In episode five of the Waking Up Tired - Narcolepsy Symptoms Explained podcast, host Di Spillane introduces us to Erin who was only 16 when she first experienced sleep paralysis. Sleep paralysis can occur as you are transitioning from wakefulness to sleep, or when your brain wakes up before your body does. You’re conscious—but frozen. You can’t move, can’t speak, and sometimes, you’re not alone.
During a sleep paralysis episode, many people experience hallucinations. They can be hypnagogic hallucinations that occur when you are drifting off to sleep, and or hypnopompic hallucinations which occur as you are waking up. They may hear sounds such as footsteps, see shadows, or even hear voices. It’s terrifying. And for people with narcolepsy, it can happen often.
Her journey to diagnosis was filled with confusion, fear, and a lack of support. From misdiagnosis to misinformation, Erin’s story highlights the emotional toll of being misunderstood, and the power of finding community.
Topics Covered:
• What sleep paralysis feels like from the inside
• The emotional impact of being “frozen awake”
• Misdiagnosis and the struggle to be taken seriously
• Navigating healthcare systems across countries
• Finding support through online narcolepsy communities
• The importance of informed, compassionate care
Hypnagogic hallucinations, seeing, hearing, feeling, smelling, or tasting something that isn't present.If you experience any of these symptoms please speak with your doctor.
Resources Mentioned:
• Living With Narcolepsy in Australia Facebook Group
• BBC documentary featuring Belle Hutt
• Orexin testing via lumbar puncture
Connect with Di: https://linktr.ee/wakinguptirednarcolepsy
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