A Belated Update: Getting Diagnosed with Narcolepsy

As a little girl, I always identified with Sleeping Beauty, the Disney princess. Not only do I love animals, but I LOVE sleep. Trust me, there are few who enjoy a good nap and sleeping at least 8 hours a night as much as I do. As a student in college, my roommates were astounded at how much I slept and even worried there was something wrong with me. The fairy tale kept getting better when I met and married my own Prince Philip (the name of Sleeping Beauty's Prince). Little did I know that 5 years into my happily ever after, my Philip would become the real sleeping beauty, or rather, sleeping handsome. Philip was diagnosed with Narcolepsy. The irony of my situation still amuses me. Life as the wife of a person with narcolepsy has been anything but easy, and at times, "happily ever after" has seemed impossible. But we are surviving and slowly learning to live with this life-changing disability.

I've wanted to write a post for a while now, but it is hard to write anything that isn't affected or somehow pertains to what we've been dealing with for a few years now. Somehow, it never seemed like the right time to post something. In fact, I haven't posted anything on this personal blog since Landon was born; largely because there was not much I wanted to say. It's been hard at times to stay positive. In some ways, the last two years have been some of the darkest I've known, for a majority of reasons. A lot of this post was written two years ago, and I've recently come back to it and have edited and added to it, with the help of Phil. At the time of writing it, Narcolepsy was very new to me. I did my best to understand it, but it’s taken these two years to really "get it," to learn how to empathize with Phil, and realize the implications of what a life with narcolepsy can mean. As we have come to terms with narcolepsy, we realize that it is part of who we are now, and we are at a point where we can talk about it freely. I hope this can help you understand, if only a little, a condition that thousands of people experience, and yet is often misunderstood. Here it goes...

 Signs that something was wrong started in Hawaii, a year or so after we were married. Phil underwent many costly tests, all with the same outcome: he seemed perfectly healthy. Physically, besides being tired all the time, Phil looks just fine, and with the exception of Cataplexy (I’ll explain this later) there is nothing that would make a person look at him and ask, "What's wrong with him?" While this can be a blessing at times, it is also a curse. The reality of having an invisible illness can be brutal. At the heart of it, people don't believe something they cannot see, and some can be completely unsympathetic to something they don't understand. It's hard to draw the line of distinction in our minds when something that would normally be considered "lazy" is not. For a PWN (person with narcolepsy), sleep deprivation is very real, and naps are a necessary part of their days. A person who sleeps normally would have to stay awake for roughly 48 to 72 hours to understand what a PWN feels like daily. I often joke, that no one can really understand what narcolepsy feel like, except the parent of a newborn. 

Narcolepsy is a neurological disorder where the part of the brain that regulates sleep is damaged and doesn’t function properly. It is a lifelong illness with no known cure. The most prominent symptom of narcolepsy is called excessive daytime sleepiness or EDS. Since the brain of a PWN cannot properly regulate sleep patterns that person can’t get the restful sleep that the body needs to function properly. Regardless of how much sleep a PWN gets they live in a state of extreme sleep deprivation. Which means, a PWN can sleep for an entire day and still wake up feeling sleep deprived. EDS manifests as a general feeling of exhaustion throughout the day as well as the sudden and extreme need to sleep at random times. Other common symptoms of narcolepsy include: cataplexy, brain fog, sleeps paralysis, hallucinations, and memory loss. Phil has experienced all of these symptoms, while being in grad school, and having a newborn at home. 

I mentioned cataplexy earlier and you probably are wondering what it is. It's a very distinct quality linked to narcolepsy that in some cases may help narcolepsy to be diagnosed, however, a small percentage of PWN don't have cataplexy. What is cataplexy? Well, it is hard to explain, but essentially it is a loss of muscle tone in response to an emotional stimulus. Cataplexy can manifest itself as something as little as "the slackening of the facial muscles to complete muscle paralysis with postural collapse." So, for those who suffer from more extreme cataplexy, it can seem like they suddenly fall asleep. However, they are very much conscious and can hear perfectly what is happening around them. Cataplexy episodes don't usually last more than a few minutes before the person regains full muscle control. This is often just a big inconvenience to a PWN, but it can be dangerous depending on the activity that the person is engaging in. Like I said, this is the only part of narcolepsy that people notice as different. And it is most likely where the misconception originated that a PWN will fall asleep suddenly in the middle of an activity.

 The following is a video of a girl having a cataplexy attack.

https://www.youtube.com/watch?v=VA6FeiGgLF0

While Phil’s cataplexy has never been as severe as in some cases, it has caused years of confusion. At first, it just looked like light-headedness, but over time, it worsened. He began dropping things, even falling occasionally. We noticed early on that humor—especially jokes—was his biggest trigger, though there were others.

The challenge is that most general physicians know very little about narcolepsy and cataplexy. It’s estimated that 70 percent of people with narcolepsy go undiagnosed. For us, it took nearly five years of marriage before Phil started getting answers—and honestly, that feels like a miracle now.

It all began in graduate school. Phil was constantly falling asleep in class, often waking only because the student in front of him would shake him. One day after class, that same student teased him about his dozing and told a story about a high school friend who had the same problem. Their running joke was that he must have narcolepsy. Eventually, it turned out the joke was true.

Phil had never heard much about narcolepsy, but that conversation sparked something. He started researching and realized all of his symptoms lined up. Finally—a lead. But getting an actual diagnosis wasn’t simple. Phil told his doctor he thought he had narcolepsy, but the doctor didn’t believe him. He had to see a psychiatrist to get an unofficial diagnosis, and even then, our insurance wouldn’t cover the sleep study required for an official one.

Years passed. A change in insurance—and the addition of our second baby—finally made the sleep study possible. It confirmed what we already suspected. As grateful as we were to finally have answers, the truth was still heartbreaking: Phil has a disorder he will live with for the rest of his life.

In the world we live in, we like to think every problem has a solution. But with narcolepsy, there’s no magic fix. Medications help, but they come with side effects—and the hard truth is, you have to choose which side effects you’re willing to live with. Navigating prescriptions and insurance has been exhausting. The most recent medication took over six months just to get approved. Watching someone you love suffer while running into obstacle after obstacle is indescribably frustrating.

Today, we’re still in Utah, living with my amazing mom and stepdad. I’ve started a part-time job at the local library to help with expenses. Phil began his graduate program in mechanical engineering at BYU back in 2012. Five years later, he’s still fighting to finish—and is finally on track to graduate this June. It’s been a long, grueling road, and narcolepsy has been the steepest hill of all. Of all the things to juggle while dealing with a sleep disorder, grad school has to be one of the hardest.

But here’s what I’ve learned: if we can survive this season—scraped, battered, and exhausted—we can survive anything.

Narcolepsy sucks. I wish more than anything I could take it from Phil. But everyone has their mountains to climb, and this one is ours. We’re so thankful for the support of family and friends along the way—you’ve helped us keep going when it felt impossible.

To learn more about narcolepsy, go here http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

I referred to http://forums.narcolepsynetwork.org/index.php?/topic/6787-mild-average-and-severe-narcolepsy/ while writing this article. As well as Wikipedia (narcolepsy and cataplexy pages).