Unexpected Sleep Episodes and Falling Turns Up Narcolepsy and Cataplexy Diagnosis

March 6, 2014

My name is Lindsay and up until I was 18 years old (1998), I was a normal teenager.

I didn’t do drugs, smoke, or drink and I still don’t. The worst thing I ever did was ditch class occassionally with friends. After I graduated high school in Arizona I moved in with my mom in California. For a time things were fine, but then we started noticing that I was having episodes of falling, especially when I would laugh or get upset.

I brushed it off and my mom, not wanting to fight about it, let it go. Then the lethargy started about six months later. Suddenly I was tired all the time. I would fall asleep in friends’ cars, in my college classes, at home. There was no explanation for it. I eventually dropped out of my classes, unable to complete them. I got a full-time job and struggled from paycheck to paycheck. This went on for several years during which time we moved to Texas.

It was there that I finally went to see a doctor. At the time I was drastically overweight and he attributed the symptoms to my weight. During the spring of 2004, I went through gastric bypass surgey. Over the next year, I lost over 150 pounds. Still the lethargy didn’t go away. It affected everything in my life.

During the next three years (2004-2007) I moved three more times, following my family where they went except for a brief eight months where I lived in Seattle while they were in Utah. Seattle was a disaster. The lethargy and random periods of falling asleep got progessively worse. I ended up depressed, not getting out of bed, not going to work.

I had never just not gone to work without calling in ever before. My mom knew something was wrong when I wouldn’t (and sometimes couldn’t) answer the phone. She drove to Seattle, helped me pack my things, and moved me to Utah where she took me to another doctor. Being told to lose weight and exercise and then being handed a prescription for Valium was the worst experience I ever had in a doctor’s office. He barely even listened to me. So I just went on trying to deal with it the best way I could.

The only way I could get through a day was drinking large amounts of caffeine. By 2007 when we moved to Colorado, I was drinking 3-4 one liter bottles of Mountain Dew and Pepsi each day to stay awake.

Moving to Colorado saved my life. I love the area, there are endless things to do, and I get to live in a smaller town and yet the city is not far away. I immediately got a job as a pharmacy technician with Walgreens and within three months had health insurance again. I was falling asleep at work at least one to three times a week, so I went to see a doctor that had just moved to the area and came highly recommended.

On my first visit I described my symptoms and the first thing he said was that he was pretty sure that I had narcolepsy and sent me for a sleep study. Within a month, ten years after my symptoms first started, I finally had a true diagnosis: narcolepsy with cataplexy. I was 28 years old. It took a year to find a medicine regimen that worked for me but we eventually got me on a particular cocktail that has since kept me functioning successfully. I’ve now been with Walgreens for almost seven years and am finally back in college. The cataplexy has actually lessened and I can get through a day of work without falling asleep! The only question unanswered was where it came from.

No one in my mom’s family had any history of diseases like this. Then two years after my diagnosis, I did find out where the narcolepsy originated from. I was doing my family tree and my aunt put me in touch with her cousin to get some family information. In talking to her I found out that one of her sisters has MS and the other has narcolepsy.

Their mother had myasthenia gravis. It took ten long years to solve the mystery and another year or so to get everything under control, but it can be done. I’m finally working on getting my happy ending and achieving my life long dream of traveling the world.

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