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My life with narcolepsy

Filed in
  • Narcolepsy
  • Patient stories

By Norman Adams  |  Jul 20, 2017
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During my first 15 years of life, I was a hyperactive child. I was always mischievous, a standout athlete, but a very poor student. I lacked focus and often blurted out ridiculous statements. My report cards always had the comment, “Norman is very smart but rarely applies himself.” The real problem, I learned at age 55, was that I had attention deficit disorder (ADD), which made reading retention almost impossible.

At about age 15 a new symptom started to rear its ugly head, although I tried to use it to my advantage. I had a one-hour bus ride to high school. I found I could fall asleep almost instantly while riding the bus and wake up seconds before I had to get off. I just thought I was tired, and this new talent allowed me to get the sleep that my body wanted.

The first time I became aware of my sleepiness in class was as a junior in high school.

My teacher slapped me awake in English class. In my senior year I had another intolerant teacher who thought it would be a good lesson to everyone in the class to come up behind me, put his hand in my collar, twist it and choke me so badly that I could not talk or breathe.

In college, falling asleep became a bigger problem. I had to travel several hours to school, and when I drove I experienced dreadful periods of sleepiness behind the wheel. On many occasions I pulled over and took a nap. I fell asleep in most large classes and began asking friends to take notes for me. My grades were still poor, and I was unable to return to school after two years as I did not meet their standards for grade point average. I was told to find another school or join the army.

After college I fell in love, got married and began my first full-time job as an engineering technician. It turned out to be a perfect fit for me. In the winter I worked in a lab by myself, and in the summer I sat out on construction sites testing soil compaction and sleeping in my car, where I could take cat naps all day long. My next job was learning to design and program computers. I had my own office and could take my cat naps as needed.

It wasn’t until I had my first programming job with a big corporation that my sleepiness began to be noticed more often, and it became a problem immediately. I was called into Human Resources and told I was on 90-day notice to ship up or find another job. Thank God I had a relative in upper management, who I am sure saved my bacon. After a few years, management realized that my ability to program and design systems was more valuable than my daily sleepiness.

At age 25 I experienced three minor auto accidents. At that point I realized that I needed to see a doctor and find out what was going on before I drove into a telephone pole and killed myself or another person.

I was referred to a neurologist who sent me for a brain wave test.

Following the test, I was diagnosed with narcolepsy. In 1969 very little was known about narcolepsy, and doctors estimated that about 250,000 people in the United States had it. Over the course of a few years, I was prescribed two different medications, but I didn’t like how they made me feel.

In the early 1970s, my life took a huge turn. I was offered a position with a large company in upstate New York, where I felt that an experience like this meant future success for my programming and computer design career. For the next 12 years I worked many hours of overtime, created numerous systems for a Fortune 100 company, and had little if any concern with my sleeping problems at work. My managers were very pleased with my work and assumed my sleeping habits were due to the long hours I was putting in. I still had to be aware of my sleepiness, and on numerous occasions I would have to pull over and take a nap even in the 35-minute ride home.

After leaving that company, I took another very big risk and joined a software company as a consultant. This meant that my daily sleepiness was going to be under scrutiny at every company I consulted with. I always explained my condition to the hiring manager and asked if they could put me in a private setting where I could avoid contact with other employees. I would guarantee that the quality of my work would justify their consulting fee. Most of the time it worked, but on a few jobs it did not.

For the rest of my working career, I struggled with acceptance and understanding until the Americans with Disabilities Act became law in 1990. I never knew how my employers would deal with my daytime sleepiness. I think it would be better if narcolepsy was explained like being in a trance, and people in that state can solve problems, have dreams, or be so deep they can be sitting in row two at the philharmonic symphony and never hear a thing.

I can remember falling into narcoleptic sleep attacks and feeling like I was coming out of a fog. I didn’t know who I was or where I was, and I certainly never felt rested.

My family and friends tried to deal with my narcolepsy, but I know it was not easy. My second spouse had a very hard time dealing with it and complained throughout our 17 years of marriage. She was a therapist and had a very powerful sense about people. I remember the first time we went on a long drive, and I started to feel the sleepiness that comes with the start of a sleep attack. She immediately turned to me and said, “Are you getting sleepy?” So I told her I was. She was the first person who was ever able to sense my sleepiness. She said it felt like a dimmer switch, a sudden loss of energy. From that day on I never worried about my driving with her, as she would always take over and drive if she felt that drop in my energy.

I am in my 70s now and retired. I still struggle with daytime sleepiness, but now it has become an asset to be able to take a nap at will.

One thing most people do not realize about having narcolepsy is how vulnerable it feels to fall asleep alone in a public venue.

I learned to laugh about it, but I can imagine that other people who have narcolepsy could struggle with this vulnerability, and that it could develop into a serious fear.

My suggestion for living with narcolepsy is to try to face it with humor, rely on support from others who care, and try to develop some areas where you can use narcolepsy to your advantage (like sleeping at a bad movie or a boring party, or when your spouse starts lecturing you). Try to help others develop a better understanding of your condition. Last but not least, if you believe in a higher creative power, trust in it to protect you.

Connect with Norman at normjadams@aol.com. To share your story of how you have learned to live with a sleep disorder, contact us at media@aasmnet.org.


12 Comments

  1. 1 ZaZa 16 Oct
    Hi 
    Thank you so much for sharing your experience. I have a question and I need help, actually, I am in an urgent situation. 
    I'm 28 years old. I have ADHD and Narcolepsy, about 3 years ago I treated my problem with Modafinil, this medication created some side effect on my body, I only used this medication for one year. 
    Now, I start to use Ritalin for my Narcolepsy, unfortunately, after 3-4 days of regularly used Ritalin, my body was down very badly, I could not do any mental or physical activity and I was at sleep for about 24h. My question is that how you recover your body and your energy very fast? Because I have 2 important international exams and I cannot risk losing my money and my opportunity.  Thank you very much, Sincerely 


  2. 2 Natasha Stokes 27 Jun
    Norm Thank you for sharing. Narcolepsy is certainly a journey in itself. And something I fluctuating between excepting is part of who I am and the other half of the time fighting like I feel like I am not a while person in someway.
    As a child I was frustrated, often reaching my development goals before expected. For the first 5 years of my life I slept 3 hours a night. That was until my first day at school.
    As I went through school I was a straight'A'student, an award winning dancer and played in a number or orchestras. Music and dance were part of life. As I reached about 15 - 16 I had a to make a choice to peruse my dance or focus on my studies as I wanted to be a lawyer.
    My dance and music was replaced by a love of aerobics and I became super fit.
    It was studying for exams that I started to notice that i would start to nod off. I just put it down to being tired.
    Rewind to my last year of school (age 17) and I remember the first day I had a sleep attack in class.
    At university, my condition got worse and worse. I have a good houra drive to the city each day. Then one day I woke up just before hitting a power pole, jarred by hitting the curb, averting an accident.
    That started years of visiting doctors to try and understand what was going on. It took 10 years of and moving countries to finally get a doctor who could diagnose me.
    But this time I had modified my life extensively to just try and survive the working week to keep an income coming in. I remember being so I'll some weekends that I could not get out of bed my boyfriend at the time use to have to feed me in bed. I started to cut out my social life and cut out all my other activity just to have time to No I down a job. Since the age of 27 I have been on medication which for the most part enables me to leaf a relatively normal life, but in others I am a very different person to who I use to be. I still have to manage my life and often push myself too far at work until my body same enough. Today is one of those days. Today I am 42, I had not been married nor had a family of my own. I am thoughtful for all that I do have But I can't help but wonder how much my narcolepsy and how it has led me to view myself has played in always keeping people at arms length, as I feel I don't want anyone else to bear the burden of narcolepsy and at times feel that it males me of unworthy of being loved. It has taken a long time to accept I am who I am. Thank you for not making me feel like I am alone.
  3. 3 Sandra Wilson 10 Apr
    Thank you for your honest story! I can't imagine what it must have been like for you to live with a diagnosis that was little studied. My sister has narcolepsy and ADHD. She goes to school, and it's not easy for her. She has very slow reactions and sometimes she gets vulnerable and falls asleep in class. Unfortunately, my parents can't homeschool her. But our whole family is trying to make her life easier by all possible means, and I hope she feels our support. I recently found a detailed article about narcolepsy and the teaching process. If someone has the same problem and is interested, read this information. We were able to organize such a schedule for the sister to minimize the risk of sudden fall asleep, and explained the situation to her teacher and classmates, so they can also help her when she needs help. 
  4. 4 Jessica 26 Feb
    Hello,
    My so is 15 years old and just last year he was diagnosed with narcolepsy. Its been hard keeping him awoke an focused in school. I get the same results years after year from his teachers, stating that he is a smart student if he only apply his self he can achieve better result. I am also concerned with him becoming into adulthood in regards as to driving a vehicle like most kids his age.
  5. 5 JOHN DOE 26 Jan
    If you have blood tested positive for narcolepsy I can testify alternating with Sunosi & Adderal works and decreases tolerance. Works even better if you try to go in and out of ketosis low carb ish lifestyle. 
  6. 6 Hanna 20 Jan
    @LeToya, I just got my narcolepsy diagnosis this summer, and I'm going to be evaluated for ADHD soon. I'm 27 and in graduate school. There's a lot of hope.
    AND I have just been approved to use my city's para-transit service, the bus service they have for people with disabilities who cannot use the "regular" public transit services. I can get to campus, my internship, and my apartment for $2/ ride, without driving, in a comparable time to using the city bus. (My modafinil wears off before my evening shift at my internship or evening classes, so I was frequently falling asleep and missing my stop on the bus.) The para-transit driver has fewer riders, and knows where I need to get off the bus, so they can wake me up if necessary, which is really helpful. Maybe your son could apply for a comparable service?
  7. 7 Mary 29 Nov
    Everything you described is exactly what I have
    2 tears ago I was at my cancer Dr and fell a sleep waiting for the apt.
    When he was leaving he saw me in the waiting area and thought  I missed my  apt. I explained i got there at noon and it was 5:30. I told him this happens constant almost every day and he ignored me about ant diagnosis and told me not to drive. My husband had been doing the driving for 4 months I told him but could not accommodate me today. 
    Now 2 years later I sleep for 4 days at a time waking every 2 hours for minutes or sometimes I have window of 4 hours around 3 am
    I had my first study and said it was severe.
    Waiting or 2nd test .  Holiday now so I will be on top of it Monday
    I have lung cancer so i am home bound and my husband has dementia so he does not understand or have a clue to help me.
    I can not care for him, shop or schedule medical appointments. My life is like living in a nightmare .  Most sleep is saturated with nightmares  I can not wake from as hard as  I try I always fall back a sleep  and pick up where they left off. I have lost my memory of time , space and days now. When i have my awake time I still have a heavy head  and am foggy.
    It is not like I did not address this problem with several DR but was Ignored
    If you have the beginning stages PLEASE insist on a sleep study and be your own advocate
    I was not
  8. 8 Linda 16 Oct
    Love this beautiful expression of accepting yourself.
  9. 9 LeToya 18 Jul
    Norman its so ironic how if I close my eyes and listen to your story this is my teenage sons life VERBATIM!!!. ADHD since youth, Narcolepsy diagnosis also at age 8, not so good grades all through out school. A stellar athlete in high school wrestling and football.  He also was just told that he is unable to return to college after 3 semesters as he did not meet their standards for grade point average either. I am lost I don't know what to do now or how to help him. I want the best for him but I'm scared that his options in life are limited. He is currently searching for a job now but he doesn't want to do anything that could make him sleepy. He thinks he needs to keep moving. He can't drive of course and I just worry that he will take the wrong bus to work or sleep until the end of the line on the train or something worse. What kind of of careers can narcoleptic people have that are interesting to them?. He might have to go to a vocational school to get career training because college might be out of the question now.
  10. 10 kieran 28 Jan
    reading this really made me smile, im only 16 at the moment and have been diagnosed with Narcolepsy since I was 8 and hearing all of your accounts has made me somewhat eager to see how it will affect my adult life. I agree that we should face it with humour and i definatly use it to my advantage when i can, at the end of the day, its part of me now so i might aswell get the most out of it!
  11. 11 Becca 11 Sep
    Your reflection gives me a sense of hope.
    I am trying to find a job as I went through a life change and have been out of the work force now for 8 years.
    I was always a nap taker growing up but didn't develop actual symptoms of narcolepsy until after my son was born, 6 years ago. At first, my doc told me it was being a new mom. They blamed it on weight gain from being pregnant. I lost weight and then dotors felt it was an additional symptom from anxiety Ive had my entire life, even after it had been in control for years prior to my onset of symptoms. I was tested, scanned, and talked to so many times I startwd to think maybe it was something I had to snap out of. I was in the best shape of my life, trying to cure myself of what the docs said was just normal tired. The thing was, Id work out and fal asleep during yoga or cool down. Dealing with extreme fatigue, the sudden onset of what I refer to as drunk tired or the moments I would be driving and realize I fell asleep and panic because I had no idea how I drove without knowing I had fallen asleep.
    After a year and a half an experience of sleep paralysis and an onset of severe shaking following the new experience had my doctor ordering another scan to make sure it wasnt a seizure or other neuro episode. The very smart neurologist said, it sounds like sleep paralysis, have you seen a sleep specialist? Your symptoms sound like hypersomnia or narcolepsy.
    The rest is history.
    The hard part right now even after this amount of time, is that Im not tired due to depression, lack of sleep, lazy, lack of vitamins or food allergies. My thyrid amd hormones are fine.
    I don't enjoy explaining anything anymore and usually dont want to as folks either think Im looking for sympathy or say, oh yea.. I get tired sometimes too or worse look at me as if I made it up..
    Truth of it, I just get embarrassed when I slurr words or forget things or when tasks take 2 days instead of a couple hours because I have to take breaks and either try to wake up or just give in and nap, though naps are the choice Ive learned are the best route.
    When applying for jobs, I worry when it says fast paced. I finished ny associates degree but am concerned that a career change may be unavoidable in order to be successful.
    Thanks again for your reflection, it gives me hope in working with this condition and being effective.
  12. 12 Bobbie 27 Jul
    Thank you so much!  I was always told that I was just lazy and when I started have the dreams and not being able to wake up I thought I was going crazy. I never told anyone not even the man I was married to. Then one night I saw a commercial on tv and thought that sounds just like me. So I have had a sleep study and have been told at 57 years old I have Narcolepsy.  My coworkers are always kidding me about being able to sleep anywhere!!

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