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My Narcolepsy Diagnosis - 21 Years Old and Finally Living Life

by Lea
(Texas, USA)

After browsing a plethora of narcolepsy related websites, I feel a desire to write about my experiences with the various symptoms and people's reactions.

I am 21 years old, and (so far as we know) have had symptoms since I was about 11 or 12 years old, but was only diagnosed earlier this year. It has made such a profound impact on my life.

I previously thought that I had experienced all of the classic symptoms of narcolepsy except Automatic Behavior, but just thought of an incident which may have actually been Automatic Behaviour, though I'm not actually sure. Once, on Facebook, a friend of mine replied to a comment I had apparently left on a status of his, but which I do not remember writing at all. It might have been someone else on my account but a few things make that unlikely 1) it sounded like how I would have worded it 2)the only computer I was logged onto Facebook on at the time was mine, which was in my possession when the comment was posted (I had it with me, but don't remember getting on). So there you go, I might be a <sarcasm> super-narcoleptic who has all the symptoms! </sarcasm>
Anyway, the following is the list of symptoms I KNOW I have actually experienced

EDS: Before being diagnosed, I drank between 6-10 8oz cups of coffee a day to try to stay awake and alert during the day, and even then, almost always fell asleep if I sat for more than 15 minutes at a time, whether it was class, driving, writing, watching a movie, whatever. At one point, I figured out that I slept an average of 4-10 hours during the day- in addition to 7-8 hours of sleep at night. Right before I was diagnosed, I started working longer shifts at my job (from 3 hours to 5 hours) for a little while. 2 out of 3 days while working the longer shift, my schedule would be: wake up about 15 minutes before work (I live <5 minutes away) and scarf down breakfast. Go to work, go home and sleep until supper. Eat supper and then go to bed. Repeat the next day. Fortunately, I was diagnosed within a week or two, and my manager (who has been very good about the whole thing, even if she doesn't really understand it) noticed I was extremely tired and offered to let me work split shifts so I could go home and nap (which helped tremendously). I have been at least somewhat sleepy/tired for so long, I literally do not remember anymore what it really feels like to not feel that way.

Sleep Paralysis: I have experienced sleep paralysis (both before and after sleeping) so often it is no longer surprising most of the time (though it is still terrifying)

Hypnogogic Hallucinations: I know now that my first semester in college many of what I assumed (for my sanity's sake) were dreams were probably actually hallucinations, as I really think I actually was awake at those times. They increased in regularity and intensity since then to the point where I would experience (an average of 4-6 times a week) physical sensations of the bed shifting (as if someone else was with me), or of being touched, hugged, poked, or sometimes stabbed, burned or hit with such vividness that even now the memory feels as real to me as reality. Sometimes they are auditory, but very rarely are they visual (one time, actually, after waking up, I swore I could smell pizza cooking and flour on the bottom of the oven burning, but there had been nothing cooking at all that whole time) Once, I remember waking up from a dream while seated on the couch while my parents and sister were in the next room over preparing a meal, when I distinctly heard my brother (who was in a completely different part of the house) holding a conversation with my Dad in the library, the sound of someone plucking a guitar string on the couch next to me, as well as some kind of news program on the TV (it was off). I was conscious the entire time, and could see and hear what my parents and sister were doing/talking about in the kitchen (yes, I heard my Dad's voice from two different places at the same time) and even that there was no person, much less guitar, on the other couch. I actually know for sure that I was awake not only because I don't remember waking up but also because what I saw/heard my family doing in the kitchen actually happened. I also suspect that some extremely vivid dreams I had in high school which were set in my own bedroom were actually hypnogogic hallucinations, but I am less sure about these as they didn't happen all that frequently in high school.

Lastly, I have what, by my understanding, would probably be considered moderate cataplexy. Before starting to take a REM suppressant to help control my cataplexy, I (and my family) got to where something was only considered truly funny if my face muscles twitched, my speech became slurred and/or my head lolled on my neck, which was often the extent of it, but anything up to a full-blown collapse on the floor with
temporary paralysis was not uncommon, depending on how tired I was, how funny it was, and how many other cataplexic incidents I'd had immediately previous. I would usually lose my grip if I was holding something (which I have learned to avoid in potentially humorous situations) and sometimes my limbs spasmed if I tried to collect myself a little too early. Please understand, I did not (and still do not) have much negative emotion attached to my cataplexy--mine is triggered by laughter, and I can still appreciate the joke just as much from the floor as the chair. My family have been amazing through the years at helping me make sure I didn't hurt myself or drop anything important, and I learned to somewhat control the cataplexy in public by controlling my emotions--at least, I rarely collapsed all the way to the floor in public, and most people don't notice if your knees drop you to the floor for a moment or your head sags momentarily. So while I did sometimes collapse all the way to floor, I usually at most have to sit/kneel for a moment if it happens during the daytime hours. After about 8pm, I expect to end up on the floor if I laugh.

Now that you have an idea of what my symptoms were like just prior to getting diagnosed/medicated, let me start at the beginning of my experience.

My family has always placed a high value on intellectual pursuits such as reading, curiosity, critical thinking, etc, and consequently I grew up (for the most part) liking school a lot. I remember being so insanely jealous when my older brother went to Kindergarden and learned how to read that I would look at the Sunday comics and pretend I could read them, making up stories about what was happening. By the time I was in 3rd grade I was regularly reading fantasy novels aimed at adults (I particularly enjoyed Piers Anthony's Xanth books
). Every spring when the spelling bee, math competition and science fair rolled around, I was one of the first to sign up and usually did well.

Then, one time in junior high, I remember realizing that I had literally been constantly tired for weeks. But, on the other hand, I also had terrible sleep habits at the time (4-6 hours of sleep most nights, and that never at consistent times). So I just kind of shrugged it off and tried to get better sleep habits. It was about this time I started sometimes "collapsing" (my family's name for cataplexy before we knew what it was) if something was really funny. Again, I didn't really think anything of it because, well, wasn't that what people meant when they said "rolling on the floor laughing"? And anyway, it usually was just my knees buckling slightly or face/head sagging. It didn't even happen all that often: maybe 2-3 times every week or two.

However, I continued to be constantly tired, and it only seemed to get worse. I started falling asleep in class- especially math. This really disheartened me. I had always (and still do) love school and learning, and, previously, had really enjoyed math. However, I started missing lessons I found really interesting and found my math grades in particular starting to slowly spiral downwards. I did manage to keep mostly A's and B's, and even stay in the honors math program, but just barely. The longer this went on, the more I began to become discouraged about school and math in particular.

The first time I remember experiencing sleep paralysis regularly was when I was about 14 or so. These episodes terrified me, and I think may be related to my fear/hatred of the out-of-body effects one experiences with so-called 'laughing gas' , as I first experienced nitrous oxide's effects (at the dentist) around this time.

As time wore on, my daytime sleepiness (and the severity and frequency of what I now know was cataplexy but did not connect to my daytime sleepiness for years) continued to increase. Yet, any time I brought it up with most people, I was told "You need to sleep longer and more consistently" or "You should consume less caffeine before bed" (By the time I was 15 I lived on caffeine, though I never had any after 4pm) or just simply "Quit being so whiny, I'm tired too, ya know". I tried mentioning that I had been constantly tired for a long time, but very few people believed me. So, after a while I really believed that I just got tired more easily than most people, and so I should just be really careful about getting proper sleep, and I quit talking about it as much or seeking answers constantly.

(Continued below)

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Aug 21, 2013
My Narcolepsy Diagnosis - Cont'd 2
by: Lea

For about a year while my Dad was unemployed, I had no medical insurance and so went to the doctor much less often, and when I did, shied away from the more expensive blood tests, so that I probably ended up being checked for thyroid, glucose levels and who knows what all else many times. Then I went off to college, which made it even harder to get in to see my family doctor. And, once again, I was surrounded by peers who thought me lazy, a wuss, or who "taught" me all these things about good sleep hygiene that might have really helped, if I hadn't already known all that. It was really hard to believe that my sleepiness was actually something more than just my imagination.

For the next few years, I would occasionally bring it up to the doctor, when I saw him and was in town. I ended up eventually dropping out of college- partly due to being unable to stay awake even in classes I really really enjoyed, and partly due to depression and I got a job at a fast-food restaurant here locally. Finally, earlier this year after my doctor said in my latest appointment with him that he had just reached the end of what he could think of/know to try, and with the exhaustion beginning to affect how well I did my job, I wrangled my way into an appointment at a sleep clinic (Thank goodness I live in a large city with almost half a dozen certified sleep clinics :)

I talked to the doctor there about my symptoms. After I was finished he looked at me and said two things : 1) You have narcolepsy and 2)Why did you wait so long to come in?

Over the next few months, I have found a combination of Vyvanse, Wellbutrin (the REM suppressant), caffeine and scheduled naps which has almost restored me to completely normal functioning; I wouldn't presume to assign numbers or percentages to my functionality, but I usually only sleep at most 2 hours during the day (an average of about 50 minutes total) and have cut my caffeine intake to a fraction of what it was- and I am able to think more clearly and enjoy life more. Also, the Wellbutrin helps with the cataplexy to the point that even my face muscles don't always sag.

However, sometimes people's reactions (even if they mean well) is discouraging.

Like, right before the appointment with the sleep doctor, I and a friend of mine were having lunch, and I mentioned how I was going to see the doctor because I was so tired and she immediately responded with what she sincerely meant to be encouraging; "Well, I'm sure he'll just tell you that you need to sleep better/more"

Shortly after my narcolepsy became common knowledge within my social circle, someone said to me "You know, I'd love to be able to fall asleep like you do" to which I replied "NO, no you really don't". I think I offended her. <sarcasm>Whoops… </sarcasm>

Aug 21, 2013
My Narcolepsy Diagnosis - Cont'd 3
by: Lea

Some people's reactions though, restored some of my faith in humanity.

My manager (the one who allowed me to work split-shifts) apparently thought of epilepsy when I originally tried to explain it to her, so then she asked me if I would explain it to her boss (who really did need to know). When I did, his first reaction (much like hers had been) was "Bless your heart! What can we do to help?". Not "How will this affect your job performance?" or even "What does this mean for insurance/paperwork/etc?" but "What can we do to help?"

My family, as I mentioned previously, have been amazingly, wonderfully supportive of me. Even when I didn't fully believe there was something wrong with me, they kept pushing me to get to the bottom of why I was so tired all the time. My brother in particular has been wonderful. He would help make sure I woke up in time to go to work and stuff if I fell asleep during the day, actually called me every day while I was in college to make sure I was up and heading to class, and has generally been there for me through it all. I am so grateful to him.

Now that I know, now that I am getting help, the narcolepsy no longer limits me the same ways it did before. I can drive by myself again without worrying about it. I can watch movies with friends without falling asleep (if I'm careful and/or it's exciting). I can let myself let go and just laugh as hard as I want and not fear hitting my head on the floor.

In the end, I am able to control it, instead of it controlling me. And that is the best feeling of all.

Sep 01, 2015
Living Life NEW
by: Jessica

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