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.

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.  

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.

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 …

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.

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.

This video is from Julie Flygare. Judy is the founder of Project Sleep, a leading narcolepsy spokesperson, published author, blogger and runner diagnosed with narcolepsy and cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. She is an advocate for Narcolepsy in the US. She is and award-winning writer for her book 'Wide Awake and Dreaming'. Her website is www.julieflygare.com .

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

Gina Dennis, INHC, a.k.a. Madcap Miss, was the keynote speaker at the 2017 Suddenly Sleepy Saturday annual event. Gina, who came all the way from Texas has narcolepsy, her mother has it and her son also. Six years ago she set out on a journey to find a diet that could help her family mitigate their narcolepsy symptoms.

This very informative infographic was produced by Julie Flygare – http://www.julieflygare.com

In Early 2010, I got the swine flu injection. Three weeks later I noticed I was sleeping a lot more than I should and when I wasn’t sleeping I was still feeling tired. Then I started to have these very vivid dreams at night. My experience was – a man coming into my bedroom, dressed all in black and he would put his hand over my mouth. I could feel his hand over my mouth, I would then wake up but I wouldn’t be able to move for what seemed like ages, I could see and hear everything, but my mouth and body just wouldn’t move. After having this dream a few times, I didn’t want to sleep at night, which lead to sleeping most of the day and being very irritable when I was awake.

Nancy was sleeping again. Her husband and children were ready to go out but she was not. This has been the story of her life. In school she was always falling asleep. Then at night, she had trouble staying asleep. She would sometimes awaken unable to move.

A person with narcolepsy has many challenges to face on a daily basis. Some of the symptoms are truly bizarre, apart from the daily sleepiness and ‘brain fog’ you also have sleep paralysis, strange dreams – which can range on the spectrum from being fantastical – weird – lucid dreams to hallucinations and nightmares. Below describes some of these symptoms that affect narcoleptics in varying degrees of severity.