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Patient Stories – Pat’s Story

Keep Your Eyes Open For Those Of Us That Can’t

I am a 64-year-old female with narcolepsy. I have been living with the symptoms and being treated for narcolepsy for over 40 years. I now receive Social Security Disability.

Narcolepsy is a serious, life-long, potentially disabling disorder estimated to afflict more than 500,000 Americans, most of whom are undiagnosed! Although the symptoms of narcolepsy can be diagnosed with ease, both public and medical awareness is so inadequate that incorrect diagnosis and inappropriate or sometimes dangerous treatments are tragically common. Typically, a person who is diagnosed with narcolepsy has lived with the symptoms for 10 to 15 years and has sought help from 3 to 5 doctors prior to the initial correct diagnosis! The complaints of narcoleptics are often dismissed as groundless by friends, family, and physicians.

I was fortunate to be diagnosed by the second doctor I went to after about 3 years with the symptoms. During that time I was mistakenly treated for hypothyroidism. Narcolepsy can strike anyone at any age. In children, symptoms might include hyperactivity and bed-wetting. There is no known cure for narcolepsy; but with proper treatment the narcoleptic’s life can be greatly improved.

PRIOR to diagnosis, narcolepsy is suspect as the cause of many accidental deaths. For example, when the narcoleptic goes to sleep while driving a car, swimming, or operating machinery. Even after diagnosis, the symptoms may continue to exert a crippling effect on learning, memory, attention, and motivation. They have a pervasive influence that robs life of quality and accomplishment. Obviously, narcolepsy is a major national health problem that merits far more attention, education, and research than it and its victims have received in the past.

I once awoke while floating on my back in a swimming pool. It was fortunate that I was not diving into the water instead. Now I wonder when I hear of a “good swimmer” who has drowned.

Scientists discovered a genetic flaw deep within the brain which causes narcolepsy in 1999. It is a glitch in signals sent between cells. Instead of treating narcolepsy with stimulants such as amphetamines, which have unwanted side effects, it soon may be possible to find drugs that work solely on the brain’s hypocretin system. There is no evidence of a psychological cause. Many narcoleptics have wasted untold dollars on psychiatric treatment. At times I have become frustrated thinking it is all in my head. A support group is helpful because a person can see that their feelings are normal and ideas for coping can be exchanged.

It is suspected that narcolepsy or a predisposition to develop narcolepsy may be an inherited characteristic. I feel certain my grandmother had narcolepsy. (She died before I ever heard of narcolepsy though.) I have an uncle and a nephew who have been diagnosed with narcolepsy. There are other family members I suspect have narcolepsy to varying degrees.

There are wide variations between both the development and the severity of the symptoms of narcolepsy as experienced by different individuals. The symptoms usually appear independent of one another (sometimes years apart). In addition, the sequence in which symptoms appear is not uniform. Typically, the symptoms are rather mild at the start and increase in severity at a gradual rate over a period of years. However, symptoms are very unpredictable and may “ebb and flow.” I have had all of the symptoms of narcolepsy at one time or another and have experienced the ebb and flow over the years.

Excessive Daytime Sleepiness and Cataplexy are the two primary symptoms of narcolepsy. Either can become so severe as to completely disable. The other symptoms usually do not cause as serious problems, appear less frequently than the primary symptoms, and are often experienced by otherwise normal individuals. I was a senior in high school and could not stay awake for classes. Nor could I stay awake at home to read what I missed in class.

It would be impossible to determine how many undiagnosed narcoleptics are among the homeless population. Starting about 1982, for several years I was almost totally incapacitated after a doctor I saw for the first time took me off the medicine I had taken for sleepiness and put me on a medicine I later found out was only for cataplexy. (I have never had cataplexy severely enough to warrant taking medication for it.) It is important to find a doctor who listens, understands the symptoms of narcolepsy, and is familiar with the medicines available. They do not have to be a specialist. Sometimes family doctors are willing to educate themselves about narcolepsy and may be excellent at treating it.

Excessive Daytime Sleepiness is usually the first symptom noted. It is sometimes expressed as sleepiness, tiredness, lack of energy, sleep attacks, irresistible sleepiness, and/or an unusual susceptibility to becoming sleepy or falling asleep. Although this pathological sleepiness is present every day, the intensity varies throughout each day and the afflicted individual may only be troubled by or even aware of the more severe of the daily episodes.

Having narcolepsy has been compared to a normal person who has been totally deprived of sleep for 72 consecutive hours who is up at 3 AM trying to complete a boring task. Excessive Daytime Sleepiness becomes most obvious when, as is often the case, the person becomes sleepy or falls asleep at inappropriate times. For example, this might occur in the middle of a conversation, while sitting in a class, attending a business meeting, eating a meal, in church, reading, or watching television. I have gone to sleep talking on the phone, in youth choir at church, reading, nursing my baby, and often while watching TV. Once I went to sleep taking a “nice hot bath” and woke shivering in cold water.

Cataplexy is a rapidly occurring loss of voluntary muscle tone usually triggered by emotions such as those associated with laughter, anger, elation, or surprise. A “cataplectic attack” can range from a brief experience of partial muscle weakness to an almost complete loss of muscle

control lasting for several minutes. This can result in a total physical collapse during which the victim is unable to speak although they are still conscious and at least partially aware of activities going on around them. My cataplexy is most often triggered by laughter.

During these attacks I can hear and see what is happening; but I cannot respond. Afterwards, I remember what was said and done. Some people now have dogs that are trained to aid them during cataplexy.

Disrupted Nighttime Sleep refers to multiple awakenings that occur during each sleep period for any number of reasons. Often awakenings are accompanied by a craving for something to eat (especially sweets) and midnight raids on the refrigerator are common. While staying at the home of my brother, I got up at an early hour and ate ice cream. My niece came in while I was eating it.

Later, when asked about it, I had no memory of it. In fact, I wondered who had left the ice cream out of the freezer so long it melted around the edges. The report on my overnight stay at a sleep disorders center showed 11 awakenings of one minute or greater in length, including one trip to the restroom during the night. In addition, 60 micro-arousals of less than one minute (most lasting only a few seconds) were also noted. It is little wonder that I am tired all the time.

Sleep Paralysis refers to an awareness of the inability to move despite the desire to do so. It occurs as a person is falling asleep or waking up. I have burned my hand with steam from an iron. I knew that if I could move either hand I could stop the pain. Sleep paralysis almost always accompanies my cataplexy. Vital signs drop during these episodes and one lady awoke to find herself in a morgue.

Hypnagogic Hallucinations are vivid experiences that occur at the beginning or end of a sleep period. Any or all of the normal senses may be involved and the experience is often extremely difficult to distinguish from reality. Hypnagogic hallucinations are sometimes quite terrifying and may be even more so if accompanied by sleep paralysis.

Hypnagogic means “leading to sleep.” My most dramatic hypnagogic hallucination occurred when I was staying in the home of friends while they were out-of-town. I thought some men had broken into the house and heard them discuss what they planned to steal. I quietly called the son of my friends at about 3 AM to bring the police. He had lost his keys to the house so they forced entry. When the police told me they had checked all the gates, doors, closets, and under every bed, I realized it had been a hypnagogic hallucination. I explained and apologized to them.

Automatic Behavior refers to doing things (usually of a somewhat routine nature) with greatly reduced awareness of, and intelligent control over, the activities involved. For example, I went to sleep typing and my fingers continued to move. What I typed was just gibberish; but I had typed it while asleep.

A work of caution to those who have narcolepsy and who are about to have surgery. Your anesthesiologist should be advised of your narcolepsy and asked to give SERIOUS consideration to the fact that it is difficult to bring many narcoleptics back out from under anesthesia. In fact, it has been the cause of death in some cases. Be sure the anesthesiologist has taken you seriously before you allow any surgery to be done. I experienced difficulty coming out from under the anesthesia so the anesthesiologist considered this and used a spinal block for my next surgery.

I have written this in hopes of bringing awareness of narcolepsy and its seriousness. Perhaps you or someone you know have symptoms of narcolepsy and may be encouraged to seek medical help for diagnosis and treatment.

Thank you for taking the time to read this and for anything you may do to help those of us with narcolepsy.

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Comments (1)

  1. Hi,
    Thank you for the information.I am an RN of 30 years,but have not worked since May2013. I was working as a flex nurse at an endoscopy center that downsized due to many of the Drs. leaving to work for Kaiser.I have a multitude array of autoimmune issues,but I was also diagnosed with Narcolepsy in 2008. I was put on Nuvigal and after about a year,I had to stop taking due to S/E. I am now being worked up for MS after a routine visit for my thyroid. I never really thought of what my Narcolepsy has done in my everyday life.I am working with a disability lawyer as I am very symptomatic with some of my autoimmune issues…I never realized my Narcolepsy has caused issues I put under thyroid problems.I am only 52yo and to look at me you would say she’s fine.I am going to make sure my lawyer stresses this disorder as I am sure like others I may be denied.I would be intererested as to your thoughts concerning this issue as it relates to my work.Sincerely,Nancy

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