Bugs, Sex, Lies & Homeless People: My Top Ten Cataplexy Triggers

by julie on January 27, 2014

cataplexy julie flygare narcolepsy blogCataplexy is a fascinating symptom of narcolepsy – a sudden loss of muscle tone, without loss of consciousness, often triggered by emotions. I experience minor cataplexy daily – knees buckling, jaw slackening, eyes fluttering or hands trembling. With medication, my full-body attacks are once every couple weeks.

It’s not always strong or positive emotions that cause my cataplexy. Here are some of my biggest triggers. Please share yours in the comments. 

1. Killing a bug – An itsy-bitsy ant crawled on my stove as I boiled water for pasta. I grabbed a paper-towel to squash it, but when I re-focused on the ant to kill it, I began teetering like the Leaning Tower of Pisa.  My body was frozen like a dear in headlights while I watched the ant successfully cross the counter. Bugger!

cataplexy triggers narcolepsy blog julie flygareI cannot make direct contact with an insect. However, I can kill a bug from a distance, spraying a cleaning spray in its direction. It’s something about the direct contact that’s too social/personal – “the bug versus me”. Cricket-spiders are the worst.

2. Strangers - “Please do not ask for money. Please do not speak to me.” I don’t know why but interacting with strangers on the street is a HUGE trigger. I may seem insensitive to ignore a homeless person asking for money, but muttering “Sorry” would cause terrible cataplexy. 

3. Heat and Humidity – Extreme heat triggers my cataplexy, especially going from air-conditioned environments into extreme heat – i.e. leaving the movie theater or mall in the summertime. 

cataplexy triggers narcolepsy blog julie flygare 24. Winning – I checked my email on my phone: “Congratulations – You are a Winner!!!”  Reading this subject heading, I dropped my phone into my purse. After composing myself, I reached for my phone again and read “You are a Winner of the 2011 FotoWeek DC International Awards Competition! Please check Winners’ PDF to see the list of winning work.” Dropped phone again. Collapsed with jaw unhinged, eyes closed. It took about 5 minutes to communicate to my friend through fits of cataplexy to take my phone and open PDF to find out what place I won – my photo won first place! 

5. Gummy Bears – I am a gummy bear addict, so when my boyfriend gave me a pack of HARIBO one evening, I felt pure bliss. I tried opening the pack but my body became a gummy bear momentarily, slumping onto the floor. Once I regained muscle tone, I ate the package in one sitting.     

6. I’m SO funny! When I think I’m funny, watch out. Communicating my joke with the anticipation of others laughing = worst cataplexy ever. Last week, my brother sent me a funny greeting card that made me giggle but WITHOUT cataplexy, until I tried to show the card to my boyfriend.  The anticipation of Alex thinking my brother’s card was funny hit the cataplexy button.  

7. Lying – “Sorry I forgot to take out the trash,” my roommate said. I responded “Oh, no problem.” but really I’m thinking “It’s NOT okay! Get with it.” – my body crumbles. I cannot hide annoyance.  I cannot say one thing while thinking another. 

This is the only trigger I’ve somewhat found a way around. While studying in the library one evening, students at a nearby table were talking WAY too loudly. It was obnoxious and many people glared their way. I wanted to tell them to be quiet, but feared cataplexy. Interestingly, I decided that these students were innocent, that they didn’t realize their wrong-doing. With this new mind-set, I successfully approached and communicated just fine. Without the double-layer of judgement, it was easy. This had to come from a genuine place of non-judgement, it couldn’t be faked. Channelling my inner Buddha!

cataplexy triggers narcolepsy blog julie flygare 38. Opulence – A few years ago, I lived in an apartment building in Washington DC that had been a fancy hotel in the 1920’s. The lobby had high ceilings, marble columns, a fountain, a fireplace and a piano that played itself. Walking into this building at night made me dizzy and wobbly. I loved this place but something about me being somewhere so fancy-schmancy caused cataplexy. 

9. Sexual excitement – Before medication, sexual excitement caused my cataplexy. Thankfully, this hasn’t happened since treatment, but it ruined many intimate nights. How cataplexic!

10. New visual stimulus - Standing in the check-out line at the grocery store one day, I glanced at the magazine rack to find a new cover girl on Marie Claire magazine. I felt no attachment or emotion about either cover, but I suppose my mind had already filled in the cover with my expectation and now my eyes showed something different. This small dichotomy caused cataplexy. It can take my brain a few seconds to process new spaces, colors and shapes.

Why do these particular thoughts and emotions trigger the paralysis of dream sleep? Does cataplexy give us insight into the purpose of dreaming?  Share your thoughts below!

{ 47 comments… read them below or add one }

tam kozman January 27, 2014 at 7:01 pm

Those are fascinating triggers, Julie! Before Xyrem, my big trigger was always ‘synchronicity'; the sensation of a ‘meaningful coincidence’. Lois Krahn of the Mayo Clinic has written papers, one called ‘Narcolepsy – A New Understanding of Irresistible Sleep’ in which she says that cataplexy provides a rare instance of a window where we can observe the interaction between mind and brain, and one called ‘Characterizing the Emotions that Trigger Cataplexy’.

The Narcolepsy UK site used to have a list of potential triggers; one was ‘response to a call for action.’ I literally fell off my chair when I was asked to serve on the Board of Trustees for the Narcolepsy Network… Another was ‘attempt at repartee’ – used to happen all the time.

Reply

julie January 27, 2014 at 8:11 pm

Tam – thank you so much for sharing these additional resources. I will have to check them out! You’re the best. Your friend, Julie

Reply

makaylah May 31, 2014 at 12:49 pm

i glanced and you said before Xyrem, my doctor is always talking about it but i wasnt %100 sure how it will work or anything about it and on what the internet says my moms skeptical of it, i was just wondering if it really helpped, like is this going to be my life changer next may? i turned 17 yesterday so 364 days left till i can be on it but i was just wondering if it made a big impact on your symptoms and such.

Reply

Tam Kozman February 21, 2015 at 8:20 pm

I’m so sorry I just saw your questions! Of course you can never know exactly what the actual effects will be on you, so I hope you can have a good talk with your doctor. For me, it makes all the difference in the world with my cataplexy.

Reply

Tam Kozman February 21, 2015 at 8:24 pm

Oops! That’s:

Reply

Ann Sciabarrasi January 27, 2014 at 7:41 pm

I also find extreme heat and ” strangers” to be triggers. I relate it more to social anxiety. Lightning is a definite trigger. Also, I find that adrenaline is my enemy. I avoid anything that involves speed, like downhill skiing or ziplining…too many unexplainable (before diagnosis) accidents in the past. Barking dogs drop me to the ground. Once I start with the list I feel like Monk listing his obsessions! Definitely makes life interesting!

Reply

julie January 27, 2014 at 8:10 pm

Ann, these are such interesting triggers too. I have branched out to try some things like trapeze and water-skiing recently, but I was definitely fearful of these high-adrenaline moments with cataplexy… THank you for sharing!

Reply

Chris W January 27, 2014 at 8:06 pm

Fascinating! I am right there w/ you on w/ the minor daily cataplexy, but also with the major issues associated w/ winning, annoyance, and anticipating my own humor. They get me almost every time. Also, I struggle more often than not when I’m networking w/ a professional or asking an academic question to a professor. I think it has something to do with me trying to prep and filter my statements or questions before I ask them. I end up off balanced, slack jawed, and w/ a heavy tongue. It’s nice to know I’m not alone.

Reply

julie January 27, 2014 at 8:09 pm

Chris, that’s so interesting about asking an academic question to a professor. I wonder why… All of it is so fascinating to me. We are not alone. Big smiles sent your way, my friend.

Reply

Annie January 28, 2014 at 3:05 am

This happens to me too! I had an attack while I handed my math professor the letter from disability services last semester. When I gave it to him, he didn’t even look at it-expecting me to tell him all about it I guess. I completely froze in the nervousness. It was my hardest class, not because the math was difficult, but because every quiz was based on memorization and no calculators were ever allowed. I was constantly anxious in class, worried that he would call on me like he did to other students and so when I had to walk in his office and talk to him, it just came out in incoherent slurring, me leaning on a desk so as not to show how unsteady I was. I agree with Chris that part of it is the anticipation of what they could say/possible responses. Not just with professors, but mentors, even doctors. People I look up to, I typically have trouble talking to.

Reply

Tom Jackson January 27, 2014 at 8:06 pm

Eating in public
Holiday excitement
Excitement plus stairs (running up stairs with good news – I invariably crash and burn).
Stage fright moments – center of attention at any public gathering has resulted in several memorable falls.

Reply

julie January 27, 2014 at 8:08 pm

Wow, how interesting, Tom. Thank you for sharing. Mind the stairs, my friend!

Reply

Caroline Trespel January 27, 2014 at 8:20 pm

Thank you Julie! This list is so validating – specially #3 and your “minor cataplexy daily – knees buckling, jaw slackening, eyes fluttering or hands trembling”. When I listed these same experiences my sleep doc looked confused and dismissed them.

Reply

julie January 27, 2014 at 8:41 pm

Thank you, Caroline! Aw, the “confused sleep doc expression”. I think we’ve all seen that expression a few times! Sadly, doctors aren’t as familiar with narcolepsy and cataplexy as they should be. Please consider sharing my infographic with your doctor, it points out each area of the body that may experience minor weakness with cataplexy, while also showing what a full-body attack looks like: http://julieflygare.com/narcolepsy-infographic/. Big smiles, Julie

Reply

Darren January 27, 2014 at 9:05 pm

Hi, I was diagnosed with narcolepsy and cataplexy at the age of 20 and I am now 37. It’s been good to find this site and several people In a similar situation. The cataplexy is better now I have medication but I still get it if I want to pass on a funny joke. If I have a bad nights sleep the following day can be difficult and I do Feel more exposed in temps of cataplexy so try and avoid emotional situations.
Thanks,
Darren

Reply

Amanda January 27, 2014 at 9:16 pm

YAY! I’m glad I am not the only one that has trouble killing spiders. HA HA!

I continually find ways to work the triggers out of my life, only to have them replaced by new ones. Not that the old triggers would no longer cause cataplexy, but I no longer attempt those activities, like water slides or haunted houses. HA HA. My current triggers include carrying items up and down the stairs. Going down is worse than coming up and carrying a child is worse than carrying a box. An odd trigger is the scanner at work. I get flustered when it sucks in a page faster than I am ready with the next page and I end up fumbling the pages all over the floor. Sex is a trigger, but luckily it hits afterwards. Also, when someone asks me to answer a question that I SHOULD know the answer to but for some reason have forgotten, my tongue gets tied and I start to flub the answer and sound like a moron. If I start to pick up my kid and they begin to thrash about while throwing a tantrum, I have to immediately put them back down…. there are more that I can’t think of at the moment. Mostly involving my kids. HA HA.

Reply

Richard Wynne January 27, 2014 at 9:24 pm

Julie, your number six is my biggest trigger. Oh, Lord, please don’t let me think that I’m funny! I’ve even gone cataplectic from just THINKING about telling a joke that I thought was hilarious, so I wasn’t able to actually TELL the joke to anyone.

I’ve found myself immobile on the floor after trying to read a paragraph from a Dave Barry book to my wife.

My wife is a fourth-grade teacher. One evening several years ago, she left a template for a quiz she was writing up for the kids in the living room. I saw it and decided to start writing down funny answers to her questions. Amusing myself to no end, I ended up cataplectic in a recliner chair with the back of my head slumped over the back of the recliner in such a way that I couldn’t breathe. My wife was upstairs, so I was a bit of a bad state when I could finally move.

It’s interesting that just thinking about funny things is enough to trigger all-out attacks. As a downhill skier, I have to be really careful on chairlifts. Seriously.

A new trigger: I was in a board meeting (the members of the board are my bosses), and was asked a question that I was not anticipating. It resulted in my head hanging down for what seemed like a year. I think the board members thought that I was just deep in thought (at least I HOPE that’s what they thought). Unfortunately, when I was able to sit erect once again, I didn’t have an answer to the question…

Reply

Carrie January 27, 2014 at 10:58 pm

Laughing at my own jokes or witty comments is by far the most common trigger. Anger and fear, which unfortunately sometimes happen at the same time during arguments make for the most severe, complete and long lasting attacks. Feelings of deep caring when I see an old friend I haven’t seen for a while have made my knees buckle, and nearly always effect my eyesight, face and neck.

Quick, deep annoyance can cause facial and neck attacks. Had one in a skating lesson I was teaching not long ago. The skater wasn’t changing what I was asking her to adjust and had an attitude like she knew better than me how to get it done. I looked at her and said, “if you seem to think you know better than me who has been coaching for over 20 years, then you keep doing it that way.” By the end of the sentence I couldn’t see her anymore, my head fell and knees buckled. I know I had a voice of being possessed too. You should have seen the look she and her sidekick gave me! They had no idea why my eyes looked so funky or why I likely slowed my speech so much, but they certainly haven’t messed with me since! Cataplexy apparently possesses a certain amount of intimidation power! :)

Julie your list is a great one. Can’t wait to read more responses from others! Such a cool symptom! (I have a love hate relationship with Cataplexy!)

Take care! Will be back in the land of the living soon!
Keep in touch
Carrie

Reply

Katie Ratcliffe January 27, 2014 at 11:14 pm

Thanks for sharing your cataplexy triggers, Julie! What perfect timing! Today our vet hospital was visited by a welcomed stranger: an opossum searching desperately for food near our dumpster. She was very thin and dehydrated from the abnormally cold weather, so we brought her inside for treatment, heat, and a meal. (If anyone’s brain went straight to “Rabies!” I assure you the likelihood in this case was minimal, and both myself and our wildlife tech have been vaccinated). Sure enough, after a few seconds of sitting on our treatment table, she was OUT! Wow, did that hit home!

The “playing dead” analogy of Cataplexy as a protective mechanism, in my under-qualified opinion, doesn’t quite fit. Our opossum did go limp, but her gums and mouth turned pale, too. “Playing dead” seems to be more than just muscle paralysis. It appeared to be a physiologic reaction that actually redirects blood flow, and probably effects other body systems as well. Also, the second we put food in front her she voluntarily(?) snapped out of it and woofed down that meal faster than I’ve ever seen an animal eat! If Narcoleptics could snap out of cataplexy voluntarily and instantaneously, it wouldn’t be as big of a problem.

I’d love to learn what cataplexy can teach us about sleep. I don’t have experience full-body cataplexy, but definite weakness. My triggers: Laughing causes me to drop things, usually glasses (thank goodness for plastic cups!). Anticipation, when playing a game and “Yay! my turn is next!” The biggest trigger is extreme excitement that catches me off guard. My legs went weak the 1st time I was asked to assist in surgery (needless to say, I didn’t assist – try explaining to a surgical team that you’re not “woozy” from the sight of blood, but very excited to learn – from the floor, sitting down…lol!).

Reply

Chelsea January 28, 2014 at 9:54 am

Upon reading your comment on how the opossum snapped out of playing dead instantaneously upon putting food in front of her…made me think, that’s am idea! I should ask my husband to put chocolate cake in front of me to see if I snap out of it (cataplexy)–and then I got tickled and thought it was such a clever thought that it actually caused cataplexy. Dammit! I can’t think of witty remarks without cataplexy!!

Reply

Katie Ratcliffe January 28, 2014 at 8:27 pm

Hah – interesting thought! Food is one of my biggest motivators, too. Some say snapping out of it is voluntary in opossums, and others say time is a factor before opossums can regain use of their muscles. So it’s possible the food was a trigger that snapped her out of it – or perhaps coincidence (doubful). I do find it interesting that they are fully conscious during “playing possum” or feigning death, but after doing some reading it seems their heart rate and respiration slows, etc. I haven’t had cataplexy to the point of complete, full body paralysis. Does anyone feel like their heart rate and respiratory rate slows with severe attacks?

Reply

Ashley January 28, 2014 at 12:39 am

ANGER induced adrenaline- I have always been someone to argue whatever I felt was right. Once I started experiencing cataplexy I could no longer be apart of a heated debate. Cataplexy takes control of my ability to speak and I literally began to choak. EMBARRASSMENT. ORGASMS. FEAR. ANXIETY. STRESS.
I believe the new ICD 10 coding in medical billing only recognizes cataplexy if it’s brought on by laughter /joking. Julie…anybody, am I right about that?

Reply

julie January 28, 2014 at 1:03 am

Ashely – very good point.

I believe that the new International Classification of Sleep Disorders will list “positive emotions” as the main trigger for cataplexy. I corresponded with a researcher who was working on the ICSD revisions and shared my opinion that saying “positive emotions” was pigeon-holing our true experience and that it would not help awareness or diagnosis issues. In my opinion, its a wide range of emotions that cause cataplexy and by specifying “positive emotions” it is more likely that a doctor will miss a narcolepsy with cataplexy diagnosis if the patient describes negative emotional triggers.

This is actually what inspired me to write this post. I hope that in the future, patient advocates have a seat at the table in developing definitions.

Reply

Mike January 28, 2014 at 1:53 am

My C is minor but being startled elicits weak knees every time. Don’t know if it is C or not but when anger gets the better of me I absolutely cannot get coherent thoughts out of my mouth. A-D’s keep the emotions pretty flat and that helps keep it to a minimum.

Reply

Melanie January 28, 2014 at 1:53 am

I must say it’s comforting to know others expierence cataplexy as well with out extreme emotion. Mine mostly happens when I’m really concentrating on a problem and trying to come up with a solution. Which wouldn’t bother me but it mostly happens when I’m in meetings at work. Another trigger is from sex. :-(

Reply

Hilary January 28, 2014 at 1:58 am

Great topic Julie!

I agree with some of yours and would add the following for me:
anger/frustration (scolding my kids)
embarrassment- I get cataplexy when I’m embarrassed for someone else
laughter (full body attacks if I’m laying down)
being a smarty pants or being sarcastic
and another huge trigger for me is adorableness- whether it be a precious baby or a cute story, adorableness will leave me speechless and wobbly every time!

Reply

Pam Bambeck Sabourin January 28, 2014 at 2:01 am

Hi Julie, such a great topic. When I was first diagnosed with N, I said I did not have C! Little did I (or my doc know then). I believe this is such an important topic because C affects our lives in so many ways. Physically, of course, it can be very dangerous, but I never really experienced that, except some knee-buckling. Also, ( I mention on fb comment)playing tennis at net I was hit by the ball several times (I could not react fast enough) so that sort of “paralyzing affect” can also be dangerous. So I quit going to net, and eventually quit playing tennis, which I loved. I also went through YEARS of counseling …..one subject including WHY I would not stand up for my self in social and professional situations…..(I was told “you obviously will avoid confrontation of any sort at all costs!”) And I am an Aries! All of this eventually made sense when I was diagnosed with Narcolepsy (and eventually, with Cataplexy). It has taken a long time to undo all of these self-protection skills I learned over the years.
Thanks to people like you, doing great work, people now can get early diagnosis and learn to deal with N and C in a positive way, and not have to unlearn!!! Thanks to you.
Most of my C manifests in my head, throat area…..I can’t speak, can’t cry, can’t smile….etc.
Ok, My current list:

1. Surprise of any kind!
2. Yes, Killing bugs, seeing snakes….
3.Grief- freezes me
4.Jokes, laughing (I always sit down to enjoy a good joke now!)
5.Sex (most definitely, when I used to do that!)
6.Anger
7. Anticipation
8.Being tired, needing nap or not rested.
9.Running into someone I really like after a long time of not seeing them
10. Running into someone I really do not like after a long time.

Thanks for this…..very interesting. I think I have learned to manage my sleepy times better than C. And now we have added this to the conversation for an even better quality of life!

Reply

Pam Bambeck Sabourin January 28, 2014 at 2:06 am

Tam, yes, forgot about the “synch” one! Me too! Can you send links to those papers from Mayo, or will you, Julie?

Reply

Jen January 28, 2014 at 2:06 am

Love to hear all the responses. I also do not experience full-body cataplexy all the time but weakness. It is triggered with many different emotions. Definitely laughing, jokes, watching TV (America’s Funny Home Video’s) is one of the worst. Exciting news – I cannot tell someone something I am so excited about until I am calmed down. Discipline, and anger. When my daughter was young, I would try to discipline her and I couldn’t. If I am really tired, I cannot hold anything in my hands, I drop everything. Playing games from playing catch, throwing darts, playing horseshoes if I score, I go down. The more everything talks about it, the longer it takes for me to recover. I usually do not play any games around people. Its hard, but as my husband tells me… I am one of a kind, and guess what I love it!

Reply

Kathy January 28, 2014 at 2:34 am

Very interesting and helpful to know. You manage this so well Julie.

Reply

Annie January 28, 2014 at 4:23 am

Cataplexy things: typically, slurring/face drooping, stumbling/wobbly, losing my grip, posture lowers. Sometimes, shivering/shaking along with unsteadiness, knees buckling, feeling the need to just let myself sit/lay down-having trouble getting up, eyes fluttering and not focusing correctly. Haven’t yet but worried about: full body collapse.
Common triggers
-kissing my boyfriend and then trying to walk down the stairs…
-seeing and anticipating seeing someone I don’t want to see/have been avoiding
-surprises-even small ones like unexpected noises or responses I didn’t expect
-verbal questions I can’t answer/weighted questions that are emotionally charged
-contentedness/quiet happiness (this episode is usually subtle, like slurring or losing my grip)
-confrontation, especially yelling–I lose it, shivers/loss of balance, confusion, slurring
-extreme temperature hot+humid/cold+windy

Reply

Kourtnie January 28, 2014 at 4:48 pm

Anyone notice certain people trigger attacks??? I have a person who makes me a cataplectic mess!!!! I don’t have any strong feelings towards this person so it’s strange!!!

Reply

stacie January 28, 2014 at 8:02 pm

I’m with you on all of those. checklist: did you take all your meds on schedule, did you eat , are you tired? I get like that when I miss a med dose or skip a meal. or don’t get enough sleep. If someone pinches me really hard, the pain breaks the cataplexy spell. tell someone to pinch you if you have friends or family around.

Reply

Lucy January 28, 2014 at 9:40 pm

I am absolutely us else’s at telling jokes as every time I crumple in a heap before I can get to the punch line!
I was watching the news today and saw the footage of a baby being rescued from the rubble after an air strike in Syria. Within seconds I was out for the count. Tears of joy and amazement are unfortunately my weakness!
Sarcasm, anger, humidity, curiosity, stress, surprises, excitement, BUGS (especially wasps..), excitement… the list goes on..

Reply

Jenn Saccone January 29, 2014 at 6:30 pm

I am still trying to figure out what is my Cataplexy or a symptom of another autoimmune illness.
Nowadays, my “melting” Cataplexy waxes and wanes based on stress. And it wouldn’t be a particular stressful thing to set me off.
When I found out one of my best friends had delivered her baby, my legs turned into gelatin. Thankfully, I landed in a pile of laundry.
There is something about my Cataplexy that really worries me. I’ve had several injuries. I have a bad neck from laughing: the boisterous laughter I never held back prior to diagnosis caused my neck to fall forward, chin to chest; or if sitting, my head fell into my lap.
Last year, I noticed I stopped laughing. Just stopped. I would find something funny and maybe smirk or say “heh.” Even when I’m alone. This has gone on for at least two or three years, and I didn’t even realize as I never tried to hide my laughter. To test this, I watched a DVD of “Happy Gilmore”. This movie makes me belly-laugh no matter what. Nope.
In March, I go see my doc at Mayo Clinic. Now I must bring it up.
Wondering what the heck is wrong with me.

Reply

Ms. Ladybug February 10, 2014 at 4:14 am

Thanks for sharing your experience, strength & hope Julie! My cataplexy triggers are:

1. Love & affection from my pets – Living alone with VERY affectionate pets AND narcolepsy makes it incredibly difficult to get up in the mornings. Just when I’m waking up to go to work, my cat and dog excitedly try to “help” me arouse so they can go outside and be fed. Their attention and affection immediately shuts my muscles down, unpauses the dream button, and sends me back off to sleep until I can once again start to wake up. Some mornings we repeat this cycle for up to 2 hours before I can finally fight through their affection and get up. :(
2. Stage fright – I had a teaching assistantship when I was working on my graduate degree and almost got fired because of an episode… As a teaching assistant, we actually got to teach biology labs on our own, but were shadowed by one of the tenured faculty during our first teaching session. I was so nervous during my first teaching experience that I went straight into dream mode. It was like I was having a hypnagogic hallucination and a cataplexy attack at the same time and it lasted for like 30 minutes. Apparently, for that entire 30 minutes I “made up” an entire biology lesson and taught complete gibberish to the students. The professor who was monitoring me went straight to my major professor and demanded that I be fired. My major professor hadn’t ever seen that side of me before so he took up for me and came to the rescue!
3. PMS – Whenever I started to have a cluster of episodes like dropping my phone, spilling my drinks, breaking glassware, or tripping and falling, then it’s usually a good indicator that I am about to have a visit from good old Aunt FLO!!! I guess my body thinks my old Auntie is very stressful ;)

Reply

joyce Hannon September 8, 2014 at 11:28 pm

Cataplexy Triggers?
Dear Ms. Ladybug:
I was student teaching in a public middle school and the lesson plan I prepared for my fifth grade class was the introduction of negative numbers. This was an advanced class of very bright, very curious kids and I was SO looking forward to this opportunity. After a brief review of the previous days’ work, I launched into what I knew would be challenging and exciting…..and it did seem to start out that way, but what I launched into must have become a full-blown REM episode what with evidence of cataplexy-hallucination business scribbled all over the front chalkboard. Although it only lasted a few minutes, it was similar to what you describe. I don’t know what to call it,. I wouldn’t call it stage-fright, BUT almost the opposite. I thought I had something very special and very clever to present and whenever I get into that mode, cataplexy is very likely to follow. It’s MY joke or MY story ….I get all flustered and cocky.

Reply

Matthieu February 11, 2014 at 8:50 am

We share a lot of triggers. About #1 – bugs: i don’t think it has anything to do with the insect itself, i’m having exactly the same type of attacks when, for example, playing badminton. In fact, the cataplexy comes each time i need to deliver a precise blow to some smaller object in movement or that could move… It’s of course a little more dangerous with the bugs. I don’t know how many times i tried to kill a wasp (very common when i live) and instead of smashing it i only brushed it gently, just enough to infuriate it while i’m sitting on the floor, helpless… :/

My other main triggers are:
– playing music; used to play bass and drums, can’t anymore
– meeting old friends; the severity of the attack being proportional to how much i care for the person (embarrassingly revealing)
– video games, especially if movement is involved (hated the kinect/wii trend)
– having to show some authority, like when i’m irritated at my son. He usually doesn’t really get what i’m so upset about because it sounds like ghfkdzfjd…
– being funny, or expecting to be funny; you explained that very well with your brother’s card
– practical jokes. They have to be performed by others while i’m trying to raise my head enough or find an angle to get a hint of what’s going on.
– sudden verbal jokes, especially when sitting at a table. I’ve even been used by friends as a kind of scale. When my head falls instantly to the table = that’s an ace (as in tennis).

Reply

Makky's Mom March 31, 2014 at 3:16 pm

my daughter is only 8 and has a hard time verbalizing her triggers, but from my observation, her triggers are (in order of biggest to smallest):
– humour, especially her own humour and the anticipation of being funny
– similar to humour and her 2nd biggest trigger is being sneaky
– winning!
– being proud of an accomplishment
– showing affection to her daddy
– being overtired
– having her pet rat’s tail slip up into her nostril while sitting on her shoulder
– sudden surprise, as in jump out of a closet and say boo as she’s walking by

She definitely is not triggered by being hurt, scared, angry, excited or physically active. And bugs do not bother her, LOL. Julie, she can come by and kill all your bugs for you!

Reply

Michael Hennessey April 20, 2014 at 9:16 am

I just found your site.
My triggers are pushing a grocery cart.
Walking in a mall when I can’t see an escape route. I have Combat PTSD.
Embarrassment or confusion.
Heat
Anger

Reply

Arne Karlsen May 10, 2014 at 10:34 am

About bugs & jokes…-spot on!
I can enjoy a comedian, but a stand-up, I will never be…having a hard time just passing a cherful comment without holding on to something.

Reply

Ellie Burnley May 28, 2014 at 2:30 pm

So appreciate hearing “I’m not alone”. All of your triggers are mine exactly; especially when I smart off with some silly comical comment.
I’m not feeling I have the right med for Cataplexy even after 40 years of dealing with Cataplexy. My first drug was premarin (now not available) and the Desipramine I’m on now just doesn’t hold me upright! No pun intended.
If any of you would share what drugs you’re on to help control the cataplexy I would really appreciate hearing from you. To those of you who share this dang illness, my heart goes out to you. I will keep you all in my prayers. Email
attached.
eburnley@pressenter.com Wisconsin

Reply

Rhonda August 12, 2014 at 12:35 am

Hi, when I get horribly sleepy to the point my speech slurs, my eyes start to blink continuously, but not fast like fluttering. Is this a type of cataplexy? I am new to narcolepsy after thinking for years my exhaustion and sleepiness was just a side effect of Lupus. After my first does of Nuvigil, I felt like I had gained back 20 years of my life.

Reply

Gloria August 20, 2014 at 6:01 am

Hi Julie,

I love your blog and your work on Narcolepsy and Cataplexy. I am in search for answers that I can’t seem to find. However – you answer more of my questions than most sites – and even some questions I didn’t know needed answering until I heard your answer lol :)

So many things in my life seemed to fit once I learned about Narcolepsy and Cataplexy – when my mother was diagnosed with Narcolepsy w/o Cataplexy six months ago.

As long as I can remember I have been told “if you would just get out more you would…” statements

Also “being a klutz” was very often how I was described. Constantly drop things… fall… knock into walls or people… Then odder things began to happen the year I turned 17. The biggest trigger – which will be my first trigger I will mention. Roller Coasters.

I so loved Roller Coasters – until that year. just after the beginning of the ride I suddenly slumped forward – in pitch black… yet I could hear and think clear. I remember at one point thinking how it felt like my lips would be torn off from the force of the ride lol.. odd thought I know…

I didn’t know what happened… I thought I suffered whip lash and blacked out. Then wrote it off as a one time thing.

With urging from my sister I went on another ride that night… “The octopus”… I couldn’t hold on and stop myself from sliding onto my sister… I was half slumped into her lap and everything seemed to echo and blur and I slid back and forth across the ride seat for the rest of the ride.

Needless to say… my sister did not urge me to go on any more rides that night.

Over the years I would try rides… and then decide to not go again because of varying degrees of issues… banged head… weak legs when getting off… just was a very difficult part of life to let go.

I have never been a dare devil because going up high I would freeze in fear. Literally unable to move a muscle. I would not fall or become floppy… just freeze. I have since wondered if Cataplexy can do that to you – but can’t find an answer to that anywhere.

Here is another big trigger – Being startled. I swear – the more cataplexy attacks I have the more easily startled I am. Then the more cataplexy attacks I have.. it is like a vicious cycle. It is making working at Walmart very difficult.

What I am not understanding is this – after the bigger attacks (ie: the more muscles involved) I feel so disoriented and foggy headed. Yet everything I read says you are not affected cognitively. I get so discombobulated and sometimes feel like I am acting very giddy ( I think that is the right word)… the world looks different… like looking through a telescope (that is the closest I can describe that – yet it is not quite accurate)

Also one full body attack I had my eyes stayed partially open and everything only went semi dark.. like when I do the awake but sleeping thing… a brown light kind of appearance… does that make sense? This goes against all I have read as well… it makes me wonder if it is all in my head.. yet it is very real and scary.. so a bit confused lol.

Sorry to ask questions in your comments that asked for triggers… But I am very confused.. very scared… and so want answers.

You are amazing and I am so grateful for all you do.

Reply

joyce Hannon September 8, 2014 at 5:36 pm

Dear Julie: Re: CATAPLEXY

…2 Posts from this American Life – both about sleep. One is an account of sleepwalking and the other is an account of Professor Matt Frerking’s experience with CATAPLEXY. Professor Frerking is a neuroscientist (NRO) with narcolepsy-cataplexy.

Act One: Stranger in the Night
Act Three: I’ve Fallen in Love and I Can’t Get Up

http://www.thisamericanlife.org/radio-archives/episode/409/held-hostage?act=3#play

Public Radio WBEZ episode 409, act 3 – HELD HOSTAGE June 4, 2010

Four years ago, Matt Frerking started having attacks where he simply couldn’t move his body. That’s strange in itself, but what’s even stranger is the apparent cause of the problem, which is known as cataplexy.

Song: “Hostage-O”, Warren Zevon

Reply

Angela December 31, 2014 at 4:18 pm

I literally just fell upon this forum today and I think I’ve had Cataplexy for almost 10 years now (I’m 29 years old) and am just getting into the steps of being diagnosed.
Definitely enjoyed reading this post and all of its comments as it made me laugh I guess because I can relate to a lot of your experiences.
My triggers are:
• excited-anticipations
• some self-humour
• random episodes of laughter (depending on the subject)
• being chased (playfully)
• some feelings of adrenaline
• the sight of a nasty bug inside a home (like an earwig)
• being really upset to the point of crying is the worst for me
• depressing thoughts leading to a sudden overwhelming sadness

I too experience the slacked jaw, crossed eyes that sometimes “flutter”, head drop and I guess the knee-buckling when I’m about to collapse.
I can sometimes regain strength in my legs enough to adjust my “fall” so it isn’t as painful… It’s really hard though cause the upper-half of my body will be hanging practically dead-weight. Whoever is around that knows me, I try to get them to grab my arm cause the contact sometimes feels like it distracts me enough to snap out of it and gain back my muscle tone — not sure if this would work for everyone as we all have different triggers, etc.

I’m not entirely sure yet if I have Narcolepsy as well but I know that I experience Excessive Daytime Sleepiness (EDS) on the daily and the struggle is real. If there are periods of time during a workday where it’s not so busy and I am lacking the brain stimulation I can get really drowsy really fast and have that strong urge to fall asleep as I have a desk job. Having a latté is usually a resort when this happens because it keeps me alert for at least 2-3 hours without getting the urge again. I’m not a coffee-drinker so drinking caffeine is not part of my daily routine like some.
When I feel really tired or even stressed along with sleepiness I sometimes experience sleep paralysis. It’s the most annoying thing when you just want to fall asleep normally… Sometimes I’ll get a slow “wavy” sensation in my brain to the point where I can almost hear these “surges” and this is all while being paralyzed from it. During these moments I will sometimes hallucinate half-asleep. It’s like I’ve fallen asleep with my eyes opened and can actually hear my boyfriend arrive home and walk down our hallway to the doorway of our bedroom to then realize (once I’m awake again) that he’s not even home yet; and that same thing has happened to me about 3 or 4 times now.
The EDS is so bad sometimes that I can almost never stay awake during a movie; it’s like not enough stimulation for my brain or something.

Narcolepsy/Cataplexy doesn’t seem to run in my family at all though, sometimes I feel like my over-intake of “pot cookies” one night at a party back when I was 19 years old somehow triggered it by changing the dynamics or chemistry of my brain because that night I had an episode of extreme laughter where I was unable to control it and started to ball my eyes out uncontrollably as well but was still laughing hysterically at the same time… And I swear this must have lasted almost 10 minutes – it was a really traumatic experience for me. Shortly after this, although I don’t quite remember how soon after was when I began to have the Cataplexy symptoms. It could just be coincidence but I was a very light Cannabis-user at the time and had too many edibles that one night cause I wasn’t aware of how potent they really were.

Anyways, I feel less alone reading about others living the same struggle. One of my hopes is not having to live on medications once I’ve been diagnosed.

Thanks for reading. (:

Reply

Michael Hennessey May 25, 2015 at 4:34 am

Hi,
I have trouble in grocery stores or the main area in malls. My leg will buckle or my arms will go limp. Rarely completely collapse with medicine.
Heat also gets me and physical work in the yard like mowing or taking my legs will buckle. It is kind of funny with mowing if I mow in rows I buckle when I turn so I mow in a big circle going large to small.

My eye site gets messed up with severe stress to the point I have lost it twice. ER lets me sleep for an hour and I am fine.

Reply

Leave a Comment

Previous post:

Next post: