10 Things You Should Know About Narcolepsy

By at June 15, 2011 | 10:14 am | Print

10 Things You Should Know About Narcolepsy

10 Things You Should Know About Narcolepsy
By: Becky Fowler

I have narcolepsy.  I am a 32 year old married woman.  I was diagnosed almost 10 years ago.  In the time since I was diagnosed I have learned so much about narcolepsy and my own abilities and limits. I would like to give you some facts about narcolepsy and some incite into my world.

1. Narcolepsy is a chronic neurological disorder caused by the brain’s inability to regulate sleep and wake cycles. People with narcolepsy often have the overwhelming urge to sleep. If the person does fall asleep the sleep can last anywhere from a few minutes to an hour or more. (1) It’s 1 in the afternoon and I am sitting down to eat lunch at my kitchen table……next thing I wake up with my head on the table and now it’s 2:15pm.  What happened?? This was not on the agenda for today.

2. People with narcolepsy exhibit very distinct symptoms:

  • Excessive daytime sleepiness-they feel the overwhelming urge to sleep.  I can sleep anywhere anytime if I let myself stop moving.
  • Cataplexy – sudden loss of muscle tone.  Your knees my buckle or your head might droop or you may even lose the ability to stand or sit. This is normally brought on my intense emotions happiness/sadness/being scared/nervousness.  Episodes of cataplexy can last anywhere from a few seconds to minutes and may happen for some people once or twice a year while others multiple times a day. I was mortified the first few times this happened to me. The very first time was in public at a restaurant with friends I was laughing so hard my head fell forward.

  • Sleep paralysis-is the inability to move or speak while falling asleep or when they wake up. Most of the time sleep paralysis will last only a minute or two. Imagine waking up however you can’t move a muscle in your body.  You can’t talk or even open your eyes.  This is by far one of the most horrible feelings I’ve ever felt.  You are powerless to do anything.  Your mind is awake but your body is not.
  • Hallucinations-because you fall asleep very quickly your mind feels like your dreams are real and vivid. (2) I often have such real dreams that I call my friends and family members the next morning to make sure everything is okay with them. Other times my husband will wake me up because I am crying or yelling in my sleep.

3. There is not one specific cause of narcolepsy however researchers have found that a person with narcolepsy has low levels of  hypocretin. A neurochemical produced in the brain (specifically the hypothalamus) that regulates sleep and wake cycles. Scientists are not sure what causes the low levels of hypocretin however most believe it is due to an autoimmune response. Also some scientists believe
narcolepsy is genetic. I personally think narcolepsy is genetic.  I am the only person in my family to be diagnosed however all three of my brothers have it, my Dad had it, my Grandpa had it.

4. There are three ways to be diagnosed with narcolepsy: (3)

(1) A medical evaluation. Most of the time this is done by a neurology or pulmonary specialist. My doctor is a pulmonary specialist.  My primary doctor recommended him and after doing some research on him I trust him to help me live the best life I can.

(2) Multiple Sleep Latency Test. A person has an overnight sleep study and then stays on through out the day.  During the day the patient has scheduled “nap” and “awake” times.  This is what I did you go in about 8pm to the sleep center. They hook you up with all these electrical leads and you go to sleep in a room that kind of looks like a hotel room. They monitor you via camera and electrically.  If you stay through the day you are awake for two hours and asleep for two hours.  You repeat this a couple of times.

(3) A person has cerebrospinal fluid drawn through a “spinal tap”.  The fluid is then checked for levels of hypocretin. Sounds quick, a little painful but quick. I would absolutely be willing to have this done.

5. Narcolepsy effects men and women both equally and symptoms normally don’t surface themselves until adolescence. I read in an article a few years ago that Japanese people had the highest rate of narcolepsy and Israel Jews had the lowest.

6. Narcolepsy and anesthesia do not mix well together. Anesthesia makes your body relax and want to sleep. If you have narcolepsy and are going to be put under anesthesia you need to tell your surgeon and your nurse and make sure that it is written on all registering paperwork.

7. There is no cure for narcolepsy however there are medications that can ease the symptoms.  Stimulants are the most prescribed medication.  I take Ritalin LA and Nuvigil.  I take one in the morning and one in the afternoon. These are not magic pills, however they do help me function.  I can drive my car, sit through class, be an active participant in class and even go to the movies.  If I am not on any medicine as soon as I stop moving I start to doze off.

8. Doctors recommend people with narcolepsy stick a sleep schedule.  Try to go to bed and get up in the morning at the same time everyday.  Take short scheduled naps and exercise everyday.

9. If you think you have narcolepsy you can take the Epworth Sleepiness Scale Test.  If you score a 10 or higher you should take to your primary care physician. (4)  I scored a 23 the first time I took this test.

10. Here are a few famous people with narcolepsy:

Kimmel-comedian and host of TV show “The Man Show”

Tubman-underground railroad pioneer

Washington-actor on Gray’s Anatomy

-Harold M
Ickes-White House Chief of Staff for President Clinton
Narcolepsy is something that I.  It doesn’t define me, it just helps to shape who I am. I refuse to miss out on anything in my life because of it.  I take my medications, listen to my doctors advise and try to live each day to the fullest extent I can.  I know I have limitations but who doesn’t. Maybe one day a cure will be found I hope it is in my lifetime.

1.National Institute of Neurological Disorders and Strokes.  Publication No. 03-1637. What is Narcolepsy?” 14 May 2010. Narcolepsy Fact Sheet. 9 April 2011.

2-Mayo Clinic Staff. Narcolepsy. 15 May 2010. Mayo Clinic. 9 April 2011.

3.Health News Staff. “Narcolepsy Treatment”. 2008. Sleep
Disorder Guide. 9 April 2011.

4. Anic Labat. SLEEP, Vol. 22, No. 1, 1999. Standford
University School of Medicine. 9 April 2011.


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