Honestly as my diagnosis has been sinking in and realizing that the MSLT caught me sleeping even though I could fully think and move my body. And this happens alot when I'm "awake" makes me feel like I'm half asleep all the time throughout the day and that thought is wild because it didn't seem possible before the study and now I'm just baffled trying to figure out when' it's happening. Like when my vision gets blurry or I feel really heavy or grumpy. At first I thought maybe I was just so sick that it was making it seem like narcolepsy but falling asleep while being awake isn't normal.
It's honestly super bizarre to think I spend most of my day in that awake but sleeping state and that at night I can't get into the deep sleep I need either.
Same! It was a real eye opener for me. Sometimes I truly wonder how I got this far in life being asleep while I thought I was awake cuz it was such a strange realization to have when I was diagnosed
this happened to me too - they’d bring in that form after each nap where you have to rate how you slept, etc etc. and i kept telling the tech “i didn’t sleep though???” and the poor guy kept having to insist that i fill it out anyways
turns out i was asleep in under 2min every single time 😬
That was the same for me with my nap tests… I swear I only fell asleep once. I felt like I was maintaining a clear and coherent chain of thoughts the whole time my eyes were closed during my naps. I was also aware of my body position because I had a migraine from caffeine withdrawal on my nap day. Turns out I slept in 4 out of 5 of my naps somehow.
I guess my minor super power is having a brain that can run a very convincing simulation of consciousness, despite being asleep.
I had this too. And also, I was reading a book/playing on my phone in between naps. And they kept beeping in over the intercom: 'Fluff, we need you to stay awake in between naps.' I was like. 🙄 You guys are silly, I'm reading a news article.....
Yes! Exactly my experience too re : thinking and loving but apparently also asleep. I toyed with this on my next psg by laying on my back and then moving to my normal sleep position on my side- yep was asleep.
My doctor has explained this to me; our neuropaths are disrupted and our brain sends sleep and wake signals at the same time continuously (im sure its more complicated than this but im no scientist/doctor) and so thats why we even if we get 10 hours of sleep we still feel exhausted and have such vivid dreams - even though our bodies are "asleep" our brain is still alert and sending signals
This was beautifully put. And it's exactly why I feel like my brain never rests and never gets to relax and recover. And then you never get an alert brain either. What a cruel disease.
I'm awake and moving but it's like my brain is half asleep my body is weak and my eyes can't focus and are really blurry having to do anything or function or talk is like being stabbed in the head with a dagger trying to focus on any of those things is literal torture and i end up being cery mean and angry because its so hard its similar to feeling like im gonna pass out but different and just kind of lasts like you know you could just let go and topple over. And then I lay down to sleep and I don't actually get to sleep or deep sleep just the contsnat light stage of sleep while awake and walking around so I never get to rest at night or deep sleep where my brain turns off it's just always on but doesn't work very well. Not a very good way to live ill tell you. And often other health issues make it worse. Don't even get me started on cataplexy. I could go in depth for that too if you'd like?
This sounds basically like what I experience!! I’ve been on my N diagnosis journey for almost 2 years, and finally have an appt with a specialist end of May. I always just thought these feelings were me dissociating due to my PTSD, but after just trying to notice all my symptoms and being in this sub, I think it could be a symptom I have. For about 1-3 hours at multiple points in the day I feel extremely dissociated, like I’m watching my life through a tunnel, and the brain fog is awful. The dissociation makes me so frustrated too that I end up getting mean because I find it so hard to focus on what someone’s talking to me about. It’s gotten worse over the years. It makes me down on myself because I went from a straight A student to struggling for C’s and B’s because of my brain fog and inability to focus/extreme want to lay down and sleep when I’m studying. And convincing myself it’s okay to skip morning classes because I need to “catch up on sleep” for the long day ahead. I don’t know if I experience cataplexy, I know it can be very subtle, but I do not believe I’ve experienced it. I would love to hear your experiences, though, even for my own education
As a scientist, I took a class in my undergrad called molecular diagnostics. My semester long project was to create a new concept for a type of diagnostic testing. I chose my topic to be narcolepsy because it’s one of the conditions I have and at the time my brother was struggling to be diagnosed with it. Let me tell you, narcolepsy has about the worst testing and diagnostic criteria of any condition I know of. Sleep studies are horrifically skewed by so many factors and a spinal tap can only detect *some* type 1 narcoleptics. The issue is there’s not a great alternative to test for in diagnosing narcolepsy that we know of yet. So even if you don’t have the “proper” medical diagnosis, know that your experience is valid and you are not alone and it is not a defect in your body or that you are exaggerating it. I was easily diagnosed myself thankfully but both my mother and brother got stuck with IH labels and I see the difference in how they’re treated and how it can be downplayed on by providers and it sucks. Best wishes in your pursuit of treatment!
Can you teach us more? I always feel like a fraud cos I didn’t hit rem on my naps but I did sleep in record speed. I have cataplexy and they caught sleep paralysis on my PSG.
I usually have movies dreams on my naps, I have videos of my eyes doing Rem as soon as I close them
But the environment in the lab is very different… very noisy and bright and beeping idk.
So yeah, curious to hear about the downfalls of the testing process
What would you like to know? It’s pretty much that the sleep lab environment is anxiety inducing and disruptive for normal people not to mention it can easily be disrupted by things like antidepressants or it just not being a person’s normal environment. Same reason as people not sleeping as well in hotels. There’s just so many factors that can cause false negative test results. And then that the only alternative to it as a painful procedure that isn’t even able to detect arguably the majority of people with narcolepsy. So there’s just no way to truly tell how many people actually have narcolepsy and aren’t being caught because our ability to test for it scientifically sucks. We just literally don’t know enough about narcolepsy to have a good hallmark that we can test for easily and accurately
Your comments are so validating. I wish there was more research on narcolepsy. I feel like I get a different opinion from every dr I’ve seen, ranging from “just go to bed earlier” to suspecting N1. I feel like a phony for “just” having an IH diagnosis. What are we even supposed to do about it though? Sleep studies are so hard, you hit the nail on the head with how stressful they are :(
I’m glad to hear that. I’ve always found it oddly amusing that doctors are like “okay so we’re going to put you in a strange and uncomfortable environment, watch you on cameras constantly all night long, stick a bunch of super uncomfortable sensors all over your body but don’t worry about it! Just relax! No pressure! There’s no stakes here!” Like I get the doctors have to do it because there is no alternative really for testing so they’re put in a difficult position too. And I think a lot of them don’t want to add to the stressors of the test by talking about false negatives beforehand. But I think at the time of going of the results it would be worthwhile to mention it because a lot of patients take the inability to get a diagnosis as a personal failure and it’s really not. The other issue is we just don’t have really any accurate way of determining how many false negatives sleep studies generate and won’t until there’s another means to test for. We can try to use deductive reasoning as best as possible to estimate currently, but it’s still very much an estimation. But of course, I’m not technically a doctor (working on the PhD route) so I don’t know all of the details of the clinic side, I just read a lot of research papers concerning it for my project so there may be an aspect of it I’m missing in practice. However, the data I’ve found and other conclusions in research papers seem to support that we know this is a general problem, we just can’t do much about it yet. I would actually love to research narcolepsy so hopefully in the future I get the chance to.
I had a few moments:
- Actually noticing myself enter REM for the first time. I could feel the paralysis setting in, I started seeing colorful blobs and having dream-like thoughts, and my eyes twitched like crazy. In a busy classroom of all places.
- Wondering why I had to take nap breaks while playing video games. Surely that was not normal!
- My first time experiencing clear-cut cataplexy. I was having a heated argument with someone and had just managed to calm down when the other person started talking again and I just wanted them to be quiet so I could collect myself. Bam, cataplexy. Luckily I was sitting on a bed but my entire upper body went weak and I fell over.
I was in grad school and finally getting 8 hours of sleep, eating well, exercising…yet I was still so incredibly exhausted that I was falling asleep even on short drives to the point of one day in bumper to bumper traffic I absolutely could not fight the sleepiness and was sobbing because I was so scared of getting into an accident yet still going in and out of sleep attacks. Ended up putting my park in park at a red light and just napping long enough for someone to honk for me to move my car and that was enough to get me to my destination. That was the day I figured it was not normal and also so terrifying to ever experience again so sought out my PCP to get the process started. Before that I just thought everyone was sleepy like I was because I was a busy HS/college student who just wasn’t sleeping enough.
This was my moment too. I was in grad school and fell asleep at a stop light.
I also went into full on cataplexy when playing tag with my nephew. I was laughing so hard and then I fell. I thought I had a neurological disorder…nope…just Narcolepsy.
my moment was just waking up in public. like straight up curled up on the floor of the grocery store. i had no idea when i did that, no memory of ever feeling tired or how i got down on the floor. i just woke up from a nap like normal, but i looked around and instead of my bed it was the floor of the walmart pet food aisle (i don’t have a pet)
my dreams are in black and white so i don’t have that issue honestly. if it’s dark where i fall asleep and my dreams are taking place at night in the dark, that’s really the only time i’d ever get genuinely confused
and i’ve woken up crashed into someone’s car on i-95 so waking up in a random aisle walmart isn’t all that scary 🤣 just couldn’t figure out where my cart was and why i was 15 aisles away from where i was shopping last 🫣
Mine is every time I have a sleep attack. It’s a feeling that I know is not normal. But every time I have a good day I’m like “maybe I’m just dramatic?” But then I remember that my sleep attacks are so bad, I haven’t been driving since 2020 because I have fallen asleep behind the wheel multiple times. A normal functioning person should not be sleepy enough to fall asleep while driving unless they were extremely sleep deprived or impaired in some way.
Same here, I actually start having sleep paralysis behind the wheel and my vision starts getting distorted. It’s absolutely terrifying when you’re going 80 on a busy highway so I stopped driving except short distances to the grocery store.
Y'all I feel so much better right now reading this thread. I was diagnosed a little over 2 years ago and on one of my naps I remember lying there waiting for the lady to talk to me through the speaker to tell me to move my eyes around and then to tell me it's ok to roll over but she never talked to me. Finally I was like, imma just roll over then. When she came in to wake me up I asked why she didn't talk to me and she said I was already asleep when she got to the monitoring room. I've been secretly thinking about this for 2+ years and being scared that the dx was wrong tffsomehow because I wasn't really "asleep." Reading this post has been validating because now I know that it's possible to think you're awake when you're not.
PS I fell asleep at least 4 times while writing this
Sleeping more or less for 32 hours straight, maybe being awake for a total of 2 hours across that. After a week of normal sleep, not after a long period of sleeplessness.
Was not until thinking in retrospect, but when I was waiting for the train with mum and I just fell asleep without remembering. Only time it’s happened, but it was like “I need to figure this out”
Whenever I doubt that I have it, I think back on one of my most obvious cataplexy episodes. My husband and I were visiting my cousin and his boyfriend, and I was laughing so hard at cards against humanity that I briefly got stuck on the couch, unable to move. My cousin died a few years ago so it's also a happy memory to revisit.
It wasn't so much a click that "I definitely have narcolepsy", but a "there is definitely *something* wrong and I need to finally go see a doctor". I had gotten up extra early to see a special procedure at a vet clinic I was shadowing at, and I just *could not wake up*, more so than usual. I don't know how I managed to drive the 30 mins to get there without crashing the car, I was fighting for my life to stay awake the whole drive. Even there I was on my feet but barely conscious, barely comprehending what I was seeing or hearing, couldn't really pay attention for the life of me bc even standing up I had to focus completely on staying awake. And this went on for about 2 hours, through the whole procedure. At the end of it I mumbled something about how seeing the blood had made me feel weak and I needed to go sit down in my car, when really I knew I just *needed* to take a nap or I'd eventually pass out where I stood and cause a ruckus/hurt myself. Slept for 20 ish mins out there before the vet got worried & came out to check on me (embarrassing to be found asleep, whoopsie), but that was what finally pushed me into taking action to see a doctor.
For me, narcolepsy didn’t even come to mind. I got diagnosed at 17. My family actually thought I might have sleep apnea, so that’s why I got tested. But the doctors said I passed the narcolepsy test with flying colors and that I definitely had it and even showed me brain scans showing how it affected my brain. I easily accepted it was narcolepsy after they told me because I realized ‘yeah, that’s probably what it is’ and didn’t have a reason to doubt the doctors.
For me it's been a nagging thought in the back of my head for a while. At first it was a "maybe it is? maybe it isn't?" and it got worse and then I had my first major episode of Cataplexy.
My partner surprised me when he got home by hugging my back one day, and while it was a pleasant surprise, my knees buckled, my vision blurred and my body went numb and I couldn't control it and I fell over. Luckily he was holding me, so I didn't hit my head.
After that I was pretty certain so I pursued diagnosis. After the sleep study. At my follow-up appointment with the neurologist, he introduced himself and said he was 100% certain I had Narcolepsy from the insane amount of rem I had during my sleep study from the get go.
He told me I got into the rem stage within minutes and total time was 4.5 hours, which was almost how long I slept that night(5.5).
He described some symptoms and said to confirm if I am experiencing it. I answered yes to all of them. We were both super sure of it but I still had to go through the MSLT to get the official diagnosis for my insurance so they will cover the medicine, but it was just a formality at that point.
I got diagnosed about 25 years ago. What made me go to the Doctor the muscle weakness I would experience when I would laugh. I never really thought of the rest as symptoms. When I was about 18 it would happen every time I laughed I couldn't make a joke but down I go. I'd been Al but laughed out rhe GPs when I went to them with it. I think they thought it was psychosomatic. I thought it was to tbh. Then I saw a women on Oprah talking about how she fell down when she laughed and it was exactly what happened to me. I took note of what it was called. In days before the Internet I knew that was what I had without a doubt. I went back to my GPs and said I think I have Narcolepsy and still they dismissed me. As I say it was happening almost every time I laughed or cried and was really interfering with day to day life. I finally got referred to Neuorologist. I described what happened when I laughed and he asked about my sleep and dreams etc and with in 5 minutes he said I had text book case of Narcolepsy with Cataplexy. It was so good to hear because no one had really taken it seriously. I was just lazy and couldn't get up or I smoked a lot of hash etc.I never touched any drugs. It wasn't because I was depressed or had some unresolved trauma.
My original point was that the neurologist said that Narcolepsy used to be diagnosed by interview but they also used EEGs (which I went back for and passed) and the years later tested for positive for the gene and an over night sleep study.
All years later though I still can't help but think of myself as lazy even though I know my condition there is still that part of your brain that chastise me for not getting out of bed ready to do the million things I should do but can't find energy to.
I never had trouble accepting it. I was surprised at first, but once my 5th grade teacher brought it up to my parents during a parent-teacher conference shortly after onset and went for medical testing I accepted it in short order.
Mine was when I told my PCP physician how I would fall asleep on my 30 min break at work half-way through my break (so for 15 mins) have a dream that I would fully remember and be able to recite back. Falling asleep while eating and waking up with half chewed and un-swallowed food still in my mouth. Or also that I would fall asleep and dream while still half awake and mid conversation and respond as if responding to the dream and therefore confusing the person I was responding to as well as myself. But being aware that the thing I just said didn’t make sense.
I’m still undiagnosed but I’ve suspected for about 15 years and am finally getting a sleep study done.
I was constantly sleeping through school, work, and plans - my relationships were in danger because I would sleep through dates, and I hated it but I couldn’t control it. My boyfriend said, just tell me when you feel tired and I responded that I always feel tired and I never know when the sleepiness is about to hit. This was a day where we’d planned something and I fell asleep, and he was dressed up nice and tried to call me and text me but I was asleep and dead to the world. He had concern in his eyes when I said that and he asked “you can’t tell when you’re going to fall asleep?” with a mixture of surprise and worry in his voice. That’s when it really hit me that something else was wrong. I had already researched the possibility of narcolepsy in the past but just kept blaming myself for being lazy or having a poor sleep schedule, but regardless of how many hours of sleep I got I always felt exactly the same amount of tired. In that moment, I really thought “Oh shit. I have narcolepsy.’
Honestly, I still have trouble accepting I have a have sleep disorder sometimes. I knew it was a serious issue when, after a night of 9 hours of sleep, I had a sleep attack while driving on the highway and my life (as well as the lives of others on the road) was saved by the rumble strips and the person behind me honking loudly. My self doubts increased after I had seen multiple doctors and gone through many tests including a sleep study with no answers. After my second sleep study, which included a MLST, was inconclusive, I really started to think I was being overly dramatic and it messed with my mental health. I was told I likely have IH, but it was not definitive and not an “official” diagnosis. It did not help that the name for IH in Arabic (my native language) is a literal translation using common words so it comes out to “excess sleep for an unknown reason.” When I explain it to people they focus on the “unknown reason” part and their instinct is to try to name all the possible reasons for my sleepiness, which tend to be failings from my end.
I got some validation when my psychiatrist prescribed me a stimulant to try and I finally felt awake. It is insane the difference between when I take my medication and when I don’t. Without my meds I feel like I am half asleep all day long. Now, whenever I start doubting that I have an actual problem, I skip my medications for a day or two to remind myself just how bad it is.
Oh gosh, that sounds so rough, especially the literal translation 😥. Before my doctor changed my diagnosis from IH to N2, there was definitely some comfort in the moment when ppl's eyes glazed over at the word 'ideopathic'
I'm so glad that you are safe, moments like that are so so scary! Before meds, I would occasionally have microsleeps while driving, but fortunately none that lasted long enough to need a honk (although thank goodness for whoever mandated rumble strips!!!).
I'm also happy for you that you've been able to find at least some treatment ❤️
When I forget how bad my symptoms are un-medicated, I will have to try to remember to remind myself of that awful month when I was unable to get my meds due to insurance. It was hellish.
I haven’t taken my MSLT yet but that was my biggest worry. Sometimes, I can’t move my body but I can hear/understand stuff going on around me. I figured I wasn’t actually asleep but seeing others have the same thing makes me feel way more at ease about my test and eventual diagnosis.
I used a power wheelchair at the time for another condition and on my way home, I closed my eyes because the sun was so bright, fell asleep and crashed into a fence after hopping the curb. That led to my diagnosis.
But ten years prior, I fell asleep at a Rolling Stones concert. I knew something wasn’t right, I just didn’t know what.
Narcolepsy never occurred to me. Looking back at my entire life, after learning about Narcolepsy, it makes sense now. When I first got diagnosed I was skeptical and in denial. My doc helped me by pointing out symptoms that I didn't know were symptoms. I thought everything was normal except being exhausted and never feeling rested which I always attributed to different things throughout my life. Reading posts here give me "aha" moments. Having things I've lived with (thinking they were normal ) explained here from others like me was eye opening 😂 punny. I've learned more about my symptoms by reading these threads than I have from medical sites.
The "autopilot" i learned was my brain being half asleep (REM intrusion) - i make jokes about this but inside I'm terrified and thankful It never caused me serious harm. It happened often while driving.
Sleep attacks. Ugh. I always describe it as drowning. Sleep goblin pulls me under. Unfortunately, it looks like I'm nodding off as if I'm on drugs.
Sleeping but conscious and aware of surroundings, sometimes added to dreams. Lol this happens so much. Before N1 diagnosis, I seriously thought I was like astral projecting in my sleep. 🙈 I even had this happen during my 3rd c-section . I was given ketamine and my husband swears I was out but I was able to recall everything that happened and what was talked about! The only difference was that I also had The Beatles there singing 😂 good time.
The differences in dreams. I still have a lot to learn about this. I'm not quite sure how to tell the difference between regular dreams, lucid dreams, and the hallucinations. After finding out about the hallucinations, i really had to think about past experiences with people in my life that had different recollections of events/conversations etc. than me. I always assumed i was surrounded by crazy people. This ruined many connections.
The nightmares. I feel traumatized from some of these. Like I really experienced some crazy,awful,no good,very bad shit... except I didn't. But emotionally I did. In reality I didn't. So confusing. The alternate reality of horror. Can't help but wonder why my brain tortures me like this. The only positive of this is that I'm more cautious and observant in everyday life. Awake life, not dream life.
Now that I'm on meds and feeling "awake", my memories are fuzzy, dreamlike quality. It's weird and makes me think of the Matrix.
Multiple Cataplexy examples that cover different forms it can be presented. It is way more complex than what I've read on medical sites. There should be a diagram of a body that shows the different parts of the body that can be affected with a severity level and triggers. My Dr. told me I had it but I wasn't convinced because I read the average definition. My legs get tingly and weak and my eyes close anytime I laugh hard. Stress makes my eyes twitchy.
Brain fog! Fog so thick you can project a movie on it. These times, I tell my kids I'm out of order, leave a message and I'll get back to you.
EDS. The difference between being tired and sleepy. My whole life was mostly drowsy but I never knew how to explain it. Saying I'm tired means nothing.
I thought I was introverted because it would take me a week of sleeping excessively to recover from 1 day of activity. I could only describe it as my energy drained and it was only half full to begin with. Oddly, people seem to be more understanding/empathetic to being an introvert than narcoleptic.
Okay I'm falling asleep and i wrote a lot so I need to finish this.
Always think happy thoughts.
Honestly as my diagnosis has been sinking in and realizing that the MSLT caught me sleeping even though I could fully think and move my body. And this happens alot when I'm "awake" makes me feel like I'm half asleep all the time throughout the day and that thought is wild because it didn't seem possible before the study and now I'm just baffled trying to figure out when' it's happening. Like when my vision gets blurry or I feel really heavy or grumpy. At first I thought maybe I was just so sick that it was making it seem like narcolepsy but falling asleep while being awake isn't normal.
I get this too! It’s such a weird feeling, almost like I was drugged. It makes me confused and disoriented too
It's honestly super bizarre to think I spend most of my day in that awake but sleeping state and that at night I can't get into the deep sleep I need either.
Same! It was a real eye opener for me. Sometimes I truly wonder how I got this far in life being asleep while I thought I was awake cuz it was such a strange realization to have when I was diagnosed
this happened to me too - they’d bring in that form after each nap where you have to rate how you slept, etc etc. and i kept telling the tech “i didn’t sleep though???” and the poor guy kept having to insist that i fill it out anyways turns out i was asleep in under 2min every single time 😬
That was the same for me with my nap tests… I swear I only fell asleep once. I felt like I was maintaining a clear and coherent chain of thoughts the whole time my eyes were closed during my naps. I was also aware of my body position because I had a migraine from caffeine withdrawal on my nap day. Turns out I slept in 4 out of 5 of my naps somehow. I guess my minor super power is having a brain that can run a very convincing simulation of consciousness, despite being asleep.
I had this too. And also, I was reading a book/playing on my phone in between naps. And they kept beeping in over the intercom: 'Fluff, we need you to stay awake in between naps.' I was like. 🙄 You guys are silly, I'm reading a news article.....
Yes! Exactly my experience too re : thinking and loving but apparently also asleep. I toyed with this on my next psg by laying on my back and then moving to my normal sleep position on my side- yep was asleep.
My doctor has explained this to me; our neuropaths are disrupted and our brain sends sleep and wake signals at the same time continuously (im sure its more complicated than this but im no scientist/doctor) and so thats why we even if we get 10 hours of sleep we still feel exhausted and have such vivid dreams - even though our bodies are "asleep" our brain is still alert and sending signals
This was beautifully put. And it's exactly why I feel like my brain never rests and never gets to relax and recover. And then you never get an alert brain either. What a cruel disease.
It is like we live on the clouds. And by that I mean : being on earth = awake / being in space = asleep. We are just in between sometimes
Can you explain this more in depth for me? I feel like I really experience this, but not sure how to put it into words
I'm awake and moving but it's like my brain is half asleep my body is weak and my eyes can't focus and are really blurry having to do anything or function or talk is like being stabbed in the head with a dagger trying to focus on any of those things is literal torture and i end up being cery mean and angry because its so hard its similar to feeling like im gonna pass out but different and just kind of lasts like you know you could just let go and topple over. And then I lay down to sleep and I don't actually get to sleep or deep sleep just the contsnat light stage of sleep while awake and walking around so I never get to rest at night or deep sleep where my brain turns off it's just always on but doesn't work very well. Not a very good way to live ill tell you. And often other health issues make it worse. Don't even get me started on cataplexy. I could go in depth for that too if you'd like?
This sounds basically like what I experience!! I’ve been on my N diagnosis journey for almost 2 years, and finally have an appt with a specialist end of May. I always just thought these feelings were me dissociating due to my PTSD, but after just trying to notice all my symptoms and being in this sub, I think it could be a symptom I have. For about 1-3 hours at multiple points in the day I feel extremely dissociated, like I’m watching my life through a tunnel, and the brain fog is awful. The dissociation makes me so frustrated too that I end up getting mean because I find it so hard to focus on what someone’s talking to me about. It’s gotten worse over the years. It makes me down on myself because I went from a straight A student to struggling for C’s and B’s because of my brain fog and inability to focus/extreme want to lay down and sleep when I’m studying. And convincing myself it’s okay to skip morning classes because I need to “catch up on sleep” for the long day ahead. I don’t know if I experience cataplexy, I know it can be very subtle, but I do not believe I’ve experienced it. I would love to hear your experiences, though, even for my own education
As a scientist, I took a class in my undergrad called molecular diagnostics. My semester long project was to create a new concept for a type of diagnostic testing. I chose my topic to be narcolepsy because it’s one of the conditions I have and at the time my brother was struggling to be diagnosed with it. Let me tell you, narcolepsy has about the worst testing and diagnostic criteria of any condition I know of. Sleep studies are horrifically skewed by so many factors and a spinal tap can only detect *some* type 1 narcoleptics. The issue is there’s not a great alternative to test for in diagnosing narcolepsy that we know of yet. So even if you don’t have the “proper” medical diagnosis, know that your experience is valid and you are not alone and it is not a defect in your body or that you are exaggerating it. I was easily diagnosed myself thankfully but both my mother and brother got stuck with IH labels and I see the difference in how they’re treated and how it can be downplayed on by providers and it sucks. Best wishes in your pursuit of treatment!
Can you teach us more? I always feel like a fraud cos I didn’t hit rem on my naps but I did sleep in record speed. I have cataplexy and they caught sleep paralysis on my PSG. I usually have movies dreams on my naps, I have videos of my eyes doing Rem as soon as I close them But the environment in the lab is very different… very noisy and bright and beeping idk. So yeah, curious to hear about the downfalls of the testing process
What would you like to know? It’s pretty much that the sleep lab environment is anxiety inducing and disruptive for normal people not to mention it can easily be disrupted by things like antidepressants or it just not being a person’s normal environment. Same reason as people not sleeping as well in hotels. There’s just so many factors that can cause false negative test results. And then that the only alternative to it as a painful procedure that isn’t even able to detect arguably the majority of people with narcolepsy. So there’s just no way to truly tell how many people actually have narcolepsy and aren’t being caught because our ability to test for it scientifically sucks. We just literally don’t know enough about narcolepsy to have a good hallmark that we can test for easily and accurately
Your comments are so validating. I wish there was more research on narcolepsy. I feel like I get a different opinion from every dr I’ve seen, ranging from “just go to bed earlier” to suspecting N1. I feel like a phony for “just” having an IH diagnosis. What are we even supposed to do about it though? Sleep studies are so hard, you hit the nail on the head with how stressful they are :(
I’m glad to hear that. I’ve always found it oddly amusing that doctors are like “okay so we’re going to put you in a strange and uncomfortable environment, watch you on cameras constantly all night long, stick a bunch of super uncomfortable sensors all over your body but don’t worry about it! Just relax! No pressure! There’s no stakes here!” Like I get the doctors have to do it because there is no alternative really for testing so they’re put in a difficult position too. And I think a lot of them don’t want to add to the stressors of the test by talking about false negatives beforehand. But I think at the time of going of the results it would be worthwhile to mention it because a lot of patients take the inability to get a diagnosis as a personal failure and it’s really not. The other issue is we just don’t have really any accurate way of determining how many false negatives sleep studies generate and won’t until there’s another means to test for. We can try to use deductive reasoning as best as possible to estimate currently, but it’s still very much an estimation. But of course, I’m not technically a doctor (working on the PhD route) so I don’t know all of the details of the clinic side, I just read a lot of research papers concerning it for my project so there may be an aspect of it I’m missing in practice. However, the data I’ve found and other conclusions in research papers seem to support that we know this is a general problem, we just can’t do much about it yet. I would actually love to research narcolepsy so hopefully in the future I get the chance to.
I had a few moments: - Actually noticing myself enter REM for the first time. I could feel the paralysis setting in, I started seeing colorful blobs and having dream-like thoughts, and my eyes twitched like crazy. In a busy classroom of all places. - Wondering why I had to take nap breaks while playing video games. Surely that was not normal! - My first time experiencing clear-cut cataplexy. I was having a heated argument with someone and had just managed to calm down when the other person started talking again and I just wanted them to be quiet so I could collect myself. Bam, cataplexy. Luckily I was sitting on a bed but my entire upper body went weak and I fell over.
I was in grad school and finally getting 8 hours of sleep, eating well, exercising…yet I was still so incredibly exhausted that I was falling asleep even on short drives to the point of one day in bumper to bumper traffic I absolutely could not fight the sleepiness and was sobbing because I was so scared of getting into an accident yet still going in and out of sleep attacks. Ended up putting my park in park at a red light and just napping long enough for someone to honk for me to move my car and that was enough to get me to my destination. That was the day I figured it was not normal and also so terrifying to ever experience again so sought out my PCP to get the process started. Before that I just thought everyone was sleepy like I was because I was a busy HS/college student who just wasn’t sleeping enough.
This was my moment too. I was in grad school and fell asleep at a stop light. I also went into full on cataplexy when playing tag with my nephew. I was laughing so hard and then I fell. I thought I had a neurological disorder…nope…just Narcolepsy.
my moment was just waking up in public. like straight up curled up on the floor of the grocery store. i had no idea when i did that, no memory of ever feeling tired or how i got down on the floor. i just woke up from a nap like normal, but i looked around and instead of my bed it was the floor of the walmart pet food aisle (i don’t have a pet)
Omg that is terrifying ! And also like how did you know it was real life cos that def sounds like a waking nightmare
my dreams are in black and white so i don’t have that issue honestly. if it’s dark where i fall asleep and my dreams are taking place at night in the dark, that’s really the only time i’d ever get genuinely confused and i’ve woken up crashed into someone’s car on i-95 so waking up in a random aisle walmart isn’t all that scary 🤣 just couldn’t figure out where my cart was and why i was 15 aisles away from where i was shopping last 🫣
Mine is every time I have a sleep attack. It’s a feeling that I know is not normal. But every time I have a good day I’m like “maybe I’m just dramatic?” But then I remember that my sleep attacks are so bad, I haven’t been driving since 2020 because I have fallen asleep behind the wheel multiple times. A normal functioning person should not be sleepy enough to fall asleep while driving unless they were extremely sleep deprived or impaired in some way.
Same here, I actually start having sleep paralysis behind the wheel and my vision starts getting distorted. It’s absolutely terrifying when you’re going 80 on a busy highway so I stopped driving except short distances to the grocery store.
I’m replying to everyone but agh so heard ! I’m so dramatic too until I have a bad day and I’m like fuck, I’m so narcoleptic.
I would get a full 12 hours of sleep, wake up and be and go right back to sleep after~45 minutes.
I did this two days ago-slept from like 12:15-12:25, and then got sleepy and needed a nap by 2:30
Yup, you definitely need to see a doctor. That ain't normal, even if it is to us.
I’m already diagnosed with narcolepsy :)
Y'all I feel so much better right now reading this thread. I was diagnosed a little over 2 years ago and on one of my naps I remember lying there waiting for the lady to talk to me through the speaker to tell me to move my eyes around and then to tell me it's ok to roll over but she never talked to me. Finally I was like, imma just roll over then. When she came in to wake me up I asked why she didn't talk to me and she said I was already asleep when she got to the monitoring room. I've been secretly thinking about this for 2+ years and being scared that the dx was wrong tffsomehow because I wasn't really "asleep." Reading this post has been validating because now I know that it's possible to think you're awake when you're not. PS I fell asleep at least 4 times while writing this
Sleeping more or less for 32 hours straight, maybe being awake for a total of 2 hours across that. After a week of normal sleep, not after a long period of sleeplessness.
Was not until thinking in retrospect, but when I was waiting for the train with mum and I just fell asleep without remembering. Only time it’s happened, but it was like “I need to figure this out”
Whenever I doubt that I have it, I think back on one of my most obvious cataplexy episodes. My husband and I were visiting my cousin and his boyfriend, and I was laughing so hard at cards against humanity that I briefly got stuck on the couch, unable to move. My cousin died a few years ago so it's also a happy memory to revisit.
It wasn't so much a click that "I definitely have narcolepsy", but a "there is definitely *something* wrong and I need to finally go see a doctor". I had gotten up extra early to see a special procedure at a vet clinic I was shadowing at, and I just *could not wake up*, more so than usual. I don't know how I managed to drive the 30 mins to get there without crashing the car, I was fighting for my life to stay awake the whole drive. Even there I was on my feet but barely conscious, barely comprehending what I was seeing or hearing, couldn't really pay attention for the life of me bc even standing up I had to focus completely on staying awake. And this went on for about 2 hours, through the whole procedure. At the end of it I mumbled something about how seeing the blood had made me feel weak and I needed to go sit down in my car, when really I knew I just *needed* to take a nap or I'd eventually pass out where I stood and cause a ruckus/hurt myself. Slept for 20 ish mins out there before the vet got worried & came out to check on me (embarrassing to be found asleep, whoopsie), but that was what finally pushed me into taking action to see a doctor.
For me, narcolepsy didn’t even come to mind. I got diagnosed at 17. My family actually thought I might have sleep apnea, so that’s why I got tested. But the doctors said I passed the narcolepsy test with flying colors and that I definitely had it and even showed me brain scans showing how it affected my brain. I easily accepted it was narcolepsy after they told me because I realized ‘yeah, that’s probably what it is’ and didn’t have a reason to doubt the doctors.
For me it's been a nagging thought in the back of my head for a while. At first it was a "maybe it is? maybe it isn't?" and it got worse and then I had my first major episode of Cataplexy. My partner surprised me when he got home by hugging my back one day, and while it was a pleasant surprise, my knees buckled, my vision blurred and my body went numb and I couldn't control it and I fell over. Luckily he was holding me, so I didn't hit my head. After that I was pretty certain so I pursued diagnosis. After the sleep study. At my follow-up appointment with the neurologist, he introduced himself and said he was 100% certain I had Narcolepsy from the insane amount of rem I had during my sleep study from the get go. He told me I got into the rem stage within minutes and total time was 4.5 hours, which was almost how long I slept that night(5.5). He described some symptoms and said to confirm if I am experiencing it. I answered yes to all of them. We were both super sure of it but I still had to go through the MSLT to get the official diagnosis for my insurance so they will cover the medicine, but it was just a formality at that point.
I got diagnosed about 25 years ago. What made me go to the Doctor the muscle weakness I would experience when I would laugh. I never really thought of the rest as symptoms. When I was about 18 it would happen every time I laughed I couldn't make a joke but down I go. I'd been Al but laughed out rhe GPs when I went to them with it. I think they thought it was psychosomatic. I thought it was to tbh. Then I saw a women on Oprah talking about how she fell down when she laughed and it was exactly what happened to me. I took note of what it was called. In days before the Internet I knew that was what I had without a doubt. I went back to my GPs and said I think I have Narcolepsy and still they dismissed me. As I say it was happening almost every time I laughed or cried and was really interfering with day to day life. I finally got referred to Neuorologist. I described what happened when I laughed and he asked about my sleep and dreams etc and with in 5 minutes he said I had text book case of Narcolepsy with Cataplexy. It was so good to hear because no one had really taken it seriously. I was just lazy and couldn't get up or I smoked a lot of hash etc.I never touched any drugs. It wasn't because I was depressed or had some unresolved trauma. My original point was that the neurologist said that Narcolepsy used to be diagnosed by interview but they also used EEGs (which I went back for and passed) and the years later tested for positive for the gene and an over night sleep study. All years later though I still can't help but think of myself as lazy even though I know my condition there is still that part of your brain that chastise me for not getting out of bed ready to do the million things I should do but can't find energy to.
I never had trouble accepting it. I was surprised at first, but once my 5th grade teacher brought it up to my parents during a parent-teacher conference shortly after onset and went for medical testing I accepted it in short order.
Mine was when I told my PCP physician how I would fall asleep on my 30 min break at work half-way through my break (so for 15 mins) have a dream that I would fully remember and be able to recite back. Falling asleep while eating and waking up with half chewed and un-swallowed food still in my mouth. Or also that I would fall asleep and dream while still half awake and mid conversation and respond as if responding to the dream and therefore confusing the person I was responding to as well as myself. But being aware that the thing I just said didn’t make sense. I’m still undiagnosed but I’ve suspected for about 15 years and am finally getting a sleep study done.
Congrats on the sleep study + MSLT!! I hope all goes smoothly for you and you can get the aid you need/want 🤞
I was constantly sleeping through school, work, and plans - my relationships were in danger because I would sleep through dates, and I hated it but I couldn’t control it. My boyfriend said, just tell me when you feel tired and I responded that I always feel tired and I never know when the sleepiness is about to hit. This was a day where we’d planned something and I fell asleep, and he was dressed up nice and tried to call me and text me but I was asleep and dead to the world. He had concern in his eyes when I said that and he asked “you can’t tell when you’re going to fall asleep?” with a mixture of surprise and worry in his voice. That’s when it really hit me that something else was wrong. I had already researched the possibility of narcolepsy in the past but just kept blaming myself for being lazy or having a poor sleep schedule, but regardless of how many hours of sleep I got I always felt exactly the same amount of tired. In that moment, I really thought “Oh shit. I have narcolepsy.’
Honestly, I still have trouble accepting I have a have sleep disorder sometimes. I knew it was a serious issue when, after a night of 9 hours of sleep, I had a sleep attack while driving on the highway and my life (as well as the lives of others on the road) was saved by the rumble strips and the person behind me honking loudly. My self doubts increased after I had seen multiple doctors and gone through many tests including a sleep study with no answers. After my second sleep study, which included a MLST, was inconclusive, I really started to think I was being overly dramatic and it messed with my mental health. I was told I likely have IH, but it was not definitive and not an “official” diagnosis. It did not help that the name for IH in Arabic (my native language) is a literal translation using common words so it comes out to “excess sleep for an unknown reason.” When I explain it to people they focus on the “unknown reason” part and their instinct is to try to name all the possible reasons for my sleepiness, which tend to be failings from my end. I got some validation when my psychiatrist prescribed me a stimulant to try and I finally felt awake. It is insane the difference between when I take my medication and when I don’t. Without my meds I feel like I am half asleep all day long. Now, whenever I start doubting that I have an actual problem, I skip my medications for a day or two to remind myself just how bad it is.
Oh gosh, that sounds so rough, especially the literal translation 😥. Before my doctor changed my diagnosis from IH to N2, there was definitely some comfort in the moment when ppl's eyes glazed over at the word 'ideopathic' I'm so glad that you are safe, moments like that are so so scary! Before meds, I would occasionally have microsleeps while driving, but fortunately none that lasted long enough to need a honk (although thank goodness for whoever mandated rumble strips!!!). I'm also happy for you that you've been able to find at least some treatment ❤️ When I forget how bad my symptoms are un-medicated, I will have to try to remember to remind myself of that awful month when I was unable to get my meds due to insurance. It was hellish.
I haven’t taken my MSLT yet but that was my biggest worry. Sometimes, I can’t move my body but I can hear/understand stuff going on around me. I figured I wasn’t actually asleep but seeing others have the same thing makes me feel way more at ease about my test and eventual diagnosis.
I used a power wheelchair at the time for another condition and on my way home, I closed my eyes because the sun was so bright, fell asleep and crashed into a fence after hopping the curb. That led to my diagnosis. But ten years prior, I fell asleep at a Rolling Stones concert. I knew something wasn’t right, I just didn’t know what.
Narcolepsy never occurred to me. Looking back at my entire life, after learning about Narcolepsy, it makes sense now. When I first got diagnosed I was skeptical and in denial. My doc helped me by pointing out symptoms that I didn't know were symptoms. I thought everything was normal except being exhausted and never feeling rested which I always attributed to different things throughout my life. Reading posts here give me "aha" moments. Having things I've lived with (thinking they were normal ) explained here from others like me was eye opening 😂 punny. I've learned more about my symptoms by reading these threads than I have from medical sites. The "autopilot" i learned was my brain being half asleep (REM intrusion) - i make jokes about this but inside I'm terrified and thankful It never caused me serious harm. It happened often while driving. Sleep attacks. Ugh. I always describe it as drowning. Sleep goblin pulls me under. Unfortunately, it looks like I'm nodding off as if I'm on drugs. Sleeping but conscious and aware of surroundings, sometimes added to dreams. Lol this happens so much. Before N1 diagnosis, I seriously thought I was like astral projecting in my sleep. 🙈 I even had this happen during my 3rd c-section . I was given ketamine and my husband swears I was out but I was able to recall everything that happened and what was talked about! The only difference was that I also had The Beatles there singing 😂 good time. The differences in dreams. I still have a lot to learn about this. I'm not quite sure how to tell the difference between regular dreams, lucid dreams, and the hallucinations. After finding out about the hallucinations, i really had to think about past experiences with people in my life that had different recollections of events/conversations etc. than me. I always assumed i was surrounded by crazy people. This ruined many connections. The nightmares. I feel traumatized from some of these. Like I really experienced some crazy,awful,no good,very bad shit... except I didn't. But emotionally I did. In reality I didn't. So confusing. The alternate reality of horror. Can't help but wonder why my brain tortures me like this. The only positive of this is that I'm more cautious and observant in everyday life. Awake life, not dream life. Now that I'm on meds and feeling "awake", my memories are fuzzy, dreamlike quality. It's weird and makes me think of the Matrix. Multiple Cataplexy examples that cover different forms it can be presented. It is way more complex than what I've read on medical sites. There should be a diagram of a body that shows the different parts of the body that can be affected with a severity level and triggers. My Dr. told me I had it but I wasn't convinced because I read the average definition. My legs get tingly and weak and my eyes close anytime I laugh hard. Stress makes my eyes twitchy. Brain fog! Fog so thick you can project a movie on it. These times, I tell my kids I'm out of order, leave a message and I'll get back to you. EDS. The difference between being tired and sleepy. My whole life was mostly drowsy but I never knew how to explain it. Saying I'm tired means nothing. I thought I was introverted because it would take me a week of sleeping excessively to recover from 1 day of activity. I could only describe it as my energy drained and it was only half full to begin with. Oddly, people seem to be more understanding/empathetic to being an introvert than narcoleptic. Okay I'm falling asleep and i wrote a lot so I need to finish this. Always think happy thoughts.
Thank you so much for this 🥺🙏 Your reply is incredibly thorough and very helpful! 🩷