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. S4E11: Blood Is Not Thicker: Boundaries, Trauma, and Narcolepsy

    May 14

    S4E11: Blood Is Not Thicker: Boundaries, Trauma, and Narcolepsy

    Leave a review! ⚠️ Content note: This episode includes discussion of childhood sexual abuse, suicidal ideation, and mental health crisis. Please take care of yourself first. 🎙️ EPISODE GUEST: Alejandro Bruner Solas — Program Manager, PWN for PWN | Narcolepsy Type 1 Warrior | Psychedelic Health Advocate | Colorado In one of our most powerful episodes to date, Kerly and Liz sit down with Alejandro Bruner Solas — a half Puerto Rican, Colorado-based program manager, Freemason, martial artist, and passionate narcolepsy advocate — who lived with undiagnosed narcolepsy type 1 from the age of five until he was 38. Alejandro's story is raw, honest, and deeply human. He walks us through childhood sleep paralysis he couldn't name, a silent burden shaped by trauma and abuse that taught him to keep quiet, misdiagnosis as a learning disability throughout school, a high-pressure corporate career that pushed him to breaking point, a mental health crisis that led to a life-changing ER visit, and an unconventional treatment path including microdosing LSD that he says gave him his life back. This episode also carries an important message for men in the narcolepsy community: your story matters, your voice is needed, and macho culture is not serving anyone. WHAT YOU'LL HEAR IN THIS EPISODE ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ • How sleep paralysis started at age 5 and went unnamed for over 30 years • The role childhood trauma played in Alejandro's silence around his symptoms • Being placed in special education despite no learning disability • The toxic workplace that drove him to sleep deprivation and crisis • The medication journey: Adderall, Modafinil, Xyrem, and Xywav • DMT, neuroplasticity, and the new frontier of psychedelic medicine • The power of mentors, small wins, and setting core values as anchors • His message to men in the narcolepsy and sleep disorder community CONNECT WITH ALEJANDRO & PWN FOR PWN 📧 alejandro@pwnforpwn.org 🌐 pwnforpwn.org 💬 Join the PWN for PWN digital community via the website RESOURCES MENTIONED If Alejandro's story resonated with you and you're navigating your own chronic illness journey, CareTrack was built for moments exactly like this — when you need to track what's happening in your body, document your path to diagnosis, and advocate for yourself in a system that doesn't always listen. Built by a spoonie, for spoonies.Free to use at steadycaretrack.com If you or someone you know has a sleep disorder and would like to share your story, please reach out — we'd love to have you on the show. 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 2m
  2. Advocacy Series S1E4: The App Built From a Father's Love: Nabu AI's Origin Story

    May 6 ·  Bonus

    Advocacy Series S1E4: The App Built From a Father's Love: Nabu AI's Origin Story

    Leave a review! Episode Summary: What happens when a brand strategist — someone who's built campaigns for Aerosmith, Lenny Kravitz, Samsung, and Levi's — suddenly finds himself standing in front of a wall of machines keeping his newborn daughter alive? For Steve Lewis, it became the beginning of the most important work of his life. In this episode of the Narcolepsy Navigators Advocacy Series, hosts Kerly and Iris sit down with Steve Lewis, founder of Nabu AI and director of Emotions.org, to talk about how a single sentence from his daughter Bowie — "Dad, I want to go to my own appointments" — sparked a mission to put patients back in control of their own health story. What We Cover: How Steve's career in entertainment and brand strategy came to a screeching halt when his daughter Bowie was born with complex, lifelong health challengesThe painful reality of transitioning from pediatric to adult care — and why retelling your medical story over and over is a form of traumaWhat Nabu AI actually is (hint: it's not a tracker — it's an advocate) and how it works as a single source of truth for your entire health journeyThe "Three Columns" framework Steve uses to understand human, social, and cultural needs in healthcareWhy Steve believes the patient is the biggest unsolved problem in health — and how to fix it with the right information at the right timeThe safety, encryption, and compliance features built into Nabu AI, including background checks for support workersWhat the UAE's "Al Nor Center" gets right that most of us don't — referring to disabled people as "determined people"Why invisible and rare conditions are superpowers — and how society loses when it excludes difference from the conversationWhat gives Steve hope: the passionate frontline workers he keeps meeting all over the worldAbout Steve Lewis: Steve Lewis is a seasoned brand strategist and product designer with 30+ years across music, film, fashion, and food. In 2007, the birth of his daughter Bowie changed everything. Now the founder of Nabu AI and Director of Emotions.org, Steve is on a mission to ensure patients are better informed, better supported, and achieve better outcomes. Find out more at [nabu.ai] (coming soon to iOS & Android). Resources & Links Mentioned: 🌐 Narcolepsy Navigators Hub: www.napsforlife.com💌 Share your story: narcolepsynavigators@gmail.com❤️ Support the podcast: www.napsforlifSupport 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.***

    54 min
  3. S1 E4 Medical Series: Hot Flashes, Anxiety, Insomnia:The Menopause Sleep Crisis with Dr. Caitlin Chasser

    Apr 6

    S1 E4 Medical Series: Hot Flashes, Anxiety, Insomnia:The Menopause Sleep Crisis with Dr. Caitlin Chasser

    Leave a review! Narcolepsy Navigators launches its Medical Series focused on the medical side of narcolepsy and common comorbidities. Host Fred (currently undiagnosed sleep disorder) and co-host Bernadette (narcolepsy type 1) interview Dr. Caitlin Chasser, a family doctor turned sleep and menopause specialist, who describes her own insomnia linked to premature menopause and the lack of sleep education in medical training. The discussion covers how menopause and perimenopause commonly disrupt sleep (estimated 60–80% experience sleep disturbance), and how sleep affects appetite, hormones, weight, repair, memory, mood, and daily functioning. Dr. Caitlin explains the role of stress and the sympathetic nervous system in blocking sleep, and emphasizes holistic and behavioral approaches including wind-down routines, meditation alternatives (coloring, knitting), breathwork, and body-scan techniques. She outlines practical sleep strategies for menopause-related insomnia: optimizing the sleep environment (darkness, quiet/white noise), regular exercise (with resistance training noted as beneficial with age), reducing alcohol, limiting naps (with a note that narcolepsy may require naps), and going to bed only when truly sleepy to build sleep pressure. Melatonin use is discussed as not a simple solution; it may help for jet lag, shift work, some children with ADHD/autism, and older adults, but should follow sleep basics and professional guidance, with caution about unregulated supplement dosing. Physical sleep disruptors are addressed, including hot flushes/night sweats, restless leg syndrome (often linked to iron deficiency from heavy periods), and obstructive sleep apnea (more common and underdiagnosed after menopause); she advises formal evaluation and targeted treatments, including iron supplementation when low. The episode also addresses libido changes during menopause, vaginal dryness and pain, topical estrogen or lubricants, the impact of poor sleep on desire and mood, and options such as HRT or testosterone therapy when appropriate, alongside emotional connection. Dr. Caitlin highlights cognitive behavioral therapy for insomnia (CBTI) as the gold-standard treatment, describes hyperarousal and normal sleep cycles, and notes significant improvements can be achieved. She introduces The Sleep Project, a group of clinicians formed after COVID to address rising sleep problems, offering online resources, consultations, and CBTI programs at www.thesleepproject.life. The episode closes with Narcolepsy Navigators announcements about Patreon, merch, Discord access, a shout-out to first patron Jane Powell, and information about Naps for Life CIC, ways to donate, and how to share stories via narcolepsynavigators@gmail.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.***

    52 min
  4. S4E10:Brain Fog and Blurry Words: The Invisible Symptoms Nobody Talks About

    Apr 1

    S4E10: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 Mood  41:29 - Finding Joy and Balance  43:58 - The Red Button Question  45:23 - What Narcolepsy Has Taught Me 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
  5. S4E9:Full Speed Ahead:  How Narcolepsy Can't Stop This Race Car Driver

    Mar 28

    S4E9: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
  6. 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
  7. 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
  8. 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

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.

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