You Are Not Alone
The Onset of Narcolepsy
One day in late March, 1989, the term narcolepsy forever became a part of my everyday language. I had read of it in my mid-teens, in an Ann Landers column; a woman with narcolepsy wrote about the trials and tribulations of falling asleep uncontrollably.
As if that weren’t enough, she also experienced cataplexy, the sudden loss of muscle tone, that caused her to fall to the floor repeatedly throughout the day. I remember saying to my mother, “You know when I laugh hard, I say I’ve ‘lost my powers’? Well, what happens to this lady is similar to what happens to my hands and arms.”
While I had compassion for the writer’s affliction, I considered myself fortunate that my problem was “different,” minor, and even funny to my family and friends. Little did I know that was my first glimpse into the future.
My first symptom of narcolepsy was cataplexy, beginning at age 7. My younger brother had caused a minor catastrophe beside the table where I was doing homework. Knowing he would be in trouble, he was ready to dodge the arms of my mother. A chase around the table, my brother well in the lead, followed. I laughed so hard it hurt.
My brother finally caught (mothers are so clever; she just stopped dead and let him run into her!), I was told to go back to my homework. I could barely pick up the pencil with my limp hand. Gripping it to write was out of the question. This deadness lasted for minutes. (In my mother’s version of the story, this was a ploy to get out of my homework.) In my teens, this sensation would occur in my lower arms as well. It continued this way for more than 20 years.
The first recollection I have of daytime sleepiness was in 9th grade accelerated math class. I was an honors student, and math was my best and favorite subject. But to me, the teacher went sooooo slow. It was intolerably boring, I reasoned, and that’s why I got sleepy. Although I was always busy with homework, babysitting, playing guitar, giving lessons, delivering newspapers, and leading the ‘folk group’ that provided music on Sundays at my church, I did get enough sleep.
My grades didn’t suffer for my sleepiness, and I never even mentioned to my parents that I was having a hard time staying awake in math class. This problem would continue through high school. In my first semester of college, when I did manage to wake up, I routinely fell asleep in my 8 a.m. accounting class (my major!). I learned not to take a class before 10 a.m., after several cups of coffee took effect. Since I lived on campus, I took one or two evening classes, so that there was no need for back-to-back classes. I would often take a nap in the afternoon. I was compensating for my problem, without even realizing it!
After college, it was out into the work world. My first – and only – job was with an international accounting firm in NYC. There was a fair amount of overtime involved in my job during the first two years, but being in NYC was exciting, and the work and people were stimulating enough that I had no problem staying awake at work. I had no problem staying awake on the train during my commute.
I used the time to study for the CPA exam My workload increased significantly as I moved up, and there were periods of heavy-duty overtime. Specializing in the tax area, there were deadlines every three months. One Friday in my second year, I went to work, and except for going home twice to shower and change, four of us worked straight through Monday afternoon. That was perhaps the worst, but 60 and 70 hour weeks were common. Still, I loved the work and the clients. I was 100% committed to my career.
I married in 1986, and had my first child in 1988. My division head and I had agreed that my maternity leave was a good opportunity to turn my old clients over to less senior people, and to take on more involved clients when I returned. “Involved,” as it turned out, referred more to the time requirement than to the complexity of the work. From August, 1988 to the end of March, 1989, I had deadlines the 15th of every month. I also had an infant, so I couldn’t just drop when I got home.
I averaged four hours of sleep on the good nights. My sleep became disrupted. By January, I was having bad dreams frequently. One night in mid-March, 89, I experienced sleep paralysis as I was falling asleep. I panicked. “What if I stay this way?” I thought, awake and aware, but unable to even open my eyes or speak. I came out of this state after 30 seconds or so, but it was a warning of what was to come.
For a couple of months, isolated parts of my body had been giving out momentarily: knees, jaw, neck and even back. I didn’t understand it, but I also didn’t have much time to think about it. I remember it happening when I said something amusing to a coworker. It also happened as I was frantically rushing down the subway steps, knowing that if I missed that train to Penn Station, I would miss my commuter train to Long Island. Luckily, I caught the railing and managed not to tumble down those filthy concrete and steel steps.
On Easter Sunday, I had the BIG one. My sister and I were cleaning up after our meal and talking. I tried to pull a fast one on her, she caught me, and we both started laughing. The next thing I knew, my legs started giving out. I leaned onto the counter, my body out of control, moving up and down like a sprung spring, and slowly slipped towards the floor I couldn’t talk. It took a few seconds for my sister to realize I wasn’t up to my usual antics. She called for our husbands to bring a chair, and they maneuvered me into it. I recovered shortly, only to realize that something serious must be wrong with me.
I was luckier than most. Studies indicate that it has taken up to five different doctors and fourteen years to be properly diagnosed with narcolepsy, once symptoms present. True, I had once seen a GP for low blood pressure (not unusual in narcolepsy) and fatigue. He told me I didn’t exercise enough. And I had seen a psychologist once, at the urging of a friend, for the dreams that caused my to yell, scream or laugh in my sleep. He told me it was stress-related, and advised me to practice self-hypnosis. I didn’t buy it. I’m an extremely patient person. It takes much more than the stress of my job to get to me. I loved my work. Besides, I knew the hypnosis was sure to put me to sleep!
I thought my recent muscle problems might have something to do with the anesthesia I had gotten during labor, so I called my obstetrician. He thought it unlikely, suggested perhaps I had a pinched nerve, and referred me to a neurologist. I scheduled an appointment immediately.
At the visit, I described these strange symptoms of losing muscle control. I also threw in the few times I had awoken and been completely paralyzed for a short while. He began to ask questions about my sleep quality, daytime sleepiness, dreams, and whether I had had any hallucinations. I told him I had always had intense dreams, always in color, and that I was often sleepy during the day, but it was to be expected, given my work and home commitments.
I told him that for years I had difficulty staying awake while driving distances. Diagnosis: narcolepsy! (This was confirmed in a sleep study later on that year.) The good news, he said, was that there were medications to treat these symptoms. I was relieved, and left his office on a lighter note with prescriptions for imipramine (a tricyclic antidepressant) and cylert (a wake-promoting medication).
Over the next fourteen months, the doses of these initial meds were increased. Still, I was not getting enough relief to properly carry out my job. In retrospect, I realize that my symptoms were still worsening, but I reached a point where the side effects of these medications far outweighed the benefits. I was switched to vivactil (another tricyclic) and Dexedrine.
Still, my symptoms interfered with my everyday living. My sleep was terribly disrupted. I would wake up after three hours, feeling wide awake. I would get up, only to feel overwhelmingly sleepy within several hours. I would arrive at work feeling so sleepy I couldn’t concentrate. I began falling asleep on the train and regularly missing my stop. One Saturday morning, I barely escaped a head-on collision with a fire engine because I was falling asleep behind the wheel. This, with my son was in the back seat!
The last straw was the day I got off the train, heading for work, and left my briefcase behind, something I had carried every work day for 9 ½ yrs. I had lost it. After all that hard work and career planning, I had to face facts. My narcolepsy had made it impossible to continue working. Two months later I took a long-term medical leave of absence from my job. Four months later, I was approved for both private disability, followed a year later by the approval for Social Security disability benefits. I have not worked for pay in almost ten years.
My life today is dramatically different from the life I expected to be living. I gave up a lot, but I’ve also gained much. I’ve had to learn to live with narcolepsy. I take an afternoon nap every day without fail to ward off sleep attacks. I have been taking effexor (a new generation antidepressant) for the past six years, which has completely alleviated my cataplexy. I have a new appreciation for being able to climb stairs without the fear of falling, and swim without worrying about drowning.
I am now an at-home mother, with two boys ages 12 and 7. Each of them has learning disabilities and difficult behaviors. I often think a higher power gave me these kids to keep me awake! I volunteer at three different schools, which helps me stay in touch with teachers and other adults. I have made an effort to learn as much about narcolepsy as possible.
Since signing on to the internet, I’ve discovered a world of support and information out there, and many really great people who also happen to have narcolepsy. I’ll admit, my house would be an excellent Merry Maids training grounds; housework is too boring! I’ve volunteered for several genetic studies and a spinal tap at Stanford’s Center for Narcolepsy (the leader in narcolepsy research).
I am currently participating in an FDA drug trial for Xyrem, an investigational drug that has been shown to significantly reduce all symptoms of narcolepsy, most especially cataplexy. I believe that if we want a better life for ourselves, we must be involved. While there is a wide range of functioning among our group, it is important that we do what we can.
There’s so much to be done in our awake time: volunteering for research projects or drug trials, educating the public on narcolepsy and all sleep disorders, participating in letter-writing campaigns, and helping undiagnosed or newly diagnosed people with narcolepsy to learn about and cope with this disorder.
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