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 humors me. Life as a 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 pertain 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 narcolepsy is part of who we are now, and we are at a point that 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 this severe, it did cause a lot of confusion for a long time. He mostly seemed light-headed, at first, but it continued to worsen and he has fallen or dropped thing several times. We noticed pretty quickly that his cataplexy was triggered mostly by humor, especially jokes, but he has some other triggers. 

Most general physicians don't know enough about narcolepsy and cataplexy to be able to connect the two or even diagnose it. It's estimated that 70 percent of PWN go undiagnosed. For us, it wasn't until we had been married almost 5 years that Phil finally was starting to get answers, and now I realize how lucky we were to finally find them. The way it happened is kind of a miracle. Phil was regularly falling asleep in class and would often be shaken awake by his fellow grad student sitting in front of him. One day after class she was giving him a hard time about falling asleep all the time and told a story about a friend from high school. This friend, like Phil, was always falling asleep in class and his friends would joke that he must have narcolepsy. And then it turned out that he really did have narcolepsy. Phil didn’t know anything about narcolepsy so he started researching and realized that all the things he was experiencing were connected. Finally, a lead that seemed promising, but it wasn't as simple as that. After talking to Phil's doctor, and pointing out that he was pretty sure he had narcolepsy, the doctor still didn't believe him. Phil had to see a psychiatrist to be unofficially diagnosed, but our health insurance wouldn't cover the cost of a sleep study to get the official diagnosis. After a change in insurance and the addition of a second baby to our family, Phil was able to get the sleep study done. As grateful as we are that we finally know what is causing everything, it's still heartbreaking to know he has a disorder he will live with the rest of his life. In the world we live in, we think that every problem has a solution. But, with narcolepsy, there is no easy fix. While there are medications that make living with narcolepsy easier, there is no magic pill that takes this all away. They all have their side effects, and you essentially have to decide which side effects you can live with and which medications you need enough to put up with the accompanying side effects. I won't go into the details of what we have had to deal with concerning medications, prescriptions, and insurance. But, suffice it to say it has been a major pain. The most recent medication we are trying took over six months to get approved for. I can't even express how frustrating it is to see someone you love struggling, and meeting obstacle after obstacle, as you try to get a medication that could help them.

Currently, we are still in Utah, living with my sweet mom and stepdad and I've recently started a part-time job at a local library to help with expenses. Phil started his graduate program at BYU in Mechanical Engineering in 2012. Five years later, he is working as hard as he can to finish it and is on track to finish by June. It has been a struggle and he has had a lot of setbacks, of course, narcolepsy being the toughest. Of all things to be doing while being diagnosed with narcolepsy, I think graduate school is one of the hardest. However, it has made me realize that if we can make it through this time in our lives, albeit scraped and battered, we can make it through anything. 

Narcolepsy sucks big time! I wish more than anything that I could take it away from Phil. But, I am learning that everyone is given their own trials to deal with: their own mountains to climb. This is one of ours. Thank you for the support we have had from our family and a few friends, who we will forever be grateful to.

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).