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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Symptom Of Narcolepsy Do You Find Hardest To Manage?

What Symptom Of Narcolepsy Do You Find Hardest To Manage?

posted July 21
A MyNarcolepsyTeam Member

At first I didn't know what was happening to me,a numbness in my face would occur, my eyes would be barely open (as if I am high😀) then I experience a paralyzed feeling in my tongue, which causes me to slur if I'm trying to speak. As a CNA doing Homecare I try to stay busy or if my symptoms are uncontrollable I'll take a break from what I'm doing until my sleepiness pass. It's difficult at times,but I have to stay focused for my client.

posted September 28
A MyNarcolepsyTeam Member

It's strange when you actually feel a wave of sleepiness. It is worse at work. I can feel it coming but I can't leave so I get up and move around.

posted September 25
A MyNarcolepsyTeam Member

Wow is that a great question. I experience all the symptoms to the extreme so that’s kinda a difficult one to answer.

But I would say for me it’s a toss up between sleep attacks and Cataplexy. Leaning more towards cataplexy tho due to the many trips to emergency due to broken bones and dislocated limbs.

Cataplexy is also so very scary. A poet once expressed it perfect for me. They wrote:

“Thought for a moment
I wake up dead,
But still alive
Within my head.
No muscle movement.
There of course-
Alive, Awake,
Inside a corpse”

For sleep attacks they’re my most disruptive. That and auto-behavior. I think Ortiz said it best when he wrote…

"You're kind of living a half life. You cut out parts of your life to do one thing normally”

posted September 13
A MyNarcolepsyTeam Member

Like Carey said, waking up and functioning. Doesn't matter how much sleep I get, or when I wake... It's always a fog. On nights I have less than 7 hours, even three loud alarms do not wake me fully. My husband literally has to gently shake me to get me to even respond.

posted August 6
A MyNarcolepsyTeam Member

Really dense brain fog. Makes me so much less mentally acute than I was before.

posted July 28

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