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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The Decision to Homeschool My Child

What Happened?!?


My son is in 6th grade this year, his first year of Middle School.  We knew it was going to be a hard year for him as he will now have to transition to changing classes every hour instead of sitting in one classroom most of the day.  He was approved to stay in the Magnet Program with the school he went to for elementary school which meant he got to stay for Middle school as well.  But in order to stay in the Magnet Program, he had to meet certain academic criteria.

At the end of last year, we discussed that in his 504 Plan meeting.  The principal assured me that as long as my son showed effort that he was trying to keep up, then he wouldn’t be kicked out of the program and the school would support him.  While I hadn’t been thrilled with how certain teacher’s had handled my son in the past, overall the school had been better for him than the previous two schools I had him in.  So I was happy to keep him in an environment that he was already familiar with for Middle School.  However, my son and I had discussed this and I made him aware that we’re not going to continue jumping from school to

Shame

Enough is Enough

school.  This was the third school in six years.  If it didn’t work out at this school, I would homeschool him.  He dreaded that though and was absolutely against homeshooling as he did not want to be away from his friends.

However, he got halfway through sixth grade with pretty decent grades.  The very first week back from the winter holiday break, my son was called up to the Dean’s office and told that he had 3 days to pull his GPA up from 1.5 to 2.5 or he would be kicked out of the program.  This devastated him.  He came home crying and feeling like a complete failure, yet again.  His tics immediately started back up indicating that he was overly stressed and he cried off and on the entire weekend.  I was fed up and scared to death at the same time.  I’ve never seen my son that upset, that worthless.

 

Communication…or Lack Thereof


The Dean had tried to call me that same Friday, but I was in a business meeting and couldn’t answer her call right away.  I immediately left my meeting because I knew it was the school calling.  I called the school back but the front office had no idea who had called me.  And, as always, there was no message left on my voicemail at either of the numbers she called.  A few hours later, I received an email from her informing me that she had spoken to my son about his grades and she hoped I would work with him over the weekend on making up assignments he was missing.

Since I was upset, I waited until the following Monday to contact her.  I had spoken to my son over the weekend and determined that he had a few missing assignments and had earned a couple of zeros on group projects where other team members hadn’t done their part so the entire group failed.  There were four assignments that he admitted to not turning in.  So I instructed him to get them done and turn them in Monday.  When I emailed the Dean, I explained what my son had told me about some of the zeros and missing assignments.  I asked what would happen next.  Would they kick him out of the school next week or would he be allowed to finish the year?  Why had the teachers not been communicating with me about work not being turned in until there were only 3 days to do anything about it?  I asked very specific, targeted questions.  I copied the principal on the email because she had pulled me aside at the beginning of this year to tell me that the school was going to stand by my son.  “We’ll get him through it,” she said.School

Wednesday, two days later, I finally received a response from the Dean.  She had forwarded the email to the teachers as they could explain the zeros better than she could.  She told me her team would meet to make a decision and she would bring my concerns to the team at that time.  As for what happens next, they could either kick him out of the program altogether and kick him out of the school immediately, they could place him on academic probation for another quarter and reassess then, or they could release him from probation if his grades were high enough.  I never received a response from his teachers.

My son came home from school that day and told me that he had gone to one of his teachers and asked her if he could turn one of the missing assignments in to her the following day.  Her response to him was, “Why would I take it now?”  This made me angrier.  He did exactly what both the Dean and I instructed him to do, and that was her response.  That same day, the Guidance Counselor called him down and told him that she “doesn’t think” he’d be kicked out of the program just yet and that he’d probably be allowed to stay for the 3rd quarter.  So he gets to spend the next nine weeks worried about whether he’ll be kicked out after that quarter?  I don’t think so.  Not on my watch.

 

Homeschool


I called that very night and enrolled him into an Independent Study Homeschooling program.  I will teach him myself.  He has had his spirit broken down at school year after year.  How is he supposed to succeed at anything if he’s constantly being told he’s not good enough?  During the previous weekend, I had told him he was perfect to me.  That resulted in my son bursting into tears and thanking me.  Then he went to his room to sob…again.  At that point, I put my face in my hands and cried too.  I had never felt so helpless.  I can’t let them continue to destroy my son.  They will lead him to suicide, he’s already high risk just due to his disabilities.  I have to take control of his education and stop this nonsense.

I had him officially enrolled in homeschooling by the end of the day on Thursday and withdrew him from public school on Friday.  I needed to start doing damage control right away and get him built back up, his confidence level is at an all time low.  Since the principal had offered reassurance at the beginning of the year, I wanted to give her a personal explanation of what happened and why I pulled him out.  So I wrote her a letter and sent it to her via email.  It is entirely rhetorical and I am quite certain that I will never hear from that school again.  But I held my head high and explained to her my reasoning while getting everything off my chest at the same time.  This allowed me to close that chapter and move right on to the next.

Focused on Success

Focused on Success

Now, my son and I have just finished our first week of homeschooling.  It went pretty well and he is starting to get back to himself again.  He’s much happier now and is excited to learn again.  I think this was the right decision, at the right time.  That said, this may be right for my child and may not be right for everybody.  As parents, we have to understand that our children are unique and we have to find what will work for them.  I fought the public school system real hard for six years before giving up on them.  But I will not give up on my son.

If you are fighting similar battles with your own children and would like to talk or learn about potential options, please feel free to reach out to me.  I’m happy to share what I know and what I’ve tried in hopes that it will help another unique child.

Happy Parenting!

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