Hi, my name is Vanessa and I'm a Narcoleptic

So I just did a search of my blog and I realized that even though I mention my narcolepsy from time to time, I never actually explained what it is, how I was diagnosed, and what it means for my life.  This is kind of funny since I find myself telling the story to someone at least once a week.

It sounds melodramatic but I can’t remember a time when I wasn’t tired.  Mornings have always been torturous for me and I remember taking afternoon naps almost every day that I wasn’t babysitting in high school.  My grades were atrocious the first quarter of college, in large part because I literally could not wake up in time for my morning classes (even small sessions where I knew my absence would be noted).  I booked afternoon classes for the rest of college.   

The first semester of law school was more of the same- morning classes were awful and I could barely stay awake.  Sometimes I couldn’t and I know that affected some of my professors’ perceptions of me (and possibly my grades).  I felt so bad every time it happened but I didn’t know why.  I got 8 hours of sleep every night and really only went out during the week on Thursday nights.  Once I could pick my own classes, I chose ones in the afternoon and again, the problem was solved.  I chalked it all up to not being a morning person and shifted my whole life to wake up at 10 and go to bed at 2.

Once I graduated, working for a law firm didn’t permit me the luxury of setting my own schedule.  I was once again forced to wake early and survive on massive amounts of coffee.  I went on this way for years- tired but functional.  I started veering into non-functional territory in 2012.  I was momming Lil, wifing Matt, and working full time.  I was sleeping 8 or 9 hours a night but still waking up feeling as if I hadn’t slept at all.  I was napping every weekend and fighting sleep attacks while driving.  I realized it was bad with a capital B one morning on Wilshire Blvd. when I woke up just as I was about to slam into the car in front of me.  I hit the brakes, averted a fender bender and called my doctor.

One of my countless Sunday naps back in the day before I was diagnosed.

I went in for a visit and told him how tired I was.  He thought it might be a hormone imbalance or thyroid issue, which are both somewhat common after a pregnancy.  And thus began the year of testing, in which we drew blood, tested for various things, and hit repeat.  At some point during this year I came across a Wikipedia entry on narcolepsy.  Almost every single symptom matched up except for cataplexy (spontaneous collapsing).  I mentioned this to my doctor and he said something like “Probably not; it’s really rare.”  And thus we continued the year of testing until we got to the sleep study.

The main point of the sleep study was that my doctor was convinced I had sleep apnea.  I was 99% sure I did not have sleep apnea.  But hey, I thought, I could use a night away at UCLA's sleep center.  Almost like a vacation!

I reported to UCLA’s sleep center at about 7 PM on a Friday night in May 2014.  I was shown to this nifty room and unpacked my things, which included Lily’s frog lovey and a pinwheel she wanted me to bring as a token of her affection.

My room at the sleep center.  One benefit of that study was that I got to watch the entirety of season 1 of Fixer Upper, which was awesome.  Watching TV and sleeping all day was amazing!

Lily's creature comforts that she insisted I take with me to the study.

I was hooked up to dozens of sensors on my head and face, during which process I declared “I will never be able to sleep with all this stuff on my head and face.”  Then the door closed, encasing me in complete darkness and I slept straight through until they woke me up at 6:30 the next morning.

At this point I was informed, to my complete lack of surprise, that I don’t have sleep apnea.  This meant that I had to stick around for the rest of the day for the narcolepsy sleep study.  I was asked to stay awake until 8 AM.  At 8, someone came into my room, hooked me up to the machine again, told me to try to take a nap and turned off the light.  30 minutes later I was woken up to repeat the same exercise 4 more times that day.

For normal people, it would be extremely difficult to take five 30-minute naps after having slept for 8 hours the night before.  Not for narcoleptics and not for me.  I fell asleep each time and went into REM sleep within 2 minutes the first 3 times.  And that folks, is how you diagnose narcolepsy.  (There’s also the spinal tap method but I wasn’t going to volunteer for that!)

My diagnosis came about a month after the sleep study and precipitated a wave of conflicting emotions.  I was relieved to know that I wasn’t weak-willed or crazy; I was legitimately sick and had an excuse for sleeping in and nodding off in class.  On the other hand, learning that you’re legitimately sick sucks.  Before, I was convinced that there was something I could do to get more energy- a new diet or exercise regimen or something.  After, I knew there was nothing I could do.  I was literally going to be tired for the rest of my life.  I was liberated by this knowledge but also depressed by it and it took me a good six months to really come to terms with what it all meant.  To be honest, I still have setbacks where I get into a funk about it, but, for the most part, (emotionally at least!) I’m doing five-by-five as Faith says.