Science Interviews

Interview

Tue, 1st Oct 2013

Experiencing Narcolepsy

Julie Flygare

Listen Now    Download as mp3 from the show WAKE UP! - The Science of Sleep

Weíve touched on the problem of insomnia, where people canít get to sleep, but a more serious sleep disorder is narcolepsy; sufferers regularly fall asleep during their daily lives because they canít regulate their sleep patterns properly.

Julie Flygare writes a blog about what itís like to have the condition...

Julie -   For me, the first thing was, I was laughing about a joke.  My knees justA sleeping boy slightly buckled.  It was like the strangest feeling.  Like almost like I melted inside.  But then my friends said she doesnít she anything, so I thought, okay, I donít know what that was.  That weakness became worse and worse over a few years, only when weíre laughing at jokes or I was annoyed then my body would start giving out on me.  I asked my doctors about that and around the same time, I was also in a law school and I just started law school and I was having such a hard time being awake through all my classes.  Some of my notes from class would have words from dreams, like mixed in with the lecture and like celebrity names and then half sentences.  So, I was conscious, but not really actively engaged in my classes. 

I really didnít think of it as a sleep disorder for a long time.  I just thought it was like my personal problem and it wasnít until one morning that I was trying to drive to school after getting my full night sleep, I got to school and I woke up in a parking lot.  I didnít remember having arrived there.  So, that's when I thought, maybe I had a sleep disorder.  So, I went to see different doctors and it took a while, but eventually found narcolepsy with cataplexy as my diagnosis.  Once I was diagnosed, like I thought I would take medication and go back to my life, the way it was before.

I take medication twice a night to help me get into a better form of sleep because weíve spent too much time in REM dream sleep.  I mean, not getting stage 3 restorative sleep and then I take daytime stimulants during the day.  But even with all that, I still nap twice a day and that's really unpredictable. 

I feel pretty energetic and then slowly, I lose my ability to really concentrate and think straight and make the decisions.  If I'm in a conversation with friends, all at once, I might say something that has nothing to do with the conversation.  Itís almost like I almost entered like a little bit of a dream and then my friend will be like, ďWhat did you say?Ē  And then Iíll be like, ďWhat?  Oh, I donít know.  What did you say?  What did I said?Ē  I just kind of fizzle out and that happens once or twice a day.  So, as soon as I start feeling that way, I try to take a nap.  I still have that cataplexy where my body gives out. 

Itís not nearly as bad like before I received treatment.  If I hadnít gone to treatment, like I would end up in a wheelchair.  I got so bad that I was completely collapsed to the ground paralysed for a minute or two and there's another symptom of hallucinations so, when I wake up from a nap or sometimes during the night, I really think things are happening to me that someone has come into my apartment.  Maybe itís a burglar or someoneís going to attack me.  I really feel like I could see them and hear them, and feel touched, but they're not really there, and that still happens to me quite often.  That's also because the boundary between dream sleep and consciousness are kind of broken.  So, aspects of dream sleep are happening while I'm too conscious.

Priya -   Julie Flygare who writes the blog julieflygare.com, describing her experience of narcolepsy.

 

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