A Dreamy Valentine’s Day

by julie on February 16, 2011

The stage was set for a perfect Valentine’s Day.  Walking into my boyfriend Ben’s house, I saw flowers and gifts beautifully displayed on the entryway table.  Butterflies fluttered in my stomach and I smiled to myself.  I didn’t know yet that this evening of love would bring me down, literally.

For Ben, I’d planned a scavenger hunt around his house to lead him to his presents (a glittery homemade card and a book about vegetable gardening).  While he walked around the house, settling in after a long day’s work – I stealthily snuck around hiding the scavenger hunt clues in their planned spots.  I shoved the first clue in my pocket, thinking, “This will be fun!”

When it came time to exchange presents – Ben brought his gifts in from the entryway and we sat down together on the couch.  I opened his gifts slowly – savoring the moment.

Then, it was my turn to give. I reached in my pocket and felt the small piece of paper – his “first clue” crumpling between my fingertips. It occurred to me that Ben would be confused and think “this tiny piece of paper is my Valentine?” This struck me as funny and ironic. I was clever to trick him.  He wouldn’t be expecting a scavenger hunt!

I pulled the paper out of my pocket but my arm didn’t make it across my body before giving out on me. Excitement and anticipation got the best of me and cataplexy set in.  My arm lay limp against my body, unable to move. My fingers relaxed, the clue gently falling into my lap. My eyes fluttered and closed. My jaw muscles slackened; I could not speak. My neck muscles gave out as well, so my head fell back against the couch cushion.

Ben is very attuned to my cataplexy and quickly recognized what was happening.  After a prolonged moment of silence, my jaw muscles returned briefly and I rushed to say, “Here’s your Valentine. Read it.” before more cataplexy set in.

Still unable to lift my own arm, Ben reached out to take the paper from my lap. He read the first clue out loud and laughed.  The feelings of fun and happiness were hard for me to avoid, leaving me fighting the muscle paralysis of cataplexy.

“Do you want me to wait a bit?” He asked, concerned about my cataplexy.

My muscle tone was coming and going. When able to speak, I replied, “No. Start!” I was so excited for him to begin the hunt.

“Are you sure?”

“Yeah, I’ll just stay here. Bring clues in here to read.” I wanted to go along to watch him looking for clues, but there was no way I could leave the couch (because I was struggling to maintain my muscle tones against my feelings of fun and excitement).

So he dashed off to find clue #2 and brought it back in the living room. He found it quickly! Before long, he had Clue #3 in hand.

As Ben read clue #3, another wave of happiness and cataplexy came.  I slumped to a laying down position on the couch so my head would be better supported.  My body lay like dead weight.

When I gained back some control, I started crying, frustrated by the uncomfortable loss of muscle tone.

“Why don’t I take a break?” Ben said, upset to see me cry. “Lets watch TV or something until your cataplexy passes.”

I shook my head no. I was so excited for him to finish the hunt and find his presents that I couldn’t wait.  Even though cataplexy was getting the best of my body – I refused to stop our Valentine’s evening.

So Ben continued on, finding the clues and eventually his gifts! He brought them into the living room so I could watch him open them.  By now, my cataplexy did pass completely so I was able to sit up and talk normally (something I would usually take for granted, but now I felt very lucky to have my body under my control again).

Cataplexy, a symptom unique to narcolepsy, is a loss of muscle tone usually brought on by emotions such as humor, annoyance, anger or surprise. For me – my biggest triggering emotion is when I think my own joke is funny – like this scavenger hunt.

The loss of muscle tone with cataplexy can range from a slight buckling of the knees or slackening of the neck to full body collapse.  This prolonged episode – drawn out by each time Ben read another clue – dragged on over a minute, making my Valentine’s Day cataplexy attack one of the longest I’ve ever had.

Why is this happening? In people with narcolepsy, the wake/sleep/dream cycle is confused and aspects of REM (dream) sleep – take place at inappropriate times.  When a normal person enters REM sleep – thoughts and emotions run through the brain and the body paralyzes itself so that it won’t act out these thoughts and emotions (the basis of our dreams).

During Ben’s scavenger hunt, I felt emotions of happiness, excitement and humor – but my brain misinterpreted these, thinking I was entering dream sleep – and paralyzed my body accordingly.  Cataplexy is the same muscle paralysis of dream sleep – inappropriately taking place while I am fully awake and conscious.

So I guess you could say it was a dreamy Valentine’s Day. Perhaps a little too dreamy, but dreamy none-the-less.  Thanks to Ben for his support and understanding.

{ 6 comments… read them below or add one }

Kim February 16, 2011 at 11:20 am

Wow, Julie. Thank your for eloquently explaining cataplexy. Unfortunately you had to have this experience, but my hope is that more people will understand the ugly side effects of this disorder! My next letter for the marathon talks about cataplexy and you have given me some great ideas! Thank you! Kim

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Jackie February 16, 2011 at 1:20 pm

Geeze Julie! Maybe you shouldnt be so funny! :)

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Rigoberto February 16, 2011 at 5:27 pm

I found this blog on Google. I know someone who recently got narcolepsy and I have been trying to understand it and understand what this cataplexy is. Thank you for this blog, its very informative as of about cataplexy in a persons life.

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Jerry February 17, 2011 at 10:49 pm

Rigoberto- There are some very good sources on the net describing the many manifestations of narcolepsy ad cataplexy. One I frequently review is at Stanford.edu.
BTW, I was diagnosed with narcolepsy /hypersomnia in October 2009 at the age of 57- an examination of my medical history suggests I have had n since I was very young. The average time between onset and diagnosis is approximately 14 years. The prevalence in the population is about .05.

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Nancy U February 24, 2011 at 10:44 am

Just curious, has anyone tried controlled breathing exercises at the onset of cataplexy? Like meditative breathing? Maybe just a pause would do it? Please forgive my ignorance.

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Anonymous November 24, 2011 at 9:02 pm

I just read your Valentine's posting, as I just found your blog via a friend. The explanation about cataplexy being worse from your own joke or internal thoughts is sooo true. I have been diagnosed with Narcolepsy for nearly 2 years, but developed cataplexy a year ago, while pregnant. I have "trained" myself to distract my brain when I can tell someone is being funny- basically I fake laugh a lot. But when the funniness is internal, you can't distract your brain out of a cataplexy episode. I am looking forward to reading more on your site.

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