cataplexy

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

#Narcolepsy #Cataplexy #Asthma #Depression #Anxiety #TrainedServiceAnimals

Oh my, I've had a heck of a week. I wound up in the ER friday with a very unusual migraine.
When I got home, I realized I never refilled my SSRI, so I had not taken it in three days. Oh! Migraine trigger, withdrawl symptoms, makes sense.
On top of that, I bet that's why I was not sleeping well #Narcolepsy . I also suspect one of my symptoms (that really scared me and motivated me to go to the hospital at 11pm Friday) might have been #Cataplexy . I've never had cataplexy before, but ssris are used to treat/ prevent it. Also, the weakness, collapse, and uncontrollable crying seem to add up, ish?
Well, being upset and crying would tend to trigger cataplexy. And upset and crying would possibly be caused by lack of ssri, which I also take to manage my #PanicDisorder . So I had a panic attack, then cataplexy, which caused a panic attack, then cataplexy, and so I couldn't get off the floor for 2.0.0.5 hours.
I went into the ER and confused some doctors a lot. They gave me migraine meds, scanned my brain to check for stroke and stuff, and sent me home feeling somewhat better.
Now that I realize I'd missed doses of medication, it all makes sense. (In my non doctor opinion. I do follow up with my gp, neurologist for migraines, neurologist for sleep, and psychiatrist soon.)

Hi. So far, I've been diagnosed with type 1 #Narcolepsy (without cataplexy.) Yesterday I had a scary experience, and I wonder if it was cataplexy? I was upset and crying. First, I couldn't stop crying for a very long time, even though I wanted to and my body was exhausted. Second, I couldn't get up off of the floor. Every time I tried, I kinda collapsed.
So: can you keep laughing or crying during cataplexy? Does this sound like cataplexy to anyone?

I have been reading a lot lately on pregnancy and type 1 narcolepsy. My husband and I would love to have a family within the next few years, but I am petrified to get off xyrem (and the reality of parenthood & this disease). I’ve read that some women have cataplexy episodes during labor and therefore have to have a c-section . Is this true? How was your experience of pregnancy and motherhood with your symptoms? Any advice for me?

Would love to hear and learn from those who have gone through this.

#Narcolepsy #Cataplexy #Type1Narcolepsy #Motherhood