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What Symptom Of Narcolepsy Do You Find Hardest To Manage?

A MyNarcolepsyTeam Member asked a question 💭
Birmingham, UK
July 21, 2022
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Answer Summary

Members opened up about which narcolepsy symptoms feel most overwhelming, with cataplexy emerging as especially frightening due to sudden... Read more

Members opened up about which narcolepsy symptoms feel most overwhelming, with cataplexy emerging as especially frightening due to sudden muscle loss, dangerous falls, broken bones, and the terrifying sensation of being awake but unable to move. Several members described the relentless brain fog and extreme daytime sleepiness that makes concentrating nearly impossible, causes unsafe moments like falling asleep while driving or at work, and persists no matter how much sleep they get, with some needing multiple alarms or physical shaking to wake. A recurring theme was the emotional toll of living with an invisible condition, including feelings of isolation, being judged as lazy or unmotivated by others who don't understand, and the constant need to advocate for oneself while managing vivid nightmares, sleep paralysis, and the exhausting unpredictability of sleep attacks.

A MyNarcolepsyTeam Member

Sleep Attacks, when the barometric pressure gets below 30mb or it gets to be 78⁰ in the house, often have a sleep attack. I don't know where they got the idea of 20 minute
naps and feeling refreshed after that- I sleep for 2 hours and wake up groggy and feel like my; energy has been ciphoned off. Hypnogogic jerks and night terrors suck too, though.

September 22, 2022 (edited)
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.

September 28, 2022
A MyNarcolepsyTeam Member

The most difficult for myself is the Cataplexy, I have severe muscle loss and end up in the floor. Secondly I feel I only sleep 10 - 15 mins. Then I'm wide awake. Just Frustrated.

September 19, 2022
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.

September 25, 2022
A MyNarcolepsyTeam Member

For me, it took a long time for me to accept that this was actually happening to me so I had a struggle with I’m just lazy, I lack motivation, like it was all me and nothing to do with narcolepsy. So for me, the hardest part is knowing if my symptoms are coming from narcolepsy or whatever normal is

May 17, 2023

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