The History
Let me back up a bit to 2009. I was a senior at the University of Oregon and I was driving back and forth between Eugene and Portland every weekend preparing for a mission trip to Haiti. It was during this time that I learned how insanely terrifying those little bumps on the side of the road are when they wake you up and you realize they probably saved your life. "Thud, thud, thud" is forever a sound that will stop my heart and get my adrenaline pumping. Unfortunately, I am extremely stubborn and continued to make the drive thinking I was just tired but fine. THANK GOD He had more for me in this life and kept me and those around me safe.
Fast forward to 2010. I was 22, in graduate school and student teaching. I started to notice that I was genuinely exhausted. I was sleeping 10-12 hours a night, sleep walking and having extremely vivid dreams and hallucinations. When I got home from school, I would lay down on the couch and wake up hours later. I was so tired that I was having trouble staying awake at school when I wasn't teaching. I really didn't think much of it until I started falling asleep in traffic...mid conversation with my friend I drove to school with. At that point I realized that something was wrong and I was putting other people in danger.
My doctor didn't really know what to do with me (which is a common theme) so she sent me for a sleep study. I called to schedule in May and they told me the first opening they had was September. When I told them I was falling asleep driving, they quickly found an opening immediately.
The Sleep Study
My sleep study was conducted at the hospital where my mom worked. I was extremely surprised how comfortable the bed was...a stark contrast to the institutional look of the room. I was hooked up to wires all over my head and face. I would undergo a traditional sleep study overnight. If I had sleep apnea, they would hook me up to a CPAP machine and we would have our answer. I did not have sleep apnea so I got to stick around the next day for the Multiple Sleep Latency Test (the main event, as I like to call it). During the MSLT, I would take a 20 minutes nap every 2 hours. This was super annoying. At 8, 10, 12, 2, and 4 I would get hooked up for a nap, I would sleep for 20 minutes, then I would hang out until the next one. I had to keep the wires on my head hooked up in between naps. I would walk over and visit my mom in between, but I looked absolutely ridiculous.
Exhibit A:
The Diagnosis
I'm pretty sure the story of my diagnosis is similar to someone who caught a fish and tells how big it is, and it gets bigger every time. I'm sure every time I tell it, my stats get more severe. So, for research sake, I pulled out my sleep study results for this (which are kept in a fire safe lock box so I never have to do that damn sleep study again).
During the naps, I fell asleep in an average of 2.3 minutes and hit REM in an average of 9 minutes. A normal person falls asleep in an average of 15 minutes and hits REM in about 90 minutes.
I remember sitting in the doctor's office and she sat there mumbling numbers to herself and typing them in. All of a sudden she looked up at me and said "well, you have narcolepsy." She was pretty excited about it because I think I was her youngest patient by about 40 years but I was skeptical.
A Bumpy Road
I started my narcolepsy journey on Nuvigil and it was awful. I lost 7 pounds in 3 days and felt so drugged. It was as if everything around me was moving super fast and I wasn't moving at all. We changed to Ritalin with two 10 minute naps a day. The Ritalin was fine except I had a huge crash in the afternoon and I didn't have a regular work schedule...and how they heck are you suppose to nap twice a day for 10 minutes? A few years later and after fighting with insurance I finally got on Ritalin LA, which at least took away the afternoon crash.
What's up now?
I am now 28 years old and I teach 3rd grade. Narcolepsy effects my life in so many ways and, honestly, it's kicking my ass.
I made this blog in 2010 after I was diagnosed and never really used it. So, why now? Narcolepsy is a life long journey and it is a journey that not many understand. My goal is to document my journey for myself as much as anyone else.
So, whoever you are - my family, a friend, a co-worker, a narcolepsy warrior, whoever - I hope that my words can be whatever you need them to be. Encouragement. Awareness. Empowerment. Humor (because the life of a narcoleptic is filled with laughs...and naps).
Time for a nap...
LS
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