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Surprising Symptoms of Narcolepsy

What are your most surprising symptoms of narcolepsy? How do you manage them?

  1. The horrid life-like nightmares. I kicked a huge hole in my bedroom wall and ripped a tall lamp apart while totally asleep. I tend to act out my dreams, which are typically very disturbing.

    1. How scary, . Do you live alone or is there someone to look out for you when you have your worst dreams? Thinking of you. - Lori (Team Member)

  2. Before I knew i was narcoleptic I would get sleep paralysis quit breathing and I would try to cry out but couldn't open my mouth I realize I wasn't breathing and would tell myself if I could just turn over I could breathe.by that time which seemed forever I would breathe again wake up be drenched in sweat.my 1st episode I remember was a junior in high school and wasn't diagnosed with narcolepsy til I was 33.a lot of scary years in between.

    1. Hi . What a terrifying period of your life that must have been. I've had only a few episodes of sleep paralysis (when I've had a fever and tried to nap). I can't imagine having them so often and so unpredictably. Are you on a treatment plan that helps? Warm wishes. - Lori (Team Member)

  3. The most surprising symptom for me was hypnagogic hallucination. I had no idea that was even a thing until it happened to me. I was lying there in bed one night trying to get to sleep and I looked up and there was a little old lady standing next to my bed. She had like a scarf in her hair, she was holding a basket and she had her on like a big woolly coat. To this day it's one of the strangest things I've ever seen. I would have been convinced absolutely that she was there because she looked so real but my boyfriend at the time didn't see her. I didn't think I'd suddenly become psychic or that my house was haunted so I looked up symptoms of narcolepsy and found out about hypnagogic hallucinations. I've been going back and forth with myself about trying to decide if I thought I had narcolepsy or not but between that and the daytime sleepiness, and the dropping of things, and my knees buckling when I got upset, and my slurring speech, I decided it was time to talk to a doctor, and eventually, I got my diagnosis.

    1. I had* been going back and forth with myself

    2. What a scary experience that must have been. I'm glad your boyfriend was there to assure you that the woman wasn't real. - Lori (Team Member)

  4. I agree with the unpredictability of symptoms. Sometimes I can drive for several hours without getting sleepy at all, or go all day without needing a nap…and other times I can barely drive 20 minutes before I know I have to pull over somewhere because I feel like I may have a sleep attack, or needing at least 2 naps a day. Interesting thing is there is nothing that I have done differently in those situations that would make me more sleepy.

    1. I am baffled by this myself... It's so frustrating isn't it? It would be so nice if there was any degree of logic that could be applied to this disease.

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