In episode six of the Waking Up Tired - Narcolepsy Symptoms Explained podcast, host Di Spillane introduces us to Laura who shares her experience of one of the core narcolepsy symptoms, hallucinations.

When Laura first started seeing the Shadow Man, a dark, looming figure who hovered near her bed she thought she was losing her mind. The hallucinations were vivid, terrifying, and impossible to explain. She could see him. Feel him. And sometimes, he even spoke.

But Laura was not losing her mind. She was experiencing symptoms of POTS and the onset of type 2 narcolepsy when she was unwell with long COVID.

Laura shares her journey from confusion and fear to diagnosis and advocacy. She shares her experience with hallucinations, sleep paralysis, excessive daytime sleepiness, and the emotional toll from doctors who convinced her it was just the symptoms of long COVID, and the one specialist who told her sleep disorders “aren’t real”!

Laura developed sudden daytime sleepiness whilst recovering from COVID-19 but struggled to get a proper diagnosis and support from healthcare providers, often having her symptoms dismissed as long COVID.

Her story highlights the importance of recognising and accurately diagnosing sleep disorders post pandemic.

Topics Covered:

• Laura’s vivid hallucinations and encounters with the Shadow Man.

• The emotional toll of sleep paralysis and misdiagnosis. 

• How COVID-19 triggered her narcolepsy symptoms. 

• The fear of being labelled “crazy” by medical professionals. 

• The power of online support groups and finding the right specialist. 

• Why narcolepsy is still so misunderstood and what needs to change. 
• Living with an invisible disability.
• Life changing benefits of sodium oxybate for people living with narcolepsy.

Connect with Di: ⁠https://linktr.ee/wakinguptirednarcolepsy⁠

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Resources: 

Living with Narcolepsy in Australia Facebook Group

https://www.facebook.com/groups/1640576636416817/

Sleep Disorders Australia: https://sleep.org.au/Public/Public/Resource-Centre/F-C-Info/Patient-Support-Groups.aspx

Narcolepsy following COVID‐19: A case report and review of potential mechanisms https://pmc.ncbi.nlm.nih.gov/articles/PMC10213711/

COVID-19 and Narcolepsy Research: COVID-19 Long Haul Foundation https://cov19longhaulfoundation.org/?p=13098

Sleep disorder syndromes of post-acute sequelae of SARS-CoV-2 (PASC) / Long Covid https://www.sciencedirect.com/science/article/abs/pii/S1389945724004015

#autoimmune #COVID‐19 #hypersomnia #hallucinations #narcolepsy #sleep disorders #wakinguptired

* While research is still emerging, there is growing evidence that COVID-19 may trigger sleep disorders, including narcolepsy, in genetically predisposed individuals. For example, a 2022 study published in Sleep Medicine found a higher incidence of narcolepsy diagnoses following COVID-19 infection in certain populations.