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Cataplexy

A MyNarcolepsyTeam Member asked a question 💭
Slc, UT

Is there anyone who has experienced cataplexy on a daily/regular basis? & If so what exactly do you experience during an attack? Was anyone misdiagnosed with Pots or epilepsy?

July 16, 2021
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Answer Summary

Members shared vivid experiences of daily cataplexy, describing muscle weakness triggered by strong emotions like laughter, stress, or anger,... Read more

Members shared vivid experiences of daily cataplexy, describing muscle weakness triggered by strong emotions like laughter, stress, or anger, with symptoms ranging from slack facial muscles and drooping eyelids to full-body collapse and an inability to speak or hold their head up. Several members found relief through medications like Prozac and venlafaxine, which significantly reduced the frequency and intensity of attacks, while others described unusual sensations like electrical buzzing or vibrating feelings that shoot through the body. A recurring theme was the challenge of distinguishing cataplexy from other conditions like POTS, epilepsy, or MS, with some members still awaiting proper testing and diagnosis after years of symptoms.

A MyNarcolepsyTeam Member

My cataplexy spells was said o had mono when I was younger. The cataplexy is the worst. You feel weak from head to toe,can't talk,can't hold your head up let alone control you body,basically o become clatonic. When going to sleep the night terrors are the worst and scariest. I found having a TV on with a sleep timer helps that.

September 19, 2023
A MyNarcolepsyTeam Member

I take meds for cataplexy. On a daily basis I experience slack face muscles..especially around my eyes...any emotion makes my face muscles just relax..mostly on my right side. My eyelids are the worst. Also light sensitive. I also just "melt" if I have an onset of intense emotion. Fall to the ground. Weak leg muscles while walking..etc. I started taking venlafexine and the difference is incredible!! My cataplexy is so bad..its impossible to function without the medication.

September 17, 2021
A MyNarcolepsyTeam Member

That's exactly what I feel it is kind of hard to describe. Yeah its a buzzing electrical feeling for sure and yeah I mostly feel it in the back of my head. That is definitely Cataplexy I started having Cataplexy symptoms before any Narcolepsy symptom. It started when I used to laugh really hard.

September 4, 2021
A MyNarcolepsyTeam Member

I have experience Cataplexy and its a weird feeling. when you laugh hard you really cant keep your head straight or your eyes open its like the muscles of your face cant support your head. Its weird and then my body feels weak like it will collapse if I dont stop laughing, I get weak at the knees. When I used to get really stressed, angry or have crying spells I used to feel like an electrical feeling in my brain as I walked or even just standing, A bit light headed but it was like an electrical pulse in my brain that would make me feel dizzy. Prozac is great for cataplexy, I now can laugh and not feel that.

August 27, 2021
A MyNarcolepsyTeam Member

Staring spells where I don’t remember anything or going to stand up and just go to my knees

July 18, 2021

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