Signs and Symptoms

My signs and symptoms associated with narcolepsy and cataplexy are ever evolving.  Every day is different and each day holds new adventures and challenges.

Here are a few of the symptoms I experienced years ago, prior to diagnosis.

Fatigue: An almost too obvious sign of narcolepsy, fatigue becomes a normal part of existence for an individual with N. Everyone gets tired, right? Yes, so that is why fatigue is not an overwhelming symptom that sends you searching for answers from your doctor. I can remember sitting in my daytime college classes with either a Rockstar or Starbucks always by my side, and still falling asleep. I envied those that could be in class all day without appearing the least bit drowsy. Class was torture sometimes.  After being alert for the first ten minutes, the nodding off would start.  My eyes would close and my head would drop until my chin hit my chest, then my head would snap back up and my eyes would open. Caffeine did not work for me as it did for others. After drinking a quad shot caramel macchiato, I could go directly to sleep- I thought everyone could.  It wasn't until I had a discussion with an anesthesiologist friend, that I thought twice about how caffeine affected (or didn't affect) me.  His theory was that I must metabolize caffeine extremely fast. Maybe so, or maybe this was also a symptom of N.  It really doesn't matter what the reason, it's just a tiny piece of the puzzle.

Cataplexy: For years I experienced a strange sensation when I laughed. It sort of felt like I was going to pass out, but not really. I never knew how to verbalize this feeling properly- it was hard to describe. My knees would also slightly buckle when I would get angry or embarrassed. These feelings passed quickly and did not cause me to fall down. It was dismissed by doctors as a Vagal response and I was told to breathe more when I laughed. In a nutshell, cataplexy is a loss of muscle tone usually triggered by emotion- you are completely conscious, but paralyzed.
Now my cataplexy attacks can involve my whole body and are especially worse if I am laying down. Sometimes my head will drop, or my elbows and arms will relax, along with my hands. If I am holding something in my hand it will inevitably slip through my fingers during an attack. If I am talking at the onset of an attack, my jaw will go slack as well as my tongue, and I begin to slur my words. I usually just quit talking until the feeling passes.
I've gotten used to recognizing an attack coming on, so I can at least prepare myself. Instead of falling down, I lean onto something ( or someone) for support, or lower myself to the ground slowly so that I don't have far to fall.

Automatic Behavior: A somewhat frightening component of narcolepsy, is the ability to perform functions/tasks while having a sleep attack. Sleep attacks can come with little warning, it is an overwhelming desire to just shut your eyes for a second and go to sleep. Now I truly understand what the saying "like a ton of bricks" means. Your eyes, head and body feel like a ton of bricks has been placed on them. For me, this happened while working graveyard shifts as an RN in the neonatal intensive care unit. I would have to stand up to do my charting, even then I would "sleep chart". Being aware that I was nodding off, all the while still writing my nursing notes, I would re-read my entries that were written as nonsensical gibberish. It was embarrassing to have crossed out entries and edits on my nursing notes. Other nurses reassured me that they did this too, so I didn't feel too bad about it, just thought that it came with working the graveyard shift territory. It wasn't until the last couple months that I worked, did my automatic behavior get worse. As I would go to the supply rooms, I would literally be sleep walking while getting supplies. I would nod off right in the middle of walking, take a few steps then snap out of it, only to nod off again and again. Although I never hurt a patient, thank God, I became painfully aware that I was becoming a potential hazard to the precious babies that I cared for. You see, during automatic behavior, if you fall asleep while performing a task, you continue that task even though you are asleep. My hands would continue working, while my brain went to sleep. For example; while taking blood pressure, changing a diaper, swaddling, and preparing feedings. This led me to constantly double and triple check my work.

I never would have dreamed that I had narcolepsy, but by finding out that I had cataplexy, I was led to learn about narcolepsy. Understanding what narcolepsy truly is takes time and patience. You won't get all of the answers at once because there are still answers yet to be discovered. So discover what works for you, it may not be what works for everyone else.