Waking Up Tired: Narcolepsy Symptoms Explained

Di Spillane
  • 5.0 (3)
  • HEALTH & FITNESS
  • UPDATED WEEKLY

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.

Episodes

  1. 11/09/2025

    Why Narcolepsy Takes Time to Diagnose: Dr David Cunnington Explains Narcolepsy in Clinical Practice

    The final episode of the Waking Up Tired - Narcolepsy Symptoms Explained podcast features Dr David Cunnington, a specialist sleep physician and educator, who’s spent over two decades listening to patients and helping decode the complexities of sleep disorders. 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. David also offers guidance for healthcare providers and patients alike, reminding us that expertise isn’t always the goal. Openness, curiosity, and collaboration are. 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. About David Cunnington: 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. David sees people at Sunshine Coast Respiratory & Sleep, in Birtinya and Noosa, and sees people from around Australia via Telehealth. Podcast Host/Creator: Di Spillane https://linktr.ee/wakinguptirednarcolepsy?utm_source=linktree_profile_share<sid=2404681d-6a7d-4444-82d4-5de4a8fed39a David Cunnington Links https://drdavidcunnington.com.au/  Sunshine Coast Respiratory and Sleep  https://www.screspiratorysleep.com.au/david-cunnington  Dr David Cunnington: Sleep Specialist –SleepHub  https://sleephub.com.au/about-us/dr-david-cunnington-specialist-sleep-physician/ Thank you for listening. Di Spillane

    34 min

  2. 11/02/2025

    When Laughter Knocks You Down Cataplexy Explained

    Episode seven of the Waking Up Tired – Narcolepsy Symptoms Explained podcast is about the one symptom that differs between narcolepsy type one and two, cataplexy. Narcolepsy Type 1 is defined by both excessive daytime sleepiness and cataplexy. Narcolepsy Type 2 is characterised by excessive daytime sleepiness but without cataplexy. 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. Guest's sharing their lived experience: 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. 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 Living with Narcolepsy in Australia group. 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. 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.” 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. What is cataplexy? 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. Potential risks Injury: Falling during a severe episode can lead to major injuries. 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. Treatment: 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. 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. Contact Host Di Spillane: https://linktr.ee/wakinguptirednarcolepsy  https://wakinguptiredcom.wordpress.com/Living with Narcolepsy in Australia: https://www.facebook.com/groups/1640576636416817/ If you or someone you know is experiencing symptoms like sudden muscle weakness triggered by emotion, please speak to a medical professional. #cataplexy #narcolepsy #livedexperience #realvoices #realstories #narcolepsysymptoms

    18 min

  3. 10/26/2025

    The Shadow Man and Me - Terrifying Narcolepsy Hallucinations

    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 Follow and 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. 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.

    25 min

  4. 10/19/2025

    Frozen Awake – The Fear of Sleep Paralysis

    In episode five of the Waking Up Tired - Narcolepsy Symptoms Explained podcast, host Di Spillane introduces us to Erin who was only 16 when she first experienced sleep paralysis. Sleep paralysis can occur as you are transitioning from wakefulness to sleep, or when your brain wakes up before your body does. You’re conscious—but frozen. You can’t move, can’t speak, and sometimes, you’re not alone. During a sleep paralysis episode, many people experience hallucinations. They can be hypnagogic hallucinations that occur when you are drifting off to sleep, and or hypnopompic hallucinations which occur as you are waking up. They may hear sounds such as footsteps, see shadows, or even hear voices. It’s terrifying. And for people with narcolepsy, it can happen often. Her journey to diagnosis was filled with confusion, fear, and a lack of support. From misdiagnosis to misinformation, Erin’s story highlights the emotional toll of being misunderstood, and the power of finding community. 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, seeing, hearing, feeling, smelling, or tasting something that isn't present.If you experience any of these symptoms please speak with your doctor. Resources Mentioned: •           Living With Narcolepsy in Australia Facebook Group •           BBC documentary featuring Belle Hutt •           Epworth Sleepiness Scale •           Orexin testing via lumbar puncture Connect with Di: https://linktr.ee/wakinguptirednarcolepsy 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.

    17 min

  5. 10/12/2025

    Disrupted Sleep, Disrupted Life: Disrupted Nighttime Sleepiness

    How would you cope if you were to wake up multiple times every night? Find out exactly what that is like by listening to Waking Up Tired - Narcolepsy Symptoms Explained. In episode four of the Waking Up Tired podcast, we’re joined by Dr. Aaron Shockman, a lived experience research fellow at the University of Sydney, whose personal journey with narcolepsy has shaped his research and advocacy. Aaron opens up about the brutal reality of disrupted nighttime sleep—waking up 30 to 40 times a night—and how it devastated his ability to function, study, and maintain relationships. He shares his experience with cataplexy, the terrifying paralysis triggered by laughter, and the steep learning curve of navigating a misunderstood condition with little support. What you will hear: • What disrupted nighttime sleep really feels like • The emotional toll of cataplexy and misdiagnosis • The impact on mental health, relationships, and daily life • Why Australia’s treatment options lag behind global standards • The life-changing role of sodium oxybate—and the barriers to accessing it • The importance of support groups and lived experience in advocacy If you’ve ever felt unseen in your health journey, this episode is for you. It’s raw, real, and a call for better awareness, access, and care. Resources mentioned: • Hypersomnolence Australia – for support and information about sodium oxybate access pathways • The value of Narcolepsy support groups and communities Contact: Host Di Spillane: dispillane68@gmail.com https://linktr.ee/wakinguptirednarcolepsy Links: ⁠https://wakinguptiredcom.wordpress.com/⁠ ⁠https://www.facebook.com/WakingUpTiredBlog/⁠ https://www.sydney.edu.au/medicine-health/about/our-people/academic-staff/aaron-schokman.html https://www.hypersomnolenceaustralia.org.au/single-post/how-to-access-xyrem-sodium-oxybate-in-australia https://www.hypersomnolenceaustralia.org.au/_files/ugd/a1218b_7b98f0bc0b0f4e1ca4734cb839edb36d.pdf

    13 min

  6. 10/05/2025

    Vivid Dreams. Was That Real? Narcolepsy, Memory, and the Blur Between Sleep and Reality

    Waking Up Tired - Narcolepsy Symptoms Explained Episode Three - Vivid Dreams In this deeply personal episode, Alicia shares navigating the blurred lines between dreams and reality—where vivid, realistic dreams can reopen trauma, strain relationships, and leave lasting confusion. Diagnosed with narcolepsy at 26 after years of misdiagnosis and dismissal, Alicia shares how the condition affects memory, emotional processing, and daily life. From dreaming about being late to work to reliving loss with alternate outcomes, this episode explores the emotional toll of narcolepsy and the healing power of community, advocacy, and self-awareness. Topics Covered:    Vivid dreams vs. reality: how narcolepsy distorts memory.  The emotional impact of dreaming about trauma with different outcomes.  Misdiagnosis and the long road to a narcolepsy diagnosis.  The role of head injuries and autoimmune factors.     Medication gaps and the importance of self-advocacy.  Finding support through online communities and practical tips. Resources Mentioned: Narcolepsy support groups on Facebook.  Sleep specialists and diagnostic pathways. Tips for morning routines with narcolepsy (e.g. pre-dosing medication) Connect with Di:   Facebook: Waking Up Tired https://www.facebook.com/WakingUpTiredBlog/    Website: https://waking-up-tired.com/ If you enjoyed this episode: Please rate, review, and share Waking Up Tired. Your support helps to educate and amplify real stories told by real people. Lived experience stories deserve to be heard, and our stories can be life changing for those who are currently living with undiagnosed narcolepsy. Thanks for listening. #VividDreams #SleepHealth #NarcolepsyAwareness #LivingWithNarcolepsy #WakingUpTiredPodcast #NarcolepsySymptoms #wakinguptired #narcolepsy

    12 min

  7. 09/28/2025

    Sleep Attacks: The Sneaky Side of Narcolepsy

    Waking Up Tired - Narcolepsy Symptoms Explained Sleep Attacks/ Micro Sleeps Description: In episode two, Jana, shares her powerful journey living withnarcolepsy type 1 in Australia. From falling asleep mid-conversation to microsleeps behind the wheel, Jana opens up about the subtle signs, emotional toll, and safety risks of sleep attacks — often misunderstood and misdiagnosed. She reflects on the years before her diagnosis, the shame ofbeing dismissed by doctors, and the relief of finally understanding what was happening to her body. Her story is raw, relatable, and a vital reminder that narcolepsy is more than just being tired — it’s a neurological condition thatdemands awareness and empathy. What You’ll Hear: - What sleep attacks (microsleeps) feel like in real life  - The emotional impact of delayed diagnosis  - Subtle warning signs Jana has learned to recognise  - Driving safety and the reality of living with narcolepsy  - How shame and misunderstanding can shape the diagnostic journey Guest: Jana – Narcolepsy Type 1 advocate, full-time worker, and mum living in Australia Host: Di Spillane – Narcolepsy Type 1 advocate and creator of Waking Up Tired - Narcolepsy Symptoms Explained A micro sleep doesn’t come upon a PWN with no warning; before having such an experience the PWN will already be feeling quite sleepy. However, unless they have sufficient awareness that they are drifting off and can somehow rescue the situation by actively breaking away by moving about or doing something different, a PWN in such a situation will fall briefly into a micro sleep. It is possible to experience multiple sequential micro sleeps before surrendering unwillingly to full-fledged sleep. This podcast exists to raise awareness, foster understanding, and help others find the diagnosis and support they deserve — sooner, not later. Join us next time as we continue exploring narcolepsy through real voices and lived experiences. Thanks for listening to Waking Up Tired.  https://wakinguptiredcom.wordpress.com/ LIVING WITH NARCOLEPSY IN AUSTRALIA Available wherever you get your podcasts. Follow & Share: #WakingUpTiredPodcast #NarcolepsyAwareness #MicrosleepMoments#sleepattacks #SleepHealthMatters

    18 min

  8. 09/21/2025

    Irresistible Urge to Sleep - Excessive Daytime Sleepiness (EDS)

    Real voices. Real stories. Demystifying narcolepsy one symptom at a time. Waking Up Tired: Narcolepsy Symptoms Explained - Excessive Daytime Sleepiness. Diving into the real-life experiences of individuals living with narcolepsy, by providing detailed information centred around how they each experienced one of the symptoms prior to receiving a diagnosis. Despite increased public education, misperceptions persist. Symptoms like EDS are sometimes mistaken for laziness or disinterest, leading to emotional distress, social stigma, and delayed treatment. Not everyone experiences all symptoms, and each person’s journey is different. This is why host Di Spillane decided to create this series, to give voice to what narcolepsy symptoms are like from a patient's perspective. In this first episode, this week's guest Belinda shares her experiences of the one symptom that every person with narcolepsy experiences which is Excessive Daytime Sleepiness, or EDS. EDS is often the first symptom to appear, but because it overlaps with so many other conditions, it’s frequently misunderstood or misdiagnosed, Belinda's diagnosis was delayed many year's for this very reason. If you’re listening and recognise parts of your own journey in what you hear, then please speak to your doctor. This podcast exists to raise awareness, foster understanding, and help others find the diagnosis and support they deserve — sooner, not later. Join us next time as we continue exploring narcolepsy through real voices and lived experiences. This independent podcast is the sole creation of Di Spillane. To get in touch, please contact Di via the Waking Up Tired website. https://wakinguptiredcom.wordpress.com/ Thanks to the members of the Living With Narcolepsy In Australia Facebook group for sharing their experiences for the series. Thank you for listening to Waking Up Tired. Available wherever you listen.

    10 min

  9. SEASON 1 TRAILER

    Waking Up Tired Podcast: Narcolepsy Symptoms Explained

    Real voices. Real stories. Demystifying Narcolepsy One Symptom at a Time. Diving into the real-life experiences of individuals living with narcolepsy, by providing detailed information centred around how they each experienced one of the symptoms prior to receiving a diagnosis. Waking Up Tired: Narcolepsy Symptoms Explained is a limited podcast series that amplifies the lived experiences of people with narcolepsy, offering insight into what thesymptoms truly feel like — from the patient’s perspective. My name is Di Spillane, and I live with narcolepsy type 1 in Australia. Although my symptoms began around age nine, I wasn’t diagnosed until I was 49. Learning about narcolepsy changed everything — and inspired me to raise awareness, hoping others might recognise their own symptoms and seek a diagnosis. Not everyone experiences all symptoms, and each person’s journey is different. This podcast series shares real stories from people living with narcolepsy — because symptoms alone don’t capture what it’s truly like. We believe lived experience speaks louder. Waking Up Tired: Narcolepsy Symptoms Explained launches September 22, 2025, wherever you get your podcasts. Links: https://wakinguptiredcom.wordpress.com/ https://www.facebook.com/WakingUpTiredBlog/

    2 min

Trailer

Ratings & Reviews

5
out of 5
3 Ratings

About

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.

Information