“I was awake, but I couldn’t move. I could hear someone say my name—but no one was there.”
That was Erin’s first experience of sleep paralysis. She was 16, confused, and terrified. What she didn’t know then was that this moment would mark the beginning of her journey toward a diagnosis of Type 1 narcolepsy.
During Episode Five of the Waking Up Tired – Narcolepsy Symptoms Explained podcast, Erin shares her story with honesty and strength. From the haunting sensation of being frozen in her own body to the frustration of being misdiagnosed multiple times, Erin’s experience sheds light on the reality of living with this misunderstood neurological condition.
Sleep paralysis is one of narcolepsy’s core and most disturbing symptoms. You are conscious but unable to move, speak, or escape. Sleep paralysis is often accompanied with hypnagogic hallucinations, which occur when you are drifting off to sleep, and hypnopompic hallucinations which occur as you are waking up.
For Erin, it wasn’t just the paralysis—it was the fear of going back to sleep, the anxiety of not being believed, and the exhaustion of navigating a healthcare system that didn’t seem to understand.
In this episode, Erin talks about:
• The emotional toll of sleep paralysis
• The lack of information provided at diagnosis
• The power of online communities and peer support
• Her experience accessing medication across countries
• The importance of finding a sleep specialist who truly listens
“It’s like I’m falling, but I can’t trip myself awake. I’m stuck between dreaming and knowing I’m not dreaming—and I can’t do anything about it.”
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
Resources Mentioned:
• Living With Narcolepsy in Australia Facebook Group
• BBC documentary featuring Belle Hutt
• Orexin testing via lumbar puncture
Erin’s story is a reminder that narcolepsy is more than just being tired—it’s a complex condition that affects every part of life. And it’s why storytelling matters. When we listen to lived experience, we build empathy, awareness, and change. Follow & Share:
If this episode resonated with you, please share it with someone who needs to hear it. Subscribe to Waking Up Tired for more honest conversations about narcolepsy symptoms.
