What is Narcolepsy?
Quiz: Do I have Narcolepsy? What is it exactly? Narcolepsy is a neurological disorder characterized by the brain failing to regulate sleep-wake cycles. For most people, it takes about 90 minutes after falling asleep to reach the first stage of Rapid Eye Movement (REM) sleep which is when we dream and our muscles are paralyzed. Throughout the night, people alternate between REM and non-REM sleep. With narcolepsy, REM sleep happens almost immediately and also occurs involuntarily during waking hours.
A common misperception of Narcolepsy is that people with the disorder are excessively sleepy. However, Narcolepsy does not affect the amount of sleep the person needs, they sleep a normal amount of time in comparison but are unable to control the timing of their sleep. This is where there are instances of falling asleep at work or school, or while driving. That is not to say that all people that fall asleep behind the wheel are narcoleptic.
Narcolepsy affects both sexes and typically begins showing significant symptoms in adolescence or early adulthood. The symptoms tend to gradually get worse over time. Researchers recently found that there may be a link between Narcolepsy and a hypocretin production deficiency in the brain. Do you think you may have Narcolepsy? Ask yourself the questions in the below quiz: Do I have Narcolepsy, answer honestly. If you answered yes to multiple questions, you may want to talk to your doctor.
- Excessive Daytime Sleepiness
- This is the most common symptom. A big differentiator between this symptom and those without the disorder is that for Narcolepsy patients, this can occurs even when they’ve gotten a full night’s sleep.
- They may fall asleep while conversing with others, eating, driving, working, or other inappropriate times. My son once fell asleep during a conversation sitting at the table in Denny’s while eating meal.
- Sudden loss of muscle tone (going limp) which can be triggered by emotional stimulation such as laughing, being surprised, or angered.
- May result in the person collapsing.
- May only affect certain muscle groups.
- May cause the knees to buckle.
- May cause slurred speech.
- Does not lose consciousness as they sometimes do with seizures.
- Hypnogogic Hallucinations
- Scary and weird dream-like experiences that happen during the transition from wakefulness to sleep and include the person’s actual environment.
- My son, when he was in second grade, described this as the items hanging on his walls moving and the family pictures turning into terrifying monster faces.
- Sleep Paralysis
- Temporary inability to move while waking up.
- May last a few seconds to a several minutes.
- May accompany hallucinations.
- Disturbed Nocturnal Sleep
- Inability to sleep through the night, waking up repeatedly.
- Leg Jerking
Quiz: Do I Have Narcolepsy?
If you suspect you have Narcolepsy, ask yourself the following questions. Write them down along with your answers. If you answered yes to multiple questions, start a sleep diary. In your sleep diary, record the symptoms you experience, when you experienced them, when you slept, how long you slept, what dreams you remember, any hallucinations you experience or paralysis. Do this for a few weeks and then take it to your doctor. Your doctor will ask want to know your complete medical history as well as that of your family. You will likely then be referred to a sleep specialist to begin testing for a sleep disorder.
- Do your muscles go limp when you laugh or get excited?
- Do you fall asleep in inappropriate places such as work or school?
- Are you clumsy or prone to accidents?
- Have you had to pull off of the road because you were sleepy?
- Have you ever fallen asleep while driving?
- Do you have trouble focusing or concentrating?
- Do you have vivid dreams as you’re falling asleep?
- Do you have vivid dreams as you’re waking up?
- Do you fall asleep during movies or at other events such as reunions or parties?
- Do you ever feel like you’re paralyzed when in bed?
- Do you ever have nap attacks and need to lay down during the day?
Please note, answering yes to multiple questions here does not necessarily indicate that you have Narcolepsy. It simply indicates that you may have some sleep issues that should be addressed by a sleep specialist. For example, I experience many of these myself. I have Sleep Apnea which is not the same as Narcolepsy.
Narcolepsy does not have a known cure. It can be treated to help the symptoms, though. Typically, doctors will prescribe stimulant or anti-depressant medications to help treat this disorder. Behavior Therapy may also be prescribed. If you’ve taken the above quiz: Do I Have Narcolepsy, and determined that you might, rest assured that there are treatment options that can help your symptoms. But do talk to your doctor you need an official diagnosis to gain effective treatment options.
Changes in lifestyle can help reduce some of the symptoms. Behavior Therapy will help to set the appropriate changes such as taking scheduled naps during the day and not eating heavy meals. They may also work with you to set a sleep schedule and advise you to strictly adhere to it. You’ll want to be on a routine exercise and meal schedule free of alcohol, caffeine, and nicotine. While not always effective, these practices may help with some of the symptoms of the disorder.
Counseling may also be recommended to help you cope with the disorder. The general public has many misconceptions of this disorder and it is not widely understood. I can’t tell you how many times I was told to “make” my son go to sleep. How do you do that? I made him go to bed at a certain time each night but I had no way to make him go to sleep without drugging him and I don’t believe in that, in fact, I believe…last I checked…it was a felony to drug people? Maybe I missed a memo.
Where medications are concerned, there are several different types of medications that may help reduce Narcolepsy symptoms. Stimulants are used to help eliminate the excessive daytime sleepiness and improve alertness. Antidepressants can help with the cataplexy, hypnagogic hallucinations, and sleep paralysis. Sodium oxybate may be prescribed to help induce sleep, reduce daytime sleepiness, reduce cataplexy, and improve disturbed nocturnal sleep. As with any other medications, the goal is to improve symptoms without significant side effects. However, before agreeing to and implementing these treatments, be sure that all appropriate testing was done and you feel in your gut that the doctor is correct. Especially when it comes to your children. Narcolepsy is yet another medical condition that mimics ADHD symptoms and other neurological conditions. In my son’s case, he can’t be treated with Narcolepsy medications because that would make his Epilepsy worse. Therefore, we treat his Narcolepsy with Behavior Therapy only.
Narcolepsy is one of a very long list of medical conditions that has symptoms which mimic ADHD. The big problem with this is that children with Narcolepsy may go undetected because ADHD medications help some of the symptoms. This can lead to injury from accidents and heightened fears in your child from the paralysis and hallucinations.
With an accurate diagnosis and effective treatment, many narcoleptic people grow up to be very successful individuals. There have been many:
- Aaron Flahavan (Soccer Player)
- Arthur Lowe (Actor)
- Dr. Claire Allen (Research Scientist with the British Antarctic Survey)
- Franck Bouyer (French Cyclist)
- Gabe Barham (Drummer, Percussionist)
- George Church (Harvard Professor and Molecular Geneticist)
- Harold M. Ickes (Politician, Lawyer, White House Deputy Chief of Staff for President Bill Clinton)
- Harriet Tubman (Abolitionist, Activist, Humanitarian, Union Spy, Writer)
- Jimmy Kimmel (Comedian, TV Producer, Film Producer, Screenwriter, etc.)
- Jinkx Monsoon (Stage Performer)
- Kurt Cobain (Guitarist, Songwriter, Musician, Lead Singer of Nirvana)
- Lenny Bruce (Comedian, Screenwriter, Actor)
- Louis Braille (Inventor of Braille)
- Nastassja Kinski (Model, Actor)
- Nicole Jeray (Pro Golfer LPGA)
- Teresa Nielsen Hayden (Editor, Essayist, Teacher, Author nominated for 5 Hugo Awards)
- Thomas Edison (Entrepreneur, Film Producer, Scientist, Inventor of the Light Bulb, etc.)
- Winston Churchill (Statesman, Painter, Politician, Journalist, Oretor, etc.)
As always, with accurate diagnosis and effective treatment, narcoleptic individuals can bring an abundance of creativity, compassion, and brilliance to society. While it’s easy to get caught up in blaming parents, vaccines, or poor decisions for their child’s disabilities, criticizing labels and other methods of raising awareness, and theorizing about healthcare conspiracies, these people are part of our everyday lives and we owe them understanding at the very least. They give us the same in the best ways they know how.
Yes, there is an epidemic of misdiagnoses that causes annoyance and frustration surrounding children with ADHD, Narcolepsy, and many other conditions and disabilities. The problem is that the very labels that society criticizes us for using are the ones that lead to our children getting the help that they desperately need. Ignorance is bliss. It’s easy to judge when it’s not your problem. How about we educate ourselves and raise some awareness instead? Be part of the solution, not the problem.