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24.12.2014
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We all know the punch line of the narcolepsy joke – person falls asleep while standing or in the middle of the conversation.
Narcolepsy’s sleepiness can appear as poor mood regulation such as irritability, mood instability and a less positive mood. It concerns me that so many children who struggle with narcolepsy are being mistakenly labeled with ADHD, depression, etc.
It’s my greatest hope that my blog and book can help change the stereotypes of narcolepsy. My daughter at age 7 has been showing signs of narcolepsy, symptoms like figiting and not able to control her body from moving while sitting at table to do school home work. Again, I want to say what a wonderful job you are doing of getting the word out about Narcolepsy.
My daughter was just diagnosed with narcolepsy–she is 28, and is having a horrible time with it.
This site is a godsend, every article you write resonates within me, and this particular article could have been written ABOUT me specifically! I really have a hard time controlling my irritability, agressiveness and the world is against me attitude I get when I’ve pushed myself too far into ESD in an attempt to get something done. Thank you so much, Mary for your on-going support of my efforts and your daughter’s experience. Would it make sense for a Narcoleptic to become somewhat of an expert at “sleeping with your eyes open” rather than finding yourself taking naps due to daytime sleepiness? I’ve read your book and have been reading various posts you’ve written for some time but this one hit me right between the eyes! When my grandfather passed away, I was talking to my Aunt and she said my grandmother that I never had a chance to meet had Narcolepsy.
Hi Valencia, I’m so sorry to hear that you have narcolepsy and that it is proving challenging to help your employer understand. I would like to point out, however, that though uncommon, the stereotypical Narcoleptic symptoms can occur. Thankfully, my job was understanding and my wife a supportive angel, so even at the worst I was able to get by.
I always thought there was something wrong, didn’t know what, lots of hungry, lots of hurry through days, manic energy when on foot, dreading sitting down for a class, I know sleep is coming whether I like it or not. My son 7 has just been diagnosed with N without C, this site (page!) has illuminated so many dark areas of my sons life. They can also help people living with narcolepsy recognize daytime sleepiness in their everyday lives, because once diagnosed, treatment and lifestyle changes may improve sleepiness but are unlikely to erase it. Sleepiness¬†is as invisible as insulin levels in diabetics, but without objective tools to measure sleepiness yet, we must do our best to subjectively recognize it. I resonate completely with the various manifestations of daytime sleepiness that you list here.


Your blog and others like it are critical to changing public opinions about narcolepsy, moving us away from Hollywood stereotypes and toward more realistic descriptions from people who live with narcolepsy. I agree that sleepiness in children may be misperceieved as hyperactivity and lead to possible misdiagnosis. We don’t want to have her feel she is different than the rest of her peers so we keep telling her to breath and think of a peaceful place to help calm her body and clear her mind to focus on the task at hand. I have a 9 yr old son that has narcolepsy and pretty much everything listed on your list I experience with him. I’m sorry to hear that your young son has narcolepsy and that every day is a struggle now. I knew obviously just plain old grumpiness and irritability were signs but the others I did not know about and often wondered what else was wrong with me that could be causing these symptoms. I think what you said today should be included in a packet of information to be given to disability officers at schools everywhere, at all levels!
I agree, acknowledgment is helpful and hopefully will help us not to take this out on others and recognize EDS right away.
Often automatic behavior happens right before fully falling asleep and upon waking, the person doesn’t remember having done that task or where they left off.
I’m so glad to hear your daughter is doing well with dietary changes to improve her symptoms. I’m 16 and I have narcolepsy, and I suffer from all of the other symptoms that come with it. You are overcoming invisible adversity daily and I know what it takes to get through every day with narcolepsy – you are a hero.
My memoir has been very helpful for family members of people with narcolepsy and it’s a quick fun read. I wish I had the magic answer for how to help your employer understand, it’s not really my area of expertise, I just try to raise general awareness in the public and tell my story. I was becoming depressed before my diagnosis due to the fact that i would lose consciousness driving and was having increasing difficulty functioning throughout my day.
My doctor told me I had severe narcolepsy (I was diagnosed in 2009) but I didn’t believe her because I have a good handle on staying alert.
It is sad, that as parents we didn’t know how to help, but really encouraging for our future. The family consists of a frequently absent husband, a wife, an older son, two younger sons, and the husband's mother. Over 15 minutes or so, I lose my ability to process thoughts and communicate (described best here).¬†Sometimes I do eventually fall asleep. Although perhaps exaggerated in children, I believe these signs apply to narcolepsy at any age. In a sense, sleepiness is like a soul – floating around undetected, only seen when it takes shape in a body (like in our mood, behavior or performance).
Your patience and support of his experience is invaluable for helping him to succeed with narcolepsy. Thanks so much for clearing that up for me Theses symptoms are especially hard to deal with when dealing with a 2 year old & 3 year old but I do the best I can. I am so tired of hearing that giving a student with Narcolepsy extra time for assignments is causing an unfair advantage that the other students don’t have!!
I’m sorry to hear that some disability officers at schools are not understanding the challenges of narcolepsy. I had just assumed that everyone I saw after waking up was being intentionally buttheadish.


It took several years of my symptoms increasing in severity until I began falling asleep driving, talking, walking and eating, but at my worst it did happen regularly along with most of the other mentioned symptoms. When the husband leaves for his fourth and final time, he takes all the household's money. I always knew having kids was going to be a major challenge for me but I didn’t know I was going to end up with two extremely hyper-active kids that NEVER SLEEP!
I’ve also had teachers ridicule me when I fall asleep, and sometimes my own parents are mean about it. Continue to advocate for yourself and your narcolepsy – check out my mobile app or resources page for facts sheet you can download and share. At that point, my cognitive reasoning is pathetic so it is helpful to be told to just give into the sleep.
However, I can say my ability to make decisions has been impacted as have my emotional well being.
Every part of me wants to stay in my cosy, warm slumber, so its no great surprise that I get a bit grouchy. Circadian rhythm timing issues may also contribute to the mis-timing of sleep and wakefulness. I can go to sleep as angry bear, and wake up 15 minutes to an hour later, all sweetness and light. I jokingly call it, Mom-After-Midnight, who sometimes takes over, and will do research online, eat all of the ice cream in the house, and sometimes even bathe. I thought i was the only weirdo in the wold who can fall asleep during the day even while the cashier is scanning my items, but when I’m finally ready for bed, i cannot fall asleep.
Evidence includes puddles of melted ice cream on the floor in the morning, smears of chocolate around my mouth when I look in the mirror in the morning, and throughout the day surprising myself with vague recollections of facts or images I saw when I should have been sleeping. I do have some awareness that I am awake but am on autopilot and can’t chart my own course, if you know what I mean. Sometimes I wish there was a Help button I could push so my family could just guide me into bed, without having to verbalize, which becomes difficult. Do you ever wish there was a battery indicator on your forehead so your loved ones could see where you are, energy, cognitive processing, verbal fluidity wise? Mankind has always been keen on doing more than just … Manage Your Thoughts Manage Your Life for Self Mastery Lessons in Self-Mastery -You Are Separate From Your Thoughts? In relation to self-mastery there will come a time in everyone’s life where … Slaying The Dragons Of Mediocrity By Being Proactive Are you tired of the same old existence? It really affects my relationships especially because I go off on people like a mad person who should be locked up. Do you want more out of life than what life seems to be handing … It is All in Our Powerful Mind Focusing on the powerful mind in a positive and potent way.
We have wonderful … Step Closer Towards Your Dreams Self-help and personal improvement sources show people how to live the life of their dreams.
Deepak Chopra, founder of the Chopra Center for Well Being, has authored fifty-five books on achieving health through mind and body wellness.
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