Sleep attack: living with narcolepsy




When I think back to high school, I mostly remember sleeping through more classes than I was awake for.

I remember pushing myself out of bed in the morning with the mantra, “just get up and get dressed, and you can sleep through homeroom and first period.” Only after a chorus of three alarms and my mom’s screaming do I remember flinging myself into the shower just to then fall asleep on the floor of the tub.

Once, during a routine checkup when the doctor asked if there was anything I wanted to discuss, I spoke out for the first time about my sleep concerns. She barely looked up from her clipboard and told me there was nothing to worry about. I was just an average teenager. Teenagers are sleepy. Water is wet. She rattled off a few facts about young adults needing more sleep than children, said I had a clean bill of health and moved on to the next appointment.

A year or so later, I tried to bring it up again. This time, she asked me a set of loaded questions inquiring how much I slept, how often I exercised, how well I ate and other habits no high school student would ever practice appropriately. When I answered truthfully, she scolded me: if I was not getting a consistent eight hours of sleep a night, there was no way to prove there was anything wrong with my sleep. My exhaustion was the result of poor choices.

Having a full schedule of AP classes, I had no way of actually sleeping for the full eight hours she needed to prove anything. So, for four years of high school and two years of college, I assumed constantly fighting to stay awake was something everyone dealt with — that it was my fault for not living a healthy lifestyle.

During my spring semester of sophomore year, I had a mix-up with my class schedule. This resulted in me having class straight through from 8 a.m. to 9 p.m. on Wednesdays. As the semester continued, I began to struggle intensely to stay awake or remain even vaguely coherent throughout the day.

After falling asleep for the umpteenth time in my last class of the day, my professor pulled me outside and reprimanded my actions. He asked if I was okay, but I had no reason to believe I was not, even though I desperately felt otherwise.

I was completely destroyed by that interaction. I felt like I was a failure of a student who was letting my drastic laziness control my life. I was irritable, frustrated and so extremely, hopelessly tired. I stayed awake in his class from then on by sheer terror and a strategy of well-timed snacking on sour Skittles.

Still residually frustrated, the following summer I used that interaction to will myself to talk to a new doctor. As I sat outside in the waiting room, I played through all the ways she would reject what I had to say or dismiss me to see a therapist. But, unbelievably, she listened. Not only did she listen, but she seemed genuinely concerned. I left that day with instructions to make an appointment with a sleep specialist and a prescription for some basic bloodwork. I also left with a little more hope about the situation and a lot more fear about what was to come.

My sleep doctor was a kind, inquisitive man who wanted to test as many variables as possible. The day of that appointment was when I started to finally understand I had been right all along.

Some X-rays, an overnight sleep test, a lung function test and a multiple latency daytime sleep test — or MLST — later I received my official diagnosis: narcolepsy. During my MLST, I had fallen asleep in less than three minutes on all five monitored naps and hit REM sleep twice, a clear indication of narcolepsy.

What made my diagnosis tricky was that I do not present the symptom of cataplexy. When narcolepsy is mentioned, the first thing that comes to mind is the idea of someone falling asleep in an instant, unable to wake up. This is not entirely true. Cataplexy is a sudden episode of muscle weakness that can be brought on by intense emotion such as laughter or fear.

The person suffering the attack will remain awake and aware the entire time and can experience symptoms as slight as slurred speech or as severe as temporary paralysis. Although cataplexy goes hand in hand with narcolepsy, narcolepsy can exist without it or develop later in life.

Because of this misconception, doctor negligence and a stigma around sleep disorders, it is estimated less than 25 percent of people with narcolepsy are ever diagnosed. Of those who are, it takes on average three to ten years of bouncing from doctor to doctor to get a diagnosis. In addition to narcolepsy, chronic fatigue syndrome, idiopathic hypersomnia and other sleep disorders go vastly undertreated for similar reasons.

My battle has just begun. I still have a long way to go fighting insurance to pay for my medication, playing trial and error to discover the right doses and dealing with medication tolerance as it happens. Still, I have never felt so at ease with life. Knowing that I am not making up my feelings and that there is something truly, physically wrong causing the problems I face is comforting.

I no longer feel guilty when I have to put off plans to nap or pause studying before I fall asleep on my laptop. So far, the medication has helped greatly in combatting my symptoms, but I feel  there is a long road ahead in figuring out how to balance its negatives and positives. Of all I have gained from this experience, what I can say is this: only you know what is normal for your body. If you feel like something is wrong, do not be discouraged by one, two or even more doctors and people who tell you to forget about it.

Nobody can know you and what is correct for your body better than yourself. Do not ever be afraid to seek answers about your physical or mental health.