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:
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.