Narcolepsy Navigators Podcast

Kerly Bwoga

Narcolepsy Navigators isn't just another podcast; it's a lifeline, a space where every story shared is a step towards changing the narrative around narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome.  Every episode is a peek into the lives of people navigating these conditions every single day. It's raw, it's real, and it’s about sharing stories that are way too important to miss.  Because when we share, we have the power to change narratives – that’s our mantra, "Share a story to change a story." Everyday life with these conditions is an unseen odyssey, an intricate dance of challenges that most can't fathom. But we're here to bring those stories into the light, to give a voice to the silent struggles and the victories that often go unnoticed.It's about time the world saw beyond the misconceptions and understood the full impact these conditions have on someone's life.

  1. Brain Fog and Blurry Words: The Invisible Symptoms Nobody Talks About

    4D AGO

    Brain Fog and Blurry Words: The Invisible Symptoms Nobody Talks About

    Leave a review! In this powerful episode of Narcolepsy Navigators Season 4, we sit down with Amelia, a 28-year-old from London who discovered she had narcolepsy while playing cards on a skiing holiday. What started as uncontrollable laughter turned into a life-changing realization when her hands and neck kept dropping—classic cataplexy symptoms. Amelia shares her raw and honest journey from being dismissed by doctors who told her "you exercise and eat meat, so nothing will show up" to finally receiving her diagnosis on New Year's Eve 2020. Her story takes us through the struggles of sixth form, the relief of university's flexible schedule, and the grueling challenge of completing a PhD while battling extreme fatigue. What You'll Learn: How narcolepsy symptoms can be dismissed as "normal tiredness" for years The relief and validation that comes with a diagnosis Why spoon theory and battery theory help loved ones understand your limits The hidden symptoms beyond the "big four"—brain fog, concentration issues, and memory problems How work environments can make or break narcolepsy management The complicated relationship between family skepticism and chronic illness Why self-compassion is a work in progress, even after diagnosis Standout Moments: Amelia's creative napping solutions—from under-desk nests to prison classroom floors The unexpected benefit of working in high-energy environments How moving from PhD research to prison rehabilitation work improved her symptoms The bittersweet reality of avoiding conversations about narcolepsy with family members Why she'd press the red button (and why that answer deserves grace) Amelia's candid discussion about the mental health impact, the ongoing medication trials, and learning to advocate for herself in work environments makes this episode essential listening for anyone navigating life with narcolepsy or supporting someone who is. Episode Highlights: 00:00 - Welcome and Introductions  00:55 - Amelia's Weekend and Choir  06:11 - Early Symptoms and Medical Dismissal  09:25 - Coping Through School and University  12:46 - Would Early Diagnosis Have Changed Choices?  13:55 - Relief and Accommodations After Diagnosis  17:05 - Naps and Medication Journey  19:42 - Managing Symptoms Without Strong Medication  22:04 - Self-Compassion: A Work in Progress  23:32 - Friends, Family, and Hidden Pressure  25:15 - Speaking Up and Setting Boundaries  27:44 - Advocating at Work  29:32 - Dating and Cataplexy 31:02 - Family Skepticism and Hurt  33:08 - Coping with Unsupportive Family  36:38 - Beyond the Main Symptoms  39:22 - Mental Health and Low Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    50 min
  2. Full Speed Ahead: How Narcolepsy Can't Stop This Race Car Driver

    MAR 28

    Full Speed Ahead: How Narcolepsy Can't Stop This Race Car Driver

    Leave a review! Meet Vincent Arthur - a 21-year-old race car driver from Charlotte, North Carolina, who's proving that narcolepsy type 2 doesn't have to slow you down. In this inspiring episode of Narcolepsy Navigators, Vincent shares his powerful journey from struggling with undiagnosed brain fog and excessive daytime sleepiness in 2019 to becoming the first race car driver sponsored by Wake Up Narcolepsy in 2023. Discover how Vincent turned his diagnosis into a platform for advocacy, why he feels MORE comfortable behind the wheel than most people, and how he's using motorsports to shatter stereotypes about sleep disorders. From sim racing victories to real-world tracks, Vincent's story will challenge everything you think you know about living with narcolepsy. Key Topics Discussed: Vincent's 4-year journey to diagnosis and the relief of finally understanding his symptomsManaging brain fog, excessive daytime sleepiness, and ADHD-like symptoms during collegeWhy driving actually helps some people with narcolepsy stay alert (and the science behind it)Partnering with Wake Up Narcolepsy as the first sponsored race car driverBreaking barriers and proving that narcolepsy isn't a limiting factorPractical advice for anyone who thinks their condition will hold them backGuest Bio: Vincent Arthur is a 21-year-old professional race car driver and narcolepsy advocate based in Charlotte, North Carolina. Diagnosed with narcolepsy type 2 in early 2023, Vincent quickly became a voice for the sleep disorder community by partnering with Wake Up Narcolepsy as their first-ever sponsored race car driver. When he's not on the track, Vincent studies mechanical engineering and competes in sim racing, where he's achieved multiple victories. Follow his journey at @VincentA55 on all social platforms. Episode Highlights: [00:03:42] - Vincent's diagnosis journey from 2019 to 2023[00:13:00] - Navigating college with undiagnosed narcolepsy[00:23:00] - Why driving helps Vincent stay alert (the alertness factor)[00:25:32] - Partnership with Wake Up Narcolepsy and raising awareness[00:28:41] - Vincent's powerful message: "Narcolepsy is not a limiting factor"Connect with Vincent: Instagram/Twitter: @VincentA55 Resources Mentioned: Wake Up NarcolepsyCharlotte Motor Speedway areaSupport the Show: Support Narcolepsy Navigators on Patreon for bonus content, Discord access, and exclusive merch! Visit www.napsforlife.com Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    33 min
  3. S4E8:Motherhood, Pregnancy & Narcolepsy with Ashley Blankenship

    MAR 20

    S4E8:Motherhood, Pregnancy & Narcolepsy with Ashley Blankenship

    Leave a review! Can you have a successful pregnancy and thrive as a parent while living with Narcolepsy? This week on Narcolepsy Navigators, Kerly and Liz sit down with Ashley from North Carolina to answer this very question. Diagnosed in 2019 after over a decade of symptoms, Ashley shares her incredible journey through pregnancy and the first 20 months of motherhood. She opens up about the surprising relief from symptoms she experienced while pregnant, the difficult decision to come off life-changing medication, and the reality of navigating the "fourth trimester" with a chronic illness. From the importance of a supportive partner to managing postpartum anxiety and the chaos of a toddler, this episode is a must-listen for anyone in the Narcolepsy community considering parenthood. Tune in for an honest, hopeful, and inspiring conversation about building the family you want, even when your body has other plans. Key Topics Discussed: Ashley's journey to a Narcolepsy Type 1 diagnosis in 2019.The difficult decision to stop medication while trying to conceive and during pregnancy.The surprising improvement of Narcolepsy symptoms during pregnancy.The reality of labor, delivery, and the immediate postpartum period with a sleep disorder.The difference between "normal" sleep deprivation and Narcolepsy fatigue.Strategies for managing a toddler, a career, and a chronic condition.The vital role of a supportive partner and a "village."Navigating postpartum anxiety and finding tools for mental health.Advice for anyone with Narcolepsy who is considering parenthood.Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    41 min
  4. S4E7: Redefining Strength: Javiera's story of Resilience with IH

    MAR 19

    S4E7: Redefining Strength: Javiera's story of Resilience with IH

    Leave a review! In this powerful and emotional episode of Narcolepsy Navigators, we travel to South America for the very first time to share the story of Javiera Santamaría, a 28-year-old nurse from Santiago, Chile, living with Idiopathic Hypersomnia (IH). Javiera opens up about her early symptoms, dangerous sleep attacks while driving, years of self-doubt, and the life-changing moment she finally received a diagnosis. Through laughter, tears, grief, and growth, she reveals how IH reshaped her relationships, her career, and her self-perception — and why she now feels proud of the person she has become. This episode shines a light on the challenges of living with IH in a country with no formal narcolepsy or IH organization, the high costs of medication, and the stigma that often follows invisible illnesses. Her story is raw, relatable, deeply human — and a reminder that you’re never alone in your journey. What You’ll Hear in This Episode Javiera’s earliest symptoms and why she blamed herself for yearsTwo alarming car accidents that finally pushed her toward medical answersMisunderstandings from family vs the strong support she received from friendsBrain fog, irritability, emotional exhaustion, and the unseen sides of IHNavigating grief after the loss of her fatherMedication struggles and the financial burden of treatment in ChileHow exercise unexpectedly became one of her biggest toolsWhat she wishes the world understood about IHWhy she wouldn’t press the “red button” to remove her conditionA heartfelt conversation about resilience, identity, and hope Why This Episode Matters Millions live with undiagnosed sleep disorders — especially in regions without awareness or support. Javiera’s story may be the sign someone else desperately needs. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    1h 16m
  5. S4E6:Building a Life That Works With Your Energy: Cloud’s Journey

    MAR 7

    S4E6:Building a Life That Works With Your Energy: Cloud’s Journey

    Leave a review! In this episode of Narcolepsy Navigators, we sit down with Cloud, a narcolepsy advocate from San Diego living with Narcolepsy Type 1 with cataplexy. After years of struggling with unexplained exhaustion and symptoms that began in adolescence, Cloud was finally diagnosed at age 30. But diagnosis wasn’t the end of the journey — it was just the beginning. For nearly a decade, Cloud intentionally stepped away from traditional schedules to learn how their body actually functions with narcolepsy. That meant building a life around energy levels, sleep cycles, and personal boundaries rather than society’s expectations. Now, ten years later, Cloud has reentered the workforce and is navigating what it means to balance work, health, relationships, and identity with a neurological sleep disorder. This conversation is honest, thoughtful, and deeply relatable for anyone learning how to build a life around chronic illness rather than fighting against it. Topics Covered • Recognizing narcolepsy symptoms as a teenager  • Receiving a diagnosis at age 30  • Why Cloud stepped away from traditional work for years  • Learning to live on your body’s schedule  • Reentering the workforce after a decade  • Balancing friendships, family, and fatigue  • The mental load of narcolepsy  • Adjusting medication and nap schedules  • Why understanding your body is essential Why This Episode Matters Narcolepsy isn’t just about sleep attacks. It affects careers, identity, relationships, and how people move through the world. Cloud’s story highlights the importance of self-awareness, boundaries, and designing a life that works with your condition instead of against it. About the Guest Cloud lives in San Diego and was diagnosed with narcolepsy with cataplexy at age 30 after experiencing symptoms since adolescence. Over the past decade, they have focused on understanding how to live well with narcolepsy and are now exploring new ways to reconnect with work, community, and purpose. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    49 min
  6. Medical Series S1E4:Hot Flashes, Anxiety, Insomnia-The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser

    MAR 1 ·  BONUS

    Medical Series S1E4:Hot Flashes, Anxiety, Insomnia-The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser

    Leave a review! Hot Flashes, Anxiety, Insomnia:The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser  Narcolepsy Navigators launches its Medical Series on narcolepsy and overlooked comorbidities, with host Fred (undiagnosed sleep disorder), co-host Bernadette (narcolepsy type 1), and guest Dr. Caitlin Chasser, a family doctor specializing in sleep and menopause. Dr. Caitlin shares how her own insomnia and premature menopause led her to focus on sleep, emphasizing holistic tools (meditation, breath work, body scans), exercise (especially resistance training), and personalized sleep environments to reduce hyperarousal. She discusses common menopause-related sleep problems (poor sleep quality, insomnia, obstructive sleep apnea, restless leg syndrome linked to iron deficiency), the impact of alcohol, naps, and bedtime routines, and notes CBT-I as the gold-standard insomnia treatment. The episode also covers melatonin’s limited indications, hot flushes and temperature regulation, libido changes, and resources from The Sleep Project, plus podcast Patreon/merch announcements. About The Guest Dr Caitlin Chasser is a GP and Sleep Consultant with a special interest in women’s health, particularly how sleep is affected by menopause.She is a co-founder of The Sleep Project, a doctor-led organisation helping people of all ages improve their sleep through practical, science-backed programmes. Caitlin has over 20 years of experience supporting women to feel better, sleep better and take back control of their health.She specialises in Cognitive Behavioural Therapy for Insomnia (CBT-I), the most effective treatment for long-term sleep difficulties, and takes a holistic, compassionate approach to sleep and wellbeing. Caitlin is passionate about making good sleep accessible to all — especially during life stages like menopause when sleep can often suffer.  00:00 Medical Series Kickoff 01:18 Meet the Hosts and Guest 02:43 Dr Caitlin Origin Story 04:26 Holistic Sleep Foundations 06:54 Exercise and Sleep Quality 09:05 Menopause Sleep Changes 10:28 Melatonin Myths and Uses 14:54 Menopause Sleep Changes 15:56 Menopause Insomnia Playbook 21:28 Sleep Safety and Hyperarousal 25:28 Wind Down and Mind Quieting 27:49 Breathwork Sleep Hack 28:45 Tools for 2AM Wakeups 29:52 Sports Body Scan Story 31:35 Military Body Scan Explained 32:28 Menopause Sleep Disruptors 34:24 Hot Flashes and Temperature 36:52 Libido Sleep Connection 38:32 Comfort and Hormone Options 40:51 Menopause Surprise and Support 44:25 CBTI Works and Next Steps 46:58 Why the Sleep Project Started 49:15 Wrap Up and Resources 50:21 Patre Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    52 min
  7. Medical Series S1E3 : Sleep Affects Everything: A Neurologist Breaks It Down”

    FEB 9

    Medical Series S1E3 : Sleep Affects Everything: A Neurologist Breaks It Down”

    Leave a review! This Bonus Episode is now available to everyone in celebration of Black History Month!! In our latest episode of Narcolepsy Navigators’ Medical Series, we sit down with Dr. Chris Allen, board-certified pediatric neurologist and sleep medicine specialist, founder of Quality Sleep and Neurology PC in Michigan. Dr. Allen brings both medical expertise and lived experience to the conversation, sharing his own 21-year journey living with obstructive sleep apnea while breaking down why sleep disorders are among the most misunderstood and underdiagnosed medical conditions today. We cover everything from narcolepsy misdiagnosis and pediatric sleep disorders to the dangerous myth that snoring is “normal,” the real connection between sleep and heart health, and why CPAP is not the only treatment option for sleep apnea. This episode is a must-listen for patients, parents, clinicians, and anyone who has ever been told, “You’re just tired.” Topics Covered Why sleep medicine is still under-taught in medical schoolsDr. Allen’s personal experience with sleep apneaWhy snoring is a medical red flag, not a jokeNarcolepsy vs depression vs hypersomniaPediatric sleep disorders and missed diagnosesADHD-like symptoms caused by poor sleep in childrenRestless legs, ferritin levels, and iron deficiencyThe link between sleep, heart disease, and blood pressureCPAP alternatives and emerging treatmentsHustle culture and why sleep deprivation hurts productivityRepresentation and trust in healthcare Why This Episode Matters Sleep disorders don’t just affect energy — they affect memory, mood, heart health, development, and lifespan. Dr. Allen explains why untreated sleep conditions quietly damage the body over time and why awareness can literally save lives. About the Guest Dr. Christopher J. Allen, MD is a board-certified pediatric neurologist and sleep medicine specialist, founder of Quality Sleep and Neurology PC. Known online as Sleep Dr. Chris, he is a leading voice in accessible sleep education and a strong advocate for patient-centered care. Above all, Dr. Allen is a devoted family man, proud husband, and father of two—bringing the same passion he holds for his patients to his home and loved ones. Every child deserves a good night's sleep... Purchase Your Copy of Sweet Dreams Today:  https://www.sleepdrchris.com/ Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    46 min
  8. Advocacy Series S1E1: Why Narcolepsy Is a Family Diagnosis, Not Just an Individual One

    FEB 5

    Advocacy Series S1E1: Why Narcolepsy Is a Family Diagnosis, Not Just an Individual One

    Leave a review! Narcolepsy is often misunderstood, dismissed, and dangerously underdiagnosed — especially in women. In this powerful Advocacy Series episode, we sit down with Dr. Anne-Marie Morse, a neurologist with specialized training in child neurology and sleep medicine, to talk about what real advocacy looks like, why diagnosis delays can stretch nearly two decades, and how patients can reclaim power in the healthcare system. Dr. Morse breaks down one of the most important truths in sleep medicine: language matters. Words like tired, fatigue, and sleepiness are not interchangeable — and using the wrong one can lead to missed diagnosis and years of suffering. We also discuss the emotional reality of narcolepsy: grief, identity, guilt, family dynamics, and why peer support and global community are essential. From workplace wellness myths to school system failures, this conversation is both validating and activating. If you’ve ever felt unheard, minimized, or reduced to a score on a scale — this episode is for you. In This Episode, We Cover: Why narcolepsy impacts an entire ecosystem (family, friends, school, work) The average delay to diagnosis — and why women face longer delays The difference between sleepiness vs tiredness vs fatigue Why you are NOT your Epworth Sleepiness Scale score The best question a doctor can ask: “What can’t you do?” The grief that comes with diagnosis — for patients AND families Why mental health support should be standard in chronic illness care How peer support can prevent isolation and long-term disability Why sleep should be treated like water — essential, non-negotiable How advocacy needs to become global to create real change Key Takeaway “We need to create treatment regimens that fit people’s lives — not lives that fit treatment regimens.”  Dr Ann Marie Morse Resources Mentioned Project Sleep Hypersomnia Foundation Wake Up Narcolepsy Faces of Narcolepsy Julie Flygare’s book: Wide Awake and Dreaming Listen + Subscribe 🎧 Listen now and share this episode with someone who needs to hear it. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    1h 8m
See All (54)

Ratings & Reviews

5
out of 5
3 Ratings

About

Narcolepsy Navigators isn't just another podcast; it's a lifeline, a space where every story shared is a step towards changing the narrative around narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome.  Every episode is a peek into the lives of people navigating these conditions every single day. It's raw, it's real, and it’s about sharing stories that are way too important to miss.  Because when we share, we have the power to change narratives – that’s our mantra, "Share a story to change a story." Everyday life with these conditions is an unseen odyssey, an intricate dance of challenges that most can't fathom. But we're here to bring those stories into the light, to give a voice to the silent struggles and the victories that often go unnoticed.It's about time the world saw beyond the misconceptions and understood the full impact these conditions have on someone's life.

Information

  • Creator
    Kerly Bwoga
  • Years Active
    2024 - 2026
  • Episodes
    54
  • Rating
    Explicit
  • Copyright
    © 2026 Narcolepsy Navigators Podcast
  • Show Website
    Narcolepsy Navigators Podcast

You Might Also Like