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Narcoplexic

Narcoplexic

@narcoplexic.bsky.social

210 followers 350 following 390 posts

Artist/Author/Photographer/Skateboarder An independent advocate for Sleep Disorders & Type 1 Narcolepsy w/ severe Cataplexy. Narcoplexic.com youtube.com/@Narcoplexic Narcoplexic.printify.me NarcoplexicArt.etsy.com Patreon.com/Narcoplexic

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Narcoplexic @narcoplexic.bsky.social · Sep 9

Learn about Cataplexy in this interview I did on 'Sleep Science Today' Podcast with Andrew Culsky.

youtu.be/zjAoNY1L7gs?...

#narcolepsy #cataplexy #invisibleillness #raredisease #chronicillness #awareness #advocacy #sleepdisorders #sleeppeeps #sleepapnea #sleep #sleepmedicine

My Life with Narcolepsy and Cataplexy

YouTube video by Sleep Science Today

Narcoplexic @narcoplexic.bsky.social · 24d

youtu.be/JQtUpR6k3pE

narcoplexic.com

Talking Narcolepsy Video Recaps - Sep '25 - Ep. #1

YouTube video by Narcoplexic

Narcoplexic @narcoplexic.bsky.social · 24d

Reach out to Dr. Anne Marie Morse (DAMMgoodsleep).
She is at the top of the field and she is genuine, caring while very knowledge-able.

Narcoplexic @narcoplexic.bsky.social · 24d

My life was dramatically altered at the age of 20 from severe complete Cataplexy on a regular frequent basis, I'll never be able to live how I could before. I'm 45 now and still impacted by those effects.

So many trade-offs in this life, things most can't fathom not being part of their normal...

Narcoplexic @narcoplexic.bsky.social · 24d

Which makes it extremely hard for people to not just get off them, but be able to return to their baseline in any reasonable amount of time, if at all.

Most diseases have a drug or two that work, with N there is a commonality that it takes different combinations over time, changing regularly too.

Narcoplexic @narcoplexic.bsky.social · 24d

There are people like myself, who have never tolerated nor benefited from any of the stims, antidepressants, or any of it. Hoping the Orexin Agonists will be tolerable and beneficial but time will tell.

As for the older stimulants, they have an EDS compounding effect when withdrawing from them.

Narcoplexic @narcoplexic.bsky.social · 24d

As for the schizophrenia, I heard Dr. Ortiz say that around or less than 1% of PWN have or receive a dx of such. But the misdiagnosis is not uncommon - because of how misunderstood, little is understood, by the common doctors out there, when it comes to N.

Narcoplexic @narcoplexic.bsky.social · 24d

Narcolepsy is brutal, and so barely begun to be understood, far less recognized, comprehended and furthest of all acknowledged for what it is and can be -> neurologic system dysfunction + many comorbidities, sensitivities, etc.

The meds can work for some, not all, and most have to juggle over time.

Narcoplexic @narcoplexic.bsky.social · Sep 13

#birds #herons #rabbit

Narcoplexic @narcoplexic.bsky.social · Sep 9

This American Goldfinch looks more like Cotton Candy!
#birds

Narcoplexic @narcoplexic.bsky.social · Sep 9

Narcoplexic.com

Narcoplexic @narcoplexic.bsky.social · Sep 9

Learn about Cataplexy in this interview I did on 'Sleep Science Today' Podcast with Andrew Culsky.

youtu.be/zjAoNY1L7gs?...

#narcolepsy #cataplexy #invisibleillness #raredisease #chronicillness #awareness #advocacy #sleepdisorders #sleeppeeps #sleepapnea #sleep #sleepmedicine

My Life with Narcolepsy and Cataplexy

YouTube video by Sleep Science Today

Narcoplexic @narcoplexic.bsky.social · Sep 2

narcoplexic.com/el-vinculo-n...
Available in English, Spanish and Japanese - with French version coming soon.
#narcolepsia #narcolepsy #brainfog #chronicillness #invisibleillness #raredisease

El vínculo no reconocido: somnolencia y cognición – ‘Niebla mental – La somnolencia se relaciona’ Imagen del árbol

La somnolencia afecta la cognición de más maneras de las que comúnmente se reconocen. Sin embargo, siento que se avecina un cambio en el reconocimiento de este tema crucial por parte de la comunida…

narcoplexic.com

Narcoplexic @narcoplexic.bsky.social · Sep 2

narcoplexic.com/the-profound...
#narcolepsy #hypersomnolence #idiopathichypersomnia #sleepdisorders #chronicillness #invisibledisease
#notalone

The Profound Paradox: When “Not Alone” Meets the Absolute Reality of Isolation with Narcolepsy

The concept of ‘You are not alone’ echoes frequently within the Narcolepsy community, and for good reason. It acknowledges a shared understanding among us who are navigating this incred…

narcoplexic.com

Narcoplexic @narcoplexic.bsky.social · Jun 27

Good to see some studying/focus into the Orexin A.

Narcoplexic @narcoplexic.bsky.social · Jun 23

youtu.be/NHRC1qXP22U

'DIS' Book Preview

YouTube video by Narcoplexic

Narcoplexic @narcoplexic.bsky.social · Jun 20

narcoplexic.com/the-unrecogn...

#brainfog #idiopathichypersomnia #narcolepsy #hypersomnolence #hypersomniadisorders #sleepdisorders #sleeppeeps

The Unrecognized Link: Sleepiness and Cognition – ‘Brain Fog – Sleepiness Relates’ Tree Image

Just created this image to help portray what ‘Brain Fog’ really represents. Sleepiness impacts cognition in more ways than is commonly recognized. However, I sense a coming shift in the…

narcoplexic.com

Narcoplexic @narcoplexic.bsky.social · Jun 13

doi.org/10.1101/2025...

#narcolepsy

Brainstem pathology in human narcolepsy: Neurodegeneration in the locus coeruleus in narcoleptic humans, but not in genetically narcoleptic mice or dogs

Our earlier study led to the conclusion that human narcolepsy with cataplexy was caused by the loss of forebrain hypocretin (orexin) neurons in the hypothalamus. We now report that humans having narco...

Narcoplexic @narcoplexic.bsky.social · Jun 13

Big stuff:
"Locus coeruleus neurons facilitate muscle tone, thus their loss is responsible for cataplexy. These noradrenergic neurons also have ascending axons and their loss decreases altertness ( doi.org/10.1101/2025... )"
teams.semel.ucla.edu/sleep-research

#narcolepsy #cataplexy #sleeppeeps

Sleep Research | Semel Institute for Neuroscience and Human Behavior

teams.semel.ucla.edu

Narcoplexic @narcoplexic.bsky.social · Jun 12

narcoplexic.com/selfies-from...

#AASM #SLEEP2025 #sleeppeeps #narcolepsy #advocacy #SRS #AAPS #invisibleillness #chronicdisease

Selfies from at SLEEP 2025 is Seattle, WA

Was really good attending SLEEP 2025.I almost didn’t make it, but thankfully managed to.Was only there Sunday to Tuesday but got some good networking in.Got some selfies with top doctors in t…

narcoplexic.com

Narcoplexic @narcoplexic.bsky.social · Jun 4

narcoplexic.com/the-cost-of-...

narcoplexic.com/breaking-thr...

narcoplexic.com/bridging-the...

#narcolepsy #advocacy #invisibleillness #chronicdisease #sleeppeeps

The Cost of Honesty: When Speaking Truth Makes Others Uncomfortable – Out there Dreaming

narcoplexic.com

Narcoplexic @narcoplexic.bsky.social · Jun 3

Criminals who belong behind bars.

Narcoplexic @narcoplexic.bsky.social · May 29

Cataplexy is a brutal symptom/condition that is part of having Type 1 Narcolepsy; few people understand or can begin to fathom it, for what it is to live with.

The claim is completely respectable.

Narcoplexic @narcoplexic.bsky.social · May 29

#birds #owl #hawk

Narcoplexic @narcoplexic.bsky.social · May 24

#birds #barredowl

Narcoplexic @narcoplexic.bsky.social · May 24

That was to hit on the current, Orexin B formula in trials.
They don't seem to be improving the disrupted nighttime sleep.
Perhaps, an alternate Orexin B formula will work for improving nighttime sleep?
Likely daytime Agonist, with the Oxybate's or other nighttime med/s, will be necessary for some.