Growing up in a small town meant that my diagnosis came a lot later in my life than it would for most and it took moving to Prince George and finding a supportive family doctor to finally get my diagnosis. Throughout my childhood I was plagued with migraines, asthma, bad vision, lung infections, strep, you name it. I missed tons of in class instruction in school and spent more time in hospital than out. Besides my asthma diagnosis, for which we had to travel out of town for testing, I never really knew what my health issues were specifically.
Once I moved to Prince George my medical journey truly began: I developed a latex allergy early in the testing process, something very common from over exposure to medical products containing latex like tapes, tubing and adhesives, as well as gloves. I had genetic testing done, 3 MRIs, multiple biopsies, ultrasounds, scans and tests. I was working full-time and was in a constant state of pain and brain fog; the first assumption was MS. After I had gone through months of testing and was waiting on results, I was informed that, in his professional opinion all my problems were stress related, in my head, and required no further treatment other than pain management and therapy. I was devastated, but I refused to give up. And my family doctor was right by my side.
My narcolepsy diagnosis
My family doctor in Prince George was the one who started putting the puzzle pieces together for me and was the first doctor I consulted to consider narcolepsy as a diagnosis. He noticed during an appointment that I was stuttering my speech a lot more than before, that it seemed to come and go as did my nerve pain, my essential tremor, and my migraines. He started simply, asked questions about my sleep patterns, sleep paralysis, my stutter, my allergies, and other symptoms. It was determined that I would benefit from a stimulant medication to help me stay alert and focused during the day and that I would be referred to a neurologist that specializes in sleep disorders.
My first test was an overnight sleep study and I am so fortunate that Prince George has its own MedSleep lab. I was able to have my nighttime test and daytime sleep latency nap test done without medical travel and just a short drive from home. My new neurologist is located on Vancouver Island, but through the med sleep lab in Prince George, I am able to do video call appointments to keep up with my care. My family doctor also works closely with me to monitor for more auto immune disorders that can come up later in life.
Living with narcolepsy
Living with narcolepsy is definitely interesting. I worked full time for 3.5 years as a chef, and did a TON of things half-asleep or in a REM state. I was lucky to have some amazing coworkers and friends in the industry who were there for me during my journey and diagnosis, and who were and continue to be advocates for me and help spread awareness about these types of disorders. I have an essential tremor that means I am shaky all over; my muscles have the tendency to collapse during heightened emotional responses like a startle or heavy laughter. I am sensitive to sounds and have a stutter that comes and goes with stress; these are all caused by my immune system attacking my central nervous system and destroying the cells in my brain that carry orexin. This causes my circadian rhythm and my sleep wake cycle meaning I get a large amount of REM sleep and I dream for the majority of the night. I experience sleep paralysis every night when not medicated and have short-term memory problems. I fall asleep in the middle of talking or working, and when unmediated it could happen while driving. Narcolepsy doesn’t look like it’s shown in the movies but looks more like I’m “zoning out”. New things come up every day and like most people with this rare disorder, we’re just learning to live with it one day at a time. And I am so grateful that I was able to find such and amazing and supportive family doctor in Prince George, not having to add medical travel process is just another reason I am so happy to call this city my home.