Real voices. Real stories. Demystifying narcolepsy one symptom at a time. Host Di Spillane, a person who lives with narcolepsy type one or with cataplexy, with the assistance of each guest, will be Diving into the real-life experiences of individuals living with narcolepsy, by providing detailed information centred around how each guest experienced one of their symptoms prior to receiving a diagnosis. Reading the words and looking up their meaning doesn't provide the knowledge that those with lived experience can.
Waking Up Tired: Narcolepsy Symptoms Explained
Claim This Podcastby Di Spillane
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9 episodes
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Podcast Overview
Real voices. Real stories. Demystifying narcolepsy one symptom at a time. Host Di Spillane, a person who lives with narcolepsy type one or with cataplexy, with the assistance of each guest, will be Diving into the real-life experiences of individuals living with narcolepsy, by providing detailed information centred around how each guest experienced one of their symptoms prior to receiving a diagnosis. Reading the words and looking up their meaning doesn't provide the knowledge that those with lived experience can.
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Publishing Since
9/11/2025
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Recent Episodes
November 9, 2025
Why Narcolepsy Takes Time to Diagnose: Dr David Cunnington Explains Narcolepsy in Clinical Practice
<p>The final episode of the <strong>Waking Up Tired - Narcolepsy Symptoms Explained</strong> podcast features <strong>Dr David Cunnington</strong>, a specialist sleep physician and educator, who’s spent over two decades listening to patients and helping decode the complexities of sleep disorders. </p><p>David shares what narcolepsy looks like from the other side of the desk, why diagnosis takes time, how clinicians think through sleepiness, and what makes narcolepsy with cataplexy so uniquely difficult to identify. The importance of narrative history, the key disorders of hypersomnolence including Narcolepsy (Types 1 and 2) and Idiopathic Hypersomnia (IH), and the diagnostic tools that help distinguish narcolepsy from its many mimics. </p><p>David also offers guidance for healthcare providers and patients alike, reminding us that expertise isn’t always the goal. Openness, curiosity, and collaboration are.</p><p>Episode eight is about bridging understanding, validating the lived experience of sleepiness and offering insight into the systems that shape diagnosis and care. Whether you’re living with narcolepsy, supporting someone who is, or working in healthcare, this episode is for you.</p><p><strong>About David Cunnington:</strong></p><p>David undertook training in sleep medicine both in Australia and in Boston at Harvard Medical School as part of completing his specialist medical training as a specialist sleep physician. In addition to training in sleep medicine, David has international qualifications in behavioural sleep medicine being a Diplomat Behavioural Sleep Medicine (US Board of Behavioural Sleep Medicine), which means he is expert in using non-drug treatments such as cognitive behavioural therapy to manage sleep problems. David is expert in the measurement and interpretation of sleep data and using this data to better understand people’s sleep and sleep problems and plan management. </p><p>David sees people at <strong>Sunshine Coast Respiratory & Sleep</strong>, in Birtinya and Noosa, and sees people from around Australia via Telehealth. </p><p><strong>Podcast Host/Creator:</strong> Di Spillane</p><p><a href="https://linktr.ee/wakinguptirednarcolepsy?utm_source=linktree_profile_share<sid=2404681d-6a7d-4444-82d4-5de4a8fed39a" target="_blank" rel="noopener noreferer">https://linktr.ee/wakinguptirednarcolepsy?utm_source=linktree_profile_share&ltsid=2404681d-6a7d-4444-82d4-5de4a8fed39a</a></p><p><strong>David Cunnington</strong> <strong>Links</strong></p><p><a href="https://drdavidcunnington.com.au/">https://drdavidcunnington.com.au/</a><strong></strong></p><p><strong> Sunshine Coast Respiratory and Sleep</strong></p><p><strong> </strong><a href="https://www.screspiratorysleep.com.au/david-cunnington">https://www.screspiratorysleep.com.au/david-cunnington</a><strong></strong></p><p><strong> Dr David Cunnington: Sleep Specialist –SleepHub</strong></p><p><strong> </strong><a href="https://sleephub.com.au/about-us/dr-david-cunnington-specialist-sleep-physician/">https://sleephub.com.au/about-us/dr-david-cunnington-specialist-sleep-physician/</a><strong></strong></p><p>Thank you for listening.</p><p>Di Spillane</p><p></p>
November 2, 2025
When Laughter Knocks You Down Cataplexy Explained
<p>Episode seven of the <strong>Waking Up Tired – Narcolepsy Symptoms Explained </strong>podcast is about the one symptom that differs between narcolepsy type one and two, <strong>cataplexy</strong>. Narcolepsy Type 1 is defined by both excessive daytime sleepiness and cataplexy. Narcolepsy Type 2 is characterised by excessive daytime sleepiness but without cataplexy.</p><p>Because cataplexy varies so much between people who live with narcolepsy type one, this week we have two guests sharing their lived experience with cataplexy, and their narcolepsy diagnostic journey's.</p><p><strong>Guest's sharing their lived experience:</strong></p><p>First, we hear from Andrew. Andrew’s journey with narcolepsy began at 18, during a boating holiday on the River Avon in England. His first cataplexy attack came while fishing. The excitement of a bite on the line caused his muscles to give way, and he collapsed on the deck.</p><p>From collapsing on a footpath while rescuing a cat, to nearly drowning during a cataplexy attack in shallow water, Andrew's is a story of resilience, love, and finally finding community support and understanding through the <strong>Living with Narcolepsy in Australia </strong>group.</p><p>Elsie’s story brings us into the world of childhood narcolepsy with her experience with cataplexy beginning much earlier, around the age of eight, but it took nearly seven years to get a diagnosis. </p><p>Her symptoms started subtly, with facial drooping and knee buckling when she laughed, and were often dismissed as “just being tired” or “having a funny laugh.”</p><p>Despite her mum’s early instincts that something wasn’t right, Elsie faced years of confusion after being told by doctor's that there was nothing wrong with her. It wasn’t until she took matters into her own hands at age 15 when she decided to research her symptoms and pushing for a sleep study, that she finally received a diagnosis of narcolepsy type 1.</p><p>What is cataplexy?</p><p>Cataplexy is a sudden, brief loss of voluntary muscle control, often triggered by strong emotions like laughter, surprise, or anger. While it can manifest as a minor symptom like a drooping jaw, severe episodes can cause a person to collapse to the ground, remaining awake but unable to move or speak for a few minutes.</p><p><strong>Potential risks</strong></p><p>Injury: Falling during a severe episode can lead to major injuries.</p><p>Disruption: Cataplexy can seriously disrupt a person's daily life and force them to avoid social interactions due to the unpredictability of when a cataplexy episode will occur.</p><p><strong>Treatment:</strong> Prescribing rules in Australia mean antidepressant medications are often a first-line treatment option, even when far more effective medications are available elsewhere, medications that don’t take away the person with narcolepsy’s ability to feel emotions.</p><p>Sodium oxybate is an effective treatment for both cataplexy and EDS. Sodium oxybate's mechanism of action (moa) for cataplexy involves slowing down overactive processes in the brain. The moa of sodium oxybate in narcolepsy involves increasing the amount of time the body spends in a deep sleep at night, reducing how much sleepiness occurs during the day. Accessing these medications without them being on the Benefits Scheme (PBS) makes them prohibitively expensive for patients in Australia.</p><p><strong>Contact Host Di Spillane:</strong></p><p><a href="https://linktr.ee/wakinguptirednarcolepsy">https://linktr.ee/wakinguptirednarcolepsy</a></p><p><strong> </strong><a href="https://wakinguptiredcom.wordpress.com/"><strong>https://wakinguptiredcom.wordpress.com/</strong></a><strong>Living with Narcolepsy in Australia:</strong></p><p><a href="https://www.facebook.com/groups/1640576636416817/" target="_blank" rel="noopener noreferer">https://www.facebook.com/groups/1640576636416817/</a></p><p>If you or someone you know is experiencing symptoms like sudden muscle weakness triggered by emotion, please speak to a medical professional.</p><p>#cataplexy #narcolepsy #livedexperience #realvoices #realstories #narcolepsysymptoms</p><p></p>
October 26, 2025
The Shadow Man and Me - Terrifying Narcolepsy Hallucinations
<p>In episode six of the <strong>Waking Up Tired - Narcolepsy Symptoms Explained</strong> podcast, host <strong>Di Spillane</strong> introduces us to Laura who shares her experience of one of the <strong>core narcolepsy </strong>symptoms, <strong>hallucinations</strong>.</p><p>When Laura first started seeing the <strong>Shadow Man</strong>, a dark, looming figure who hovered near her bed she thought she was losing her mind. The <strong>hallucinations</strong> were vivid, terrifying, and impossible to explain. She could see him. Feel him. And sometimes, he even spoke.</p><p>But Laura was not losing her mind. She was experiencing symptoms of <strong>POTS</strong> and the onset of<strong> type 2 narcolepsy </strong>when she was unwell with<strong> long COVID</strong>.</p><p> 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”!</p><p>Laura developed sudden daytime sleepiness whilst recovering from <strong>COVID-19</strong> but struggled to get a proper diagnosis and support from healthcare providers, often having her symptoms dismissed as long COVID. </p><p>Her story highlights the importance of recognising and accurately diagnosing sleep disorders post pandemic.</p><p><strong>Topics Covered:</strong></p><ul><li>Laura’s vivid hallucinations and encounters with the Shadow Man. </li></ul><ul><li>The emotional toll of sleep paralysis and misdiagnosis. </li></ul><ul><li>How COVID-19 triggered her narcolepsy symptoms. </li></ul><ul><li>The fear of being labelled “crazy” by medical professionals. </li></ul><ul><li>The power of online support groups and finding the right specialist. </li></ul><ul><li>Why narcolepsy is still so misunderstood and what needs to change. </li><li>Living with an invisible disability.</li><li>Life changing benefits of sodium oxybate for people living with narcolepsy.</li></ul><p><br></p><p><strong>Connect with Di</strong>: <a href="" target="_blank" rel="ugc noopener noreferrer">https://linktr.ee/wakinguptirednarcolepsy</a></p><p><strong>Follow and Share:</strong> 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.</p><p><strong>Resources: </strong></p><p><strong>Living with Narcolepsy in Australia Facebook Group</strong></p><p><a href="https://www.facebook.com/groups/1640576636416817/" target="_blank" rel="ugc noopener noreferrer">https://www.facebook.com/groups/1640576636416817/</a></p><p><strong>Sleep Disorders Australia</strong>: <a href="https://sleep.org.au/Public/Public/Resource-Centre/F-C-Info/Patient-Support-Groups.aspx" target="_blank" rel="ugc noopener noreferrer">https://sleep.org.au/Public/Public/Resource-Centre/F-C-Info/Patient-Support-Groups.aspx</a></p><p><strong>Narcolepsy following COVID‐19: A case report and review of potential mechanisms </strong><a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC10213711/" target="_blank" rel="ugc noopener noreferrer">https://pmc.ncbi.nlm.nih.gov/articles/PMC10213711/</a><strong></strong></p><p><strong>COVID-19 and Narcolepsy Research: COVID-19 Long Haul Foundation </strong><a href="https://cov19longhaulfoundation.org/?p=13098" target="_blank" rel="ugc noopener noreferrer">https://cov19longhaulfoundation.org/?p=13098</a></p><p><strong>Sleep disorder syndromes of post-acute sequelae of SARS-CoV-2 (PASC) / Long Covid </strong><a href="https://www.sciencedirect.com/science/article/abs/pii/S1389945724004015" target="_blank" rel="ugc noopener noreferrer">https://www.sciencedirect.com/science/article/abs/pii/S1389945724004015</a><strong></strong></p><p><strong>#autoimmune #COVID‐19 #hypersomnia #hallucinations #narcolepsy #sleep disorders #wakinguptired</strong></p><p>* 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. </p><p><br></p>
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