u/Fengoblinbee

Ever since I was little, I always got in such trouble for glaring and seemingly scowling because I literally found it almost impossible to move my weak ass muscles into a smile and lift my eyes up to look awake...It's just funny because looking back at pictures my face just always looked so limpid eyed and sleepy and my attempt at a smile so pained, I see why people figured I was mean and they'd say, "At first I thought you were mean but you're not." Or of course a lot of people would give me shit for being drunk or on something because of my perpetually glazed eyes and plastered expression and wouldn't believe me when I'm like no, I can't drink or do drugs, believe me, my body is drunk and trippy enough on it's own! (I already look and act wasted enough without any influence and it sucks how much sicker and woozier looking and feeling I get if I take a sedative or a single shot of, say, Anisette or St.Germain or something)

They're right, narcolepsy can be quite familial indeed because my brother suffers the same fate, everyone assumes he's a jerk due to his disgruntled expression and super interesting (I have a concussion on that side of my head/they don't), my mom, bro and I all have eye muscle palsies in the same eye and have to wear prisms for them, which I'm finding a lot of research on narcolepsy contributing quite a bit to muscle weakness like eye muscles too that I never would have connected the dots with before.

It's making me realize that because of cataplexy and the extreme fatigue we suffer, there are a lot of simple things taken for granted by able bodied people who don't have to think about it, it reminds me when I wasn't as sick and drove stick/manual versus automatic; it feels like able bodied people have automatic bodily functions they don't have to think about, but people with chronic illnesses have stick shift, where we have to manually think about everything and put a lot of effort and energy into each action...and it also feels like an OLD stick shift, where it get's stuck and makes all the noises and it takes us a lot longer to get to point A to point B on anything.

like I feel like I have to put so much energy and thought into moving my facial muscles that just can't keep up with people who don't have neurological issues making muscle movement such a huge undertaking. Even just keeping my jaw closed, I can tell everything is getting worse when my jaw opens and I'm falling asleep or asleep and can't close it because my body is like "no thanks, that takes too much muscle control and strength, just leave your jaw unhinged like that and look like you are perpetually gawking and dumb, thanks."

My memory has gotten so much worse as things have progressed (I have aphantasia/no visual memory which greatly worsens things) and was curious to hear others experiences with automatic behavior and memory. Almost every activity I do each day feels dreamlike and I actually forget the thing I was doing mid-activity or even before I started doing something, where I'll be cooking or cleaning, watching a movie, anything and everything and I'll already have forgotten it before the task is completed kinda thing. I'll blink my bleary eyes and be like, "who cooked this rice? I didn't cook that. I ate? I slept? When did I even lie down? I walked over there, when?" I feel like I'm sleepwalking through each day but not just parts of it just simply all of it I can't differentiate between a dream or being awake. Having no recollection of conversations that jut happened, I can't remember a single detail from a doctor's appointment I just had, a movie I just watched, I used to have a little recollection of things but that's just gone, it's so bizarre!

It feels like whatever I'm doing in the day is already being wiped out mid sentence on a whiteboard kinda thing, where you aren't even done with the task and the eraser has already wiped it away as if it never happened so your brain is like, "guess that never happened?"

I guess it actually does this a lot with the nights too where I'm super out of it and just know I got up several times to pee (thanks diabetes insipidus) and had crazy nightmares as usual but it's this weird thing where I only know this more from muscle memory since this is my night routine every night instead of actually remembering it in my head. I have zero recollection of the night memorization wise; "that night sucked...thankfully I can't remember it...but it still sucked, I can feel (but can't remember) that it was shit," kinda thing.

I think what I am saying is how much I am realizing writing this that chronic illness symptoms, like memory shit, for example, are traumatic and not only are felt by the brain but the body so I guess even though my brain can't remember barely anything...my body remembers things happening to me, I just find the science of your body remembering differently than your brain really frustrating on a personal level...but fascinating on a science level. There's a lot of medical trauma to unpack with chronic illness journeys and it reminds me of my therapist telling me that with trauma, your brain may forget much of it, maybe even block it all...but your body never forgets and applying that to this medical trauma, it's just intense, it's like you have two brains; your brain up in your skull that thinks for you or at least tries to retain information as much as it can when you are bogged down with illnesses and your body's "memories" where it like retains memories through feel and touch???

I was born with hyperphantasia which made my hallucinations, dreams, and daydreams feel 3D real like I could see/taste/touch/smell everything about them for years...until one night I felt like something punched my lights out during what the docs think was a series of seizures as I was falling asleep. There's a lot of factors that could be involved in my particular case of aphantasia alongside the seizures; I have brain damage from a concussion, a stroke etc and basically that one night I suddenly lost my mind's eye/I went from vivid visual imagery to ZERO in one second. Just thought I would mention it since acquired aphantasia from health issues isn't out there as much and I just found it super interesting how it's affected my hallucinations. Because my aphantasia is severe enough, I have the weirdest thing where I hallucinate the bizarre visual imagery... I can "see" whatever weird thing it is, like, say a grotesque sun mask with a thousand faces fly at my body like a jumpscare while I'm trying to lie there and fall asleep but it's super trippy that it's like a "shadow/phantom" visual imagery because my mind's eye is blind it's like I can't see it but I can see it and feel it???

I guess that's what I mean by a shadow or phantom, where it's pretty invisible to my eye yet somehow I know it's there and can feel its presence and could even describe it visibly...but the trick with me is now it's largely a concept haunting me in it's hallucinogenic nature because I only actually see visual imageries as if I could touch them with my hand when I'm in REM only. I have no idea how to verbalize it and it get's weirder when I'm in sleep paralysis where it's like a movie playing as I'm lying there and can't move, just watching my brains movie play out the dream that was vivid...and now is just a weird phantom concept because I'm gaining consciousness so there goes my visual imagery...it's so, so weird!

Interestingly, I still have all the other ones no matter my sleep/wake cycle/hallucinating like olfactory; I smell a lot of things like foods I haven't had for years, just random smells not triggered by any memories or exposure to them or anything. Because of my aphantasia/and other neurological stuff, I have like NO memories which I've learned greatly affect hallucinations. Aphantasia has also greatly affected my ability to have inner monologue and music in my head. I basically don't have intrusive thoughts anymore/they are absent or extremely muffled and hard to conjure/feel like work. My brain used to have racing OCD intrusive thoughts, visual imagery, and like 5 radios on etc. which also means that most my auditory hallucinations are gone and I don't hardly have them but as I fall asleep and get close to REM, the inner monologue and music in my head will start to get more noticeable and accessible which is...comforting/it's funny how you miss it and annoying since that's the time I'm supposed to be sleeping, not thinking!

just thought it was interesting since it seems hallucinations are so unique to each person how they are perceived and experienced and most fascinating is how they evolve and change over time, like with so many chronic illnesses, depending on what meds your on, stress, lots of factors.

I'm terrible at wording things, especially symptoms sorry...(for some reason at least for me they are always so much worse on several meds, like sedatives, heart meds which act like sedatives to me etc.)

"the sleepy waves"...maybe I'm describing sleep paralysis or even a hallucination? Come to think of it, I don't really notice if i can move or not during them...but they are super weird how i can have like 49 "waves" some nights, maybe 20 or even just 2 waves other nights that strike the worst my initial fall asleep at night time...but they also wash over me during daily naps or seated at my desk often...so i thought this was the way everybody felt before they fell asleep and this is how they gauged the falling asleep phase was oh, I'm having the sleepy waves, gonna be dreaming in a minute here...and when I mentioned it to several people and doctors they were so baffled what i was talking about so maybe this is a narcolepsy thing then??

It's not hypnic jerks where you feel that distinctive startled/falling jolt kinda thing that lasts for just a second, these feel more like slower and longer and they don't make my body move, usually my eyes are actually closed when they happen but the wave washes over my whole body and makes it feel super weak, almost feverish, like the opposite of a hypnic jerk/muscle spasm where I'm losing the ability to move my body and my body becomes detached from reality, not quite sinking but it's a surreal, trippy feeling that's followed by dreams so I know it has something to do with falling asleep...like that wave of sleepiness that hits you when you go under anesthesia but for some reason it does it several times before you fall asleep so I guess that's why I'm silly and call it "sleepy waves," there can be so many of them...but then it'll throw in a curve ball and occasionally I'll have a night or nap where I don't get the waves and be almost confused, "where's my waves at?" I'm half asleep now as I write this, Can you tell ha, just curious for any other perspectives. 

Was just curious about other peoples experiences, I've def slept through a disappointing amount of life during the daytime but I can't believe how much, with how fractured my sleep is at night, that I still missed out on so many evening and through the night things in life because I'd be asleep for part of them! Just thought I'd mention it since I feel like a lot of people throughout my life have been shocked that I've never been able to stay up for a single night or would get offended/let down I couldn't no matter how hard I tried and there's a lot of stigma and guilt around symptoms out of our control like excessive sleepiness that I think people feel we choose to be this sleepy when we really can't help it and have tried everything.

Can't believe it took til my late 30s to realize that I've never been able to stay up all night or pull an all nighter, not a single night in my life ever, no matter how much I wanted to for everything from heavier/weightier things to lighter things like "I wish I could binge watch this show all night like other people and actually stay awake" or like with family, slumber party, after watching a scary movie, that project due tomorrow, after a mental breakdown/family crisis/family loss, vacationing with my family, trying to stay up late texting someone, 4th of July fireworks, battling through all my other health conditions, even like a throw up bug, I thought at least a few nights in my life there would just be a zero sleep night, even for one night after all these years but no, I would always conk out and do the whole fragmented in and out thing and create the wildest dreams since I'd keep falling back asleep and they'd keep building up and layering themselves ha. I have a lot of other conditions that affect sleep quality for the worse/wake me up a lot like sleep apnea, Ehlers-danlos/dislocations in bed, concussion/seizures, Lyme disease/nerve pain, asthma, POTs/heart freaking out at night, MCAAs, the list goes on but somehow...apparently narcolepsy is like I don't care how wired and banged up you are from all those...you're sleeping and it's gonna be super unrefreshing and fractured as hell, and you will always need to pee at 2 AM, always, and fall back asleep and continue the crazy dream debacle.

I wasn't sure if I should put this under "humor" because it's so silly what my body was doing to itself it was almost funny but I also thought about putting it under "rant" because it was so exhaustingly frustrating to take the very unpleasant act of puking when sick and just make it the most ridiculous ordeal as the daytime sleepiness and cataplexy come rolling in like "oh, let me just help you with that," absurd!

I have gastroparesis and a slew of other health conditions that cause sudden bouts of nausea and vomiting and I wondered if anyone else experienced puking as a trigger for sleep attacks and cataplexy? It was the craziest thing but multiple times I've woken up to puking, I would literally have my eyes flutter shut/that unbeatable sleepiness would wash over me before, during, and after puking and sometimes mid, before and after puking, I would literally dream, sometimes with my eyes open, sometimes hallucinate, and droop! The closer I got to each time I would need to vomit, the worse the overwhelming sleepiness and ironically my muscles would get so droopy and weak would get and these puke induced sleep attacks and my body drooping just kept happening each time I puked it was so intense and ridiculous, I wish I could say this was a one shot thing but no, this is what my body does every time I have to puke; whether it be heartburn, a stomach bug, gastroparesis, it could be early in the AM, midday, afternoon, evening, it wasn't particular it just kept hitting me again and again! I didn't think the body would be that silly to knock me out whilst puking in terms of how dangerous that could be ha thought I'd put it out there in case anyone else experience this?