Monday, June 23, 2008

On having Narcolepsy...

If you've wondered where I've been (which, really probably hasn't been many of you), I have been on vacation for 2 weeks, during which I checked my email twice (but didn't really respond to any of them), and that's it. Then, I needed another week to catch up on life.

I just looked through my posts and realized that I've never written one about having Narcolepsy! So, my friends, here's my journey to Narcolepsy and a little bit of what I've experienced in life as a result...

I have always liked sleeping. I've never been one to WANT to get up early. Sleeping in has always been nice. My parents tried to instill in us the value of getting up early and not "wasting the day", so we always had to get up early. Even on the weekends, we had to get up by 8 am on most mornings, if not earlier due to something going on. (which, looking back, wasn't that bad but it helps set the stage...). Of course I've always been an active person, and many of those activities had me up early anyway because I had to be somewhere doing something. I started really hating mornings when, in Junior High, I started getting frequent migraines, most of them caused by some change in sleeping habits, like getting up earlier than normal. None of this (except for, maybe the migraines) is all that abormal for a pre-teen/teenage girl.

I remember exactly when I knew there was a problem. I was 15 and a sophomore in high school. I hated my English teacher because I thought she wasn't a very good teacher (I still, to this day, remember that being a bad class). She didn't like me much either. I remember I couldn't stay awake in her class, ever. It was a morning class, and looking back I think it was the block before lunch (10-12 ish). And it wasn't that she wasn't interesting, or that we didn't have things to do, but listening to her talk and even others talk I just couldn't stay awake. No matter how hard I tried to keep my eyes open they would always close. I spent most of the time in class trying to stay awake and I had little attention span left to spend on actually learning something. And, it was the first class I had that we really had to read stuff. Read lots of books (you know, the historically educational kind like "all quiet on the western front" and that book about the kids on an island) (see...thats all I remember about a "classic"). I would read a page and fall asleep, no matter what time of day I read it and no matter how "exciting" the things in the book were. This happened in other classes too, but my memory is that this class was the worst. Looking back it was probably all the reading and writing.

I brought it up on my annual physical. The dr. pointed out that I was an active teenager and at this point in my life I needed rest, it was completely normal. He did have a point. I was at dance rehearsals (then later in the year swim practice) at 5am, went through the school day, swam until 4:30 after school, usually went straight to work from 5 or 5:30 until 8 or so, then came home and worked on schoolwork (I was an honors student). But most nights I was in bed by 10 and was never one to pull an "all nighter"...I think I did it twice the entire time I was in high school. So, yes, I can see why he thought it was normal. I knew it wasn't, but figured this was just how I was.

It didn't help that I felt lazy because the expectation at my house was to be awake early...and like it...

Fast forward to college and things just kept getting worse. As with most college kids...classes before 9am were almost impossible to make. But I learned the value of waking up 5 minutes before I had to leave, getting ready as fast as possible, and making it to where I had to go just in time. But again, I couldn't stay awake in class. No matter what class. No matter what time. I made sure I sat myself in the front of the room, right in front of the professor. I tried to make sure the classes I took would have as much interaction as possible. I made sure I always had a drink with me. I made sure I always had gum or candy or food with me to snack on. I always had a notebook to take notes (even though that is NOT my learning style at all). When I didn't live on campus, I put a pillow and blanket in the backseat of my blazer so I could lay down and take a nap in the 10-20 minutes between classes. And yes, I could ALWAYS take a nap in that amount of time. These were things that I found helped. I was less likely to fall asleep (or, more likely to be able to keep my eyes open) if I were right in front of the instructor, involved in a discussion, writing notes, chewing or swallowing something, or when I just had a 5 minute catnap. I had difficulty staying awake on my drives to and from school or home after work. But again, at this time I was working full time and going to school full-time (graduating, with honors, in 3 years with a BA), actively involved in church and youth ministry, so, it was explainable that I was tired. Most of the time I walked around in a fog and I eagerly awaited days where I could just take a nap.

By this time I was setting my alarm at least an hour and a half before I actually had to get up because I needed that time to prepare myself to wake up enough to actually get out of bed. I had tried all the moving the alarm clock across the room so I actually had to get up and turn it off...but none worked. I would, mostly asleep, get up, push the snooze button, get back in bed, fall soundly asleep, dream, and then wake up again 7 minutes later...repeating for an hour or so just giving me the 5 minutes I needed to get up and out the door in time to be where I needed to be.

I graduated when I was 20, started working 2 weeks later, and had a MUCH easier schedule. But the sleeping problems didn't go away. I was struggling more and more to stay awake while driving. I would plan my schedule so that I could take a nap in my car between each store visit. When I moved out on my own I felt more free to take naps during the middle of the day or sleep in as much as I wanted to and quickly learned that the extra sleep I longed for didn't help. I was still tired no matter how long I slept.

I REALLY knew there was a problem when I became an instructor. I would fall asleep while driving to and from work. I struggled to keep awake starting 5 minutes into my commute and continued that way until I reached my destination and could get up and walk around. It didn't wake me up, but changing what i was doing seemed to help. I would sing in the car, or talk to myself and I wish I had a recorder with me so you could hear what I sounded like. I'm sure I sounded like I was a VERY drunk woman on the verge of blacking out...which I was, except, without any alcohol or drugs. And, the worst part (if that wasn't bad enough) is that when I was up in front of a class teaching, I would be hoping that what I was saying made sense because I would fall asleep while talking, standing up in front of a class. No super busy schedule now. Nothing besides a normal 9-5 type professional job. No kids. A decent but small home to keep up. No schoolwork to do. I felt so unbelievably lazy. My husband loved watching movies and I always looked forward to watching one with him because it was my opportunity to fall asleep without feeling guilty...although the $9 ticket price with no memory of the movie certainly was a bit of a shame.

It was probably another 3 years before I went to see a neurologist about it. I had finally convinced myself that it wasn't normal, and it wasn't going away. He monitored my sleeping patterns and we tried months of adjusting patterns to see if it could change. He had me on a couple weeks where I was supposed to sleep whenever I wanted to and however long I wanted to, just to see if it helped. It didn't. No matter when or how long I slept, I was always just as tired. We did an overnight sleep study where I was hooked up to wires ALL over. It came out normal, with mild restless legs syndrome. Not enough to explain the degree to which my symptoms were interfering with my life. Then, I got to do a MSLT (I think it stands for multiple sleep latency test), where this time I got to go into the sleep center hooked up to a few wires, and take a nap once an hour for twenty minutes. They measured how long I slept and how long it took me to fall asleep each time. Over 10 minutes (average) indicated no problem, 5-10 minutes indicates abnormal results, and less than 5 minutes to fall asleep indicates narcolepsy. I was at 6 or so. Unfortunately the day before the test I had a bad migraine, and I'm always very alert when I have a migraine otherwise we are sure it would have been less than 5 minutes and been a clear cut case.

Unfortunately, all this testing was in vain because Jason and I had already decided to start trying to have a baby, and therefore I couldn't take the prescribed medication anyway.

It has been 3 years since that study. Since I was pregnant and nursing for most of that time, there has been no need for me to go back to the neurologist for monitoring. But now that I'm not nursing I could probably go back for some provigil, although, they may not be willing to give it to me since we aren't on birth control. And, I'll probably have to do another set of tests. Which, isn't all that bad considering I can go and sleep all day!

Daily life for me is a challenge. I wake up as early as possible and still have the problem with the alarm clock and pressing the snooze button. I take the train most days so that I don't have to worry about driving. I do struggle to stay awake on the train because I want to be careful of what could happen if I don't. But its a struggle. Even when I take the train I have to drive 6 miles home, and about 2 miles into it I'm already struggling to stay awake. On the days I drive into work (Mondays, and occasional sporadic other days), I struggle the whole way TO work (yes, only shortly after I've woken up) and the whole way home. I dread the times I have to drive to Denton to go to classes because that, my friends, is a long drive from downtown Dallas, and I don't even make it to the 35/635 interchange before I'm falling asleep. Usually I plan for at least two stops to get up and walk around because that seems to help a little bit.

If I moved back to California, I wouldn't be allowed to have a Drivers license. It is mandatory for Dr's there to report Narcolepsy, and they don't give licenses to people with Narcolepsy (except, I guess, on an exception basis, but its rare). I don't blame them. I fear there will be a time when I will have to pull myself from driving altogether.

As I go through my day I often walk into walls, trip over my own feet, slur my speech, and have trouble finishing my sentences. Think about the time right before you fall asleep...that's how I feel all the time. The doctor says that if I take the medicine I'll be about 85% awake (compared to normal people). My immediate reaction was to ask him how alert I am now...he says somewhere between 40 and 60%, during the good times. I don't know any better...I really can't imagine what it would be like to just be awake and not be struggling to stay awake most of my day.

I have trouble staying in shape. Since my body is only awake so much, my metabolism is very slow. Additionally, I can't really get up any earlier (already get up at 5:45), I go through my day non-stop until I put my son to bed by around 9 or so, then do my best to get some sort of cleaning done and hopefully a small workout before I completely crash. I only get about 6 hours of sleep a night as it is. And, when I am awake, I have very little coordination to make my body workout. But I do what I can.

My path is somewhat normal. I was diagnosed when I was 23. They say the average age of diagnosis is around 25 because thats when the symptoms become obvious enough that they aren't mistaken for just being tired. They say it gets worse from here but I'm not accepting that.

Narcolepsy is really misunderstood. The main symptom is what they call "Excessive Daytime Sleepiness" or EDS. This is the tendency to fall asleep all the time. You CAN control it to some degree...its not like the movies where someone just falls asleep out of the blue. Usually, with this symptom, if someone does fall asleep they've been struggling for a while to stay awake, just like you have probably experienced when staying up late to watch a movie or finish a college paper, but 10X worse. Eventually, the sleep wins and the person may fall asleep for a few minutes until they wake up, only a few minutes later, horribly embarrassed that they've fallen asleep. The other main symptom is called cataplexy...this is when a person looses muscle tone for a bit (seconds to hours). Sometimes, like in my case, its pretty mild and I'll just have droopy eyes or droopy mouth, trip over my feet or have difficulty making my fingers type on the right keys on the keyboard. Other times, its more severe, where someone looses all muscle tone and actually falls to the floor. It looks like they are sleeping but they are usually awake and aware with no control over their movement. The body goes into REM sleep while the person is still awake. (essentially). There are a couple other main symptoms, one is where you feel paralyzed in the couple minutes before you fall asleep and the other is where you hallucinate a couple minutes before you fall asleep (like you are dreaming while you are awake). I often have the hallucinations (I think that I'm dreaming and asleep but I'm actually awake...we figured this out during the sleep study), but haven't really experiened the paralysis. There are medicines for these things too I suppose. I know that anti-epileptic medicines are often used for narcoleptics.

When I first got diagnosed I did some research and found others who have the condition. I haven't actually met anyone, but reading their stories online has been SO helpful. It helps me to know I'm not alone. I'm not the only one who is like this. And, its not my fault. I'm not just lazy. I'm not crazy, and I'm not making it up. Most people when I tell them say "I had no idea"...or..."but you never have a problem staying awake when I'm around". Trust me. I'm struggling. I'm much better when I'm engaged in a conversation, actively playing a game or doing something phsyical (which is probably, when you are around!). But even then, I'm struggling to stay awake. Or, I'm struggling to be energized enough to do whatever we are doing, even if its a conversation I'm struggling just to stay engaged in the conversation. And its not because I'm not interested, I just can't help it. I found a document that was 30 pages long that included symptoms and situations people have experienced because of the narcolepsy. I'm not going to share them all, but I'll pick my most common ones and share them in another post.


Pandamonium said...

Wow! Marie, I am so sorry that you have to struggle with this. I cannot imagine. Although, I think that since I've known you, I've always thought you looked tired...and I figured it was just your busy schedule and having a young baby/child. I think that however you choose to cope with it, you should do what is right for you and your family, and not feel guilty about taking or not taking medicine. I also think you deserve a beach vacation where you have the hammock to yourself all week long! :)

Mie said...

Thanks for your support!

amelia said...

Thanks for sharing Marie. I knew you struggled with Narcolepsy but I didn't know about your journey through it. I didn't know that there was little treatment for it.

I agree with Pandamonium--you deserve that beach vacation! Especially after all the difficulties you had with Logan and his sleep patterns!

Karrin said...

Hi! I came across your blog when I was searching for Narcolepsy info online. I have total textbook Narcolepsy as well, and it's even more poignant that you are a working mom (my husband and I are going to start trying for a baby soon, and I wish you the best luck for your 2nd!)

I'm so happy to have found your site!

joel.newman said...

Wow- it made me tired just to read how you struggle to say awake! I really didn't realize how much of a struggle nacrolepsy was! I know i'm tired working full time and having kids, I can't imagine having to deal with this as well. I know there's not much we can do to help - but thanks for sharing your story and we're definitely thinking of you!

astrid said...

I found your blog reading up on fostering (something I hope to do when I finish up school) and was surprised to find that you have narcolepsy too! I was also diagnosed in my early 20s and have had a very similar experience to yours, down to the migraines. I've actually been able to manage it much better since I've cut gluten out of my diet (I know! It's the "food fad" of the moment but it honestly has made a huge difference in my life!) but it's still a very significant presence in my daily life. Just wanted to give a shout out!