Julie Flygare, JD 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 .
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…
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.
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.
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.
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.
