Sleep’s Choice: Living with Narcolepsy’s Excessive Daytime Sleepiness

by julie on September 25, 2012

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 10 1024x437 Sleeps Choice: Living with Narcolepsys Excessive Daytime Sleepiness

Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming. If I don’t put my head down immediately, the heaviness only gets heavier. My joints begin to ache and a wave of nausea comes over me. And if I still don’t sleep, the back of my eyes begin to burn and I start losing contact with myself – where I am and what I’m doing. Eventually, this leads to sleep – not because I’ve reached a safe and appropriate resting spot, but because I had no choice. Sleep chose me.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay1 Sleeps Choice: Living with Narcolepsys Excessive Daytime SleepinessThese sleep attacks are a fundamental part of my daily routine – as automatic and compulsive as eating food and drinking water. For many years, I believed I was better than sleep; I thought I could brush it off with a coffee or a red bull. One time in college, while studying late at night in the library, my sleepiness felt unusually powerful, but then came the flood of legitimate excuses. I was a varsity squash player with a strenuous practice schedule. I was either up late studying or out late partying. It all made sense. Perfect sense. Everyone feels tired at times, it’s only natural, I thought.

Sleepiness is not problematic. Quite the opposite – it’s a welcome calming, a joyful sign of dreams to come, a precious passing, a floating away from life’s stresses, a first taste of the ultimate release- the sweet peace- of sleep.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 2 Sleeps Choice: Living with Narcolepsys Excessive Daytime SleepinessFor years, I believed that my sleepiness was harmless. I was just a good sleeper. No, I was a great sleeper – it was my special talent. I sat through lectures, drove cars, cooked meals, visited museums, watched movies, wrote papers, and took exams – all the time fighting a heaviness of excruciating depths that I thought I could will away.

When things got worse, I developed a series of special tactics to perform in any bathroom to wake myself up. I ran cold water over my face and down the back of my neck, did jumping jacks in the handicap stall, pinched my thighs and arms, and slapped myself, hard, across the face.

The slaps were most satisfying, not because they woke me up, but because someone or something else inside of me needed them. These slaps released a rage in me; a rage for lacking backbone and discipline, for being unable to perform the simplest of simple tasks of just – staying – awake. This anger is something that most decent people would never unleash across another’s cheek. Luckily, no one else’s body was involved in my wrath.

Yet one morning, after years of sleepiness, I awoke from a perfect night’s rest and began working at my bedroom desk. I was awake for about a half hour before tiredness crept back in and cornered me again. I looked at my bed – still warm from my night’s shadow. No, Julie. I turned back to my computer to continue working.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 3 Sleeps Choice: Living with Narcolepsys Excessive Daytime SleepinessSoon words from the screen began spiraling through rollercoaster curves inside my head, freed from sentences and paragraphs, they swam in a no-man’s-land between consciousness and unconsciousness. Finally, sitting upright in my chair, two feet from my pillow-top queen-size mattress, I drifted off to sleep. Napping in the morning? I couldn’t be sure, but this didn’t seem right.

When sleep becomes a problem – it’s not usually sleep that’s really the problem. Sleepiness is a sign of other things; an indicator for another, more real, underlying medical or psychological problem. Maybe it was depression, though I didn’t feel depressed; I just felt tired. Maybe it was my thyroid. Tests were conducted – no problem there. Maybe it was sleep apnea, a pulmonary issue of sleeping and breathing. Yet sleep apnea wasn’t it either.

Turns out, it was all in my head. At some point, I don’t know when, I started losing brain cells. Not just any cells, but a very specific group of cells called hypocretin, tucked away in the almond-sized hypothalamus region deep in the center of the brain. No one knows exactly why these cells disappear; it’s possibly an autoimmune reaction – mixed up signals, mistaken attacks on myself.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 4 Sleeps Choice: Living with Narcolepsys Excessive Daytime SleepinessWhat is known is that these hypocretin cells are somehow integral to the proper functioning of the sleep/wake cycle. Without them, the boundaries between waking, sleeping, and dreaming, are… well, confused. This confusion has led to a number of curious and sometimes dangerous situations for me – times when I’m partially awake and partially dreaming, times when my brain and body are in conflicting parts of the cycle. Scary places of hallucination and muscle paralysis that most people, thankfully, never experience. Oddly enough, all this confusion was brought on by a microscopic loss of cells I’d never known I’d had, never mind lost. And even odder that all this loss bears one name – “narcolepsy.”

The sleepiness of narcolepsy, technically called “excessive daytime sleepiness,” means that, even with the best medication available – amphetamines and other wake-promoting drugs, my brain still demands to be shut down multiple times a day. People who don’t have narcolepsy constantly “know how I feel” and I nod my head in agreement, like a plastic bobble-head doll.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 5 Sleeps Choice: Living with Narcolepsys Excessive Daytime Sleepiness

It’s been said that an average person would have to stay awake for 48 to 72 hours straight before they would feel the same violent call to sleep I experience daily.

Sleepiness is similar to hunger and thirst – all three are involuntary commands intended to provoke certain responses. Hunger and thirst are the body’s signals to eat or drink something. Sleepiness is the body’s command to sleep. These are not unpleasant sensations at first, just subtle reminders to give your body what it needs.

Imagine being hungry but denied food for 48 to 72 hours. I’ve never gone so long without eating, but I would expect that the experience would reach dark places of mental and physical anguish. If I spoke to someone who hadn’t eaten in 48 to 72 hours – I wouldn’t say, “I know how you feel” because I missed breakfast yesterday.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 6 Sleeps Choice: Living with Narcolepsys Excessive Daytime SleepinessFor me, sleepiness is like starvation. When I feel as if I haven’t slept in over two full days, pleasantries fall by the wayside. The slight suggestion of sleep turns into a hellish siren – incessant screeching demanding that I shut up, lie down, and drift off to dreamland. All other thoughts and feelings disappear, and in that moment, I’m chained to sleep.

There is no cure for narcolepsy – no known way to replace or mimic the cells that regulate the proper functioning of the sleep/wake cycle. Sleepiness may never be the pleasant passing it used to be, but I’ve stopped fighting it. I’ve realized that the weight on my skull is not to be ignored. I’ve given up my special tactics, they don’t work. I know now that sleep always wins, which makes the game a lot easier to play.

narcolepsy blog julie flygare excessive daytime sleepiness sleepiness sleeps choice essay 7 Sleeps Choice: Living with Narcolepsys Excessive Daytime Sleepiness

When I sense sleep lurking behind me, even in the far distance, I start preparing for its arrival. If I’m driving, I pull over to the best possible spot. If I’m out in public, I try to reach a bathroom or semi-private space. Lying down is ideal, but sitting with my head supported works too. I let sleep take me as soon as possible now, it washes over me for fifteen minutes to an hour and then it lets go. As quickly as it came, sleep disappears and I return to myself, rising to stand on my own two feet again.

There’s no exact science to my safety and survival, but I’ve grown accustomed to dancing in the daylight with sleep. It was haphazard at first, but even this strange existence has a rhythm of its own. I listen closely for when it’s my turn to lead and when to follow. Our steps remain small, but we’re picking up speed.

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This essay was first published in SleepMatters: A Publication of the National Sleep Foundation (Spring/Summer 2012) . [View/download PDF of published article here

{ 63 comments… read them below or add one }

elizabeth September 25, 2012 at 4:31 pm

A perfect description. Thank you.

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julie September 25, 2012 at 5:13 pm

Thank you so much, Elizabeth.

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Stephanie September 25, 2012 at 5:10 pm

Beautifully written.
Thank you for writing it.

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julie September 25, 2012 at 5:13 pm

Thank you, Stephanie. Your support means so much to me.

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Dawn September 25, 2012 at 6:51 pm

Very nicely written! “I was a great sleeper, it was my special talent” My ability to sleep through virtually anything has been called my talent to.

If you could cure your narcolepsy would you? I have come to the conclusion that I wouldn’t because I wouldn’t want to give up my dreams.

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julie September 25, 2012 at 6:55 pm

Thank you so much, Dawn!

That’s a great question. At this point, I certainly feel that this experience happened for a reason and cherish the lessons I’ve learned from narcolepsy, but if a “cure” comes around, I will be interested in learning more about it. :-)

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Marion Roache September 25, 2012 at 6:53 pm

That is the best discription of narcolepsy that I have ever seen. Beautifully worded and described to a tee. Well done you!!

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julie September 25, 2012 at 6:57 pm

Wow, that means so much to me, Marion! I’m so honored to share my experience to raise awareness. Thank you for your comment.

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Sasha September 26, 2012 at 3:57 pm

I just sent this post to my family because I’ve been trying to articulate what you wrote without success for so many years. Thank you!

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julie September 26, 2012 at 4:00 pm

Thank you, Sasha! I’m so glad. Washington DC misses you (especially me)!

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Rebekah September 26, 2012 at 5:04 pm

I cried when I read this. It is a perfect description of what I go through daily. My relationship and my life is suffering because of this and don’t know what else to do. Thank you for writing this. Makes me feel like I’m not alone.

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julie September 26, 2012 at 5:11 pm

Rebekah: thank you for your kind comment. It’s so good to know we are not alone in this journey. Sending big smiles and wakefulness your way, Julie

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Khati September 26, 2012 at 5:23 pm

I don’t think that anyone I know really understands what “being sleepy” means to people with narcolepsy. How could they? Thank you for writing this.

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julie September 26, 2012 at 5:34 pm

Thanks for your comment, Khati! Cheers, Julie

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Gordon September 27, 2012 at 10:59 am

Great article Julie keep up the great work
Goron Gow

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julie September 27, 2012 at 1:45 pm

Thank you, Gordon. Cheers, Julie

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Chris Brown September 27, 2012 at 2:59 pm

Excellent piece Julie! I couldn’t think of a better way. of describing daily life with N!

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julie September 27, 2012 at 3:02 pm

Hi Chris, I’m so glad you liked my essay. Thank you so much for your comment!

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Sarah September 29, 2012 at 8:26 pm

Absolutely nailed what i’ve been trying to describe for years.
Love this, and love your writing.
I linked this one to my blog because I love it a little too much!
Thank you for posting/writing this!!
Cheers!

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julie October 1, 2012 at 1:35 pm

Sarah, I’m so pleased you like my essay. Thank you so much for linking from your blog. Big smiles and many thanks, Julie

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Helen October 1, 2012 at 6:39 pm

A wonderful description. I cannot fully understand what my 10yr old son goes through on a daily basis. This piece makes me feel so proud of him. thank you.

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julie October 1, 2012 at 6:48 pm

Thank you so much, Helen. I’m so sorry to hear your young son has narcolepsy. I’m inspired by the strength of the children I’ve met with narcolepsy. All my very best to you and your family, Julie

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Melissa October 1, 2012 at 10:44 pm

Thank you for this apt description of my personal struggles. I can never thoroughly explain narcolepsy, but you’ve provided me the necessary words. Your writing is so positive and uplifting and has helped me feel connected to others with this diagnosis.

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julie October 1, 2012 at 11:13 pm

Melissa, Thank you so much for your comment. I’m so honored my essay helps describe your experience with narcolepsy. Cheers, Julie

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Kali October 2, 2012 at 3:07 am

I totally relate to your subscription of college. I was a Division 1 rower (aka 445 wake up call) so I always blamed my exhaustion on that. My teammates even joked that I was “narcoleptic”. I was diagnosed 3 years later, 7 years after the start of my symptoms. I feel lucky though, my symptoms are “mild” compared to other people I’ve meet. However that fact sometimes leads me to try to be “stronger than sleep”, I’m working on it though:) thanks for sharing- it helps to feel like others have a similar story.

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julie October 2, 2012 at 3:26 am

Hi Kali, I’m so glad you can relate to my essay. Division I rowing is SO intense, I can’t imagine having undiagnosed narcolepsy in that scenario. I imagine you are a very strong person who has overcome a lot of adversity. What an inspiration. Thanks for sharing. Big smiles, Julie

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Gina Lynn October 3, 2012 at 1:10 am

As a recently diagnosed narcoleptic and former “I’m tired because I do too much” person; I’ve been researching the disorder inside, outside & upside down. I must thank you for this glimpse into your struggle. Your explanation of the wave of exhaustion that eventually overwhelms absolutely mirrors my experience. I often tell my husband, “I’m so tired I could throw-up.” Knowing that others truly understand and are out here sharing makes coping a little easier. Thank you so very much.

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julie October 3, 2012 at 1:20 am

Hi Gina, Thank you so much for your kind comment. I’m sorry to hear you’ve recently been diagnosed with narcolepsy, but you are certainly not alone. Finding a sense of community in our struggles helps make it do-able. Sending wakefulness and smiles your way, Julie

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Larry October 5, 2012 at 8:03 pm

Thank you Julie. This is such a great article those of us who really wish to understand what a loved one with narcolepsy deals with day to day. For me it’s my 14 year old daughter.

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julie October 7, 2012 at 4:39 pm

Hi Larry, Thank you so much for your kind comment. Your support of your daughter’s experience with narcolepsy is so invaluable. Big smiles to you both, Julie

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William Behun October 10, 2012 at 7:16 pm

Like so many that have posted here, this description so closely matches my own experience it’s a bit spooky. When in graduate school, I would have three or more three hour seminars each week. I would find myself, at some point in each one, no matter how engaging the topic, fighting to keep my eyes open or focus on a text. I worried that my professors would notice, that they would think I was lazy, inconsiderate, or uninterested. (for the record, I might be lazy, but that’s neither here nor there) It wasn’t until many years later that I got a diagnosis, and I’ve found that a few basic behavioural changes allow me to manage narcolepsy with astounding success. I am very lucky in this regard. But what could I have accomplished if I had known this earlier? How many wasted hours working on my dissertation could have been saved if I knew then what I know now?

This is precisely why pieces like this, and blogs like this and others like http://queenofsleep.wordpress.com/ are so important. Thank you.

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julie October 11, 2012 at 4:33 am

Hi William!

Thank you for reading my essay. I’m so sorry to hear that you too have experienced what I described here. It’s incredible what you accomplished given your circumstances and undiagnosed condition in graduate school. I’m so glad to here you are managing successfully now!

Thanks again for reading my blog.
Cheers, Julie

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Mia Large October 12, 2012 at 10:29 pm

Beautifull!! Very eye opening description, what got me was when you used the term ‘lurking BEHIND you’. That hit a spot for me, only because it suggests in a reality I beleive, that Narcolepsy may be seperate from me/us like a seperate ( for me) Demon lurking around waiting for my signs of weakness, so it can jump on and into me and drag me down to the ground!!! The reason I beleive it targets me is because of the God given strngth i have shown to live my life through honesty, and growth through amazing struggles….FAITH! In peoples hearts, life, love myself…truth.. God! thanks for showing me its the same Demon you fight, I fight it like its a weak person, powerless against truth. The truth is it hdas no Authority to control me so with God I wont let it!!! I went the fight route but with out being able to TRUST in my protection Im too weak, drugs, healthy. He can kill the body but not the spirit!!!

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julie October 12, 2012 at 10:57 pm

Hi Mia, Thank you so much for your kind and thoughtful comment. I’ve met so many inspiring people with narcolepsy overcoming incredible adversity. Your positive spirit will help guide you through narcolepsy, and life! Thank you for sharing and inspiring me! Big smiles from Washington DC, Julie

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Juliette October 14, 2012 at 4:47 am

Julie,
As a mother of a child who stuggles daily trying to dodge the overhanging shadow of sleep, i was overwhelmed by your descript.
I try to imagine by Master 7′s description and recall, but langauge skills inhibit my full ability to comprehend the extent.
Reading your words have cleared the fog from my eyes as to what Master 7 feels and suffers, for this i am and will be eternally grateful.
I can now place his feelings and validate his experiences daily.
Being relatively new to the whole Narcolepsy world, a mere 18mths since diagnosis, and now battling anger, frustration, hallucinations, paralisis, night terrors, day dreaming on top of the ever returning sleepiness and the sudden cataplexy that seems to knock the life out of my sweet poor boy.
Feeling helpless but now armed with your words i have understanding
Again thank you .

xoxoxo
Juliette Lyddieth, Sydney Australia

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julie October 14, 2012 at 3:11 pm

Hi Juliette,
Thank you so much for reading and commenting on my blog. I’m so sorry to hear that your child was recently diagnosed with narcolepsy 18 months ago. Narcolepsy isn’t easy to adjust to, but we are a supportive community. Although narcolepsy doesn’t go away, each day gets a little easier and more manageable to me. I continue to learn coping strategies to live well and happily.
Hang in there. Your support of your child’s experience is a wonderful thing that will help so much.
Cheers, Julie

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Zoe October 14, 2012 at 8:35 am

Julie… I just wanted to say thank you for your blog. I stumbled across it today, on a day when I really needed something like this… and I found your page.

It’s hard to explain to others the personal war that we fight with ourselves every day. Each morning, waking up to battle and arming ourselves with medication, coffee, energy drinks – the works.

Personally, like you I just ignored my N. Successfully I might add, for 14 years. Then, recently, right as all of my hard work in life started to pay off for my career – I started losing the daily battle.

It’s inspiring and comforting to see someone like myself reach acceptance of their N, because fighting it (in fact, myself) every day is exhausting.

I hope I too can find peace with it. Thank you for sharing Julie.

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julie October 14, 2012 at 3:08 pm

Hi Zoe, Thank you so much for your comment. I’m so sorry to hear that you’ve battled so long with N. We do our best each day and you should be proud. Our struggle is invisible, but still very real. Hang in there! Sending wakefulness and smiles your way, Julie

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Mitch Mitchell October 15, 2012 at 4:12 am

How wild. I used to work with someone who had narcolepsy. She seemed like she barely kept her eyes open, but she was on some kind of medication that allowed her to stay awake. She was also kind of a miserable sort, I hate to say, and I often wondered if it was related to that.

Luckily I don’t have that. I do have sleep apnea, and even with the CPAP I’m tired all the time, but I do sleep a little better. I’m sure it’s a combination of other factors as well, but I get those overwhelming urges to sleep, but none of the associated pain. Good thing I work from home so I can sleep, but it never happens in the evenings. I guess I need more research.

Thanks for sharing this; great perspective on it.

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julie October 16, 2012 at 7:08 pm

Hi Mitch, Thank you for checking out my blog and leaving a great comment! I’m so sorry to hear you have sleep apnea. This is a difficult disorder as well. Hang in there! Sending wakefulness your way, Julie

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flora arcuri October 25, 2012 at 1:24 am

My poor grandson Andrew is only 10. He has had narcolepsy for over a year. We have watched this beautiful, smart athletic child struggle with the side effects of the drugs that are keeping him awake so he can go to school. No more sports, although he was a fantastic pitcher. No more kisses and hugs because he is angry and grouchy with the meds, He has controlled his cataplexy where he falls to the ground like a wet noodle, but is now having night terrors and scratching himself to death. He is isolated in his room where he feels safe and forgot how to socialize. I want my grandson back, but unless the FDA can get the drug companies to create what is missing in his brain, we can’t know the future of this poor child.

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julie October 25, 2012 at 1:30 am

Flora,

Thank you for your comment. I’m so sorry to hear that your grandson has been battling narcolepsy this past year. It breaks my heart to hear how difficult this disorder is on your grandson. I know first-hand the challenges from battling the same symptoms, but I truly cannot imagine dealing with the challenges of narcolepsy at such a young age. It is children like your grandson who inspire me to continue fighting for narcolepsy. We will build a brighter future for narcolepsy together.

With gratitude, Julie

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Jen October 25, 2012 at 1:47 am

I just read this and cried through the entire thing :( I was diagnosed only a couple of months ago and I’m honestly not coping with it at all. I was less distraught BEFORE the diagnosis! I have such a fear for my future.

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julie October 25, 2012 at 2:07 am

Jen,
I’m so sorry to hear that you were recently diagnosed with narcolepsy. I am sorry to make you cry. Please trust that things will be okay. You’ve been through a lot of adversity and now you get to grow a greater support system and find strategies that work well for you with narcolepsy. I’ve been diagnosed over five years and although I’m not “better,” I have found better coping mechanisms, strength and friendship along the way. Hang in there!
Sending wakefulness and smiles your way,
Julie

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Denise Krivitsky October 25, 2012 at 8:15 am

Wow!!! I just found you through some research on the computer. As I read the above, I had tears running down my face. You put it into just the right words. I am always left feeling frustrated when trying to describe narcolepsy to others. They just don’t understand. I have had narcolepsy for about 5 years along with sleep apnea. It seems to have gotten worse lately, and I have taken 2 serious falls in the last 3 months. I know it’s because I have ignored the “heavy cloud” feeling I get and I try to push on. I was actually standing in front of the microwave, waiting for something, and fell straight back, my head hitting the kitchen floor quite hard. I thought I had cracked my head open. I didn’t, and I know I should of sought medical attention, but have no insurance.
Thank you for your website, and I can’t wait for the book. I feel like I have found “family” now!!!

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julie October 29, 2012 at 12:22 am

Denise,

Thank you for your comment. I am so sorry to hear that you have had narcolepsy for about 5 years, along with sleep apnea. It sounds like your falls may be cataplexy attacks. Our narcolepsy “family” is a wonderful support system. My book will be out in December so please check back for details soon.

Hang in there! With gratitude,
Julie

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Alanna October 25, 2012 at 12:59 pm

Your descriptions are so poetic and evocative – they really convey how it feels. Congratulations! I have spent so much time searching for the words to explain it to people, and writing often – thanks for offering up such an honest and expressive account of what narcolepsy really feels like.

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julie October 26, 2012 at 6:15 pm

Alanna, I’m so glad the essay speaks true to you! Many thanks, Julie

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Sandra Kelly October 25, 2012 at 1:22 pm

Loved your description of just pulling over when you are driving or finding a place to put your head down – a little nap –
very accurate descriptions julie – you are not alone!

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julie October 26, 2012 at 6:14 pm

Sandra, thank you for your kind comment. Safety in numbers! :-) cheers, Julie

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Kymm Stafford November 1, 2012 at 3:59 pm

A beautifully written article. Like so many said before, it describes how I feel everyday. I was diagnosed 15 years ago but 6 years ago the EDS symptoms increased and are more difficult to control. I’ve just recently started looking into Narcolepsy Networks and Blogs. In the past I felt that if I spent time reading about it I was just dwelling on the disease and I was trying the (don’t think about it and it will go away) plan. That didn’t work. Now I see how helpful blogs like yours can be. Thank you so much for your inspirational words.

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julie November 1, 2012 at 4:17 pm

Hi Kymm,

Thank you so much for your comment. I’m so sorry to hear that you’ve battled these symptoms for so long.

I definitely relate to the “if I don’t think about it, it will go away” plan, especially since narcolepsy is somewhat “invisible” to others, we can try to trick ourselves into thinking it’s not there too. I’ve found that prioritizing my health sometimes does not mean that narcolepsy wins, but that I’m strategizing with narcolepsy towards living my best life possible.

Of course, there is no one “right” way to handle narcolepsy, we are each on our own journeys! I’m so glad that you’ve found my blog helpful along the way.

Sending wakefulness and smiles your way,
Julie

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guimauve November 9, 2012 at 6:30 pm

Wow, Julie! You explain it perfectly… Often I say ‘I don’t go to sleep, the sleep comes to me’ but that doesn’t really get across how painful (and yes, as you say, violent!) it is. I feel like someone sneaks up behind me and puts a hood over my head and I am going down no matter what.

One thing that has helped me is to tell people that it’s like you’re absolutely BUSTING to pee and just as you have one hand on the bathroom door your boss stops you for a friendly chat… You feel like you have to be polite but in truth you can’t even hear what he’s saying (he sounds like the teacher from Snoopy!) because your brain is just screaming to get in there and peeeeee already!

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julie November 11, 2012 at 3:09 pm

Hi Guimauve, Thank you for your comment. I like your analogies very much and may try them out too! Thanks again for reading my blog. With gratitude, Julie

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Alli November 9, 2012 at 6:32 pm

Hi, I loved this post. I am not diagnosed narcoleptic, but I exhibit 3 out of the 4 major symptoms, but I’m afraid to get the sleep study done because in my state it means losing my license and my current city doesn’t have a good public transportation system. I’m moving back to a big city in the spring hopefully, where I’ll finally bite the bullet, but I’m scared still. I know putting a name to it won’t necessarily change anything, but the ramifications of it worry me.

My difference I guess is that I have had fatigue for my whole life, attributed it to depression and didn’t think about it. I also had a tendency to dream before I fell asleep, but didn’t think much of it until the frequency grew. A few years ago I started getting constant episodes of hypnogogic and hypnopompic hallucinations, and started falling asleep in public. This became especially embarrassing in bars where they take falling asleep as a sign of drunkenness, even if I’d barely taken a sip of my beer! I would be talking and start dreaming without realizing it until I snapped out of it and saw the looks on my friends’ and family’s faces.

I had a few questions. Since narcoleptics experience little NREM type sleep, our nights are mostly REM type, do you experience intense and sometimes lucid dreams? Do you feel like you have nightmares more frequently than you should?

I guess I’m looking for feedback or advice, or admittedly… Validation. My family thinks I’m a hypochondriac who just needs antidepressants and to get over it.

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julie November 11, 2012 at 3:08 pm

Hi Alli,

I’m so sorry to hear that you’ve been struggling with fatigue, sleepiness, and hypnagogic hallucinations. You are not alone.

I understand your very real and valid concerns about possible ramifications of diagnosis. I also know that if you were diagnosed, there are some treatment options that could help improve quality of life. In addition, with so much misunderstanding of narcolepsy and sleep-related issues, there is validation in pinning down a diagnosis with a sleep doctor knowledgeable in narcolepsy/hypersomnia disorders.

Yes, I experience hynpagogic hallucinations. Read more here: http://julieflygare.com/wide-awake-and-dreaming-3/

Hang in there! Big smiles, Julie

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Teresa April 3, 2013 at 8:28 pm

wow… so poetic! and worded perfectly!
i’ve always wished i could express myself and what this feels like so well so that others understand!

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julie April 4, 2013 at 3:17 pm

Teresa – thank you for your comment. I love trying to find ways to express our strange experiences. Thanks for reading! -Julie

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Sylvia April 19, 2013 at 4:58 am

This was the best description to the sleepiness that I feel every day that I have ever read. It actually made me cry, I think mostly with relief, that someone else understood. My family really doesn’t believe the whole thing and I have to listen to their comments and snide remarks often. I have 2 small children and my mother and grandmother help us with them during the day and I cannot find even ground with them. If I wake up with the kids, I am dozing off and falling asleep on the couch by 10-11am and sleep until 2-4pm. If my mom gets the kids out of bed and I sleep until 11am-noon, then I can stay awake the rest of the day, but they then complain about me losing time with the kids (which I was doing anyways falling asleep for 4+ hours). When one is watching a tv show and the other playing a game on their leap pad, I will pull out my phone to keep the sleepiness at bay, which then gets the “you’re an awful parent because you’re on your phone all this time” looks and, they don’t say it to my face but will post meme’s about bad parents on their facebook so I see it later. I’m just trying to do what I can to stay awake so that when they’re done watching their show, I will still be there and not in dreamland. I can’t make them understand and it breaks my heart knowing that they think the way they do, and also that I am in a situation that it even looks like I’m being “neglectful”. I’ve never been able to do the 15min. – 1 hour nap, once I’m out, I’m out and I can’t fix it. Thank you again so much for this description, maybe someday I will have my mom read this, but I doubt it will help her understand.

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julie April 21, 2013 at 2:15 pm

Hi Sylvia, I’m so glad my essay resonted with you. Unfortuantely, many people with narcolepsy and other sleep disorders struggle against misunderstanding from loved ones. I’m so sorry to hear this has been your experience. You are overcoming so much adversity daily to be a mother of two children while battling symptoms. I’m cheering for you! Please consider sharing my essays, videos and book with your family – many PWNs have found this helpful for fostering understanding. Sending wakefulness and smiles your way, Julie

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Nancy Elizabeth Contreras August 25, 2013 at 4:48 pm

Being one of 2000 you hold on to this big secret because you almost feel like you’re from another planet. You’re afraid to tell anyone because they might freak out if they find out and most of the time they do, they’ll start looking at you waiting for you to fall asleep, ask if your ok to drive and even make casual jokes.  So it just seems easier sometimes to go through this battle alone. But after seeing all the people who have replied to your blog and who also relate, its almost like finding that lost planet that I descended from and seeing that there’s other people just like me out there who have gone through the same thing and feel the same way I do. 
After reading your blog I thought to myself, wow, its almost like she’s been watching me this whole time. It’s too surreal to believe that there is someone fighting this battle with me, that knows what I go threw everyday. I feel like there is a void in my heart that is finally beginning to mend. I know that this is only the breakthrough for Narcolepsy awareness and I look forward to see the progress of what’s to come.
Much love Julie, and you are definitely a blessing.  Maybe like me you’ve asked God or the Universe what’s the purpose of this, why was I chosen for this? I think you are an amazing writer and you have helped bring so much light and peace of mind into so many lives already. Thank you for being strong and taking that risk for many of us. I look forward to reading more of your blogs, and catching up with the other ones I have missed. 
Stay strong Julie and thank you for everything your are working toward. 
Your friend and future hair stylist,
Nancy Elizabeth

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julie August 26, 2013 at 5:00 am

Nancy Elizabeth,
Thank you SO much for your kind comment. I’m so incredibly glad that my writing has helped you feel less alone. I can’t tell you how much your comment means to me.
Your friend,
Julie :-)

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Hazel Doland November 1, 2013 at 9:30 pm

What an insightful look into what i go through daily. I was just diagnosed with severe narcolepsy two years ago. For years, I thought it was just my life style. I worked several jobs and thought my body was fighting for sleep whenever it could find it. All that made perfect sense to me, until i got one job 8-4. Every day driving home i would fight falling asleep while driving. This fight i lost on more than one occasion. Riding off the side of the road, barely missing a tree, into the other lane and sleeping at a red light became frequent incidences, too frequent. I decided to go back to the doctors once again. In the past I was tested for anemia, lupus, Lyme disease, chronic fatigue syndrome, all before they decide to to the two-day sleep study and getting diagnosed with narcolepsy. My doctor commended me at the time for coming in for help. I told her, I was too young to die, I was 41 years old at the time. Thank you for sharing what many people have yet to fully understand.

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