Quiz: Do I Have Narcolepsy?

What Is Narcolepsy

What Is Narcolepsy

What is Narcolepsy?

Quiz: Do I have Narcolepsy?  What is it exactly?  Narcolepsy is a neurological disorder characterized by the brain failing to regulate sleep-wake cycles.  For most people, it takes about 90 minutes after falling asleep to reach the first stage of Rapid Eye Movement (REM) sleep which is when we dream and our muscles are paralyzed.  Throughout the night, people alternate between REM and non-REM sleep.  With narcolepsy, REM sleep happens almost immediately and also occurs involuntarily during waking hours.

A common misperception of Narcolepsy is that people with the disorder are excessively sleepy.  However, Narcolepsy does not affect the amount of sleep the person needs, they sleep a normal amount of time in comparison but are unable to control the timing of their sleep.  This is where there are instances of falling asleep at work or school, or while driving.  That is not to say that all people that fall asleep behind the wheel are narcoleptic.

Narcolepsy affects both sexes and typically begins showing significant symptoms in adolescence or early adulthood.  The symptoms tend to gradually get worse over time.  Researchers recently found that there may be a link between Narcolepsy and a hypocretin production deficiency in the brain.  Do you think you may have Narcolepsy?  Ask yourself the questions in the below quiz: Do I have Narcolepsy, answer honestly.  If you answered yes to multiple questions, you may want to talk to your doctor.

 

Narcolepsy Symptoms

  • Excessive Daytime Sleepiness
    Nap Attack Sitting in Office Chair

    Nap Attack Sitting in Office Chair

    • This is the most common symptom.  A big differentiator between this symptom and those without the disorder is that for Narcolepsy patients, this can occurs even when they’ve gotten a full night’s sleep.
    • They may fall asleep while conversing with others, eating, driving, working, or other inappropriate times.  My son once fell asleep during a conversation sitting at the table in Denny’s while eating meal.
  • Cataplexy
    • Sudden loss of muscle tone (going limp) which can be triggered by emotional stimulation such as laughing, being surprised, or angered.
    • May result in the person collapsing.
    • May only affect certain muscle groups.
    • May cause the knees to buckle.
    • May cause slurred speech.
    • Does not lose consciousness as they sometimes do with seizures.
  • Hypnogogic Hallucinations
    My Son Hiding From Hallucinations

    My Son Hiding From Hallucinations

    • Scary and weird dream-like experiences that happen during the transition from wakefulness to sleep and include the person’s actual environment.
    • My son, when he was in second grade, described this as the items hanging on his walls moving and the family pictures turning into terrifying monster faces.
  • Sleep Paralysis
    • Temporary inability to move while waking up.
    • May last a few seconds to a several minutes.
    • May accompany hallucinations.
  • Disturbed Nocturnal Sleep
    • Inability to sleep through the night, waking up repeatedly.
  • Leg Jerking
  • Nightmares
  • Restlessness

 

Quiz: Do I Have Narcolepsy?

If you suspect you have Narcolepsy, ask yourself the following questions.  Write them down along with your answers.  If you answered yes to multiple questions, start a sleep diary.  In your sleep diary, record the symptoms you experience, when you experienced them, when you slept, how long you slept, what dreams you remember, any hallucinations you experience or paralysis.  Do this for a few weeks and then take it to your doctor.  Your doctor will ask want to know your complete medical history as well as that of your family.  You will likely then be referred to a sleep specialist to begin testing for a sleep disorder.

  1. Do your muscles go limp when you laugh or get excited?
  2. Do you fall asleep in inappropriate places such as work or school?
  3. Are you clumsy or prone to accidents?
  4. Have you had to pull off of the road because you were sleepy?
  5. Have you ever fallen asleep while driving?
  6. Do you have trouble focusing or concentrating?
  7. Do you have vivid dreams as you’re falling asleep?
  8. Do you have vivid dreams as you’re waking up?
  9. Do you fall asleep during movies or at other events such as reunions or parties?
  10. Do you ever feel like you’re paralyzed when in bed?
  11. Do you ever have nap attacks and need to lay down during the day?

Please note, answering yes to multiple questions here does not necessarily indicate that you have Narcolepsy.  It simply indicates that you may have some sleep issues that should be addressed by a sleep specialist.  For example, I experience many of these myself.  I have Sleep Apnea which is not the same as Narcolepsy.

Narcolepsy Treatment

Narcolepsy does not have a known cure.  It can be treated to help the symptoms, though.  Typically, doctors will prescribe stimulant or anti-depressant medications to help treat this disorder.  Behavior Therapy may also be prescribed.  If you’ve taken the above quiz: Do I Have Narcolepsy, and determined that you might, rest assured that there are treatment options that can help your symptoms.  But do talk to your doctor you need an official diagnosis to gain effective treatment options.

Narcolepsy Diagnosis

Narcolepsy Diagnosis

Changes in lifestyle can help reduce some of the symptoms.  Behavior Therapy will help to set the appropriate changes such as taking scheduled naps during the day and not eating heavy meals.  They may also work with you to set a sleep schedule and advise you to strictly adhere to it.  You’ll want to be on a routine exercise and meal schedule free of alcohol, caffeine, and nicotine.  While not always effective, these practices may help with some of the symptoms of the disorder.

Counseling may also be recommended to help you cope with the disorder.  The general public has many misconceptions of this disorder and it is not widely understood.  I can’t tell you how many times I was told to “make” my son go to sleep.  How do you do that?  I made him go to bed at a certain time each night but I had no way to make him go to sleep without drugging him and I don’t believe in that, in fact, I believe…last I checked…it was a felony to drug people?  Maybe I missed a memo.

Where medications are concerned, there are several different types of medications that may help reduce Narcolepsy symptoms.  Stimulants are used to help eliminate the excessive daytime sleepiness and improve alertness.  Antidepressants can help with the cataplexy, hypnagogic hallucinations, and sleep paralysis.  Sodium oxybate may be prescribed to help induce sleep, reduce daytime sleepiness, reduce cataplexy, and improve disturbed nocturnal sleep.  As with any other medications, the goal is to improve symptoms without significant side effects.  However, before agreeing to and implementing these treatments, be sure that all appropriate testing was done and you feel in your gut that the doctor is correct.  Especially when it comes to your children.  Narcolepsy is yet another medical condition that mimics ADHD symptoms and other neurological conditions.  In my son’s case, he can’t be treated with Narcolepsy medications because that would make his Epilepsy worse.  Therefore, we treat his Narcolepsy with Behavior Therapy only.

Conclusion

Narcolepsy is one of a very long list of medical conditions that has symptoms which mimic ADHD.  The big problem with this is that children with Narcolepsy may go undetected because ADHD medications help some of the symptoms.  This can lead to injury from accidents and heightened fears in your child from the paralysis and hallucinations.

With an accurate diagnosis and effective treatment, many narcoleptic people grow up to be very successful individuals.  There have been many:

  • Aaron Flahavan (Soccer Player)
  • Arthur Lowe (Actor)
  • Dr. Claire Allen (Research Scientist with the British Antarctic Survey)
  • Franck Bouyer (French Cyclist)
  • Gabe Barham (Drummer, Percussionist)
  • George Church (Harvard Professor and Molecular Geneticist)
  • Harold M. Ickes (Politician, Lawyer, White House Deputy Chief of Staff for President Bill Clinton)
  • Harriet Tubman (Abolitionist, Activist, Humanitarian, Union Spy, Writer)
  • Jimmy Kimmel (Comedian, TV Producer, Film Producer, Screenwriter, etc.)
  • Jinkx Monsoon (Stage Performer)
  • Kurt Cobain (Guitarist, Songwriter, Musician, Lead Singer of Nirvana)
  • Lenny Bruce (Comedian, Screenwriter, Actor)
  • Louis Braille (Inventor of Braille)
  • Nastassja Kinski (Model, Actor)
  • Nicole Jeray (Pro Golfer LPGA)
  • Teresa Nielsen Hayden (Editor, Essayist, Teacher, Author nominated for 5 Hugo Awards)
  • Thomas Edison (Entrepreneur, Film Producer, Scientist, Inventor of the Light Bulb, etc.)
  • Winston Churchill (Statesman, Painter, Politician, Journalist, Oretor, etc.)

As always, with accurate diagnosis and effective treatment, narcoleptic individuals can bring an abundance of creativity, compassion, and brilliance to society.  While it’s easy to get caught up in blaming parents, vaccines, or poor decisions for their child’s disabilities, criticizing labels and other methods of raising awareness, and theorizing about healthcare conspiracies, these people are part of our everyday lives and we owe them understanding at the very least.  They give us the same in the best ways they know how.

Raise Awareness

Raise Awareness

Yes, there is an epidemic of misdiagnoses that causes annoyance and frustration surrounding children with ADHD, Narcolepsy, and many other conditions and disabilities.  The problem is that the very labels that society criticizes us for using are the ones that lead to our children getting the help that they desperately need.  Ignorance is bliss.  It’s easy to judge when it’s not your problem.  How about we educate ourselves and raise some awareness instead?  Be part of the solution, not the problem.

Talk soon,

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ADHD Diagnosis – The Difficult Child

The Difficult Child


As recommended, I took my son to the Pediatrician and followed my best friend’s advice to the tee. “Doctor, I’m sooo tired. This kid hardly sleeps at night and, and, and….” I vented all of my frustrations to him and he sat there nodding and smiling and just listened. When I finished, the doctor told me that it sounds like my son may be a little ADHD. He gave me a couple of assessment forms to fill out before our next appointment. One was for the teacher at the preschool to fill out and the other was for me to fill out. He also wrote me a prescription for a book. The book is called The Difficult Child by Stanley Turecki, M.D.  He scheduled an appointment for us to come back the following month and sent us on our way.

ADHD Diagnosis


The next month, I brought back the completed assessments. The doctor reviewed them and now my child gets the ADHD diagnosis. He gave me the Understanding ADHD – Information for Parents About Attention-Deficit/Hyperactivity Disorder pamphlet. I had already read the book that he had prescribed the month before. It was a good book and it answered some questions for me. It put everything in terms I could understand and relate to. And it gave some advice on how to handle certain situations. It mostly confirmed that I was already doing a good job.

Stimulant Medications


Pills

Medications must be used appropriate…if at all!

So upon being diagnosed with ADHD, my son was prescribed Vyvanse. This is a stimulant medication prescribed for ADHD to help with impulsivity and focus. We were looking at putting my son into Kindergarten the following year so we wanted to get him prepared for school and under control. I went home with the prescription and called my mom as I often do to discuss issues with my son. She was adamantly against putting him on ADHD medications. “I know people who put their kids on that Aderall stuff and it severely stunted their growth. Doctor’s are prescribing ADHD so easily these days and just stuffing drugs down the child’s throat when all they need is better parenting.” Whoa…hold up…ouch Mom! Oh she wasn’t referring to me as a bad parent…just the others she’s known that gave their children Aderall. Okay, whatever.

The bottom line is, my son is about to start school and he is out of control. He’s been expelled from various daycares and I really don’t know what else to do. He’s not going to succeed in school as is and it’s my job to give him the best possible chance for success. So…as much as I don’t like the idea either, we’ll try the meds. We’re just going to have to agree to disagree here. My kid is violent, destructive, and out of control. And I’m exhausted and becoming desperate.

So we start Vyvanse. He calmed down….a lot. It was like day and night. I was kind of worried about him he was so calm. Once I got used to the difference in behavior, it was really nice. He wasn’t bouncing off the walls all the time. Let me throw in a little disclaimer here. Anytime someone starts a new med, it takes time to build up in their system and become fully effective. So every time my son tried a new med, it was for several months at a time so that we could really see the full picture of how he was adjusting to it.

Negative Side Effects


Child running

Fight or Flight Response

As the weeks went by, my son became more and more scared of things. He would start crying and trembling when he heard a strong gust of wind outside. One day, we were at my parents house visiting. Grandpa was watering the garden and often sprayed my son with the water hose. My son would laugh and they’d get in a water fight. It was fun…and funny to watch. But after being on the Vyvanse for awhile, Grandpa sprayed my son with the water hose one day and my son went ballistic!

He started screaming bloody murder and bolted toward the front of the house. Grandpa and my son were in the back yard and my mom and I were sitting on the back porch watching. Grandpa didn’t understand what happened, well, really none of us did. As soon as my son bolted toward the front of the house, I jumped up and chased him. He was running toward the street and if you’ve ever had experience with an ADHD kid, you know they don’t think to look before running out in the road.

My son was four years old. I took off after him, called out to him and he ran faster. He did a full lap around the house and kept on running, screaming all the while. My disabled mom who can barely walk jumps up and runs the other way around the house. Grandpa is running after us now. You would think 3 adults could easily catch a four year old boy. Let me tell you…this kid had invisible jet packs attached to his little feet that day, he was flying! I finally catch him and scoop him up and hold him tight. He’s trembling from head to toe and crying. He was absolutely terrified. Grandpa was close to tears himself and felt horrible because none of us understood what had just happened. Grandma and I were dumbfounded, this was so out of character for my son. It took several hours to recover from that and get my little boy back. Grandma and I looked at each other and said “The Vyvanse isn’t going to work.”

In hindsight, we now understand exactly what happened. The stimulant heightened his senses and the cold water hitting him from the water hose sent him into a sensory overload. His brain said “DANGER DANGER!” and he panicked. But we know this now, after 5 years of doctors, meds, specialists, tests, and research. Once my son was put on medication, he had to have lab work done every 6 months and he saw the Pediatrician every 3 months. I informed the Pediatrician of the recent behaviors and they agreed that the Vyvanse was not a good fit for him. So he was taken off Vyvanse and prescribed Strattera and Concerta. Strattera was to help with the hyperactivity and focus problems. Concerta was to help with the irrational fears and impulsiveness.

Starting School


Televisions

Don’t miss a thing!

It was 2009, my son was five years old, and he started Kindergarten. I explained the issues to his teacher and she fully understood. I told her I was still struggling to understand a lot of it. She told me, “I live with my boyfriend who also has ADHD. Imagine your standing in front of 27 televisions and they’re all on different stations and you’re watching them all and trying not to miss a single thing. That’s how my boyfriend describes ADHD.” I had never heard an analogy like this. It was brilliant! I knew she was the perfect teacher for him to start his journey through grade school. And he totally adored her. He even wanted to marry her…until he met the Pharmacist at Walgreens. Anyway, Kindergarten went well, there were only a few significant events.

There was one day when they were working on arts and crafts and the teacher put a pair of scissors on his table next to him for him to use. He didn’t want them so he picked them up and launched them across the room hitting another student in the leg. Okay…now these are the safest of scissors with the rounded tips and the kid didn’t get cut. But yeah…that was kind of a big deal. He was given a referral to the principals office who warned him and threatened suspension. I had a talk with him when he got home and reasoned with him. How would you have felt if someone did that to you? How would you have felt if you threw those scissors at your friend and they cut him? He understood. It never happened again. The only other incident I remember from Kindergarten was the referral to the principal’s office for starting a food fight in the cafeteria at lunch. I’m not going to talk about that further because I happen to think that’s kind of funny. He started young. My mom didn’t do that until like high school. LOL At any rate, I told him, “That’s against the rules. You have to follow the rules.” He understood. It never happened again.

The Strattera and the Concerta combination seemed to be working really well. He did fantastic in Kindergarten and his behavior was much better. It was this year that I realized I was doing a real good job as a mom and I had a very well mannered, well behaved little boy. He’s a very compassionate kid. He can’t stand to see anybody hurting. Very sweet. It looks like the medical is calming down again….maybe. Ha.

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