Narcolepsy Navigators Podcast

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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 [email protected].
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. 

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***If you find these symptoms relatable, please seek medical advice.***

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What does it look like to build an extraordinary life with narcolepsy — without medication?

Welcome to the Narcolepsy Navigators Advocacy Series, where lived experience meets powerful storytelling. This week, Kerly and Liz sit down with David Kuhn: a 27-year narcolepsy survivor, elite master fitness trainer, licensed massage therapist, and founder of the Facebook community Narcolepsy Naturally.

David's journey is one of the most remarkable we've heard. Diagnosed in 1998 at around age 28, he went from being unable to work, experiencing up to 40 cataplexy episodes a day, and reaching a personal rock bottom — to becoming a therapist for the Ohio State University football team, working with over 62 NFL players, Olympic gold medalists, and hundreds of elite athletes. And he has done all of this since 2010 entirely without narcolepsy medication.

In this honest, emotional, and deeply inspiring conversation, David shares what it actually took — the discipline, the baby steps, the mental frameworks, the dietary changes, the fitness routine, and the hard decision to remove toxic stress from his life — to get to where he is today.

He is not here to tell anyone what to do. He is here to show what is possible.

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WHAT YOU'LL HEAR IN THIS EPISODE
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• The early symptoms David dismissed as tiredness from overwork
• Falling asleep at the wheel — and the near-miss that finally sent him to a doctor
• A devastating diagnosis with no hope offered by his first doctor
• Medication overload, a mental health crisis, and the decision to walk out of a psych ward
• Rock bottom, and the moment that changed everything
• How he went back to school at 38 to become a massage therapist — medication-free
• His daily routine: sleep tracking, gym before 7:30am, whole foods, strategic napping
• Why he started the Narcolepsy Naturally Facebook group in 2015
• The mental strategies that keep him going: audiobooks, self-help, positive input
• Book recommendations: Seven Habits of Highly Effective People, Let Them Theory (Mel Robbins), Think and Grow Rich (Napoleon Hill)
• How he uses narcolepsy as a "shock factor" to inspire the athletes he works with
• His powerful message: narcolepsy is your soccer field, not your prison
• The Red Button Question — and his answer will not surprise you

⚠️ NOTE: This episode contains discussion of suicidal ideation and mental health crisis within David's personal story. Please take care of yourself first.

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CONNECT WITH DAVID
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🌐 dkmotivations.com
📧 [email protected]
👥 Facebook: Narcolepsy Naturally (3,500+ members)

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BOOKS RECOMMENDED IN THIS EPISODE
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📚 The 7 Habits of Highly Effective People — Stephen Covey
📚 The Let Them Theory — Mel Robbins
📚 Think and Grow Rich — Napoleon Hill
📚 The Power of Now — Eckhart Tolle (recommended by Liz)

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SUPPORT NARCOLEPSY NAVIGATORS
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💜 Join our Patreon for bonus content & Discord community access
🛍️ Shop our merch at napsforlife.com
🌐 www.napsforlife.com
📩 [email protected]

Have a sleep disorder story to share? We'd love to hear from you. Happy napping, everyone.

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***If you find these symptoms relatable, please seek medical advice.***

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⚠️ 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

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• 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

📧 [email protected]

🌐 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.<

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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 challenges
• The painful reality of transitioning from pediatric to adult care — and why retelling your medical story over and over is a form of trauma
• What 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 journey
• The "Three Columns" framework Steve uses to understand human, social, and cultural needs in healthcare
• Why Steve believes the patient is the biggest unsolved problem in health — and how to fix it with the right information at the right time
• The safety, encryption, and compliance features built into Nabu AI, including background checks for support workers
• What 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 conversation
• What gives Steve hope: the passionate frontline workers he keeps meeting all over the world

About 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: [email protected]
• ❤️ Support the podcast: www.napsforlife.com
• 💬 Join the community: Narcolepsy Navigators Discord & Patreon

Quote of the Episode: "Your true calling is where your great gladness and the world's deepest needs meet." — Frederick Buchner, shared by Steve Lewis

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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

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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 symptoms
• Managing brain fog, excessive daytime sleepiness, and ADHD-like symptoms during college
• Why 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 driver
• Breaking barriers and proving that narcolepsy isn't a limiting factor
• Practical advice for anyone who thinks their condition will hold them back

Guest 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 Narcolepsy
• Charlotte Motor Speedway area

Support 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.

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Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast 

***If you find these symptoms relatable, please seek medical advice.***

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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.

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***If you find these symptoms relatable, please seek medical advice.***

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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 years
• Two alarming car accidents that finally pushed her toward medical answers
• Misunderstandings from family vs the strong support she received from friends
• Brain fog, irritability, emotional exhaustion, and the unseen sides of IH
• Navigating grief after the loss of her father
• Medication struggles and the financial burden of treatment in Chile
• How exercise unexpectedly became one of her biggest tools
• What she wishes the world understood about IH
• Why she wouldn’t press the “red button” to remove her condition
• A 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.

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***If you find these symptoms relatable, please seek medical advice.***

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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:

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***If you find these symptoms relatable, please seek medical advice.***

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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 Patreon and Community Outro

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