Chapter Eight: My First Appointment

 I went to see Dr. Cevallos, my father's sleep doctor and a pulmonologist, in the spring of 2014, roughly a year after graduating from college. I was actually meeting with the nurse practitioner, Julie, who would become an instrumental resource during the next few years. In an ironic scene straight from a comedy movie, I actually fell asleep in the waiting room!

After being woken and called back, I explained to Julie, almost laughably, that I was there because I was tired, because sleep problems ran in my family, and because I wanted to satisfy my nagging mother.

In many ways I was still not taking my symptoms seriously, maybe using my terrible sense of humor to deflect some nervous insecurities. I'd begun feeling crazy lately, and deep down I was afraid she might agree.

I also realized while sitting there, that part of the reason I'd put off the visit was because I thought I'd be diagnosed with sleep apnea and I was vain.

The idea of wearing that awful mask to bed wasn't appealing. I was young and the thought of having my future husband wake up to Darth Vader the next morning didn't sound like my cup of tea. On the other hand, I was tired of the dark circles I had the next morning, and tired of not even having the energy to put on the makeup to cover them.

Julie asked about my biggest concerns first. I explained that I was sleeping everywhere and struggling to wake up in the morning. I casually mentioned the vivid dreams and sleepwalking, but didn't bring up the sleep paralysis or hallucinations.

At this time, I still didn't have a name for any of it and "sometimes I can't get out of bed" or "I see things that aren't there" sounded weird. I also didn't mention the cataplexy, as it seemed totally unrelated to sleep at all. I felt weak when I was laughing, or scared. Not when I was sleeping.

Julie listened carefully, asked some questions here and there, and then handed me a piece of paper that asked me to rate on a scale of 1-3 how sleepy I would be in certain situations. Later on I'd discover that this was called an Epworth Sleepiness Scale. The situations the scale asked about included:

- sitting and reading

- watching TV

- Sitting, inactive in a public place (e.g. a theater or a meeting)

- As a passenger in a car for an hour without a break

- Lying down to rest in the afternoon when circumstances permit

- Sitting and talking to someone

- Sitting quietly in a lunch without alcohol

- In a car while stopped for a few minutes in the traffic.

(Source: http://epworthsleepinessscale.com/)

The truth was that all of these situations could put me to sleep; it was just a matter of how quickly it would happen. For a moment, I actually wondered if Julie would think I was exaggerating, I even thought the test was a little dumb. In my mind, these things would easily put everyone to sleep; I wasn't special!

According to the scale a score of 1-6 is good, 7-8 is average, but everything higher than nine means you should seek medical assistance. (Source: http://epworthsleepinessscale.com/) With a score in the twenties, it turned out I was pretty special.

She immediately asked if I'd ever heard of Narcolepsy. I had, but like most people, my knowledge of the condition was limited to the comedic version presented by Hollywood and some goofy goats that fall down at the drop of a hat.

She called in Dr. Cevallos, excitedly explained our conversation so far, and then asked for his opinion. Dr. Cevallos then asked me some odd questions, questions that hit home in a powerful way. He asked me if I'd ever had scary visions when I was falling asleep or waking up. He asked if I'd ever felt like I was paralyzed while I was trying to wake up. He asked if I'd ever felt weak or collapsed while laughing.

I was shocked. How did he know this about me? He smiled calmly, at my consternation and explained that it did, in fact, sound like I had narcolepsy. He explained that symptoms of narcolepsy include: fatigue, cataplexy, sudden sleep attacks, insomnia, dream-like hallucinations, and sleep paralysis. (National Sleep Foundation)

On a side note, you may have noticed 'insomnia' on the list and questioned my sanity. Yes, this really is a narcolepsy symptom! It can be caused by a number of things, but essentially the brain of a PWN has a difficult time determining when it's appropriate to be asleep, and when it's necessary to be awake. At the time, I only had limited experience with it.

On days when my EDS (extreme daytime sleepiness) gets the better of me and I take a too-long daytime nap, it can be twice as difficult to reset my biological clock to a normal sleep time. I also struggle if my vivid dreams and hallucinations have been more active than usual. Since these are often triggered by stress I wasn't sure if the insomnia was also caused by stress, or by a fear of falling asleep. I also found that I'm not as well rested the next morning if I've been sleepwalking or talking the night before.

Following our conversation, it seemed definite that narcolepsy testing was in order, we scheduled two sleep tests a few weeks from then—a total of a 24 hour test.

Walking out of that office that day, I felt a little giggly—almost giddy. Narcolepsy sounded silly in many ways, but in other ways I connected with so much of what Julie and Dr. Cevallos said to me that day. The possibility of a solution on the horizon planted a tiny seed of excitement.