Lindsay Ropiak
April 1, 2010

As a person with 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 have a hard time with large texts. That’s why, as I write this with other PWNAcronym for "People with 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." in mind, I intentionally keep this brief, though as detailed as I can recall. That’s right, difficulty with memory may make my story tough to follow, possibly even inconsistent. Maybe that’s the excuse my doctors can use.

I don’t mean to sound harsh. Or spiteful. Though I have residual anger toward the individuals who continued to judge me, label me and make me feel crazy. It took me nearly six years to get the answers we all deserve. But compared to some, I know I’ve had it easy.

While my mother asserts that “floppy baby syndrome” and “failure to thrive” were signs 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. even in infancy, I first really began to notice symptoms after puberty. About that time, severe daytime drowsiness started in. I recall very clearly spending my 13th summer sleeping most of the afternoon, and being called some wonderful things by my family, who were busy constructing our house. I had no energy for that. In fact, I slept through hammering and electric saws running just a few yards from my sleepy-self.

Looking back, I see more details emerging of what were signs of N that I hadn’t thought of. I tried to participate in Cross-Country running my sophomore year; my dad was the coach. I had no stamina. I was in pain, I felt weak, winded. I took more than three times longer than my teammates. For that reason, I never participated in meets, but continued to practice because I enjoyed the activity and bonding with my father. He waited for me to finish. I tried to run a meet just once. I rounded the first corner and felt so awful, I couldn’t describe it. I saw my father and bee-lined for him, collapsing at his feet. I don’t remember much then, I know I was conscious. I felt sick to my stomach; it might have been the embarrassment.
When I was seventeen, I can recall my first 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.) episode. I knew I had been at work at the grocery store, but I had no memory of closing my drawer, counting it accurately and driving for fifteen minutes to get home where I then put myself to bed and woke up confused the next morning for this reason. I was concerned, but no one thought anything of it.

At eighteen, I had my first 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 episode. I was frozen, I could not speak or move. I could hear, though. And I could hear that my boyfriend didn’t care that I had suddenly stopped making out with him and didn’t respond at all. He played video games. When asked later by physicians why I never sought medical help after that episode, I couldn’t answer them aside from the fact that if my boyfriend didn’t make a big deal about it, maybe it was more common than I thought.

That summer went, and I started college in the Fall of 2003. I lived in a dorm on a campus nearly three hours from home. I took a full course load. I was lonely and stressed. And often I would find myself feeling weak, my hands would curl to my wrist, my legs felt floppy, my head wouldn’t stay straight…I’d trip over my tongue and slur my words. It was usually just a few symptoms at a time. No one thought I was having a stroke or anything.

Seeing the doctor on campus, she tried to listen. She tested me for diabetes. She tried me on Zoloft; Zoloft turned me into a zombie. I had no emotion, I had no cares, I was monotone. My mom freaked over the phone and instructed me to flush them. I did. My new boyfriend (now my husband) brought me to my family doctor. We told him it sounded like my symptoms were seizures- I looked like I was convulsing sometimes… I’d curl up, or I’d shake, or I’d zone out. He was wonderful: he hit me in the head and yelled “Cured!” in my face. I nearly cried. Or hit him. I’m surprised he didn’t trigger a 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 attack.

Over time, I pestered the doctors to listen to me. To re-evaluate my symptoms. He called it panic. He gave me different medication. Then they called it depression. Then anxiety disorder. Then they decided to test for epilepsy. When the reports noted some unusual activity, they also pretty much said it looked like I was faking a seizure when “induced” with saline. I say it was because the guy freaked me out so much I went into a CCataplexyCataplexy-attack, and back in and out again to cause the shaking episode I was so used to having.

When epilepsy was ruled out, they determined it could only be pseudo-seizures. They didn’t know what was causing “seizures” but it wasn’t electric brain activity, and deduced that emotional stress was the root of it all.

Having already found myself at the lowest confidence and energy levels I have ever experienced, I had been out of school and work for a while. I could tell them that I honestly had no stressors in my life to speak of. I spent most of my time asleep. This, of course, only strengthened their case for depression disorders.

Months of counseling did nothing. I had nothing to talk about. I did nothing. I had only a super-supportive boyfriend/fiancé and my pets to keep me company. I had no energy for friends, and most had abandoned the notion of trying to hang out with me any more. My family lived too far away and could not bring themselves to understand what I was trying to explain to them about my condition. I tried to give in to sessions, I tried every med they put me on. And finally, some hope glimmered from this dark part of my life.

At the psychiatrist’s office there was a nurse practitioner who oversaw my progress. Listening to my symptoms once more, he suggested taking a look at a new cause for my problems and suggested having a sleep study done to determine if a sleep disorder could be a treatable diagnosis for me.

My sleep study revealed that I get about 20% of the restful sleep I should. Most of that, they thought, was due to apnea, which was responsible for about 50% of my rousing. The other 50%, at the time, must have been unimportant, because they did not look into it. They gave me a CPAP, but even after a few months of using it, the machine could not work for me because of complications with my facial structure from Pierre-Robin syndrome. I did not receive a follow up appointment. Years of being brushed off by doctors by this point taught me not to pursue it.

At last, in September of 2008 I saw a new family health care provider in my hometown. My mother and grandmother had seen this family nurse practitioner and really had respect for her. With nothing to lose, I decided to go see her.

Around this time, I had begun researching my symptoms and putting the pieces together myself. I was becoming very confident in the idea 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. and 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 explained nearly every detail of this life-defeating problem I had. I kept a log of my symptoms. I printed sheets of FAQs. I brought it all to her.

With some thought, my angel decided to let me try Ritalin with a tentative diagnosis of N and CCataplexyCataplexy pending confirmation from her supervising doctor. I testify to you, dear reader, this woman gave my life back to me on that day.

Ritalin, although not as effective as the Nuvigil I am currently on, literally woke me up. I took it in the morning and didn’t need to sleep again until two. After a few weeks, she told me to take it again at 2. I could stay alert until 6. By then, my classes were over and I could go home and take a nap to finish my night off. I could think. I could read. I could write again. I made it to the Dean’s List and earned my Presidential Achievement Award a semester later for two semesters of a 3.0 GPA or higher. I kept my job, which I still have a year an a half later. With renewed confidence, I switched my major only one more time: back to the one I wanted to pursue to begin with, the one I wanted to finish as a promise to myself and to show the universe that I had my control back.

As of March, 2010, I have moved from Ritalin to Provigil and then to Nuvigil. Nuvigil has some side affects that the Ritalin didn’t, such as stomach aches and some jitters, but it keeps me awake longer and more alert and productive. We have talked about trying stronger doses, more often of Ritalin again if my tummy continues to hurt, but we will wait on that.

I have managed to raise my GPA from a 2.6 in 2004 to a 3.0 this semester. I have been accepted into a Graduate School program (a goal I never thought I would achieve), I will be receiving my Bachelor of Arts degree next Spring. I hold a position as a tutor in the Writing Center on campus. I have maintained a part-time job as an administrative aide for a non-profit organization housed at the University. I am married. I have a home, renovations in progress.

Above all, I have hope. I feel like I can dream again. I don’t know if I’ll ever get back to working full-time. With the help that the Social Security Administration will be giving me after finally winning my case at a hearing this winter, it’s a little less of a worry. I never want to rely on that. And seeing the progress I’ve made in recent months, I can’t say that I will have to. I have dreams to overcome this and fill the roles in life I see myself in. I want to have a career. I want to be a mother.

With continued conversations and trials with my trusted health care provider, I really feel like I have a chance. At the same time, I am trying to both accept that I have limitations and overcome the challenges I face every day. But I think it’s possible to find that balance. But it takes patience and strength every day.

Thank-you to everyone who supports and helps me with 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. and other areas of my life. Even though it took a while to understand, my family and friends care and listen and I really appreciate it. I love the people on sites like this and Daily Strength who share in my hardships and successes as we work together for education, awareness and support.

Lindsay Ropiak is a 7th-year English student at the University of Maine. She is 24 years old and was diagnosed with 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. in 2008 after symptoms led her to seek medical advice in 2003. She enjoys anthropology, sociology, psychology, philosophy as well as her language and literature studies. She lives in Maine with her husband, three cats and two ferrets. She loves funny movies, pretty music and fuzzy creatures– anything that can make her smile.

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