Friday, December 2, 2011

Growing up with Narcolepsy

I remember the first night that I didn't sleep through the whole night.  I must have been around 11 years old because I know I was in the 5th Grade.  I woke up in the middle of the night to go to the bathroom but before I could get out of bed I noticed the hallway seemed a bit cloudy.  At first I just chalked it up to having horrible eye sight but I soon realized that wasn't the case.  I was petrified.  I couldn't move. All I could do was lay there and watch the fog move down the hallway and the more I focused on it, the more I realized that there were shapes within the fog.  Bodily shapes.  GHOSTS!!

I didn't know what to do.  Were they aggressive? Mean?  I couldn't be sure.  I did know, however, that I still desperately needed to use the bathroom.  Eventually I was able to move so I jumped up and ran to the bathroom.  Once I reached the hallway I realized the fog was gone.  I went to the bathroom and than ran back into my room and hopped onto my bed. 

Within minutes, I watched the fog emerge from the living room back into the hallway and this time it continued to come towards me.  I froze.  All I could do is stare at it and the closer it got, it began to change colors.  It went from a cloudy object to a little lime green ghost that closely resembled, Slimer from Ghostbusters but with an angry face.   After a few minutes I was able to shut my eyes and I hoped that if it thought I was asleep it would leave me alone.  It reached the bed and I could feel it inching it's way to my head. 

Something interrupted this little introduction.  My younger sister that's five years younger than me came running into my room and hopped onto my bed to sleep with me.  She asked me if I saw the ghost in the hallway and I informed her that I had also seen and witnessed the same ghosts. 

To this day, I am not sure if this was a Hypnotic Hallucination/Sleep Paralysis or if our house was actually haunted but I have a few of my own "experienced based theories"  on my experience and Narcolepsy. 

1) Narcolepsy is triggered by a traumatic experience that interrupts our sleeping pattern. 

2) My house was never haunted.  My Narcolepsy onset was at age 11. 

As one can possible imagine, my parents didn't believe my little "story" and I was punished for being up several hours in panic.  Starting that night, I became terrified to sleep at night because my experiences were so horrifying.  This caused me to be extremely tired during the day.  Excessive Daytime Sleepiness, or EDS, is the most common symptom of Narcolepsy and is often mistaken for laziness.  It's described as an unfightable urge to fall asleep at any given time.  It is believed that a Narcoleptic feels as tired as a normal person would if they didn't sleep for 48 hours. 

It was around this time that I began to experience Cateplexy.  Cateplexy is the loss of muscle tone in reaction to a sudden strong emotion.  In my case, extreme laughter.  When something really funny happens or is said, my body thinks that I am entering a dream state and paralyzes my muscles to prevent me from acting out my dreams.  In the beginning, I would fall to the floor.  I was so embarrassed because people would laugh at me, which would make me laugh even harder, making the episode last longer.  Even my parents would get upset because they figured I was just acting out. 

As I got older, the symptoms got worse.  Some nights my dreams got so bad that I usually couldn't tell if they were real or not.  I began waking up more and more every night causing me to fall asleep more and more during the day.  I was constantly late to school and would fall asleep in class.  I started to get a lot of detention and no matter how hard I tried, nobody would listen. 

Than one day in Art Class my teacher asked me to stay late after class.  I figured I was in trouble for falling asleep but what she had to say surprised me greatly.  She told me she had been watching me and noticed how hard I struggled to stay awake.  She went on to say she thought I had Narcolepsy.  Narcolepsy? I couldn't possibly.  I don't sleep at night. I have insomnia or something normal like that.  It wasn't until years later I would find out how right she was. 

I managed to graduate from high school and even though I fell asleep during my ACTs, I managed to pass those too.  I went on to college but flunked out my first year.  I could never make it to class on time, no matter what time it was.  I couldn't make it on time to anything.  It didn't matter what time of day or night it was, I was always so tired that I had no concept of time. 

My Narcolepsy also effected my ability to drive long distances by myself.  Sometimes I would swerve this but most of the time I would go into Automatic Behavior.  Automatic behavior is when you basically do something in your sleep as you would if you were awake.  I would snap out of it and have no idea where I was.  One time I had driven 20 minutes past my exit, at night, in the country and it took me just as long to figure out where I was. 

I had my first child at age 20 and it was shortly thereafter that I realized I needed to go see a doctor.  The doctor had me do a sleep study and my results were absolute.  I had a textbook case of Narcolepsy.  An autoimmune disorder that prevents me from staying in the deep sleep state my body needs to repair itself.  I was my doctors first case of Narcolepsy.  He even had to get out his medical dictionary to help explain what it was and what that meant for me.  He prescribed me some stimulants and away I went. 

It wasn't until several years later that I realized how many options I truly have.  How many medicines there are out there that could help me.  This is the beginning of my journey to better my life.  To find a way for me and Narcolepsy to co-exist. Welcome to my story.


  1. Welcome! You've done an amazing job at covering onset. I haven't yet braved those waters because mine started so early in life and I find it overwhelming to entangle. I'm kind of stuck with my own blog but am hoping to get back to it soon. I hope you keep writing. It's great to be on this journey with you.

  2. Wow, what a beautifully written blog post. Your descriptions of the ghosts and fog in the hallway are vivid and powerful. I love how you introduced each symptom with stories and then gave factual descriptions. Thank you so much for sharing. I'm so moved by your story and look forward to reading more.

  3. Those who have this will be inspired to also share their experiences. Thanks for this post and I do hope you continue writing.

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