Narcolepsy

Ugh I wish the sleep doctor would have kept my appointment because I keep falling asleep suddenly every time I get overheated, have a medical episode, or get stressed out. It’s been like this for at least 5 years. She said to me awhile back oh it sounds like you have narcolepsy because I also get really strong urges to eat food when I am sleepy. Maybe this just happened because my evening girl called out. I did my advocacy meeting and music stuff earlier though until I fell asleep. Now back to sleep

I looked it up and Narcolepsy also comes along with nighttime insomnia and severe hunger when sleepy, which is why I am up a lot sometimes at night and often eat a lot before or after I sleep during the day. Also, I do not get hungry when I am not sleepy. I just eat a typical amount of food and then I am done. Maybe this is connected, I don’t know.

I Am Frustrated Because The Sleep Doctor Told Me A While Back That I Have Narcolepsy, But I Have To Wait All The Way until the End of October to because my sudden daytime sleepiness episodes are in remission pretty much. Well I missed out on family time tonight because at 7:30 my brain and body went I am done and so mom got me ready for bed and I went to sleep. Experiencing strong emotions, medical issues, doing too much, and getting overheated are my triggers. Alright going back to sleep, just woke up because I think I had a nightmare about this whole situation.

When I was 15, I fell to the ground laughing. Literally. My knees would buckle and I’d collapse; and I thought that was normal. People always said things like, “That was so funny I fell to the ground!" I figured I was just more literal than most.

But I also slept a lot. In class. In the car. Sometimes just minutes after getting home from school. I’d nap through dinner and wake up to cold leftovers. My teachers thought I was lazy. My mum thought I was just a typical exhausted teenager. And honestly? So did I. I didn’t know any different.

Life took a dramatic turn when I visited a friend’s house and her mum (who I hadn’t even met yet) became the reason I finally understood. My friend casually warned me: “If my mum suddenly collapses or you find her asleep, don’t freak out; she has a medical condition.” I remember thinking, Wait… that's not normal.

So her mum and I end up chatting. She asked me questions about my sleep, and my falls and said something along the lines of “you should see a doctor", I can’t remember exactly, I try to blur that time of my life. I had never even heard the word “narcolepsy.” Neither had anyone in my family. But we started researching and eventually, I got referred to my local hospital's sleep clinic. After tests and overnight monitoring, I was diagnosed with Type 1 Narcolepsy with Cataplexy.

That was 2016. At the time, there wasn’t much research, at least not in New Zealand. I was prescribed ADHD meds and antidepressants; not because I had either condition, but because the side effects could help manage my symptoms. Flash forward a few years, I was switched to newly registared meds that were more tailored for narcolepsy, though I still rely on antidepressants to keep the cataplexy under control. There’s still no perfect treatment.

I have to nap during the day, even now. I struggle to sleep at night. Cataplexy episodes still hit me hard, my whole body can go limp, sometimes to the point where I struggle to breathe. There’s a long list of side effects I warned about, one in particular was, automaticity; moments where I’m doing something but don’t remember doing it. Like my brain is literally on autopilot. I’ve had some scary experiences with that.

I’ve always dreamed of working in TV or film, but the reality is that the industry is demanding, and narcolepsy doesn’t care about ambition. I can only work roughly 15–20 hours a week before exhaustion takes over and my body shuts down. Still, I try not to let it define me.

That’s part of why I’m writing this. Because even after all these years, I’ve never seen someone like me accurately depicted on screen. I’ve never seen narcolepsy represented in a way that feels real. And that absence hurts, it makes you feel invisible.

Grey’s Anatomy has been my go to for as long as I can remember. It’s the show I turn to when I need comfort, clarity, or just a good cry. And I can’t help but wonder, what if someone important on Grey’s had narcolepsy? Not just a single episode patient, but someone we truly follow, maybe even one of Meredith’s kids. What if their journey mirrored mine? The years of misdiagnosis. The mental toll. The quiet shame and louder resilience. The fight to live a full life when your body refuses to cooperate.

With Meredith’s deep connection to neurology, this kind of story wouldn’t feel out of place, it would feel necessary. And in true Grey’s fashion, it would be raw, emotional, even messy, but above all, it would be honest. I’m not asking to write the episode. I’m not asking for credit. I just want to feel seen. I want the next 15-year-olds who collapse in class or nap through life, to know they’re not broken. They’re not lazy. And they’re definitely not alone. Narcolepsy is a quiet unraveling, where sleep isn’t rest, and waking isn’t freedom.

A storyline like this wouldn’t just represent narcolepsy. It would stand for all the invisible conditions that go undiagnosed, misunderstood, or unseen. Grey’s Anatomy has always had a pulse on what matters. I hope one day, that includes us.

#Narcolepsy #GreysAnatomy #Cataplexy #Neurological #SleepWakeDisorders #MentalHealth

Hi, my name is Katty1978. I'm here because

#MightyTogether #Depression #Anxiety #IdiopathicHypersomnia #Narcolepsy

Alright Friends Back To Sleep Now. I have been working on learning how to cope with a recent diagnosis of narcolepsy. It is working for the most part because my ear problems are my number one and they are mostly in remission. However, I am going through a lot of caregiver changes at the moment and that is causing my stress levels to go up and down a lot. This means that the sleep wake cycles in my brain are messed up again because stress and heat are my other two main triggers for my sleep wake cycles getting out of wack, which can lead me to experience excessive daytime sleepiness, nighttime insomnia, and an intense need to eat whenever I get like this.

Tonight I enjoyed spending time with my family at our family friend’s pool. Then we went to get ice cream at a fast food restaurant. Oh and I watched some America’s Got Talent before bed. It was nice. Now I am going back to sleep because I am finally sleepy again after battling some nighttime insomnia. I will say that all of this comes along with my recently narcolepsy diagnosis, which is characterized by excessive daytime sleepiness and severe nighttime insomnia. If only I could convince the sleep doctor to put me on a medication. There I am finally opening up about my new diagnosis!

Anytime a word they put down triggers fear or upsetting memories. So i try my best to explain why but go emotional and sometimes overboard.. Others state i keep repeating it. Or they tell me get therapy; I would but cant afford it with a lot going on in personal life...

As growing up as a kid I was told to keep my thoughts to myself and if I was bullied or teased to avoid it.. I did tell the teachers or speech therapist but i was told it was wrong of me to tatall tail? I grown to fear adults amd making friends plus open up to my family. To a point i feared interaction with my family. I put on a mask act silly or polite or try to mimic helpful behaviors or likes from family or rare friends. I would later on draw a lot of hidden fears and emotions where family saw it as a future gift.( I may skip a bit)

When I was a teen I kept drawing and tried to use my art to gain friends but some just used me for homework art projects. There teasing or bullying kept at it when growing up. More rare friends i made would give out phone numbers or birthday parties invites (which i struggled to call or remember) some friends witnessed me having narcolepsy \ anxiety in class do to stress from home or school [i struggled with school work and my late mom dislike me being lazy a lot] some of my teachers allowed me ti cheat test of some answers and gave me a jr-job as Janitor( it help keep stress down) by college i still struggled in mathematics and english to history. But loved art.

After that i found out after my mom death from cancer she cheated on my dad with his friend.. Again I wasn't allowed to over exaduwight on things - but kept it bottled up.

After i got married i shared with my husband and he shared his struggles in life with I. But overtime we're still trying to mend. But i still get triggers with my past.. and I try hard to not say anything. Yet it like a childverson of me yelling Im here I saw I heard and Please hear me? #Anxiety #PanicAttacks #TBI #Fear #Narcolepsy