Table of ContentsView AllTable of ContentsTypesSymptomsCausesDiagnosisTreatmentCopingNext in Narcolepsy GuideSymptoms of Narcolepsy
Table of ContentsView All
View All
Table of Contents
Types
Symptoms
Causes
Diagnosis
Treatment
Coping
Next in Narcolepsy Guide
Narcolepsy isnotsimply being overtired. Those who have it are unable to stay awake for periods of time no matter the situation.
Verywell / JR Bee
Types of Narcolepsy
There are two main types of narcolepsy—type 1 and type 2. They are differentiated based on two factors:
Type 1 NarcolepsyCataplexy presentAbsent or low levels of hypocretin incerebrospinal fluid (CSF)Type 2 NarcolepsyNo cataplexyNormal levels of CSF hypocretin
Type 1 NarcolepsyCataplexy presentAbsent or low levels of hypocretin incerebrospinal fluid (CSF)
Cataplexy present
Absent or low levels of hypocretin incerebrospinal fluid (CSF)
Type 2 NarcolepsyNo cataplexyNormal levels of CSF hypocretin
No cataplexy
Normal levels of CSF hypocretin
Type 1 vs. Type 2 Narcolepsy
Narcolepsy Symptoms
The symptoms of narcolepsy usually begin in a person’s teens or early twenties, but may first occur in childhood or even late adulthood, though this is rare.
There are four main symptoms of narcolepsy. Only one in three people with narcolepsy has all four.
Daytime Sleepiness
Every person with narcolepsy experiencesexcessive daytime sleepiness, where they doze off at random times during the day when they should be awake. Sometimes this occurs without much warning, which can, unfortunately, lead to injury.
It’s important to note that people with narcolepsy do not sleep more than healthy individuals. Their sleep-wake patterns are simply disrupted, and they enter intoREM (rapid eye movement) sleepmore rapidly than normal.
Cataplexy
Cataplexy occurs when a person experiences a sudden, short-lived loss of voluntary muscle tone (weakness) while awake. This weakness is emotionally-triggered, meaning its onset occurs when a person is feeling a strong emotion, like amusement, anger, or surprise.
The weakness of cataplexy usually begins in the face and then moves to the knees. It may result in jaw-dropping, head nodding, knees sagging, limping, and in severe cases, falling. The good news is that the weakness is transient, with episodes usually lasting from a few seconds to a few minutes.
Hallucinations
People with narcolepsy may experience intense, vivid hallucinations while awake but transitioning to sleep calledhypnagogic hallucinations. As a result, a person may see, hear, or feel things that are not really there.
These occur as a result of the brain generating dreams while awake.
Sleep Paralysis
Other
In addition to the above symptoms, many people with narcolepsy suffer from psychiatric concerns, most notablydepression and/or anxiety.
Obesityis also common in narcolepsy and is believed to be related to loss of hypocretin.
Narcolepsy appears to occur because of hypocretin deficiency. Hypocretin is thought to promote wakefulness and maintain normal muscle tone, so it makes sense that its loss would lead to sleepiness and the sudden weakness seen in cataplexy.
It is thought that theimmune system, which typically is responsible for fighting infection, may target and destroy hypocretin-containing neurons (nerve cells). Why a person’s immune system turns against these neurons in the brain remains unclear. Many experts suspect thatan infection (typically a cold or flu) may trigger the body to react against itself in genetically-susceptible individuals.
Interestingly, certain vaccines may play a role in the development of narcolepsy as well. In fact, an increased risk of narcolepsy was found following vaccination with Pandemrix, a monovalent H1N1 influenza vaccine produced for the 2009 to 2010 flu season and only used in Europe. Use of this vaccine has since been halted.
Finally, there is likely a genetic component to narcolepsy, as this disorder is found among family members. Up to 10% of individuals diagnosed with narcolepsy with cataplexy report having a close relative with the condition.
If you believe you may be suffering from narcolepsy, your healthcare provider—usually a sleep specialist—will first perform a medical history and physical exam. Then, various sleep tests may be recommended to clinch the diagnosis of narcolepsy or evaluate for other sleep disorders.
Medical History
Answering “yes” to one or more these questions usually warrants further investigation into a possible diagnosis of narcolepsy.
Of course, in order to consider other causes behind your symptoms, your healthcare provider will also ask questions like:
Physical Exam
In addition to a medical history, your healthcare provider will perform a physical exam, which will include a neurological exam, mostly to rule out other causes for daytime sleepiness or muscle weakness.
Sleep Tests
If your healthcare provider is suspicious of a diagnosis of narcolepsy based on your history and exam, you will need to undergo further testing. Typically, your healthcare provider will have you complete a sleep log oractigraphyin order to record how much sleep you are getting.
A diagnosis of narcolepsy is strongly supported if, on the MSLT, you fall asleep in less than eight minutes on average across all naps and enter REM sleep during two or more naps.
Most people without narcolepsy take longer than eight minutes to fall asleep during naps. And if they do sleep, they rarely enter REM sleep.
REM Sleep and Your Health
Lumbar Puncture
While not routinely done, if your MSLT is hard to interpret or your case is otherwise ambiguous, alumbar puncture (spinal tap)may be performed. During this test, a sample of cerebrospinal fluid is obtained in order to measure the concentration of the hormone hypocretin.
A hypocretin level that is less than or equal to 110pg/mL (picograms per milliliter) is consistent with a diagnosis of type 1 narcolepsy. A normal of hypocretin supports a diagnosis of type 2 narcolepsy.
Narcolepsy is a chronic condition with no cure, as the destruction of hypocretin-containing cells is typically complete and the resulting deficit is permanent. Therefore, narcolepsy requires persistent treatment.
The good news is that behavior modifications, as well as differentmedications, can be used to treat the symptoms associated with narcolepsy.
Behavioral Modifications
Examples of behavior changes that can decrease the symptoms of narcolepsy include:
Why Regular Sleep Patterns Help
It’s also important for a person with narcolepsy to follow up with theirprimary care physicianor other healthcare provider as directed. Weight problems and side effects from medications can be addressed and monitored.
Sometimes a referral to a mental healthcare professional is warranted not only to address possible psychiatric conditions, but to aid in coping with the daily life challenges of living with narcolepsy.
REM-Suppressing Medications
Stimulant Medications
Daytime sleepiness in narcolepsy can be treated with stimulant medications, such as:
Sodium Oxybate
Xywav (sodium oxybate) is another medication used to reduce cataplexy, usually more severe cases. It can also be used to treat daytime sleepiness.
On the Horizon
It’s good to remain hopeful about the future treatment of narcolepsy. New therapeutics may be able to prevent, slow, or reverse the destruction of the hypocretin-containing cells in susceptible individuals. Regeneration of this population of brain cells with stem cell transplants may also eventually be possible.
Though these interventions are still distant, there remains the possibility that one day, narcolepsy may ultimately go away in those who are afflicted with it.
No doubt, the debilitating symptoms of narcolepsy pose challenges to daily life. People with narcolepsy may struggle to keep up with work or school, and they may find it difficult to maintain social and romantic relationships.
While medication and behavior changes can help a person manage their disease well, narcolepsy education amongst a person’s loved ones and peers is an essential coping tool.
If you have narcolepsy, please consider telling others about your condition (or invite them to read about it through reliable online resources). By educating people, you are giving them the opportunity and foresight to provide you with the support you need, both emotionally and physically.
Finally, since mood disorders are common in narcolepsy, if you are experiencing symptoms of depression (for example, feeling sad all the time or losing interest in activities you once enjoyed) or symptoms of anxiety (for example, worrying all the time or enduring panic attacks), please be sure to reach out to your healthcare provider. You may benefit from talk therapy and/or taking an antidepressant or anti-anxiety medication.
Choosing a Sleep Specialist
3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
National Institute of Neurological Disorders.Narcolepsy Fact Sheet.
Schiappa C, Scarpelli S, D’Atri A, Gorgoni M, De Gennaro L.Narcolepsy and emotional experience: a review of the literature.Behav Brain Funct.2018 Dec 26;14(1):19. doi:10.1186/s12993-018-0151-x
Kryger M, Roth T, Dement W. Principles and Practice of Sleep Medicine.Elsevier, 5th edition. 2011.Ramar K, Olson EJ.Management of Common Sleep Disorders.Am Fam Physician. 2013 Aug 15;88(4):231-28.Scammell TE. (2019).Clinical features and diagnosis of narcolepsy in adults. Benca R, ed. UpToDate. Waltham, MA: UpToDate Inc.
Kryger M, Roth T, Dement W. Principles and Practice of Sleep Medicine.Elsevier, 5th edition. 2011.
Ramar K, Olson EJ.Management of Common Sleep Disorders.Am Fam Physician. 2013 Aug 15;88(4):231-28.
Scammell TE. (2019).Clinical features and diagnosis of narcolepsy in adults. Benca R, ed. UpToDate. Waltham, MA: UpToDate Inc.
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