When I first started noticing that I was having trouble, I was in high school, I was about 15 years old and I'd gotten mono. And it was really hard to deal with because there's a lot of tiredness associated with mono and it just felt like I never really got better. And I would come home from school and go to bed at like 3pm and sleep until I had to go to school the next day and I wouldn't do my homework, I wouldn't do well on tests, I would fall asleep at my desk and it was really difficult for me. I remember one day my mom came downstairs and she pulled the sheets off my bed and she asked me if I was on drugs and I told her I wasn't and she asked me if I was sick and I said, I don't know, maybe. So she was the one who took me to see the doctor and we spent a long time trying to figure it out and once I finally had a sleep latency test, I kind of figured out what was happening and I was having these episodes, I was standing by my locker and one of my friends made a joke and I fell to the floor and I had no idea what was wrong with me, I was weak and I couldn't move and for a moment I thought I might be paralyzed or worse and it was completely frightening and I realized later that it was cataplexy and what was happening to me was these emotional triggers bringing out these episodes of muscle weakness. And it eventually got to a point where I was afraid to laugh in front of people or to feel strong emotions and then it got to a point where I would avoid people altogether and my social life was just as bad as my grades. We're concerned with a disorder that causes excessive sleepiness such as narcolepsy. To be diagnosed with narcolepsy, a patient must go through a thorough evaluation in the clinic as well as objective testing in a sleep laboratory. The testing involves an overnight sleep study called a polysomnogram followed by a daytime nap test called a multiple sleep latency test or an MSLT. On the MSLT, a patient has five opportunities to nap once every two hours starting at 8 a.m. The MSLT evaluates sleep latency or how quickly a patient falls asleep and the subsequent sleep stages. Typically, a person will enter REM, rapid eye movement sleep, about 90 minutes into falling asleep. A patient with narcolepsy may enter REM sleep only 20 minutes after falling asleep. This is called a sleep on-site REM period and it is a major feature of narcolepsy. A patient with narcolepsy also has a short sleep latency so it takes on average less than eight minutes for certain patients to fall asleep during their MSLT. So since I've been diagnosed, everything has changed. It went from okay to worse to even worse and then better and slowly after trying a lot of medications, a lot of dosages, a lot of different timings, I got to a point where I could control my narcolepsy with just a few different medications and the right regime and the right sleep hygiene and I am now at a point where I can work a full-time job, I can be a part-time model, I have an organization for narcolepsy awareness in Canada and all of these great things around me are happening because I sought help from a sleep specialist and I was able to see someone who was interested in my care and who knew what was going on with me and was able to help me. The diagnosis of narcolepsy, however, is just the start of a journey. This is a lifelong condition and treatment options may vary over a person's life. For example, treatment options for a college student may be very different than for a woman planning on getting pregnant, but the outcome is the same to try to alleviate sleepiness and other symptoms of narcolepsy such as cataplexy, falling down episodes with laughter like an art patient.

narcolepsy

personal experience

diagnosis

treatment

sleep specialist