Waking Up Tired Narcolepsy Symptoms Explained Podcast
In episode six of the Waking Up Tired – Narcolepsy Symptoms Explained podcast, host Di Spillane introduces us to Laura.
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 two narcolepsy when she had 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
* 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.
#autoimmune #COVID‐19 #hypersomnia #hallucinations #narcolepsy #sleep disorders #wakinguptired
Hallucinations / Hypnopompic/ Hypnagogic
Most people in the general population experience hallucinations from time to time, but not very often. People with narcolepsy tend to experience hallucinations more often, and the hallucinations experienced are more noticeable, making them stand out which helps to remember them.
For people with narcolepsy, hallucinations can be a regular event that can occur in any of the five senses. But, not every person living with narcolepsy will experience all of them, and some do not experience any at all.
Auditory hallucinations often leave them thinking that they heard someone call their name or hearing a radio or TV playing in the distance, but they are unable to make out what the announcer is saying or what the music is.
Visual hallucinations of narcolepsy are often fleeting glimpses out of the corner of your eye of things that are not actually there.
Olfactory (sense of smell) hallucinations are quite common in narcolepsy. Many think they can smell something burning such as toast.
Tactile (sense of touch) hallucinations can include feeling like something is crawling on your arm, or feeling that the floor is vibrating, or that something is on top of you.
Gustatory (sense of taste) the brief taste of a particular flavour.
