‘So you’re just going to FALL ASLEEP on me?’ I knew something wasn’t right. Without someone waking me up, I didn’t.’: Woman shares 18-year journey to narcolepsy diagnosis, ‘This is more than just falling asleep’

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“Growing up as the only girl surrounded by boys, I was a total princess to say the least. I lived in my many princess outfits, ran around my house in my tiara and probably would have gone to Kindergarten wearing my beloved Jasmine headband if my mom would have let me. I spent my time singing along with Disney movies, cheerleading, and running around with my brothers, cousins, and neighborhood friends.

Courtesy of Lindsey Kizer
Courtesy of Lindsey Kizer

After starting my fifth grade year, things drastically changed. I had always been fairly healthy, but I began an ongoing battle with strep throat; it seemed I couldn’t go more than a month without getting it. If that wasn’t bad enough, I also managed to get infected with mono. Typically known as the ‘kissing disease,’ I somehow got it without ever kissing a boy. The virus hit me like a ton of bricks. Although I had always loved sleep, this exhaustion was different. I remember having to take a ‘break’ after walking to the kitchen or bathroom before walking back to my bedroom. Some days I would even fall asleep on the floor while ‘taking a break’ before walking back to my bedroom. Things never quite went back to normal, even after I felt like I got better. I never seemed to be able to quite shake off the sleepiness.

I had seen the same pediatrician since the day I was born, so he had seen me grow up in a way. He knew I had always been a great sleeper; I was never one my mom had to fight with to take a nap. But the increase in sleepiness did concern her, so she brought it up at one of my appointments. She explained how I would easily sleep 10 hours a day, and that without someone or something waking me up — I didn’t. He didn’t seem too concerned, and he explained that I probably just had a longer sleep cycle than most. Where most people need 8 hours to feel their best, I simply needed more. He had been a pediatrician for many years and had a great deal of experience, so we trusted him. At the times it did make sense, so for many years that was what I believed.

A few weeks after finally returning to school after being out for weeks (thanks to mono), I drifted off to sleep watching Forensic Files. This wasn’t out of the norm, but that night was different. I woke up to a loud ‘BANG’ at my second story bedroom window. I awoke to see a tall slender man dressed in all black opening and coming in through my window. I wanted to get up or scream but I couldn’t move. I was frozen as this man wandered around my room. He leaned over me to make sure I was asleep, and then proceeded to take things. Most robbers take electronics, jewelry, or other things of value. But not this man — he took a few of my Beanie Babies, Barbie Dolls and even a few of my toys I had saved from McDonald’s Happy Meals. I was frozen in terror, and despite being terrified, somehow I managed to fall back asleep.

When I woke up the next time I jumped up, I could move just as normal this time, but as I looked around the room the same things he had taken were still there as if they had not been touched. This was so confusing and blew my mind. I tried to tell my mom what had happened, but she brushed it off as a nightmare and told me to stop watching Forensic Files before bed.

Unfortunately, the tall Beanie Baby burglar didn’t just come once, he visited other nights too. Along with someone else, a lady from the 1800’s in a black-and-white dress that would stand at the end of my bed. I could see her standing there watching me, but I would be sitting there as she grimaced and let out an evil laugh, frozen in my bed. I was convinced my room was haunted so I would move to different spots in my house — spare bed, couches, and even the hallway a few times — to try to sleep.

Like most 13 to 14 year old’s, I loved spending time giggling with my friends. In the summers we would basically live at the pool. We were at a swim meet one night, giggling and laughing as normal. We were leaning up against the reel of lane lines and as I laughed I felt a weird sensation in my legs I had never felt before; they felt as if they were made of Jell-O. I stumbled backwards to sit on a small metal bar to avoid falling onto the concrete. I am not sure if anyone really noticed, I did tend to be the klutzy one, tripping over my own two feet at times. I had laughed plenty of times before, but had never had that happen. I didn’t mention it to anyone and just shrugged it off as maybe I laughed just a little too hard.

I had always been a good student, I definitely had a little bit of perfectionism in me thanks to my Mom because she was really driven and high-achieving when she was in school. She also was a teacher, so she knew how important it was for us to do well in school so we could go on to be successful later in life. Senior year was a real struggle for me, it was more than just ‘senioritis’ that tends to strike most seniors. I had creative writing right after lunch, and as much as I loved to write, this class was a struggle for me. As we came into class each day our teacher would start with a quote and then we were free to write in our journals about anything we wished, but we just could not stop writing.

I remember one day sitting there and as I began to write I was hit with a wave of exhaustion out of nowhere. I could barely keep my eyes open, and I could not think about anything but my exhaustion, so I literally began to write about how tired I was, how heavy my eyes were and how much I couldn’t wait to get home so I could sleep. I even went on to explain how I was constantly tired despite how much or how little sleep I got. Even though I didn’t know why, I knew this wasn’t normal. So many of my journal entries that semester included rants and thoughts about how tired I was and how much I wanted to sleep. As the period went on, you could see my handwriting getting progressively more and more sloppy until it was to the point I couldn’t even read my own writing. Most seniors were excited about prom, graduation, and college — I was excited about sleep.

Courtesy of Lindsey Kizer

Due to my slipping grades throughout high school and my increasing amount of sleep, my mom began to worry, so we brought this up with my doctor at my next visit. This led to me being diagnosed with depression. Throughout high school, college, and even after college, I was treated for depression with various antidepressants. I saw around 6 different doctors, mostly primary care doctors. I know the doctors said depression was causing my sleepiness, but in terms of sleepiness I did not notice much difference regardless of what antidepressant they put me on. I ended up in this big continuous circle where I’d be put on a new antidepressant, report back to my doctor that I was still exhausted, and then be told it was just a side effect of the medication, they would wean me off of it and it would start all over with a new medication.

After being brushed off time and time again, being given various explanations for my sleepiness such as — depression, the depression medication, a longer sleep cycle, and even at one point was told, ‘That was just part of getting older’ (at the time I was 25) — I began to believe that I was always going to have to deal with it, and I might as well get used to it. I found ways to cope — mostly made up of sneaking off to nap between classes and on lunch breaks at work, energy drinks, and lots of caffeine.

Courtesy of Lindsey Kizer

Due to some changes in insurance, I was forced to change primary care doctors. Prior to my physical I had to go through what they called a ‘New Patient Appointment.’ It was basically an hour-long appointment of me and my new doctor combing through my medical history as well as my family history. Like most doctors, as she finished up she asked if I had any other questions or concerns. I began to explain to her how sleepy I was, how they said it was depression, but when I took medication it never helped, and then they would say the medication was making it worse. She paused for a second and I will never forget her next question, ‘Are you just sleepy when you feel depressed?’ ‘Well no,’ I muttered. It kind of caught me off guard, I had never thought about it and no had ever asked. I also added that I had family members who had been diagnosed with Narcolepsy and some that we suspected had it.

That one simple question led me to a Sleep Specialist and, finally, a diagnosis of Narcolepsy. I wasn’t all that shocked. I wouldn’t say I knew I had Narcolepsy, but for a long time I knew something wasn’t right. So in a weird way, it was a relief. But it definitely was not the end of my journey. There is currently no ‘cure’ for Narcolepsy, and there isn’t a one-size-fits-all treatment. There was a lot of trial and error to find the combination of medications as well as lifestyle changes that helped me to deal with my condition as best as possible.

One of the things I never expected with Narcolepsy was the widespread lack of knowledge and misconception of my condition. I can’t tell you how many times I got asked, ‘So you’re just going to fall asleep on me?’ or something very similar. Thanks to many inaccurate depictions on TV and in the movies, this is what many people believe. Narcolepsy is a chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. It affects 1 in 2,000 people — 200,000 Americans and 3 million people worldwide.

Symptoms vary from person to person, but can include Excessive Daytime Sleepiness (comparable to someone without Narcolepsy staying awake for 48-72 hours) and cataplexy or sudden episodes of loss of muscle weakness triggered by emotions (this can range from slackening of the jaw, to buckling of the knees or falling down). During the episode, the person remains fully awake and conscious even if unable to move or speak and can experience hallucinations upon falling asleep or waking up along with sleep paralysis, vivid dreams, and disrupted nighttime sleep.

I wish people understood that there is much more to my condition than what you see on TV. Many of these symptoms may not be visible, but that does not mean they don’t exist. Narcolepsy is more than sleepiness. And although our society seems to see excessive sleep as laziness, it is not. I feel that it has made me more driven because I have to take advantage of the few good hours I have in a day, which is drastically less than someone without Narcolepsy.

Seeing the lack of knowledge and understanding has pushed me to become not only an advocate for myself but my condition as a whole. On average, from the time symptoms appear it takes 8-15 years to receive a diagnosis; for me it took 18. I hope by helping to raise awareness I can be a part of a change that makes it so others do not have to struggle so long like I did to get a diagnosis.

Courtesy of Lindsey Kizer

Despite the rough path to diagnosis I am thankful for what it has taught me. My life may not have gone the way I imagined, but it has forced me to slow down and appreciate the important things in life. I have learned ways to achieve the same goals; I just may go about it a different way than most people. It has also introduced me to a whole community of supportive, passionate, and driven individuals that understand me in a way others don’t, despite never having met most of them in person. Sometimes the difficult times in life can teach us things we wouldn’t understand otherwise and bring unexpected blessings in ways we didn’t expect.”

Courtesy of Lindsey Kizer

This story was submitted to Love What Matters by Lindsey Kizer of Belmont, NC. You can follow her journey on her Instagram and Twitter. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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