I Thought My Narcolepsy Was Something Else

man talking to doctor

I Thought My Narcolepsy Was Something Else

By Matthew Horsnell, as told to Hallie Levine

Looking back, I probably had symptoms of narcolepsy in childhood. My mom would joke that I could fall asleep anywhere. I was always in bed by 8 p.m. But during middle school, it's like a light switch flicked and something changed.

I'd have to drag myself out of bed and into the shower. I had gotten at least 10 hours of sleep, but I'd still fall asleep during breakfast and on the 25-minute car ride to school. I'd make it through first and second periods, and then I'd find that I fell asleep for short periods throughout the day. Keep in mind that this was middle school -- other kids were doing that too, so it didn't seem that unusual.

But after school, while my friends all hung out together, I'd be so tired I'd just want to go straight home. I'd nod off in the car on the way home or fall asleep while doing homework. I struggled to stay awake during dinner, and I went to sleep at 9 p.m.

This pattern continued all throughout high school. Since my grades never slipped, my parents didn't realize it was an issue. I didn't see friends during the week, but I'd hang out with them on the weekends. The only difference was they'd want to stay out until midnight, but I'd barely make it to 10.

A Misdiagnosis of Depression

I began seeing a therapist when I was 17 to help me cope with the aftermath of my parents' divorce. I frequently mentioned my troubles staying awake but was told it was a combination of ADHD and depression.

I was put on an ADHD medication and an antidepressant. These were both enough to mask significant symptoms, but I still struggled, especially when I began college and lived in a dorm. When I let my therapist know, they told me to just exercise more, which made no sense. I was already working out for about an hour each day.

How could my peers be out until 2 a.m., then up at 6 a.m. to go to class, and not get their butt handed to them like me? Here I was, getting 10 hours of sleep a night, and I was still exhausted.

Over the next 7 years, I saw four different psychiatrists, all of whom told me the same thing: I was sleeping a lot because I was depressed. They'd add another antidepressant, or switch one of the medicines I was on, but nothing changed.

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Pushing to Get a Diagnosis

Things finally reached a breaking point when I was 25. I'd had my first child a year earlier. I was working 50 hours a week as a store manager for a pet product store, and by the time I got home at night, I had zero to give to my family. I'd collapse into bed, and I slept for 14-16 hours a night on the weekends. My mom has sleep apnea, so she urged me to see a sleep specialist to see if I had it, too.

When I went to see the sleep doctor, I could tell right away that this meeting would be different. He really listened to what I had to say and had me fill out an extensive questionnaire. He asked me questions no other medical provider had before: Did I wake up a lot at night? Did I have bouts of insomnia? Did I notice that I seemed to lose muscle control when I laughed, or felt angry, or got excited?

Then he said something that stunned me. He thought I had narcolepsy with cataplexy, or sudden muscle weakness triggered by emotions. It's a condition seen frequently among people with narcolepsy. It's thought that people with cataplexy have low levels of the brain hormone orexin, which plays a key role in our sleep-wake cycle.

I was so stunned I didn't believe him at first. I'd worked in a pharmacy in high school and met four or five people with narcolepsy who had very severe symptoms. I didn't recognize myself in them at all. They seemed like they could barely function, while I worked full time and parented two kids. But my doctor told me he'd bet his license that I had it.

He scheduled me for a multiple sleep latency test (MSLT), which assesses daytime sleepiness by measuring how quickly you fall asleep and whether you enter REM sleep. People with narcolepsy fall asleep within about 8 minutes and go into REM sleep quickly -- within 15 minutes. I failed that test with flying colors and got an official diagnosis of narcolepsy with cataplexy.

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Life After Diagnosis

I wish I could say life changed magically after my diagnosis, but it didn't. It took 5 years to find the right stimulant medication to help me, and the correct dose. In the meantime, I had to give up my dream of going back to school to become a physical therapist. I took a hard look at my life and realized that I couldn't handle working and being in class 40 hours a week.

A few months after my diagnosis, I broke my leg. I slipped while walking down the stairs, which triggered my cataplexy. I collapsed on top of myself in a heap and shattered my leg in three places. I was in a cast for 4 months. During that time, I forced myself to sit back and redefine what success looked like. I decided as the newly single father of three kids, my priority was just to be their dad.

Be Your Own Advocate

It took me 13 years to get a diagnosis, but I consider myself one of the lucky ones. I know people who had to wait 30, even 40 years. Sadly, the average delay in diagnosis for narcolepsy is 8 to 10 years.

Unfortunately, most primary care doctors aren't trained to spot narcolepsy. They receive very little training on sleep disorders during medical school and residency, which is ironic, as we all spend about a third of our lives asleep. That's why if you feel like they're not addressing your sleep concerns, you need to go see a sleep specialist. Before I was diagnosed, all the doctors I'd seen assumed I was sleeping because I was depressed. My sleep doctor was the only one who got that it was the reverse. I was depressed because I was sleeping so much.

I facilitate weekly online narcolepsy groups, and I stress to members that they need to be their own advocate. If you clam up when you go to the doctor, bring a family member or friend to advocate for you.

Make sure the sleep specialist you see has other patients with narcolepsy. And don't be afraid to ask. The better your medical care, the more equipped you'll be to deal with this condition. I've shared my story in speeches to doctors and pharmacy students, for example, in the hopes that it will spur more awareness and better diagnosis of these disorders.

Finally, after years of struggling to get my narcolepsy and cataplexy diagnoses, I don't let them define me. I've been lifting weights almost as long as I've been having symptoms. Every day, I choose to get up and out of bed to work out and give back to my community. I may have one condition that causes sleep disturbances, and one that causes muscle weakness, but I can still be strong. With the right attitude and advocacy, narcolepsy doesn't have to kick your butt.

WebMD Feature Reviewed by Neha Pathak, MD on August 16, 2021

Sources

Photo Credit: daizuoxin / Getty Images

SOURCES:

Matthew Horsnell, Nashville.

National Institutes of Health: "Narcolepsy Fact Sheet."

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