Tuesday, April 2, 2013

Maybe you should know...

I have debated whether or not to put this on the blog. Of all the things I have written, I don't know why THIS would make me feel shy, but it does.

I am being treated for narcolepsy. You probably know narcolepsy as falling asleep in random places, at random times. That's an inaccurate stereotype, but a lot of people with narcolepsy have cataplexy. When you dream, your body goes into paralysis as a safety mechanism so you do not act out your dreams. Cataplexy is when this reflex kicks in while you are wide awake (usually during a moment of intense emotion or excitement). So the person is not actually falling asleep, they just have some temporary paralysis.

To be clear, I do not have cataplexy. I have extreme daytime sleepiness, that all narcoleptics have. But some people have narcolepsy without cataplexy. I sleep 9-10 hours every night, usually take at least one nap, and still go throughout my entire day feeling tired or longing for sleep. Anyone that knows me well can confirm that I am extra tired, and I sleep way more than most people.

It's hard to say when I first noticed symptoms, but according to my mom, even as a toddler, I would put myself down for naps and go to bed at 6pm. I remember in high school, that I pretty much fell asleep in class most days. One time, I even fell asleep while playing my viola in orchestra. Any time we watched a movie in class, I could not stay awake to save my life. At the time, I thought the falling asleep was just typical teenager stuff. Plus, it never interfered with my grades in high school.

I do remember in high school telling my mom that I thought I might have ADD because I had a really hard time studying. I couldn't stay focused, and usually couldn't stay awake. Her response was always that someone who did as well in school as I did, could not possibly have ADD. If I am going to be completely honest, I straight up did not study in high school. I mean, I did my homework, and wrote my papers, but I can't say I ever "studied." I was more of a last-minute memorization type of girl, and luckily, that carried me through and I graduated in the top 3%. Looking back, I honestly don't know how I did it.

Moving forward to college... I went to the University of Texas on a Biomedical Engineering Honors scholarship. Um, yeah. Didn't work out so well. Once I was studying subjects that were beyond my immediate comprehension, I floundered. I would see other kids in my classes studying for hours, and I could not for the life of me, make myself buckle down and do it. My parents thought I was depressed, and I just thought I was ambivalent about engineering. Again, I was always falling asleep in class, that is if I could even get out of bed for class. I was so exhausted. Especially my sophomore year. By my junior year, I basically had no choice but to change majors. So I went with something I knew for sure I would be interested in: fashion. Listen, there are a lot of degrees that are relatively easy to earn. Retail merchandising is one of them. I went from getting Cs and Ds to straight As. I had to take a lot of basic business classes... those are a joke, by the way. Basically learn some vocabulary and don't be an idiot, and you should get an A. That's kind of how the rest of my college experience went.

My overwhelming need to sleep also interfered with my social life in college. I can even remember getting into arguments with friends when I wanted to go home early from down town or skip going to a party. Honestly, I was just so effing tired that sleep was much more appealing than hanging out with my best friends. Obviously, reflecting back on that makes me really sad. Also, when I was in college, pretty much every time I had to make the 3 hour drive home to Houston, I would pull my car over in a random parking lot to take a nap. I did this as a safety precaution because I regularly would fall asleep behind the wheel.

I landed a really great job when I got out of college. It was 8am-5pm, and most of my time was spent sitting at a desk. I would fall asleep at my computer really often, regularly fall asleep in meetings no matter what time of day they were, and one time I even fell asleep as someone was speaking to my face. You can imagine my horror at the idea that my boss would see me fall asleep in a meeting. Or find out that I was sleeping at my computer. But I swear, I could not physically stop myself. The very last thing in the world I would want at work is for people to think I was lazy or not serious. I would put mint chapstick on my eye lids so that my eyes would burn in hopes that it would keep me awake. Didn't work. I was so desperate for sleep, that I would drive 20 minutes back to my apartment at lunch to take a 15 minute nap and then drive back to work.

That job was the first time in my life that I began to wonder if my need for sleep was a medical problem. I mentioned it to my parents, and again, got responses like "take a vitamin" "drink more water" "exercise more" "maybe you're sleeping TOO much." My dad also kind of put it as "even if something is wrong, do you want to be on medication the rest of your life?" Well, no I didn't. By coincidence, I changed jobs soon after that when I moved to Tulsa. At my new job, I didn't have to be at work until 9:40, and this seemed to help me tremendously. Also, I had to move around a lot more in my new job, and found that I wasn't falling asleep at inappropriate times. I was still always tired, but it didn't seem to interfere with my life as much.

Between that job and until now, I was unemployed, pregnant, and had a newborn. Being tired was either no big deal because I could sleep whenever, or being tired was totally what was to be expected. All new parents are sleep-deprived, right?

Well, Henry now sleeps 12 hours a night and takes 3 naps a day. So I no longer have that excuse. At the moment, I am regularly sleeping 9-10 hours every night, and getting naps. Yet, I feel extremely tired every. single. day. of. my. life. Two weeks ago, I was listening to a radio show in which a woman who wrote a memoir about narcolepsy was describing some of her symptoms. It was like a huge light bulb went off in my head. She described the strange dreaming behaviors that narcolepsy causes, and it was like going down a checklist for me. This includes lucid dreaming, having extremely detailed dreams that you remember clearly, dreaming almost as soon as you fall asleep, feeling like you dreamed all night long, hallucinations as you fall asleep, etc..

This prompted me to go to a doctor. Luckily, my doctor was super down with trying to help me out. So I have a prescription for a medication that should help me feel awake during the day. I take it for the first time tomorrow. I am both excited and scared shitless. On one hand, the possibility that I could feel alert and productive all day is exhilarating. But on the other hand, there are a lot of possible side effects. I am scared that the side effects will be too much for me. Because if this doesn't work, there really isn't any other medication option other than using ADD medication off-label (which most doctors won't do any more).

I have a lot of hopes for the next month. I am hoping that I am excited to sit and play with Henry, rather than feel sluggish and worn down. I am hoping I can do something at night other than check out and watch tv for 3 hours. I am hoping I can stay up past 10 and have enough energy to pay some attention to my husband.

So that's that. It felt wrong to not be candid about this on the blog. Feel free to chime in with any questions or similar experiences. I personally do not know anyone who has gone through something similar, so it would be great to hear from anyone who has dealt with narcolepsy or any other problem that causes extreme sleepiness.


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