Learning to Live with Narcolepsy
I was 15 when I developed the first symptoms of narcolepsy with cataplexy. Narcolepsy is the uncontrollable urge to fall asleep, and cataplexy is temporary muscle weakness or paralysis.
Over the summer, I started to fall asleep if I watched TV or lay around on the couch, and I didn’t sleep well at night. That fall, I started noticing muscle weakness when I laughed. At first, I didn’t think anything of that or connect it to my sleep problems.
By Christmas, I was waking up seven or eight times a night, so we went to our family doctor in Salem. The first thing they considered was insomnia, so I kept a sleep log and tried other things, but nothing helped. My symptoms got worse, and I had to put off getting my driver’s license because of my condition.
Around New Year’s, I got on the Internet and took a sleep disorder questionnaire. When it asked about the weakness in my knees, and falling asleep while sitting still, I realized this happened to other people too. A box popped up and said “You have narcolepsy!” I went back to my doctor and asked for the next step in diagnosis.
The doctor sent me to OHSU, where I had an overnight sleep study – the one with electrodes on your head – and a daytime nap test. The Sleep Clinic paired me with Dr. Kyle Johnson because I was under 18 then, and he treats mostly kids. He started me on medication that effectively controlled my symptoms. After taking a series of tests, I finally got my license.
I was also able to work. Between high school and college, I spent two summers helping build a brain donation database at the Stanford University Center for Narcolepsy and doing office work for their clinical research coordinator, Mali Einen. She has narcolepsy and was one of the first people to take Xyrem. I wouldn’t have been able to do this work, or learn so much about narcolepsy, without Dr. Johnson’s treatment.
Today, I take Xyrem and Effexor, which are quite effective. I started a business, Division Street Works (www.divisionstreetworks.info), building fine furniture and doing high-end woodworking and construction. My medication lets me sleep at night, drive and be productive. I’m also fortunate to have insurance. If I didn’t, the annual cost of Xyrem alone would be more than I earned last year.
Dr. Johnson has known me for 10 years now, and having that history means a lot. I still see him every couple of months. Because I’ll have narcolepsy for the rest of my life, that life will be quite different from ordinary. It’s the treatment I received at OHSU that allows me to lead an extraordinary life.