Patient Stories - Chuck's Story

Coping with Narcolepsy and Sleep Apnea

Life in the School Years

As a pre-teen, I was always 'tired'. Living in the Ohio Valley of the US Midwest -- allergy capital of the country -- my tendency to be tired was attributed to my high level of allergy sensitivity, as indicated through skin allergy tests. I accepted this because I was young and it was not in my mind to consider any other possibility. Nor was I old enough to disagree with my parents or a doctor.

I trudged through school, getting low marks throughout the school year, only to score extremely well on the annual standardized testing. Per the guidance of school administrators, I was run through various cognitive and psychological evaluations. All said I was fine, smart, and able minded. I never felt I was otherwise, but personally could not understand why school and I did not work well together. I did, somehow, manage to graduate the year I was expected to. What a relief!

The following year I started attending the local University. Since my mother was a career employee at the University, I was lucky to have completely free tuition and discounted books. What more could one ask for? I was happy to be able to go to classes on a less rigorous daily schedule.

I managed fairly well at first since most of my classes were scheduled almost one after the other. The second semester was a different story. My schedule was spread over various times of day throughout the week. I rarely made it to my 8:00 am class, no matter how early I went to bed. At the sight of my mid-term grade report, I ended up dropping out, much to my mother's, and my own, disappointment.

By this time, I had gone through several short-lived jobs, much like others in college do. I just figured it was normal for jobs to change with the semester. Now that I was not going to be in school, all I needed was a half way decent full time job. I found one, but after about 6 months the newness wore off and I began to slack at my duties. This ended up being a pattern that I followed for years to come.

I even tried another attempt at attending school at the University, only to find failure once again. I found that 'altering' my mind was the only way to forget about the failures I was incurring. I was a good person, but with the work history of a junkie, literally. The only person I knew of that had a job history like mine was a well-known major drug abuser. This only let me feel more let down by myself. I trudged on for many more years in this pattern.

Looking back after several years of diagnosed Narcolepsy, I often have realizations of events in my teens that now have some sense to them, but which were not really explainable at the time. I often feel that my histamine levels have a close relation to my EDS (Excessive Daytime Sleepiness) levels. I also think that Narcolepsy is why I was not interested in very many sporting events as a young kid and in my teen years. I think my academic potential was affected by both apnea and narcolepsy, in high school and in college.

Work and Marriage

Finally, luck came my way, as I met, fell in love with, and married my wonderful wife. It was a fun and happy time for us both, but that changed about 11/2 years into our marriage, when my wife became pregnant with our first child. I was both very happy and yet frightened by this large change in our future. To this point, things were going well, but the short-lived job pattern was quite consistent.

This lack of my ability to maintain secure income for my family induced a stress within me that opened the door of Narcolepsy wide open, from the less intense symptoms I had lived with throughout my life. Unbeknownst to me, the real struggle had only just begun.

At this time I had a major increase in snoring, separating my wife and myself from one another. I still woke the house often, roaring through two closed doors. It was when my wife was home from work awaiting birth of our son, that she saw someone on Oprah Winfrey.

He described himself as if he were me. Upon this revelation, I consulted the Sleep Disorder Center at the University of Louisville. My lack of employment for once was to my advantage, as I qualified for no cost services and treatment under an indigent care program. This allowed the doctor to do all he needed with no insurance company to say he could not.

I was diagnosed with Sleep Apnea, which was quite definite. I also was told I might have Narcolepsy, but would need to be treated for my apnea; then more testing for Narcolepsy in the daytime would be in order. I used CPAP religiously. I had the Multiple Sleep Latency Test (MSLT) on 3 separate days, and all tests produced a confirmed diagnosis of Narcolepsy. "But I was feeling so much better!" I thought.

Things went on in the 'improved' situation for a few months. Then I was temporarily relocated to work elsewhere, as the factory I was employed at was on a lengthy redesign shutdown. I was operating a forklift, and went from a busy pedestrian workplace, to one that had only 10-12 forklifts and no pedestrians. I began to feel the effects of the calmer, and much warmer, workplace.

It was when I fell asleep writing, sitting on my running forklift with only my foot on the brake keeping me stopped, that the Narcolepsy had its first negative effect in my life. I had apparently slept for close to 45 minutes. The break bell had awakened me, but in my mind, it was only about 10 minutes since last break. When asked, I had to tell my boss why I had not gotten my work done. I was told I should go home and 'sleep it off'. I was then called and told I was being let go. How could I have ever imagined that was coming?

Becoming "Mr. Mom"

Since diagnosis, I have fought the sleepiness of Narcolepsy with various stimulant medications, only to have my disposition erode to that of a mean person no one would wish to be around. Once I accepted that I was unable to be 'normalized' with medication, I took my son out of preschool, which cost almost the amount I could manage to earn in a week's time.

I decided I would care for my own child, and soon found it to be the best thing I have ever done. I was able to exist in my home, in a low stress environment, and was able to care and teach my son in readiness for Kindergarten and beyond. The reward of being a "Mr. Mom" has made me feel more productive than any of the jobs on my employment history 'rap' sheet.

We now have a 1-year-old son, and our oldest son is now in the first grade, sponging up anything that is taught to him. The decision to have a second child was a long and hard choice to make. We have no regrets, and I always know that if I have a bad day, there is probably someone somewhere that can make my problems mild by comparison.

Living with Two Sleep Disorders

My mind is like a computer in some ways. If my brain sits idle for a while, my EDS is like a power saver that shuts things down until something comes up for the brain to do. I know that this is relative to the Narcolepsy and micro sleeps, instead of the apnea. I tend to feel tired when the apnea is not being treated effectively (i.e. I have a cold and can't use the machine for risk of sinus infection). The EDS of Narcolepsy is different in the sense that I can feel well rested in my body, but my mind is sleepy. I can close my eyes and feel the difference between the two.

My apnea is now controlled with strict usage of CPAP, to allow for the best evaluation and control of the Narcolepsy. I am about 98% Cataplexy free. My Cataplexy is only partial and affects my face and neck, and sometimes my left side. I currently use almost no meds for the control of EDS. I do nap often with the baby, so I can manage things with those naps fairly well.

I am working on meditation more, if I can get the time and it is quiet; it's not always easy to find them together. I am lucky, as my family pretty much supports my situation and how the family arrangements are working out. I can play with my kids all day; what more could one ask for?

If you would like to share your unique sleep story, please contact us at: info@talkaboutsleep.com
Or submit your story in a Microsoft Word or Text format to: info@talkaboutsleep.com