10 Things You Didn’t Know About Narcolepsy

 

I’ve just been looking at Julie Flygare’s website and thought this was some very useful info for people in Ireland to read. She wrote this back in 2014 and I know all of you with narcolepsy will relate to many or all of these 10 things about narcolepsy. I think this is useful information for people in Ireland who don’t know much about narcolepsy and it’s related conditions.

by JULIE on MARCH 7, 2014

In honour of National Sleep Awareness Week, the top 10 things you didn’t know about narcolepsy:

10. It’s not like the movies
Rat Race, Deuce Bigalow: Male Gigolo and Moulin Rouge feature comical characters with narcolepsy. Falling asleep mid-sentence may happen in real-life, but it’s not the typical everyday experience. Narcolepsy is more than sleepiness, involving other serious symptoms and it’s not a joke.

9. People with narcolepsy do NOT sleep all the time
Individuals with narcolepsy may fight sleepiness during the day but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy.

8. Emotions may cause paralysis
Everyday emotions like laughter, surprise or annoyance may cause temporary muscle paralysis (knee-buckling, head dropping or collapsing to the ground unable to move). This is cataplexy, a scary symptom unique to narcolepsy. (Not everyone with narcolepsy has cataplexy.)

7. Napping is not a luxury
People with narcolepsy are not “lucky” to take naps, they are experiencing extreme physical sensations. Napping is often inevitable, unwelcome and difficult to plan for in most school or work settings.

6. Terrifying Hallucinations
Ever woken up but been unable to move your body? This is sleep paralysis, which happens to 1/3rd of all people, but happens more frequently in narcolepsy. Sometimes accompanied by visual, auditory or tactile hallucinations as REAL as reality. This redefines “living a nightmare”.

5. Doctors don’t know narcolepsy
According to a recent study, 91% of primary care doctors and 58% of sleep specialists are NOT COMFORTABLE diagnosing narcolepsy. Only 22% of sleep specialists could name all five major symptoms. As a result, people go undiagnosed for 3 to 25 years.  Misdiagnoses include epilepsy, depression, and schizophrenia.

4. Sleepiness doesn’t always LOOK sleepy
Narcolepsy’s sleepiness may manifest as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems. These behavioral and cognitive changes are very real, but not what we think of “sleepiness” – i.e. droopy eyelids, yawning or nodding off.

3. Neurological disorder without a cure
Narcolepsy is believed to be an autoimmune neurological disorder, caused by the gradual loss of neurons (called hypocretin or orexin) which help regulate waking, sleeping and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedules. No two cases of narcolepsy are exactly alike – what works for one patient may not work for another.

2. Sleepiness is NOT laziness
Imagine not sleeping for 2-3 days straight. That’s how a person with narcolepsy feels daily. This sleepiness is neurological and uncontrollable and is not a sign of laziness or lack of willpower. If I felt like being lazy, I would watch TV or play games. Sleep is not all that fun, I don’t even remember it.

1. You know someone with narcolepsy
Narcolepsy affects 1 in every 2,000 people – 200,000 Americans and 3 million people worldwide, including many children. Narcolepsy is invisible, we may look “healthy” on the outside while fighting internally or behind closed doors. Misperceptions cause many to keep it private. Yet, people with narcolepsy are your friends, neighbours and colleagues.

 
 
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eNAP send out a very short survey to patients in Europe. The aim was to find out whether professionals and patients are on the same page…

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As we are in the middle of Idiopathic Hypersomnia Awareness Week and are heading towards World Narcolepsy Day, Sept. 22, it is a good time to take reflect on the current thinking of these primary sleep disorders. By primary, I mean they are not caused by another illness. They stand on their own two feet as a real disorder.

The Two Orlas
The Two Orlas

Where do you begin to give your story, like so many of us it was years and years of bouncing from doctors offices trying to understand what was happening.  I have always had sleep issues waking on and off all night. What I thought passing out if I get a fright, laugh too much, am angry, scared, too hot etc. but bouncing back within a minute. I always had cut knees, bruises,  bashes and bangs and was called by my family and friends a bit of a space cadet or away with the fairies or my flip side was razor sharp brain, top of my class and being an over achiever. The dichotomy always annoyed me. It was like there was two Orlas one sharp as a button and smart and the other away with the fairies, fainting, circling the skies and switched off.  

The Sleepy 'Little Miss Fix It'
The Sleepy 'Little Miss Fix It'

I was diagnosed with Narcolepsy/Cataplexy, a noted sleep disability at the age of 51. Simply put, the sleep part of my brain stopped working. My stupid, spongy mass couldn’t work out when I should sleep or stay awake.

Life is an exciting journey and I can’t wait to see what I can achieve.
Life is an exciting journey and I can’t wait to see what I can achieve.

Think of your average first year high school student - an oversized blazer they’ll “grow in to ”, an ignorantly large schoolbag that’s bigger than the child themselves and of course, a young face full of confused excitement. That was me at age 11.

Like many others, I was in choir, school band, played hockey every week and socialised with my friends at every opportunity.

Then one day at the end of first year, a teacher put on “James May on the Moon” as a Friday afternoon treat. No sooner had it begun than I woke up with all my class staring and giggling because I had fallen asleep on the desk. To say that 12-year old me was mortified would be an under-statement. I put this inability to stay awake down to exhaustion at the end of an exam week, but I now know that this was to be the first of many inappropriate naps.

I'm like a bicycle, it's only when I stop that I fall over!!
I'm like a bicycle, it's only when I stop that I fall over!!

Thinking back now, my first recollection of falling asleep in weird places was in lectures during first year in college, 1996. I don't remember any problems in 6th year of school just months before hand but definitely keeping alert during lectures was a problem. I seem to remember I just thought it was normal. I certainly didn't do anything about it, didn't go to a doctor, didn't say it to anyone. I just got on with it.

My Narcolepsy Journey
My Narcolepsy Journey

I’m 26 years old and I grew up in a small town in Southern Ireland and have just moved home because of my condition. It was a hard decision to make but after a few months of being home and away from the stressful place I was staying and busy life of the City I have found it has made a huge improvement to my mental and physical health. From my teenage years I started noticing that I was having lower than normal energy days …

My nickname as a child was Dolly Daydream, now I know why! 
My nickname as a child was Dolly Daydream, now I know why! 

Two years ago, at the age of 48, I went to my GP to finally ask for help for the madness I was told I had since I was a child. The previous night, I saw a man walking left to right at the foot of my bed. He was dressed all in black and wearing a balaclava. He seemed to be walking in slow motion and I tried to get up and shout at him but I could not move. I could think but I could not move. I thought that night was the night I was going to be killed in my bed! Then it stopped but I was so upset, I knew I needed to see a doctor.

ALICE'S story.
ALICE'S story.

My name is Alice Cullen. I have recently been diagnosed with narcolepsy.
It hasn’t been an easy process and it’s so very important to share as every one has a different experience so here goes.

So I have just turned 41 years old. I was diagnosed with narcolepsy with cataplexy in early December 2018.
All through my childhood I was an excellent sleeper but had no problem with daytime sleepiness.  I didn’t experience any problems at school, college or with study and was involved in many sports and extracurricular activities.

Narcolepsy Ireland