Narcolepsy Isn’t Like the Movies: 16 Secret Signs of Daytime Sleepiness

by julie on April 2, 2013

We all know the punch line of the narcolepsy joke – person falls asleep while standing or in the middle of the conversation. My daytime sleepiness doesn’t look like this. On the surface, it doesn’t look like much of anything.

Internally – my sleepiness aches. My limbs become heavy and pressure pushes on my skull. Over 15 minutes or so, I lose my ability to process thoughts and communicate (described best here). Sometimes I do eventually fall asleep. Other times, I snap out of it randomly and return to myself. 

Externally - my sleepiness is fairly undetectable. At it’s worst – friends have reported that I seemed “subdued,” “quiet,” “annoyed” or “dazed.” While I’m experiencing utter cacophony internally – I look “subdued.”

Daytime sleepiness manifests in other ways that we may not associate with sleepiness.

Narcolepsy’s sleepiness can appear as poor mood regulation such as irritability, mood instability and a less positive mood. It can also appear as behavioral issues like internalizing or externalizing (aggressiveness, hyperactivity and impulsivity). Likewise, daytime sleepiness can show as neurocognitive deficits – problems with attention, organization, self-monitoring, planning, memory and verbal creativity. Over time, daytime sleepiness can manifest as poor academic functioning, social impairments and family dysfunction.

16 secret signs of daytime sleepiness:

  1. Irritability
  2. Mood instability
  3. Less positive mood
  4. Internalization
  5. Aggressiveness
  6. Hyperactivity
  7. Impulsivity
  8. Attention deficits 
  9. Organization issues
  10. Self-monitoring deficits 
  11. Planning issues
  12. Memory problems
  13. Verbal creativity deficits 
  14. Poor academic functioning
  15. Social impairments
  16. Family dysfunction

I recently attended a presentation by Dr. Judith Owens highlighting these manifestations of daytime sleepiness in children. Although perhaps exaggerated in children, I believe these signs apply to narcolepsy at any age.  

These not-so-obvious signs of sleepiness are helpful for diagnosis. 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.

For me, irritability, aggressiveness and fidgeting are huge signs. Blaming narcolepsy doesn’t make this behavior “okay” or excusable, but acknowledgement is the first step toward change. Discussing with loved ones will allow us to work together to put my moodiness to bed. Literally.

Of course, moodiness isn’t always sleepiness in disguise. Hunger manifests as moodiness often. And sometimes moodiness is plain ol’ moodiness!

In closing, sleepiness is more than nodding off in one’s soup bowl. 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. 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).

Have you experienced  not-so-obvious signs of sleepiness? Recognized these signs in your loved ones? Found healthy coping mechanisms? Please share in the comments below!

{ 47 comments… read them below or add one }

Elizabeth April 2, 2013 at 10:30 pm

This is such a great post, Julie. I resonate completely with the various manifestations of daytime sleepiness that you list here. This was especially true during childhood, and because of the misconceptions about how narcolepsy should “look,” ultimately delayed my diagnosis for over three decades.

It concerns me that so many children who struggle with narcolepsy are being mistakenly labeled with ADHD, depression, etc. 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. Thank you for continuing this important work.

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julie April 3, 2013 at 1:36 am

Elizabeth:
It’s my greatest hope that my blog and book can help change the stereotypes of narcolepsy. I agree that sleepiness in children may be misperceieved as hyperactivity and lead to possible misdiagnosis. Thank you for your encouragement and support of my efforts.
With gratitude,
Julie

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Brandon September 19, 2015 at 5:48 am

Elizabeth,
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. 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 wonder if she has the same narcolepsy disorder as me and not ADHD. All the great information on this page and similar sites have helped me to better understand what I can do to help reduce symptoms.

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Rebecca Gardner April 3, 2013 at 12:35 am

THANK YOU!!!!! This was a great article! It explained me to a “T” and what I deal with in my life! I tend to get irritated when people think I’m lying about having Narcolepsy because I don’t have episodes “like in the movies.”

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julie April 3, 2013 at 1:31 am

Thanks for reading, Rebecca! I’m so glad this resonated with your experience too.

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kerry April 3, 2013 at 2:14 am

Your article really hits home for me. I have a 9 yr old son that has narcolepsy and pretty much everything listed on your list I experience with him. I try to be positive and help him work through these issues on a daily basis. I want him to be happy and have the best life possible…..everyday id a struggle though :(

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julie April 3, 2013 at 12:38 pm

Hi Kerry,
Thank you so much for reading my post. I’m sorry to hear that your young son has narcolepsy and that every day is a struggle now. Your patience and support of his experience is invaluable for helping him to succeed with narcolepsy. I do believe narcolepsy can become more manageable for some individuals with age and time. I know for me, I continue to grow and become more self-aware each day.
Thanks again,
Julie

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Lacy April 3, 2013 at 3:03 am

This really hit home for me because it also described me to a “T” but it had never occurred to me that the symptoms were from my Narcolepsy, nor was I ever told so by my doctors. 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. 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 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!

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julie April 3, 2013 at 12:34 pm

Hi Lacy,
I’m so glad this information was helpful for you too! When the doctor presented these – so many lightbulbs went off in my head. You are Wonder Woman for taking on narcolepsy and raising children. I’m so impressed and inspired! I hope their sleep patterns settle down so you can get some much deserved rest too!
Big smiles and many thanks, Julie

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Claire Metters April 3, 2013 at 11:13 am

Oh man…..so true. I have insane bouts of aggressiveness and hyperactivity. Kids know to give mum a wide berth after a nap, until she’s had a brew! Pulling myself out of a strategic nap is like a psychological battle. Every part of me wants to stay in my cosy, warm slumber, so its no great surprise that I get a bit grouchy. It’s the equivalent of not being a morning person, just repeated! As for hyperactivity…well any surprise burst of energy is gonna get utilised. In fact, I’ve a list for such moments :-)

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julie April 3, 2013 at 12:28 pm

Hi Claire – I’m so glad this rings true to your experience too! I’ve actually written a follow-up post about grumpiness coming out of naps – because I feel this is another important issue to discuss. SO glad to hear you experience this too. A list for surprise moments of energy – what a great idea! Thanks for reading, Julie

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richmeister April 3, 2013 at 1:04 pm

Im off for my first MLST next week and I cant wait. Im sick of living in a cloud of fatigue where I just cant function. Sick of being labelled lazy or being asked if I had a late one last night. Im almost convinced I have Narcolepsy. Whatever it, it sucks!
Love the blog.
Rich, UK.

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julie April 3, 2013 at 3:30 pm

Hi Rich – I’m sorry to hear you are experiencing fatigue and can’t function. I’m so glad to hear you are getting your first MLST next week. Finding out the cause and what solutions are available will be very helpful. You deserve to feel wakefulness and I hope this is the beginning of the change. Best of luck, Julie

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Kathy Herbst April 3, 2013 at 3:00 pm

Hey Julie,
Again, I want to say what a wonderful job you are doing of getting the word out about Narcolepsy. 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 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!! Maybe they should try getting all of their personal care, eating, going to class and HOMEWORK done in the same amount of time a PWN has in a day which is probably about 4-6 hours less ( due to nap-times and/or periods of inattentiveness) than the other students!!! You GO Girl!!

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julie April 3, 2013 at 3:29 pm

Thank you, Kathy. It’s my greatest hope to change these misconceptions of narcolepsy and sleepiness. I’m sorry to hear that some disability officers at schools are not understanding the challenges of narcolepsy. It’s heart-breaking. Ever onward – keep fighting! -Julie

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Liz April 3, 2013 at 10:50 pm

Julie,
My daughter was just diagnosed with narcolepsy–she is 28, and is having a horrible time with it. Thank you so much for your website; it has been the only positive, encouraging bit of information we have seen so far. Please continue to pass on information and spread hope.
Liz

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julie April 4, 2013 at 3:16 pm

Liz – I’m so sorry to hear your daughter was recenlty diagnosed and is struggling with it. Hang in there – I promise it gets more manageable with time. Thankk you for supporting her experience. -Julie

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Chelsea April 4, 2013 at 2:28 pm

Julie,
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. So many times I have tried to explain to the people unfortunate enough to be stuck near me when it hits, but my inability to describe it accurately just sounds like an attempt to make a poor excuse.
No doubt this will be a struggle. However knowing these are actual signs of ESD is helpful. Perhaps if I explain this in advanc when I’m my cheerful self it will make a larger impact and will lead to a more tolerant environment overall. Thank you!

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julie April 4, 2013 at 3:16 pm

Hi Chelsea – I’m so glad this rings true for you too! I agree, acknowledgment is helpful and hopefully will help us not to take this out on others and recognize EDS right away. Everyone has weaknesses and bad moods. Understanding ours is a great head-start! With gratitude and big smiles, Julie

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MAURO April 4, 2013 at 3:02 pm

CIAO A TUTTI…MI PIACEREBBE POTER LEGGERE TUTTO L’ARTICOLO E TUTTI I COMMENTI IN ITALIANO…SONO UN ITALIANO NARCOLETTICO E HO CAPITO SOLO IN PARTE QUELLO DA VOI SCRITTO E COMMENTATO…

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julie April 4, 2013 at 3:12 pm

Thank you for visiting my site, Mauro!

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Chris Brown April 5, 2013 at 2:42 pm

Thank you again Julie, for everything you do for spreading the word about us. All boxes check for me as well, it’s just harder to recognize in yourself. I had just assumed that everyone I saw after waking up was being intentionally buttheadish. Just a quick question,where does AB (Automatic Behavior) fit in?

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julie April 5, 2013 at 6:39 pm

Hi Chris, Thank you for your support and comment.

To the best of my understanding, “automatic behavior” is when we are getting very sleepy but continuing with physical activity (like typing, driving, performing tasks) even though our mental consciousness is fizzling fast. 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. Automatic behavior is definitely a symptom of narcolepsy – perhaps addressed somewhat here under “memory deficits.”

Hope that helps! Julie

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Adrienn April 21, 2015 at 5:05 am

Ohmygod. I do this all the time. I drive home and have no clue how i got home. I do my work and the next day have no clue where I left off and what’s next. I read something and can’t remember what I just read. I can’t believe this is narcolepsy. I can check off all that’s listed. 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. I was diagnosed with Adhd and been taking Ritalin for 6 years now. Can’t sleep at night time. Have an aggressive, irritated attitude a lot of times for no reason damn I hate that! I get irritated by almost everything and I never know why. It really affects my relationships especially because I go off on people like a mad person who should be locked up. When I get enough sleep I am a totally different person. Sometimes I skip a night so the next night I will be able to fall asleep like “normal” people and wake up in the morning instead of 9:30 am. People are scared of me because I am so angry when I wake up. SO WHAT’S THE SOLUTION??? Is there a cure? I’m 34. I’m typing this with a sleeping pill in me and 5htp 100mg and it’s 1am. And I was fatigue pretty much all day

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Nick Lynch April 13, 2013 at 12:20 am

Hi Julie, love this post. I mentioned something similar in one of my first posts on my blog on blogger! I’m so glad to see that I’m not the only one who felt the need to explain this haha. I love what you’re doing for the narcolepsy community, I’m actually trying to do the same thing. So you are now my role model in my cause!

I hope to get better acquainted with you, Julie. I would like to collaborate with you on some ideas, maybe even pick your brain a little. Just a little :)

Keep up the great work Julie, you’re truly inspirational!

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julie April 14, 2013 at 5:08 pm

Hi Nick, Thanks for your comment. I’m so glad you enjoy my blog and have been blogging too! Can’t wait to check out your site. Big smiles, Julie

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Mary LaFond April 13, 2013 at 7:12 pm

Thank you, Julie, for all that you are doing. You and I were in touch during the
submission of letters for the FDA. I love how, in so many different ways, you
are shedding light on the multitude of questions, about Narcolepsy, that no
one touches on. When my daughter was young, I didn’t understand her moodiness because she showed no signs of Narcolepsy until 11th grade. It is
horrible for a child to not have any control over wakefulness and feel that he/she
is the “black sheep” (in addition) for his/her moodiness. I was not understanding
and that really hurt her and her self-esteem.
One SUPER VALUABLE item that REALLY needs more focus is the connection
between the lack of hypocretin, the immune system and gluten intolerance.
My daughter, who is 30, has had to find this out the hard way…….but it is a
real medical issue connected to Narcolepsy. She has had to cut out all dairy,
wheat, gluten, beans and corn and it has made a large difference.
God bless Julie for giving of herself so that all narcoleptics can, hopefully,
have a chance to live a normal life.

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julie April 14, 2013 at 5:01 pm

Thank you so much, Mary for your on-going support of my efforts and your daughter’s experience. I’m so glad to hear your daughter is doing well with dietary changes to improve her symptoms.

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patrick April 18, 2013 at 1:29 am

Hi Julie, I recently read your book. Very interesting read! I get the impression that no two cases of Narcolepsy are equal, but I thought I’d seek your opinion on certain things. I apologize if answers can be found elsewhere in your blog.

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? This may include actually getting work done at a computer, or sleep walking to/from/at work (with the occasional bump into a wall). I suppose that could be within the realm of “automatic behavior”.

Lastly, would Narcolepsy even allow you to deprive yourself of sleep (<2hours worth) after a day of exhaustion and yet somehow feel significantly better the following day (seemingly energized by a "second wind" which is apparently much stronger than the "first wind", yet not backed up by a caffeine increase)? Then follow this with a "regular" night of sleep, experience sleepiness once again, and maintain this cycle for days/weeks at a time before reaching some kind of limit? I did not get that impression from your book, although in most cases where you deprived yourself of sleep I believe you were out drinking. :)

Great work with the book and the blog Julie!

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julie April 18, 2013 at 1:56 pm

Hi Patrick,
Thank you for reading my book and checking out my blog. Sleepiness comes in many forms. “Sleeping with your eyes open” sounds like automatic behavior. Sleep is such a fascinating complicated thing, especially for people with narcolepsy. Circadian rhythm timing issues may also contribute to the mis-timing of sleep and wakefulness. This is an area researchers are still learning about.
Sending wakefulness and many thanks your way,
Julie

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Patrick April 23, 2013 at 3:39 am

Hi Julie,
Sleep is quite fascinating. It’s a shame most people (like myself) pay no attention to it until our entire body seems to be breaking down. Equally interesting (and somewhat unfortunate), is how many of the symptoms resemble those of various forms of migraine for example.
Thank you for the wakefulness, right back at you.
Cheers,
Patrick

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Lexi July 11, 2013 at 3:09 pm

Thanks so much for writing this article. I’m 16 and I have narcolepsy, and I suffer from all of the other symptoms that come with it. I have a really tough time at school – a lot of my friends don’t talk to me anymore because I’m aggressive and quiet, I fall asleep in class almost every day and miss vital notes and lectures that cause me to fail other things and my grades drop significantly… I used to be a 3.8 to 3.9 student, but this past year I got a 3.4. I’ve also had teachers ridicule me when I fall asleep, and sometimes my own parents are mean about it. It’s nice to see narcolepsy described in this way because it’s exactly how my day to day life feels. I’ll probably end up using this article to explain to people how I feel, since I’m horrible at doing it myself and other articles don’t quite cut it. Thanks again!

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julie July 11, 2013 at 3:22 pm

Hi Lexi,

I’m so sorry you have narcolepsy at age 16. You are overcoming invisible adversity daily and I know what it takes to get through every day with narcolepsy – you are a hero. My grades suffered too when adjusting to narcolepsy, but 3.4 is stil very impressive. Hang in there! I’m cheering for you.

Please share this blog along with my memoir with your friends and family. My memoir has been very helpful for family members of people with narcolepsy and it’s a quick fun read.

Sending wakefulness and smiles your way,
Julie

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Mike Fitzgerald January 18, 2014 at 3:21 am

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! I’ve been thinking as I read, “why can’t I express my thoughts as clearly?”
Then I read about these 16 signs – OMG! I was only diagnosed 2 1/2 years ago but have been struggling trying to figure this all out for at least 15 or 20 years. I had no idea sleep deprivation manifested itself in so many ways, so much like me. I guess even having an invisible disease doesn’t necessarily make me see it a whole lot better than people who don’t have such ailments. This is a huge revelation for me. I look forward to meeting you at the NN convention in Denver. I would love to share some of my story if time allows.

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julie May 22, 2014 at 2:25 pm

Thank you so much for reading my book and this post, Mike! We are making revelations together about our experiences – isn’t it fun? :-) Sending wakefulness and big smiles your way, Julie

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Valencia April 23, 2014 at 11:08 am

Julie,
I also want to thank you for all you are doing.
I was having all the signs that you are talking about.
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. I also think my Father and his Brothers have it. Anyway my symtoms have got worse. I use to always work two or three jobs . And alway could handle night shift. However my irrability level was very high, aggressiveness with my words was getting worse.
My other Aunt was telling me it was a type A personality. So I blew it off till I got the flu and was watching TV when I tried to move my arm and legs, I could not move it Scared me! I also was seeing people that were not there hearing a radio when there was nothing on. So I was a wake but asleep and the something when I was at work they would say I said something or acted a rude manner and could not recall that it ever happened. But since I have been Diagnosed my supervisors at work said it was amazing I did a 180 turn around. My roommate said that I look better more positive less glum. The doctor said I need to stay moving at a fast pass to boost my adrenaline. So that I will not have any issues! However my job HR department can not understand. I tried educating them but they don’t want to learn anything. Two times that I left work, I was already gone just going threw motions. They should have had me go to the clinc or called someone to come after me. But no ! I almost got into a wreak when I seen light and sirens. I swerved it work me up out of that daze feeling. The other time I left early from work and clasped in my living room. What can I do to get my employer to understand?

Please help me if you can?

Thanks! Valencia

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julie April 23, 2014 at 5:29 pm

Hi Valencia, I’m so sorry to hear that you have narcolepsy and that it is proving challenging to help your employer understand. 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. Sometimes a letter from your doctor may be helpful. Continue to advocate for yourself and your narcolepsy – check out my mobile app or resources page for facts sheet you can download and share. You are not alone in this struggle. Many people have a hard time helping others understand. Stay strong, you are an amazing person overcoming so much adversity!

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Josh June 12, 2014 at 11:32 pm

Julie,

I was recently diagnosed with Narcolepsy at the age of 23. 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. Your blog helped empower me and give me confidence. I read your story and recognized myself.

Thank you for the support and courage.

I would like to point out, however, that though uncommon, the stereotypical Narcoleptic symptoms can occur. Often times I found myself looking just like the pictures at the beginning of the article. 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.

Thankfully, my job was understanding and my wife a supportive angel, so even at the worst I was able to get by. I am so grateful to your work and your blog for the network of support.

I now realize that we are not alone. Thank you!

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Melissa June 17, 2014 at 6:45 pm

Julie,
I was diagnosed with narcolepsy about 7 years ago. I thought I was just overstressed. I was not my normal self and I knew it. I believe I had it even through college. I would experience ab driving my 7hr drive back home. I would get upset because I couldn’t remember driving through multiple towns. Teaching was overwhelming for me being undiagnosed. I gained so much weight trying to snack to stay awake to grade papers or do lesson plans then to realize I graded those papers in ab mode and would then have to recheck them. My friends were getting upset with me. My parents thought I was just mismanaging my time or being lazy. It was one friend who is a pediatrician that told me she thought I had narcolepsy and even though I had told my doctor already she told me to go back and tell him I wanted a sleep study. I did and as much as I hate narcolepsy, I was relieved. I wasn’t just being lazy and I had an answer finally to why i felt like i did. I now could get something to help me. I still struggle with guilt that I shouldn’t feel. I try to explain to my co-workers but I don’t think they understand completely. I have been told it’s all in my head. I have lost relationships with people I really cared about telling me my narcolepsy and safety would worry them too much. I get frustrated by people who try to limit me because of my narcolepsy. I don’t want it to keep me from doing whatever I want to do even if it might mean making a few alterations by adding a nap here or there. I want to be able to say I have narcolepsy but it doesn’t have me. The meds I’m on make a huge difference. If overly tired or stressed I still experience mild cataplexy. My facial muscles will slacken, knees buckle slightly, I might drop stuff but now this only happens on rare occasions. I also still occasionally experience eds sometimes at work. I just get kinda dazed and will usually experience ab. I wouldn’t be able to do the things I wanted without them. My memory is one of my biggest frustrations currently. It’s nice to be able to find others who know what you are going through especially those times you feel those around you don’t understand. I can get very defensive about narcolepsy and don’t appreciate all the jokes about it. But I can find humor in it which I think helps me cope. When asked about my narcolepsy my first response is usually “Yes, I can eat soup! ”
Thank you !
Melissa

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Sharon July 4, 2014 at 4:59 am

I am so glad to have stumbled across your writing! Just kept saying, YES, as I read your description of signs of sleepiness. In our house, I can usually muster the words ‘Angry Bear’, which serves to desribe and warn everyone that I am my exhaustion is getting to the irritable grunty, gruff, abrupt with my words stage. At that point, my cognitive reasoning is pathetic so it is helpful to be told to just give into the sleep. I can go to sleep as angry bear, and wake up 15 minutes to an hour later, all sweetness and light. You touched on automatic behaviour. 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. 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? Thanks for the awesome descriptions, I will share to spread understanding. I believe Narcolepsy has gifts too, but I am still waiting to fully unwrap some of them.

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Autumn October 24, 2014 at 4:13 pm

Julie,

I am so happy to See all of my symptoms on one list together. I have been confused since my diagnosis as to what is from the N and what might be something else. It’s heartbreaking be mourning the loss of your former self, only to then lose those you love as a result of these signs. I am starting to have hope again, and I no longer feel alone Thanks to the support and love I have found on the support group forums and your diligence to perservere above the labels we live with.

Autumn
Savannah, GA

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Felicia Jane March 5, 2015 at 1:21 am

I have to say- that you for writing this. 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. (I refuse to let myself be groggy during the day). However, I can say my ability to make decisions has been impacted as have my emotional well being. I find that I stay away from emotional stimuli and I realize it is a coping mechanism.
As I discover more about my disease I am tempted to curl up in a ball and hide.
But I have big dreams and I won’t let go over them.

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Stephanie March 15, 2015 at 3:29 pm

Thank you so much! I think this might explain my childhood even. “Hyperactive” as a kid then diagnosed “Bipolar” at 15. My current shrink does not think I’m bipolar, just depressed. This gives me all kinds of hope to get off some of the drugs I’m on!

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Rhonda March 17, 2015 at 12:53 am

I’d send this to the people I used to work for, but they wouldn’t read this just like they didn’t read any of the pamphlets I gave them on narcolepsy to read so they’d understand what was going on with me. Real understanding for a health care agency, huh? Rhonda

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Jullia March 22, 2015 at 2:00 pm

Hello, man, this post is an eye opener for me. I have been told throughout my years that they thought i had narcolepsy. But i was always like nu uh. I dont randomly fall asleep where im standing. Etc.. but i think this could be exactly what is wrong with me and prob has been for the almost 18 years that ive been afflicted. Thank you on shedding some light, so that NOW i can seek the proper medical channels to maybe help my condition.

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Chad July 19, 2015 at 3:36 am

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. I’ve become known as this guy looking for an excuse for why I can’t ______. Or why I didn’t ______. I don’t have physical cataplexy, have never fallen in a heap like I see in videos. I was diagnosed in the fall of 2013 and the doctor told me I would have a whole new life. I told her I’d be happy to get the baby elephant off my back. So infuriated when I CANNOT sit for 10 minutes without a sleep tidal wave, but I can get up and run 5 miles or bike commute home. I was awakened once in college in class by the sound of my head hitting the desk. Every one around me is giving up on me relationally. Sister, Dad, wife, employers (and past employers, plural) nobody feels relationship comes from me. I know nothing occurs to me when in a relational situation. Actually have NO thought whatsoever sometimes. I’m taking Nuvigil and Adderall (had taken Efexor instead of Adderall at first – what a disaster – couldn’t give attention to text – missed a month of personal banking and got lots of delinquency mail. I seem to freeze real hard when emotions are high with people close to me. They hate it that I don’t communicate – then emotions go up more – which makes it harder for me to talk at all – Its like Chinese hand cuffs, the harder you pull the more stuck you become. Can a person have emotional cataplexy?

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nebet het August 19, 2015 at 9:09 am

My son 7 has just been diagnosed with N without C, this site (page!) has illuminated so many dark areas of my sons life. It is sad, that as parents we didn’t know how to help, but really encouraging for our future.

Our pediatrian said exactly the same thing about our boy sleeping after 5 minutes in the car – “I go to sleep in the car too” but I never had such an insightful response as Julie.

N is not rare actually, it is simply under diagnosed.

Thanks again for an awesome resource

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