SPRINGFIELD, Mass. (WGGB) — It’s a disease that affects an estimated three million people around the world — but more than half will never be diagnosed.
We’ve seen portrayals of narcolepsy in movies and television, but what is living with the disorder really like?
Teenagers need a lot of sleep, but as East Longmeadow native Danielle Bousquet entered adolescence, she realized she was catching a lot more z’s than her classmates.
“I used to get up in the morning and take a shower and just lay down in the shower and fall asleep for a half hour, because I just couldn’t get up in the morning,” Bousquet explains.
And for 12 years, those symptoms got progressively worse.
“When I got into my Masters degree, it was probably closer to 14 to 18 hours a day that I was sleeping,” Bousquet says.
Doctor visit after doctor visit yielded little answers. It wasn’t until she turned 24 that she was finally and properly diagnosed.
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.
Invasion of a Sleep Disorder
The Early Years…
My Narcolepsy crept up silently and without much warning when I was in my early thirties. I have no memory of any symptoms during my childhood, teens, or even my twenties. I was always on the go and didn’t let any grass grow under my feet. In 1991, I was a single parent working third shift at a ductile iron foundry. It was hard work, but I was making good money and things were looking up…until 1993 when I developed asthma as a result of chemical exposure.
Little did I know then how quickly and drastically my life was changing! I was off work for 17 weeks due to the asthma, I lost my father during the time I was off, and then the foundry didn’t want to put me back to work. Workman’s Compensation sent me for an Independent Medical Exam with a Sleep and Respiratory doctor about an hour away.
From Fatigue to Cataplexy: Dealing With My Narcolepsy
Looking back at my childhood, I can honestly say that I do not recall any Narcoleptic symptoms. I was in my late twenties when symptoms first developed. I found myself falling asleep at work while doing the nightly paperwork, when I was sitting for extended periods of time, and while driving long distances.
I didn’t think anything of my sleepiness; working 60+ hours a week, it made perfectly good sense to be so tired. As the year went on, my “falling asleep” episodes continued to increase, and I began to also have Hypnagogic Hallucinations, Micro Sleep, and Automatic Behavior. I felt as though I had lost control of my life.
Hallucinations happen as you are falling asleep; they tend to be very scary for most. What is so outstanding about them is that they involve our senses, typically the senses of smell, hearing, feeling and even seeing.
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.
Living with Narcolepsy
I read about cataplexy in a Reader’s Digest magazine, and suddenly realized that something that I thought was normal, as I grew up with it, was not normal at all! My curiosity stimulated, I looked up the term “cataplexy” in my psychiatric handbook.
Surprisingly, it was listed under narcolepsy, and now being even more curious, I read about narcolepsy. Needless to say, I identified myself in all the other symptoms, even the ones described as being rare! Being a student-nurse at the time, I knew that it was easy to go overboard with some of these things, and took no note off it, as I was not too affected by the disorder at the time.
Stress Worsens Symptoms
Now a registered nurse, I decided to work in an acute psychiatric ward. That was a BIG mistake. I encountered my first major stressor in life, and narcolepsy symptoms started developing.
Tackling the Many Challenges of Narcolepsy
Vera was a normal 10 year old starting the 5th grade when she started sleeping excessively. There was a sudden change in her behavior. We took her to the doctor and she was diagnosed with obstructive and central sleep apnea. She stopped breathing about 35 times per hour due to the obstructive apnea and about 7 times per hour from the central apnea. Obstructive apnea caused her muscles to relax and block her airway; the central apnea happens when her brain doesn’t tell her to breathe.
She had the surgery that was recommended for the obstructive apnea. Referred to as UPPP, the doctor removed Vera’s tonsils, uvula and some of the soft palate. This surgery did not help Vera at all – in fact it made the condition much worse. After surgery her obstructive apnea episodes increased to 72 times per hour. Vera now uses a CPAP machine to treat her sleep apnea.
A Story Of Narcolepsy And Fibromyalgia
I use the term Prison of Pain to describe how my two life-long chronic conditions affect my everyday life. To the novice, my conditions would only affect my physical well-being, but to those who truly understand, they know Narcolepsy and Fibromyalgia affect every single aspect of my being: physical, mental, emotional, and spiritual. Narcolepsy is an extremely misunderstood, grossly under-diagnosed, and wrongfully stereotyped neurological/ sleeping disorder. Of the 200,000 Americans who are projected to live with Narcolepsy, only 50,000 of them are properly diagnosed. Movies and stereotypes often portray us as falling instantly due to a sleep attack (Excessive Daytime Sleepiness); however, this is highly erroneous, because we are most likely to instantly fall due to the second most common symptom of Narcolepsy,Cataplexy which causes our body’s muscles to either partially or completely collapse whenever we experience extreme emotion, especially laughter, surprise, anger, and for me fighting off a sleep attack.
I am a forty-two-year-old, single, divorced male. I could do with losing a few pounds, but I’m not particularly overweight and certainly not obese, factors normally associated with sleep apnoea and snoring. I have been a chronic snorer for as long as I can remember.
My earliest snoring memories are from my school days. At the age of eight I went to a school camp and shared a tent with seven other lads. My tent mates told me in no uncertain terms that I was a very loud snorer! I also shared a room at home with my two brothers, who both resorted to wearing earplugs at night.
Sleep Apnea very nearly cost me my life. I was the first woman diagnosed with Sleep Apnea in the state of Missouri in 1989. The period from 5 years previous to my diagnosis is a vague blur of memories. I walked around in a sleep-deprived daze.
By sheer will power I forced myself to care for my son. Because of this illness my marriage fell apart, ruined my 10 year teaching career, almost killed myself falling asleep at the wheel of my car, gained over 100 lbs. and developed a serious self concept problem.
That is exactly how sleep apnea works. It comes upon you gradually; first the snoring and the interrupted sleep, the inability to concentrate, the weight gain, the extreme fatigue, the irritability until you are unable to recognize yourself when you look in the mirror.
I knew there was some kind of problem. I went to doctor after doctor.