Narcolepsy causes excessive sleepiness, hallucinations, sleep paralysis, and vivid nightmares. It affects men and women equally, with symptoms typically beginning in early childhood or adolescence. 200,000 Americans are living with narcolepsy and 3 million people worldwide. In understanding narcolepsy you can find a way to continue doing what you love and live a full, healthy, happy life.
Narcolepsy is a condition that causes excessive sleepiness, sleep paralysis, and hallucinations
Table of Contents
- What Is Narcolepsy?
- Medical Definition of Narcolepsy
- Types of Narcolepsy
- Symptoms of Narcolepsy
- What Causes Narcolepsy?
- How Is Narcolepsy Diagnosed?
- Narcolepsy Treatments
- Managing Narcolepsy
- Narcolepsy Resources and Support
What Is Narcolepsy?
Narcolepsy is a condition that causes excessive sleepiness, sleep paralysis, and hallucinations. Certain actions such as laughing too hard can cause cataplexy, a partial loss of muscle control. Those with narcolepsy can fall asleep at any time which has a huge impact on quality of life. Driving for long distances can be almost impossible without ingesting strong stimulants.
Medical Definition of Narcolepsy
Narcoleptic definition by Mayo Clinic defines Narcolepsy as a chronic sleep disorder, narcolepsy symptoms cause intense daytime sleepiness and sudden bouts of sleep. People who suffer narcolepsy find it difficult to stay awake for long periods of time. Narcolepsy has no cure but can be managed with lifestyle changes and medications.
Narcolepsy is caused by low levels of hypocretin, a chemical that promotes wakefulness and regulates REM sleep.
Types of Narcolepsy
Narcolepsy with Cataplexy
Cataplexy is the sudden loss of muscle control, in the face, arms, torso, or legs. Those with narcolepsy can experience an episode of slurred speech, sagging jaw, and slump down in their seat for up to two minutes. These episodes are usually triggered by a strong emotion such as laughter.
Narcolepsy without Cataplexy
The typical narcolepsy symptoms of excessive sleepiness, sleep paralysis, and hallucinations can be experienced without cataplexy and is considered to be less severe than narcolepsy with cataplexy.
Symptoms of Narcolepsy
- Excessive daytime drowsiness and suddenly falling asleep
- Bouts of loss of muscle tone in face, jaw, arms, and torso for up to 2 minutes, slumping into chair
- Sleep paralysis and nightmares
- Changes in sleep cycles and REM frequency
What Causes Narcolepsy?
Narcolepsy is caused by low levels of hypocretin, a chemical that promotes wakefulness and regulates REM sleep. Coupled with this, there are secondary medical conditions that may cause narcolepsy such as, autoimmune disorders, brain injuries, or it is inherited. Over 1,300 people developed narcolepsy from a flu vaccine, Pandemrix in 2009.
How Is Narcolepsy Diagnosed?
A narcolepsy test in the form of a clinical examination and full medical history is typically enough to diagnose narcolepsy. Patients are asked to keep a sleep journal for up to two weeks, documenting their sleep times and experiences. Narcolepsy has one defining symptom that is not seen in any other medical conditions. Cataplexy, a sudden loss of muscle tone in the face, arms, legs, or torso.
Narcolepsy test include:
- Polysomnogram (sleep study) an overnight recording of brain, muscle activity, eye movements, and breathing. A PSG tells your doctor if you have a healthy cycle of REM sleep or if you have sleep apnea
- Multiple Sleep Latency Test that examines daytime sleepiness. An MSLT measures how fast you fall asleep and if you enter REM sleep or not. During the test, you take 5 short naps over one day, if you fall asleep within 8 minutes this is considered excessive daytime sleepiness, if you enter REM sleep within the first 15 minutes 2 times out of 5, narcolepsy is diagnosed
Treatment for Narcolepsy: Medications
- Modafinil - central nervous system stimulant
- Stimulants like amphetamines if Modafinil does not work
- Antidepressants - produce less adverse symptoms than amphetamines and can ease cataplexy symptoms
- Sodium oxybate (GHB or gamma hydroxybutyrate) - a strong sedative to be taken twice per night
Treatment for Narcolepsy: Lifestyle Changes
- Exercise every day to promote sleepiness at night and to control your weight
- Enjoy fresh air every day
- Find ways to ease stress, medication, yoga, etc
- Avoid caffeine or alcohol before bedtime
- Avoid smoking particularly at night
- Take scheduled daytime naps for no more than 20 minutes each
- Introduce sleep inducing hygiene habits, limit screen time 1 hour before bed, sleep in a dark room, no TV in bed
Narcolepsy symptoms may seem scary but they can be managed. It is possible to have narcolepsy and live a full and happy life.
- Tell loved ones (and maybe colleagues if you feel comfortable) about your condition as they can offer support
- Read narcolepsy blogs to learn from people who have been living with the condition for a long time, feeling connected to other people who are experiencing the same condition as you can be therapeutic
- Be easy on yourself, if you need to cancel an appointment or event at the last minute because you don’t feel up to it, that’s okay, your health is more important than forcing yourself into a social situation
- Keep a sleep journal, document your naps, how you feel and any dreams you have
- Keeping a food diary can help you find any food triggers
- Avoid alcohol and smoking or at least limit and avoid before bedtime
- There are many support groups out there, many of which are online now
Narcolepsy Resources and Support
Signs of narcolepsy are excessive daytime sleepiness, falling asleep at inappropriate times, sleep paralysis, hallucinations, and possible loss of muscle tone in face, jaw, arms, and torso for up to 2 minutes at a time. Narcoleptic conditions can be scary at first but with lifestyle changes and medication, you can regain control of your life. Telling family, friends, and colleagues about your condition and joining a support group can be a great support.