Narcolepsy: My Story

I vowed not to fall asleep at my mother’s funeral. When I walked down the church aisle that morning, the rush of emotion and the stress of the last week of my mother’s final illness struck me so hard I felt light-headed. I got that old familiar sensation that always precedes an attack. I held on to my husband’s arm and tried to fight against the buckling of the knees and the buzzing sound in my head. I was not going to have a cataplexy attack at my mother’s funeral Mass. As we made our way to the front pews, I thought of the scandal that rocked this church several years before and thought, “That could have been one of my sons.” Good. I was back to reality. I was succeeding in fighting the cataplexy attack.

My sister stood up and walked to the altar to deliver my mother’s eulogy and I marveled at how she was able to do so without collapsing on the terra cotta tiles. She told the story of our parent’s love with an eloquence and composure that was long lost to me. After that, I blacked out. Well, not exactly “blacked out.” I had a narcoleptic sleep attack.

Narcolepsy is a neurological illness that causes sleep attacks, cataplexy, sleep paralysis, hypnogogic hallucinations and excessive daytime sleepiness. In a recent article in the Huffington Post, Rubin Naiman, PhD., accurately describes narcolepsy as “… a condition in which the boundary that ordinarily segregates waking consciousness from the world of sleep and dreams becomes exceptionally permeable. For most of us, sleep is largely walled off during the day. In narcolepsy, sleep readily slips into and out of waking consciousness.” (Rubin Naiman, 2012)

There’s more to the illness than just an abnormally high need for sleep. Narcolepsy is a thief of emotion, a scrambler of thoughts, and a jailor of its victims. Reality and hallucinations are intertwined in a dubious dance that leaves the narcoleptic skeptical of his or her own take on reality. Therefore, on the day of my mother’s funeral I was consumed with fear that I would have a cataplectic attack in front of a churchful of people. Any strong emotion can bring on an attack of cataplexy and I wanted this to be a day to honor our mother, not a day to draw unwanted attention to my illness.

Dr. Naiman writes that cataplexy is “…a sudden intrusion of severe muscle weakness (normally associated with nighttime dreaming) that is triggered by strong emotion….” (Rubin Naiman, 2012)[i] So, over time, many narcoleptics strive to control their emotions to avoid such attacks in public. I considered myself a master at the game of hiding my illness from my work colleagues and suppressing my emotions in public. I avoided situations that might put me at risk by quelling my need to be funny or clever. I knew that if I just “thought” of something amusing to say during a conversation, it could bring on an attack and I might fall to the floor in front of my colleagues.

I wasn’t too successful in hiding my sleep attacks, however, and I often jumped out of my seat when startled by someone coming by my cubicle to say “hello.” Many of my co-workers knew there was something wrong with me but they ignored my reaction upon being awakened. I had sleep attacks everyday but I was still able to get my work done.

Out of the blue, I noticed that I was having more and more disturbing incidents at work; picking up the phone and talking while I was asleep, continuing to type while I was asleep (running the risk of sending gibberish across the network), unable to remember details and make important deadlines, etc. What the heck was going on? I had been taking Provigil (the most commonly prescribed medication for narcolepsy) for years and considered it to be a wonder drug but it wasn’t getting the job done anymore! I decided it was time to get further help.

My sleep neurologist prescribed all manner of amphetamines and new generation medications to help me stay awake and alert at work and help me get deep restful sleep at night. I underwent a sleep study in a laboratory setting and was prescribed a CPAP device. I also started an exercise program and weight loss program. I figured the exercise would allow me to release stress and the weight loss program was much needed after going through menopause and gaining all that “change of life” poundage. To my surprise, my symptoms worsened. I was experiencing more sleep attacks at work, which then provoked anxiety attacks. Or, more precisely, “panic attacks.” I felt like I was dying. I felt like my brains and my heart were going to burst out of my body. Then, I started to believe that my co-workers knew I was getting sicker and my superiors were starting the process of eliminating my position. Yes, paranoia. Even though I recognized that I was paranoid, I also knew that my company was known for reorganizing people out of jobs. However, that wasn’t my only fear. The worst part of this insidious illness is the daily humiliation I endured as my symptoms exacerbated.

Imagine being at work and losing whole chunks of time because you fell asleep at your desk. Imagine yourself engaged with a group of people on a conference call and not knowing what to say when you are called upon to answer a question because you were sleeping. Imagine if you had to carefully monitor everything you said in a group to avoid having an attack of cataplexy. Imagine looking at someone you just dreamed about (hypnogogic hallucinations) and not being able to determine if the encounter was real or imagined.

The general population does not know how severe the symptoms of narcolepsy with cataplexy can be and, frankly, why should they? Only 1 in 2,000 people in the United States are diagnosed with the illness. Narcolepsy is a silent illness and those who suffer from it are often embarrassed by the bizarre symptoms. The “narco” conjures thoughts of narcotics abuse and many people confuse the symptoms of narcolepsy for laziness, poor sleep hygiene or mental illness.

Aside from my work worries, I began to worry about the physical and emotional toll narcolepsy had taken on my family, which cannot be measured. Even in the years that Provigil worked, I was functioning at work but I paid a price at home. I needed to nap as soon as I got in the door and weekends were reserved for “catch-up” sleep. My children grew up with a mother who wasn’t always present because she was asleep on the couch. They witnessed me trying to free myself from sleep paralysis, often crying out for help in garbled sounds. I remember one particular incident that scared my husband and children so much that I vowed I would never get that angry again. One of my boys was being antagonistic that evening and my patience was wearing thin. I started yelling at him and my legs started jerking uncontrollably. I collapsed on the floor, unable to speak, my ears buzzing, while my husband tried to help me. Even after I regained muscle control, I couldn’t organize my thoughts or keep my eyes open. This was the first time that anger had ever brought on an attack. I was used to falling down laughing. I was used to falling down crying. This was different, this was scary.

After my symptoms worsened, I decided to file for short term disability in an attempt to get my symptoms under control and return to healthier daily functioning. I tried every medication in my sleep neurologist’s arsenal to combat my daytime sleepiness. I simply could not tolerate any amphetamine-based prescriptions and I had an allergic reaction to Xyrem, a drug that helps narcoleptics sleep without dream intrusions. I went to a sleep therapist, a psychiatrist, and another neurologist. Nothing worked. My company was unable or unwilling to let me work from home or provide a place for me to nap during the day, so I was eventually let go. Unfortunately, I had to hire an attorney to represent me because the insurance company refused my claim. They informed me that I had to undergo a Multiple Sleep Latency Test (MSLT), the gold standard for diagnosing narcolepsy. My diagnosis was proven by the MSLT and, yet, I was once again blindsided by the insurance company. They wanted “updated” medical files. What it really comes down to is simple harassment, because they can get away with it.

These days, I surround myself with people who love me and literally pick me up when I have a sleep or cataplexy attack. I try to reduce stress by meditating and sleeping when I have to. I pray. I take walks. I take it slow. I try to find the humor in my situation whenever I can, and often “blog” about my exploits so other narcoleptics don’t feel so alone. I interpret my dreams, but don’t hold on to them. I believe I have embraced my spirituality in a deeply satisfying way. I don’t know why my symptoms worsened over the years but I can guess that narcoleptics over fifty share some of the same issues I have experienced. My symptoms seems to be getting worse as I age.

Now and then, I think with regret that I had to take a leave of absence and, eventually, accept termination from employment. It seems so unfair when I still have so much to offer. But, having any chronic illness seems unfair to the sufferer.

Some months before I actually took my sick leave, I was on a conference call about a difficult employee situation and the manager on the other end of the wire was droning on and on. I fell asleep and hallucinated that the employee in question was standing outside my childhood neighborhood’s candy store. I say “hallucinated” because I could still hear what my manager was saying, but I could clearly see the employee we were discussing standing before me at an old-fashioned candy counter. Suddenly, I was asked for input about this difficult employee. I tried to rally myself, “Oh, you mean the guy who owns the candy store?” Dead silence. At that moment, I must have woken myself up by speaking. I muttered into the phone, “I’m sorry. I was thinking of someone else.” I still think it’s kind of funny.

Rubin Naiman, P. (2012, 8 7). Narcolepsy: What We Should All Know. Huffington Post .

Thank you for posting this, it brings home the true reality that Narcolepsy Sufferers endure.

Thanks, Jackie! I'm just tried to show others that this is my reality. If it helps one person, then it was worth effort. It took me a long time to write.

this was so powerful i shared it on the Ben's Friends blog:

Thank you, Scott! I appreciate your kind words.