I’d always been a sickly kid. I had asthma and allergies, spent a few days every winter vacation fighting bronchitis or pneumonia; I don’t remember a time I wasn’t on some sort of medication. I always slept more than my peers, but never thought anything of it. By puberty I had chronic pain and was increasingly depressed and anxious. Between all of that and preparing for college, I wouldn’t have considered myself any more tired than anyone else!

I spent years in and out of doctors’ offices trying to find answers for my pain. One doctor thought I might have endometriosis, so I had exploratory surgery; but they found nothing. Another doctor though I might have interstitial cystitis, so I had bladder surgery; he ultimately decided I didn’t, but a second doctor reviewed my records and said I did. Every time I tried a new medication, it would help some symptoms, but not all. One pain management doctor told me flat out it was in my head, there was nothing he could do for me.

When I was 16, I had sinus surgery. For six months before and almost a full year after, I was on antibiotics for infection after infection. I had mono that May, right during statewide student testing. I came back to school part-time just as they were giving final exams for the year. I swear I only graduated because my teachers took pity on me. I went from an A/B average the first three years of high school to barely passing most of my classes, and D’s on two exams.

I went to college for a few weeks, but the pain and anxiety was just too much on top of being away from home after September 11th. I ended up dropping out right before midterms. Not too long after, 18 by then, I was driving to meet my family at a state park for a picnic. I remember it was a beautiful late spring day, bright and sunny, warm but not hot, I had my sunglasses on, and I was having a pretty good day as far as my mood went. I’d never been to the park before that I could remember, so I was repeating the directions to myself as I drove.

As I’m slowing down for a stop sign, this jerk behind me in a van starts honking at me. I’m about to make a rude gesture when I realize that’s not a stop sign, that’s a “stop sign ahead” sign. And I don’t know where I am or how I got here.

I speed back up, stop at the actual stop sign, and notice the entrance for the park is just ahead. After I park, I take a minute to gather my thoughts. The last thing I remember, I had just gotten off the highway. That means I had at least 15 minutes to go to get to the park, and several turns to make on back roads. There would have been stop signs, traffic lights. How could I possibly have gone that far without remembering ANY of it?

I told my mother and my aunt when I got to the picnic a few minutes later. They are both nurses. We all decided I probably remembered the route from being driven there as a kid and just spaced out, like when you are going home from work the same way every time. No big deal.

No big deal, except it kept happening. I would suddenly find myself trying to stop at green lights. I’d be honked at in the fast lane because I’d slowed down to 50 miles an hour. I’d randomly realize I was less than a foot away from scraping a guardrail.

After a few times, we knew something wasn’t right, so I made an appointment with my neurologist. They did an MRI of my brain, which showed nothing. They also did an EEG to measure brainwave activity and check for seizures, and everything was supposedly normal.

So the doctor told me that Neurologically, I was fine. There was nothing he could do for me; but, he said, I was not to drive until we figured it out. 18 years old, I’m blacking out, he wants me to not drive, but there’s nothing wrong with me. I was crushed. I actually cried when the MRI was normal.

Next, the neurologist sent me to a cardiologist. He thought maybe I was having episodes of syncope. According to the cardiologist, that was unlikely, especially since these blackouts were happening while driving, and fainting episodes typically occur when changing position. He told me he actually didn’t think there’d be anything wrong with my heart, but he’d have all the tests run anyway, just to cover everything.

So there was more blood work, more monitors, a stress test, and even a sleep test. The sleep report showed nothing interesting, at least, nothing that interested us at the time. I found out later that the specialist that did the report mentioned I should consider having a nap test, but the cardiologist never mentioned it.

On the other hand, the tests DID find a heart problem. It was a surprise, but it was also lucky that we discovered it. We were able to get me on medication. Once again, other symptoms seemed to improve. I was less tired than before, and some of my asthma symptoms cleared up.

At the same time, I had found a psychiatrist who was helping me deal with my anxiety and depression. He was starting me on this new medication, Effexor XR, and it was working really well. I was feeling like me again. I finally went back to work full-time, was hanging out with friends, and the blackouts were going away.

Sometimes, at work, I would get this weird feeling, like I was going to pass out. Once or twice, I’d suddenly realize what I was writing was scribble, even though I thought I was writing a note. I would go to the bathroom and splash cold water on my face and stay there for a few minutes until I snapped out of it.

What I didn’t realize was that “few minutes” was actually ten or fifteen, and sometimes this was three or four times a day. I ended up getting fired from that job, but there were other issues, and since no one ever said anything, I never made the connection. Somehow, because it was at a desk and not in the car, it wasn’t clicking that these were the blackouts and more serious than I had thought.

A few months later, I met my boyfriend and moved out of my parents’ house. By then I was 21. Between being fired, moving, trying to find a job, and the new relationship, that year was stressful. I didn’t have the time or money to worry about my health. When I did find a job, I LOVED it. I loved the people, the company, the environment, and even my bosses.

Moving to a new town, I had to get new doctors. I told all of them about the blackouts and the testing and not having an answer, even though they weren’t occurring very often at the time. None of them had any questions or suggestions. I was still seeing my psychiatrist, and we upped my Effexor XR because I was having some major depression around my periods. Even that started to even out.

About a year later, the blackouts started coming back. At first, it was just here and there, maybe once a month. Then once a week. And I was EXHAUSTED when I got home from work. I couldn’t seem to stay up past 7 or 8pm. I still didn’t think too much about it. Everyone pushes themselves too hard, right? I worked in a corporate environment, did far more than my job description called for, prided myself on that hard work, came home and kept house, cooked dinner, did laundry, grocery shopping, all that stuff. No wonder I was tired.

I started being a few minutes late for work. I had to set my alarm earlier and earlier. Shower at night. Then it was napping in my car on my lunch break. Next thing I knew, I was sleeping away my weekends. I’d wake up for an hour or two here and there, throw in a load of laundry, maybe shower or eat, and go back to bed.
My boyfriend and I were constantly fighting. He’d come home from working 14 hours of hard labor, 6 or 7 days a week, and find me passed out with nothing done. To him, I was lazy, unmotivated, useless, disrespectful, and just plain mean. To me, he was the same if he couldn’t understand that I was none of those things – I just COULDN’T. I was more confused and upset by it than even he was. Who goes to the doctor and says, “I’m tired, I sleep too much, I can’t do my dishes?”
Months went by, and the blackouts were almost every day, and naps were almost every day, and my weekends were slept away. I hated it, but at the same time, I think I had accepted it. Until the sleep paralysis came. At least every weekend, like clockwork, I’d be waking up, and not able to move. I’d know I was awake; I could see the room around me, think fairly clearly, but not be able to actually get up. Sometimes I’d hear my boyfriend or some other familiar voice in the other room, even though I knew that person couldn’t possibly be in our apartment.

It was more frustrating than anything. The fear would come from feeling like it would never end, or from not having control of my body. A few times, I would try so hard to get out of it and move myself that I actually caused myself to have seizure-like muscle spasms. Once my boyfriend witnessed it, and he actually laughed at me. I was so scared, and he was laughing at me! I didn’t know whether to hit him for being such a jerk or be grateful he wasn’t scared and freaking out too.
I’d had sleep paralysis once or twice in my life before, but this was getting nuts. So I Googled it. Lo and behold, what is the word most commonly associated with sleep paralysis? NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.. All I knew about NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. was what I saw on TV. I thought of extreme cases, where people keel over in their dinner, or collapse from laughter, or can’t finish a conversation. Obviously, that was out.

But the more I read, the more things started to fall into place. I don’t collapse from laughter, but I do get a little weak. And I can’t really hold myself up if I’m really upset emotionally. Plus, there’s the fact that I slur my words and my eyes start to cross when I have those blackouts…wait, the blackouts! That’s almost exactly like that automatic behaviorPerforming regular tasks without being fully conscious or aware. May cook, clean, drive, or hold conversations and not remember. Almost always, the task is not performed entirely properly (notes are just scribbles, items put away in the wrong place, etc.) stuff!

I was actually excited. I joined an online support group. Actually, I joined several, just to read the patient stories. And every single one had something I could relate to. Young and old, there were these quirks that I found myself nodding at and connecting to my own life. The more I read, the more absolutely certain I was that NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. was what I had.

The next day, I called the nearest sleep center and scheduled the first available consult with the first available doctor. I didn’t mention NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. when we spoke, but we talked for almost an hour, and he took a lot of notes. His last question was to ask how all these symptoms were affecting me and my everyday life. I hadn’t really thought about it until then, but all of a sudden it hit me and I started tearing up. That was all the answer he needed, I guess, because he didn’t really wait for too much of an answer before having me schedule the sleep studies.

We decided not to have me stop my medications, not even my Effexor XR. My dosage is too high, and I rely on it heavily. Just trying to come down a level causes me bad side effects, and it would be months, if not years, before I’d be able to completely come off of it to get a clean study.

I slept fine overnight, and for all my naps. When I got home that afternoon, I went right to bed and fell asleep again.

When it was time to go over my results, it turned out the first doctor I saw had only been filling in temporarily and was not with the practice, so I had to see someone else. I was concerned since Dr. T had not been with me for the initial consult and therefore could not understand my symptoms and how I felt about all this.
I had no REM"Rapid Eye Movement" - the stage of sleep in which we dream. Named in reference to the actual movements our eyes make during this time stage sleep on either study, which was not unexpected considering my medications. At first, she was iffy because going right into REM"Rapid Eye Movement" - the stage of sleep in which we dream. Named in reference to the actual movements our eyes make during this time is a classic indicator of NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.. I immediately offered to start coming off my antidepressant, I was that sure it was NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.. She assured me it was unnecessary.

I feel asleep on my naps in 3 minutes, 4 minutes, 6 minutes, and 3.5 minutes. Pretty classic NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.. Then we talked about CataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. Although mine is mild, she did classify it as CataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes and decided I most certainly do have NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.. I was so relieved to have a diagnosis, a name for this monster that had been shadowing me for six years.

Then she asked me what antidepressant I was on. When I told her Effexor XR, she appeared almost excited. She told me that Effexor and Effexor XR are being used to treat CataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes and other NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. symptoms with excellent results. After talking some more, she and I came to the conclusion that being put on the medication most likely treated many of the symptoms until they became severe enough to breakthrough in the last several years.

The road since diagnosis has not been easy. Having a name for it does not make people stop thinking you are lazy or unmotivated. It does not make you less tired or irritable. The medications do not always work, and there are a gazillion combinations to try. There is no cure, and there are no miracle pills to help you through the day. I don’t know from one morning to the next how I will feel in a few hours. I hate planning things. I hate that I finally decided not to drive unless I really have to.
There are good things about NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes., though. Mostly, the people who have it. They seem to be an intelligent, loving, supportive, stubborn, butt-kicking crew. At least they don’t bug me if I need to take a nap.

After diagnosis, Jessica realized she’d been suffering symptoms of narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. from as early as four years old, and possible before that. She was finally diagnosed in 2008 at the age of 24. After her own struggle to be diagnosed and watching others go through the same, Jessica founded PlanetNarcolepsy.com, and is now working on AwarenessMatters.org, a larger version of PlanetN for sufferers of other rare and misunderstood conditions. She continues to live in Meriden, CT, with the same boyfriend (now fiance), their two dogs, and the oddities in her dreams.

Copyright secured by Digiprove © 2011 Planet  NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.All Rights Reserved