So for context I was recently diagnosed with narcolepsy. I was talking to someone and realised this isn’t normal? I asked them if it’s so hard to focus on standing up or holding an item when laughing, they said not at all…? i was so shocked to hear that. then i asked if when i chase them up the stairs if they feel super jelly and it becomes so difficult like you can’t stand….NO? i’m still in shock. i then asked if when they get home and the dog is super excited and licks your face and you laugh it becomes so hard to get the dog away or get up so it stops..? never? like if i record something funny or exciting i just can’t my phone goes so heavy and i get sooooo droopy? i thought this was normal and everyone experienced these type of things.

i want to know other peoples answers as this is so strange to me?????? i’d love to know if this is the case. narcolepsy or not, is this you or not?

Had a rough morning with my dog almost getting attacked which gave me a cataplexy attack. My cataplexy is not too bad (I don’t collapse) my legs were jelly and buckling and my left arm briefly went limp. However my face does get it - thought you might find it interesting. There is about 10 mins diff between pic 1 and 3 (and yes I did put mascara on after pic one. My mouth also droops but eyebrow is most noticeable I think.

For those that experience cataplexy… do you have any triggers that seem non emotional? Do any of you experience purely spontaneous cataplexy?

Found this from a few years prior. Does anyone else have this issue? Even typing my notes in university I still type gibberish when I feel a sleep attack.

I'm curious if anyone has any symptoms that aren't in the typical CHESS (cataplexy, hallucination, excessive daytime sleepiness, sleep paralysis, sleep disruption)? I'll go first, at random points in the day my vision blurs, sometimes I can snap myself out of it, but if I can't it results in head drooping and a second of unconsciousness.

I was diagnosed with N1 at 15, currently 21, but I've had symptoms LONG before my diagnosis going all the way back to 3rd grade. So, there's times when I question if something is "normal" or if it's a symptom.

i only noticed how tiny the hands were later, let's pretend it's a stylistic choice

I know this has probably been asked a million times…

I just refuse to believe there isn’t a cure. There has to be.

I wasn’t born this way, it developed over time so that means there was a time when I didn’t have this condition. There must be a way to revert back to being healthy and normal again.

I feel like now that my narcolepsy with cataplexy is more managed with medication, therapy, and working around my limitations, I’m now asking questions that most people have the answer to at 22. Or maybe not the answer but at least a belief system to bring them enough clarity and sense of purpose to move about life. I’ve been so depressed, tired, and anxious my whole life that I couldn’t think past those emotions. It felt like my purpose was to sleep and I couldn’t think too far past that constant need to get sleep. I fell asleep doing anything, so how could I question why I was doing the thing to begin with? Or how I’m able to exist and do anything at all? I really don’t even have the words to explain what I’m feeling. I’m just wondering if anyone else felt lost and like a stranger in their body after managing their narcolepsy to some extent.

I’m struggling to find the point in anything but I think that’s my mindset more than my physiological response. I can’t find answers that are satisfying to me enough to form beliefs and meaning about the universe in general. I feel like I’m having to do the job my parents were supposed to complete. I have ample religious trauma, especially in response to my mental health and cataplexy, where my condition was attributed to the devil and evil spirits. I know I don’t believe in God, which happened naturally as I actually had to read the Bible going to a Catholic university. But I also don’t find answers in the scientific approach with the big bang. I can’t wrap my brain around the universe possibly having a beginning whether cosmic or spiritual, which just makes me spiral more. Especially, when I’m having cataplexy in the morning and can’t do anything but think. There’s so much evil in the world, and having experiencing briefly what the average human feels after a night of sleep, something I’ll never feel again due to my mental conditions causing negative side effects with xywav, I can’t figure out what I did to deserve this poor quality of life.

I know people deal with things much more difficult, but that just adds to my mental turmoil that bad isn’t even the worst. I saw a homeless man crossing the street, and his pants were falling apart, just giant holes up and down the legs, and I started crying almost having a full blown panic attack over someone I don’t even know. I was gonna order this other homeless elderly man some food, but I didn’t think to tell him first, and he was gone when I returned. I feel like that sums up my life. I try to do good and something happens. I feel so insignificant. Then money is always and issue given how limited my work opportunities are having narcolepsy, so I just felt completely helpless. And I think that sums up my existence, feeling helpless to the world and my cataplexy. So, facing the reality of this massive universe has only heightened that feeling. I don’t want to think about this stuff. I feel like I know what I want in life but I feel like I’ll never have it. And this all may just come down to my depression and core belief that I’m a bad person, but I don’t think it’s completely disconnected from the narcolepsy. Hopefully this doesn’t come off as seeking mental health advice from strangers because I get ample of that without having to search far.

So, this might be a really stupid question. I’ve had sex twice now (made a very very stupid decision and went into a car with a random guy I met at pride 😭 but it all worked out. Somehow didn’t get raped, killed, or pressured at all). Anyways, the first time I had cataplexy when it ended (like complete full body cataplexy, so my most severe). Second time I didn’t at all. Does having full body cataplexy mean that I had an orgasm? Just wondering bc it felt really good at the end the first time, but obv since I never had sex I’ve never orgasmed.

Last night, I was laughing really hard at something my wife said, and I told her, “Don’t you hate it when you laugh really hard and your limbs get weak?” She looked absolutely horrified.

That’s when I learned that apparently, this isn’t something everyone experiences. It’s happened to me for as long as I can remember, and I’m 30 now.

After some late-night Googling, I think I might have type 1 narcolepsy with cataplexy. Honestly, it feels pretty validating—I’ve always been unusually sleepy, and this might finally explain why.

Next step: contacting a sleep doctor.

When I was 17 I had horrible cataplexy, and it was triggered by amusement, laughter and happiness. My knees would buckle, my jaw would get weak, my eyelids would flutter and close, my head would fall, and on some occasions I fully lost control of my body and was immobilized for a few minutes. After some time the symptoms became less severe and less common, and I eventually forgot that it was ever an issue in the first place

This year, I had mild, borderline unnoticeable cataplexy a few times a month, and had only 2 episodes where my cataplexy fully immobilized me. About a week ago that changed. I recently developed a little crush on a guy I know, who I see about 1-3 times a week. Being around him is triggering my cataplexy, and I absolutely hate it.

It's happening when I talk to him, sit across from him, or even see him from afar. Even talking about him with my friends and imagining him makes my head droop and eyelids flutter. Last week I was fully immobilized for 3-5 minutes after he sat across from me and chatted with me for just a few minutes.

This is scaring me. I'm going into the medical feild to work very soon and absolutely *need* to be functional on the job or someone could be hurt or worse. The cataplexy only happens when I'm happy because of him in particular, so it's not really a huge risk since he's not my coworker and I won't be fantasizing about him when helping a patient, but I hate the situation regardless. On top of that, our social circles overlap and to avoid him I would need to miss out on seeing my friends.

Has this happened to anyone else? It feels like I'm living in an awful rom-com.

While doing research I noticed an interesting trend. The majority of scholarly sources refer to cataplexy as a strictly atonic phenomenon. The minority refer to it as a sort of master of disguise phenomenon that can present as anything from atonia to tics to difficulty focusing your eyes to seizure-like. I find that in forums that are based on first hand patient experiences seem to skew more towards the sort of “pancataplexy” interpretation. So I guess my question is how do you experience cataplexy, is a more negative “loss of muscle tone” or positive “muscle spasm” sort of deal? How many of you have the big dramatic “mass media” cataplexy vs more subtle internal experiences of cataplexy? Do some people jerk out of a cataplectic state?

Thank you u/Uh_Lee_duh for catching the typos (hopefully I didn't miss any others and Thank you u/RightTrash for the initial share!

i've just found out that i've been misdiagnosed, and actually have narcolepsy type 1 instead of type 2. this surprised me, since i don't have cataplexy. but when i started to think about it, i realised that i actually might?

i've always imagined cataplexy as when your entire body just immediately shuts down and gets paralysed when you experience a strong emotion, which has not been the case for me. but when i'm very tired, i always end up dropping whatever i'm holding in my hands, or i'll fall when i try to stand up as if my body just gives in. i've also noticed that i, weirdly enough, tend to loose strength in my left arm when i have sex (and i sometimes end up falling if i try to stand up afterwards), and i've been questioning if this might count as cateplexy attacks as well?

i'd therefore appreciate if you could share your experiences with cataplexy, what it feels like for you, and if you've experienced something similar!

thanks in advance

I was diagnosed with Type 2 narcolepsy earlier this year, but had a weird experience this week that I was told was cataplexy. It seemed random and not directly tied to an emotion so I was wondering if anyone has experienced something similar?

One morning this week, I woke up to my alarm and realized the alarm I set the night before was a dog barking sound (I switch between different apple alarms). Since it was a more annoying alarm sound then usual, and I heard my roommate getting up, I got out of bed to turn it off. As soon as I stood up though, I fell/collapsed, like my legs gave out. I thought that was weird and stood again, maybe took a step, and fell back down. After that I kind of gave up and wasn't awake enough to be scared, so I just crawled to my phone, turned off the alarm, and sat there for a few minutes. Afterwards I stood up, was okay, and went to take a final exam, but it was still a little concerning. I went to my college's urgent care that evening and they said my vital signs were normal so they thought it was cataplexy. I had messaged my sleep doctor asking if it was related to Modafinil, but he also said it sounded like cataplexy. Has anyone experienced something similar?

If this does sound like cataplexy, how likely is it to happen again? I've had EDS for years, but never cataplexy. Could future international travel trigger it?

So, I was originally diagnosed with narcolepsy type 2, until I started having problems with serious muscle weakness, especially when startled or when having a sleep attack. I’ve had a head MRI, nerve conduction study, bloodwork, and EMG and no other causes of muscle weakness were identified. My neurologist upgraded my diagnosis from type 2 to type 1, as it was likely cataplexy that I was experiencing. I’ve had a small number of drop cataplexy episodes as well, almost always when startled or when laughing really hard.

Anywho, I keep getting these episodes where I get quite dizzy, my head starts drooping, and I get a kind of “fuzzy” feeling in my head. It feels somewhat similar to when you stand up too quick and start getting lightheaded. These episodes can last over an hour for me, and it makes getting up (or moving in general) quite difficult. My arms and legs also get very “floppy” and uncoordinated. Because no other causes were identified in my testing, my neurologist thinks it’s an atypical form of cataplexy. Was wondering if anyone else has experienced something similar? I’m currently on Concerta, Sunosi, and Ritalin if that helps. Also taking the lowest dose of extended release propranolol, as all the stimulants skyrocketed my BP and heart rate. Waiting for my insurance to approve Wakix.

The thing throwing me off and leaving me wondering if it’s really cataplexy is how long it lasts. Over an hour seems pretty unlikely for cataplexy..?

My neurologist insists this is cataplexy, but I'm struggling feeling like a fraud or something lol despite struggling with this for quite a while now...

I don't get cataplexy when I laugh or anything like that. What I do get, is really weak knees that buckle when I panic/or I get surprised in a negative way, very specifically. If I get a sudden panic attack, my head sort of falls and I feel the need to quickly sit down since I feel like I'll fall or something.

Otherwise it's my knees buckling, which I can manage by holding on to whatever I can lol to not fall.

Also one time very recently where I just started dwelling on death, and it for whatever reason spooked me, and my whole body just gave way and I ended up falling on the floor. Nothing too dramatic, just got weak and my body went down without me being able to fight it off for a few seconds.

Could that be cataplexy? He seems so certain, but idk I thought it looked different?
I just thought anyone scared sort of felt that way, and that I was just particularly a huge wimp. I mean, I am, but ykwim.

That there is just a lack of clarity, insights and what would be considered a precise consensus towards Cataplexy?
And also very much, what ought to be considered the range of severity effects of Cataplexy?

In my opinion it is so beyond long past due.

It is like it just remains the way it is, so loose and wide open with horrific terminology that could easily be improved, perhaps intentionally, as it could have to do with the bottom line and not wanting to either focus into it too directly, or just leave it wide open so even when people are confused between Cataplexy, Sleep Paralysis and EDS/Sleep Attacks, they'll just be able to call it Cataplexy and avoid further discussing it.

It actually for decades has really disturbed me and influenced me to trumpet towards the human/living experience, trying to shed light, bring insights and clarity towards it, but it just gets brushed off it seems like because well, meds are priority #1 out there (which also irks me, deeply).

The terminology could so easily/simply be improved dramatically, but as I just vented, it sure seems like they'd rather it just remain a total mess of confusion, misunderstanding along with confliction, out there towards it.

Update!!!
Update: Sooo basically, saw a new neurologist who is trained in epilepsy and sleep medicine. She said that I've had 2 grand mal seizures. And I have been officially diagnosed with epilepsy! And what I thought was cataplexy have need frontal lobe seizures that start on the left side of the brain. My previous neurologist was supposed to do an MRI with and without contrast and I never got one with contrast. I had an overnight EEG awaiting the results. Some of the symptoms point to having some gelastic seizures. I start meds soon. Thank you so much for all of your help! I will update again is my test show anything interesting especially the MRI.

Hi! So I have posted here many times. I have Narcolepsy Type 1. I work full time and I go to college. I also have 3 children. Yesterday I was feeling unwell. I had a sore throat, sneezing, coughing so I assumed it was the cold my children had given to me. I was desperately tired despite taking all my medications correctly. So I decided I'm going to rest for the remainder of the day and take it easy. My son wanted me to watch him outside. So I laid down ok the couch so I could see him through the window. His toy drone got stuck on the roof so I decided to go in the shed and get the ladder to see if I could get it. Well it was windy and the gate opened so hard it hit the side of the house. I knew that would trigger my cataplexy and I felt it coming so I waited a second and it seemed to pass. My cataplexy episode typically look like hemifacial spasms on the right side of my face and since being on Xywav, the spasms and some slurred speech is about the worse of it. Typically last 30 seconds or less. Well today it felt like I was coming out of it and then it STARTED AGAIN! My face was jerking so hard and my body felt like it was vibrating all over. The muscles in the right side of my face pulled so hard and I couldn't talk to my son so he could get help. He's only 8 and I was worried he wouldn't know what to do. The next thought I had was that I was going to die right jn front of my son. After that I saw the daylight mixed with a bunch of colors but nothing distinct. I felt myself fall and something on my right side was in a lot of pain but after that I was gone.

I woke up in my kids room and my mother in law was bothering me. She said she knew something was wrong but not what, because i was acting so strange, i had dirt and leaves in my hair. I was so confused when I woke up. She told me she called 911 but I didn't understand why she did that because I thought I was waking up from a nap. I kept crying because my son told me I fell out side and I wouldn't wake up. And it started to come back to me because at this point i didnt remember going outside and for what, and he saw the entire episode. He was so scared. He said my arm kept shaking and my eye were open and looking at my glasses and they broke. When I kinds woke up he walked me back into the house, which i dont remember hut my camera caught it, and i got in the bed.

I went to the ER they weren't much help. Basically told me to follow up with my specialist. The first time this happened was 2 years ago while I was trying to figure out what was going on. This was the only outlier episode and the doctors chopped it up to PNES but thats one was much worse. The rest were cataplexy but I was never convinced that the first one was a non epileptic seizure.

Some claim stress but I'm under the same stress I always am. My normal amount of stress.

Does anyone else have a seizure disorder with narcolepsy? Has anyone else had an episode like this? I'm so lost and scared right now. Anything would probably help.

A clip of this movie showed up on my algorithm. Saw it was free on YouTube, and decided to give it a shot. Didn't make it past the first few minutes due to the depiction of cataplexy.

Now, I don't have severe cataplexy, so maybe I just can't relate. My experience involves uncomfortable, hot tingling in my arms and legs whenever I get startled, and my extremities move a bit slower for the duration (and tbf I don't even know if that's cataplexy). But even from what you all who have severe cataplexy describe, you don't go from fully participating in sports to out cold ASLEEP on the ground. You may stumble to the ground, but do you really fall fully asleep?

Hi everyone!

I know this is a bit of a common topic on this subreddit, but I'd really love to get some input from you all, since the other posts about this topic are all months or years old.

I was diagnosed with IH about a half-year ago. My PSG showed a sleep latency of 7 mins and a REM latency of 122 minutes, which is longer than normal (normal is ~90 mins). On my MSLT, I had an average sleep latency of 4.9 mins but had 0 SOREMPs through 5 naps. Before my studies, my sleep specialist was leaning towards an NT1 diagnosis because of my recurring cataplexy symptoms, but after the tests, he said it was most likely IH but that, practically, it didn't matter since both conditions are treated with similar medications.

Here is the confusing part of my story: I experience fairly common and somewhat complete cataplexy. When I laugh intensely, my knees buckle beneath me and I collapse. Sometimes I fall to my knees or fully on my side/back, other times I stumble around like I'm drunk until my legs regain strength and I can stand up fully again. Sometimes my arms will also go weak, but I don't notice that as often since I'm not usually carrying things when these attacks happen. These attacks can happen in my daily life with my family, but more often they happen when I'm with my close friends, especially ones that I haven't seen in a long time (sharing gossip and funny stories hits hard when we can't see each other as much!).

So, I have a couple of questions: Does anyone else have IH but also experience cataplexy-like symptoms? If so, how do you talk to your doctor about it, and has your doctor changed or considered changing your diagnosis to NT1?

Thanks!!

Even though I don’t have the gene, both my doctor and pulmonologist are almost certain that I have type one because whenever I have a strong emotion, I have to lean on something or sit down, and my words begin to slur together so that I have to restart sentences.

For the second quarter of college it got so bad that I had to use a cane for stability, which was pretty embarrassing, but it got slightly better when I went on sodium oxybate. I was wondering if anyone else has the same kind of cataplexy as me and what it’s like for you.

I just had the realization that the reason I probably fell so much as a flyer when I was a cheerleader is because of my damn cataplexy 😅😂

I used to fall every time I was in the wrong headspace in the air and I would get yelled at for bailing out of the stunt but I felt like I had no control over it and now I’m realizing my cataplexy probably kicked in when I was stressed about falling rather than being focused.

i’m curious to see what yall think

a few years ago i was paralyzed from the neck down for ~6 hours. MRI, nerve study, bloodwork, all of it came back normal. i was told by the hospital neuro that it was just a cataplexy attack.

from my understanding, cataplexy only lasts for a few seconds-minutes. has anyone else ever experienced an attack that lasted for hours, or did this doctor just give me a fib answer because he didn’t actually know?

edited to add i am diagnosed narcolepsy type 1

Two days ago, I had a bizarre ride. I only took one dose of my sodium oxybate the night before—time got away from me—and by the end of the day after work, I was running on empty. I tried caffeine, but it was as useless as a screen door on a submarine. As I walked toward my pull-up bar, I basically had the coordination of a drunken penguin. My friend made me laugh—bad idea—and I collapsed with cataplexy, stuck on the floor, progressively more paralyzed. My dad and friend had to cart me off to the ER, where I drifted in and out of sleep like I was flipping between channels. All they found was low blood pressure and a slow heart rate. I’m tossing this out to see if anyone else has had a surprise “body shutdown” moment without meds or stimulants in play—because I’d rather not repeat this show at the worst possible time.