. Sleep paralysis refers to the inability to speak or move while sleeping, falling asleep, or waking. The episodes of sleep paralysis can last only a couple of seconds or minutes. Sleep paralysis can be similar to the paralysis observed during REM (rapid eye movement) sleep. REM sleep is the stage of sleep when you have vivid dreams accompanied by loss of muscle tone. REM sleep typically begins around 90 minutes after you fall asleep.8,9
Sleep paralysis does not affect your ability to breathe or eye movements.
Hallucinations When Trying To Fall Asleep
Some people with narcolepsy may experience vivid hallucinations at the time of falling asleep. They may also experience hallucinations at the same time as sleep paralysis. The hallucinations tend to commonly happen while falling asleep or waking up.
Fragment and Disturbed Sleep
Although people who have narcolepsy feel excessively sleepy during the day, they are more likely to have trouble falling asleep at night. They also have poorly regulated REM sleep. In people with narcolepsy, REM sleep can happen at any time during the day, not just at night. At the same time, it is not uncommon for narcolepsy patients to enter the REM sleep stage within just 15 minutes of falling asleep.
After suddenly falling asleep during an activity like driving or eating, a person with narcolepsy can surprisingly continue to do that activity for a couple of seconds or even minutes without consciously realizing that they are doing it.
Narcolepsy is also associated with several other sleeping conditions/disorders, including:
How Does Narcolepsy Affect Your Life?
Apart from dealing with the excessive daytime sleeping and sleep irregularities, it is often challenging for other people to understand the condition of narcolepsy. This has a direct effect on many facets of your life, including relationships and work. These aspects also impact your quality of life.
Here’s what you can expect when you live with narcolepsy and some tips on how you can improve your day.
Impact On Your Work
Narcolepsy is bound to have a negative impact on your work. In most cases, it becomes pretty frustrating to deal with bosses and co-workers who do not understand your condition. At the same time, though, your workplace can also be a potential danger to your health. For example, falling asleep while you are operating heavy machinery or you have a cataplexy episode during a strong emotional response.10
While you are not obligated to disclose any of your personal medical details to your boss, but you may still want to discuss with your human resources representative about your condition. As required by the Americans with Disabilities Act, your company can make some reasonable accommodations for your condition.
This can not only keep you safe, but it can also increase your productivity at work. Taking short strolls around the office or brief naps can also help.
Impact on School
Many people get diagnosed with narcolepsy during childhood itself. Several studies have shown that younger people are especially prone to the effects of narcolepsy on their quality of life.11
The symptoms of narcolepsy are known to affect schooling, especially given the susceptibility and risks of experiencing sleep attacks with EDS along with possible involuntary loss of muscle control.
Younger children or adolescents who are still in school are more likely to experience the following:
- Skipping classes
- Being late for school
- Falling asleep in class
- Turning in assignments late
Due to this, people with narcolepsy are usually perceived to be poor students, but it is essential to let the teachers and the school nurse know if your child’s condition so that the school is prepared to deal with any emergencies and can also offer specific accommodations.
Depending on you or your child’s needs due to narcolepsy, the school may offer certain accommodations like:
- Extending the submission time for assignments
- Being excused to take naps in the nurse’s office
- Giving sensory breaks
- Making the child sit near windows or other sources of natural light whenever possible.
Such types of accommodations can help students with narcolepsy become successful at school while managing their condition.
Impact On Relationships And Social Functions
It is normal to be concerned about how narcolepsy will impact the relationships you have with your family, friends, and other loved ones. The condition can also interfere and disrupt your romantic relationships.
People with narcolepsy-associated EDS can often appear like they are:
- Not interested in the people they are spending time with.
- Not paying attention because of issues with brain fog.
- Irritable or grumpy
- Are afraid to make any commitments.
Furthermore, the risk of cataplexy can also make you skip attending many social events altogether.
However, it is important to know that with proper treatment, it is possible to make and maintain social and interpersonal relationships even while having narcolepsy. It is also important to educate your loved ones about your condition and needs to help you build that relationship.
Managing Your Weight
One of the impacts of narcolepsy on the quality of life is that people with this condition have an increased risk for managing their weight, and tend to be overweight or obese.12
Obesity is a common issue in people who have been diagnosed with narcolepsy.13 This is likely due to the metabolic factors associated with this disease. Many people with narcolepsy have a slower metabolism, meaning the body is not able to burn off the calories from foods you eat like it usually should. Over a period of time, this low metabolism can cause you to gain weight that may be difficult to lose or manage with only exercise and diet.
Weight management issues in people with narcolepsy are also linked to taking antidepressants that are often prescribed by doctors to help regulate the REM cycles. The most common types of antidepressants that are known to cause weight gain are the serotonin-norepinephrine reuptake inhibitors and selective serotonin reuptake inhibitors.14,15
Another possible cause of weight gain in people with narcolepsy is the amount of sleep they get. If you already have a low metabolism or are taking antidepressants for narcolepsy, the amount of excess sleep can further decrease the number of calories your body is able to burn off while doing normal everyday activities.
Excess weight can definitely have an impact on the quality of life with narcolepsy in different ways. If you feel that your weight gain is interfering and disrupting your day-to-day life, you should talk to your doctor.
Experiencing Physical Harm From Certain Activities
Narcolepsy is known to have an impact on a variety of activities, including work and social functions. However, while we usually think of the bigger effects of the disease, it has an impact on the quality of life when it comes to dealing with smaller everyday chores as well. These include:
- Using power tools
- Driving – there is a fear of falling asleep behind the wheel
- Contact sports
- Using gym equipment
Any other water-related activities
What Are The Treatment Options For Narcolepsy?
Narcolepsy is a chronic condition and presently does not have a cure. However, the existing treatment for narcolepsy can help you manage your symptoms. Lifestyle adjustments, avoiding doing dangerous activities, along with medications all play an important role in managing narcolepsy.
There are many classes of medications that doctors prescribe for treating narcolepsy. These include:
- Serotonin-Norepinephrine Reuptake Inhibitors (SNRIs): SNRIs are a class of antidepressant drugs that help with the treatment of sleep paralysis, hallucinations, and cataplexy. Side effects of SNRIs may include insomnia, weight gain, and digestion problems. Examples include venlafaxine (brand name: Effexor).16
- Selective Serotonin Reuptake Inhibitors (SSRIs): SSRIs are another class of antidepressants that are prescribed in narcolepsy to help regulate sleep and also improve your mood. The side effects of SSRIs may include dry mouth and lightheadedness. An example of an SSRI that is typically prescribed for narcolepsy is fluoxetine (brand name: Prozac).17
- Stimulants: Stimulants are a class of drugs that help improve wakefulness in people with narcolepsy. Though side effects with stimulants are usually uncommon, but they may include headache, anxiety, and nausea. Examples include modafinil (brand name: Provigil), methylphenidate (brand name: Ritalin), and armodafinil (brand name: Nuvigil).18
- Sodium Oxybate (Brand Name: Xyrem): Currently, Xyrem is the only treatment that has been approved by the US Food and Drug Administration (FDA) to address EDS and prevent cataplexy. However, similar to other medications for narcolepsy, there are both pros and cons to consider before taking this medication. Side effects of Xyrem include depression, dehydration, and nausea.19
- Tricyclic Antidepressants: These may include nortriptyline and amitriptyline. Tricyclic antidepressants help decrease sleep paralysis, cataplexy, and hallucinations. These are an older class of drugs that can have many unpleasant side effects, including dry mouth, urinary retention, and constipation.20
- Pitolisant (Brand Name: Wakix): Wakix is another medication prescribed for the treatment of narcolepsy. This medication releases histamines into the brain that help reduce daytime sleepiness. Wakix has recently received approval from the FDA to treat narcolepsy. Side effects of Wakix may include anxiety, nausea, headache, and insomnia.21
The focus of narcolepsy discussions usually revolves around the management of symptoms and your diagnosis. However, it is important that you do not overlook your quality of life. Issues with your quality of life with narcolepsy are known to increase the risk of depression. Seeking advice from your doctor on how to manage your condition, careful planning of your day, and educating your loved ones can help.
- NORD (National Organization for Rare Disorders). 2021. Narcolepsy – NORD (National Organization for Rare Disorders). [online] Available at: <https://rarediseases.org/rare-diseases/narcolepsy/> [Accessed 12 March 2021].
- Scammell, T.E., 2015. Narcolepsy. New England Journal of Medicine, 373(27), pp.2654-2662.
- Kornum, B.R., Knudsen, S., Ollila, H.M., Pizza, F., Jennum, P.J., Dauvilliers, Y. and Overeem, S., 2017. Narcolepsy. Nature reviews Disease primers, 3(1), pp.1-19.
- Dauvilliers, Y., Arnulf, I. and Mignot, E., 2007. Narcolepsy with cataplexy. The Lancet, 369(9560), pp.499-511.
- Kornum, B.R., Faraco, J. and Mignot, E., 2011. Narcolepsy with hypocretin/orexin deficiency, infections and autoimmunity of the brain. Current opinion in neurobiology, 21(6), pp.897-903.
- Mignot, E. and Nishino, S., 2005. Emerging therapies in narcolepsy-cataplexy. Sleep, 28(6), pp.754-763.
- Lopez, R. and Dauvilliers, Y., 2013. Pharmacotherapy options for cataplexy. Expert opinion on pharmacotherapy, 14(7), pp.895-903.
- Terzaghi, M., Ratti, P.L., Manni, F. and Manni, R., 2012. Sleep paralysis in narcolepsy: more than just a motor dissociative phenomenon?. Neurological Sciences, 33(1), pp.169-172.
- Levin, M., 1933. The Pathogenesis of Narcolepsy, with a Consideration of Sleep-Paralysis and Localized Sleep. Journal of Neurology and Psychopathology, 14(53), p.1.
- Broughton, R., Ghanem, Q., Hishikawa, Y., Sugita, Y., Nevsimalova, S. and Roth, B., 1983. Life effects of narcolepsy: relationships to geographic origin (North American, Asian or European) and to other patient and illness variables. Canadian Journal of Neurological Sciences, 10(2), pp.100-104.
- Kapella, M.C., Berger, B.E., Vern, B.A., Vispute, S., Prasad, B. and Carley, D.W., 2015. Health-related stigma as a determinant of functioning in young adults with narcolepsy. PloS one, 10(4), p.e0122478.
- Wang, Z., Wu, H., Stone, W.S., Zhuang, J., Qiu, L., Xu, X., Wang, Y., Zhao, Z., Han, F. and Zhao, Z., 2016. Body weight and basal metabolic rate in childhood narcolepsy: a longitudinal study. Sleep medicine, 25, pp.139-144.
- Healthysleep.med.harvard.edu. 2021. Getting a Diagnosis | Narcolepsy. [online] Available at: <http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/getting-a-diagnosis> [Accessed 13 March 2021].
- Fava, M., 2000. Weight gain and antidepressants. The Journal of clinical psychiatry, 61(suppl 11), pp.37-41.
- Harvey, B.H. and Bouwer, C.D., 2000. Neuropharmacology of paradoxic weight gain with selective serotonin reuptake inhibitors. Clinical neuropharmacology, 23(2), pp.90-97. Møller, L.R. and Østergaard, J.R., 2009. Treatment with venlafaxine in six cases of children with narcolepsy and with cataplexy and hypnagogic hallucinations. Journal of child and adolescent psychopharmacology, 19(2), pp.197-201.
- Langdon, N., Shindler, J., Parkes, J.D. and Bandak, S., 1986. Fluoxetine in the treatment of cataplexy. Sleep, 9(2), pp.371-373.
- US Modafinil in Narcolepsy Multicenter Study Group, 1998. Randomized trial of modafinil for the treatment of pathological somnolence in narcolepsy. Annals of Neurology, 43(1), pp.88-97.
- Xyrem®, T. and Group, I.S., 2005. A double-blind, placebo-controlled study demonstrates sodium oxybate is effective for the treatment of excessive daytime sleepiness in narcolepsy. Journal of Clinical Sleep Medicine, 1(04), pp.391-397.
- Abad, V.C. and Guilleminault, C., 2017. New developments in the management of narcolepsy. Nature and science of sleep, 9, p.39.
- Li, S. and Yang, J., 2020. Pitolisant for treating patients with narcolepsy. Expert review of clinical pharmacology, 13(2), pp.79-84.
- Narcolepsy: Symptoms, Causes, Diagnosis, Treatment- Drugs, Short Naps
- Medical and Alternative Treatments for Narcolepsy
- How Narcolepsy Can Impact Patients Ability to Work?
- Impact of Narcolepsy on Patients Day to Day Life
- Impact of Narcolepsy On The School Life of Children
- Can You Legally Drive If You Have Narcolepsy?
- Do I Have Narcolepsy Or Am I Just Tired?