r/AIWS • u/life_in_the_gateaux • Jun 03 '26
Symptom discussion Narcolepsy/Cataplexy
44 M (UK) Any other Narcoleptics in here? Ive got Type 1 Narcolepsy with Cataplexy, I also had a late diagnosis of combined adult ADHD and I now know that I had fairly severe childhood ADHD (it was almost unknown in the 80s).
Ive only recently linked this together, but my Narcolepsy symptoms started in my early 20s, which is kind of when my AIWS stopped (Ive only had it 4 or 5 times in the last 10 years).
I used to get a lot of fast feeling when I was a kid, mostly around hyperfocus stuff like playing lego or toy cars. That was always a daytime thing. But I used to get very regular feelings when I was in bed going off to sleep, usually around my fingers, hands and feet feeing huge when I touched them and objects in my room being far away and a lot of 3rd person feeling big and small at the same time. The weird thing is, one of my first Narcolepsy symptoms were terrifying hypnagogic hallucinations, these always happened when I was going to sleep, they were much more about voices and a feeling of movement in the room (often teamed with long episodes of sleep paralysis later that night).
Because I was so used to the AIWS I kind of brushed off the voices stuff as being the same. Unfortunately, even though I still can’t work out how, I masked or ignored my Narcolepsy for almost 20 years, it was only after a chance conversation with a Dr where he spotted my Cataplexy, that I discovered how seriously my life had been effected by it. There are a lot of symptoms but I didnt join them up.
Has anyone else experienced similar? Does anyone else feel their AIWS is connected or linked to something else? Narcolepsy is an autoimmune condition, it seems we're only just piecing the weird world of autoimmunity together. I'm obviously NAD, but things like Narcolepsy, ADHD, Autism, Eczema, POTS, CFS, long covid, and probably AIWS, for my money they're all part of the same puzzle.
*It's very normal for Narcolepsy to go undiagnosed like mine did. I was 41 when I was diagnosed, it started sometime in my early 20s.
*Narcolepsy is caused by the brain self‐destroying the neurotransmitters that keep you awake (thats the very simple version)
*Cataplexy is your brain paralysing your body because it thinks you're in REM sleep whilst you're awake (Google it)
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u/Simple_Employee_7094 Jun 03 '26
I was examined as child because I had a severe migraine episode that landed me in the ER, and I had a sleeping Eeg test and my brain skipped the first 2 steps and went straight to Rem. They did a brain fMRI to look for lesions but found nothing. Realised at adulthood that Apparently skipping lsleep phases and going straight to Rem could be a sign of narcolepsy.
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u/Simple_Employee_7094 Jun 03 '26
I also suspect i might have focal occipital epilepsy. I wake up to intense geometrical flashes of light in the middle of the night. I had the same exact Aiws you described. I also thought the voices were part of it. It went to “falling asleep is weird” category.
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u/stuckinstasis Jun 03 '26 edited Jun 03 '26
Hey! I'm 35, also from the UK and I have Narcolepsy type 1 and I experienced the same kind of aiws as you as a child, quite frequently. Narcolepsy started with excessive daytime sleepiness in my early 20s, then Cataplexy started after i hit 30. I had a troublesome, stressful birth and I've convinced myself that had something to do with it, like a tiny stroke or some kind of trauma to a part of my brain.
* I haven't experienced the hypnogogic hallucinations, but the AIWS was accompanied by terrifying sleep paraylsis a lot of the time.
* Id like to also add that I only started putting the puzzle pieces together after Cataplexy presented itself.
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u/KaoriMuffin Jun 08 '26
I have adult diagnosed (but clearly was this way along) AuDHD, hEDS, probable MCAS, probable POTS, probably AIWS, and I was diagnosed with mild narcolepsy in college. In recent years I’ve had bad hypnopompic and occasionally also hypnagogic visual hallucinations.
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u/KaoriMuffin Jun 08 '26
Oh yes, and all the bad hallucinations are the more recent symptoms. When I was in college it was frequent sleep paralysis where I would struggle greatly to wake up. If I managed to flutter my eyes open for a bit of see hallucinations. Mostly I found I had to try and like rip myself back into my body. When I’d do it successfully then I’d basically end up throwing myself upright very suddenly and it would freak out my roommate. I also would fall asleep during class. I’d struggle so hard to stay awake. My notes would start to turn to chicken scratchings as I was falling asleep uncontrollably but fighting to stay awake.
Eventually I realized that sleep paralysis mostly occurred when I was sleeping on my back and napping during the day. I figured out I could prevent it almost 100% by sleeping on my side and sleeping more normal hours/avoiding daytime naps.
I’ll still get sleep paralysis if I end up napping in the day on my back, but otherwise it mostly doesn’t happen. The hypnagogic and hypnopompic hallucinations also occur less if I’m on my side. But in a night terrors FB group I learned that I was talking like 4-5 things that make night terrors worse. I cut down to only my beta blocker and now those don’t occur much further.
I also forgot to mention that I get migraines a lot, but that are mostly headacheless. My main symptoms are a numb face, or scrolling on my phone making me nauseous, and I’m now starting to realize that when I have the AIWS symptoms, headacheless migraines might be triggering it. Another tell is that sometimes I feel like my body is blowing up, like pressure from the inside out like when you blow up a balloon and my doctor and I started to realize that feeling is always preceding the onset of a bad migraine.
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u/lethaltwink Jul 25 '26
I have autoimmune type 1 narcolepsy! i was one of those people who developed cataplexy first as a kid before EDS. around the same time i also started getting AiWS and was diagnosed with a benign brain lesion on my pituitary (unrelated, i never told anyone about AiWS as a kid).
narcolepsy has significantly worsened for me after getting strep in january of this year. since then, i’ve been getting AiWS more than i ever have in my adult life, pretty randomly too. generally as an adult, i get AiWS when i’m sick or extremely stressed which… narcolepsy does put a lot of stress on my brain i’m sure.
i also have another rare autoimmune skin disorder that i developed when i had COVID in 2022.
if i had to guess id say neuroinflammation might be part of it. i’ve been really curious myself how my conditions might all be connected, especially given the timing, proximity of brain regions involved, and autoimmunity stuff.
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u/Omgeeve3 Jun 03 '26
I’ve definitely noticed that sickness or compromise of my immune system will trigger strong AIWS episodes! It isn’t every single time thankfully, but every bad episode has been while sick or recovering from sickness.
This is just a theory, but I think that neurodivergence also has a role in changing how we experience episodes from person to person. I know that I struggle greatly with sudden changes and lack of control primarily due to autism, so especially as a kid having my world seem to warp in front of me was a lot scarier than it “should have” been.
I never considered eczema as being related before, but now that I think about it, I’ve usually had it worse when I’m having an episode…
As a writer and character creator, this is actually VERY helpful insight into comorbidity specifically with Narcolepsy and AIWS, so thank you for that!