ICU - "I See You" - Vestibular Conversations

The Vestibular Disorders Association (VeDA) & Unfixed Media

In the ICU ("I See You") podcast hosts Cynthia Ryan and Kimberly Warner explore the vestibular experience by facilitating conversations between vestibular patients and the health professionals who care for them. They invite patients to share their stories, and healthcare professionals to ask questions so they are equipped to care for, and truly see their patients. This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.

  1. CANVAS-Cerebellar Ataxia, Neuropathy, and Vestibular Areflexia Syndrome

    2D AGO

    CANVAS-Cerebellar Ataxia, Neuropathy, and Vestibular Areflexia Syndrome

    In this episode of the ICU podcast, we’re exploring CANVAS—short for cerebellar ataxia, neuropathy, and vestibular areflexia syndrome—a rare, progressive neurological condition that disrupts the very systems our bodies rely on to stay balanced and oriented. CANVAS affects the cerebellum, sensory nerves, and inner ear balance system all at once, creating a “triple hit” that can lead to unsteadiness, dizziness, vision changes with head movement, and worsening coordination over time. Although researchers have only recently begun to understand its genetic cause, much remains unknown about how it develops and how best to manage it. Today, we’re joined by Celeste Suart, Patient Engagement Director at the National Ataxia Foundation, and Denise Luken, who is living with CANVAS, to share both the clinical perspective and the lived experience of navigating this complex and often misunderstood condition. Guest bios Celeste Suart, PhD, is the Patient Engagement Director for the National Ataxia Foundation. She earned her PhD in biochemistry at McMaster University, where her research focused on Ataxia, science communication, and adult education. Celeste leads the development of various patient-facing research communications, educational materials, and informational webinars. She also acts as a liaison between NAF, researchers, clinicians, industry professionals, and the ataxia community. Celeste strongly believes in the empowering nature of education. She is committed to supporting the agency of Ataxians and their families through access to research information and opportunities.    Denise lives in North Carolina with her husband of nearly 25 years, Bill, and their two dogs. After an active life that included raising two children, working in IT, and enjoying sports like tennis and skiing, she began experiencing balance issues, falls, and coughing in her early 50s. Following years of testing, she was first diagnosed with idiopathic ataxia, and later with RFC1-related CANVAS. Now in her mid-60s, Denise stays active with regular exercise and physical therapy, using a cane or rollator for support.

    48 min
  2. APR 8

    How Gut Health Impacts Vestibular Symptoms

    In today’s episode of the ICU Podcast, we explore the fascinating connection between gut health and vestibular disorders—and why taking care of your digestive system might be an overlooked piece of your wellness puzzle. What happens in your gut doesn’t always stay in your gut: when the lining of the intestine becomes compromised, it can lead to systemic inflammation, nutrient malabsorption, and an imbalanced microbiome—all of which may influence vestibular symptoms like vertigo, dizziness, and balance issues. The gut is also a major producer of neurotransmitters that affect mood and nervous system balance, and imbalances there could potentially affect how your brain processes vestibular signals. Today, we’ll break down what gut health really means, how it intersects with vestibular function, and practical takeaways you can consider as part of your overall health strategy. Guest Bios Leigha Kingsley is an actress, writer, producer, and director. Her acting credits include films starring Will Ferrell and Woody Harrelson, and TV shows like Criminal Minds. She is a champion for female-driven stories, and her scripts have been finalists for Sundance, HBO Project Greenlight, and the New York Television Festival. Leaha has been experiencing Vestibular Migraines for the past year. She is still new to this journey, but one thing she has noticed is that the foods she consumes have a direct correlation with how well her brain and vestibular system operate.  Carla Alpert, FDN-P, NBC-HWC, FMCHC, is a trauma-informed Board-Certified Health & Wellness Coach and Functional Medicine Practitioner. She focuses on gut health and how it affects overall health because, unlike Las Vegas, what happens in the gut doesn’t always stay in the gut. Symptoms become the way your body tells you there’s an imbalance. Many times, problems that seem unrelated to gastrointestinal health, such as brain fog, fatigue, anxiety, and even skin issues, can stem from an imbalance in the microbiome. Carla supports her clients in uncovering the root cause(s) of digestive problems and other chronic symptoms, restoring overall health and well-being. Her mission as a coach is to help her clients explore and discover solutions to live a life with renewed vitality, radiant health, authenticity, and purpose—without the overwhelm. Learn more about Carla here.

    1h 1m
  3. Healing with Gratitude & Humor

    MAR 6

    Healing with Gratitude & Humor

    In this episode of the ICU Podcast, we explore how humor and gratitude can become powerful tools for coping with chronic vestibular disorders. Living with dizziness, vertigo, or imbalance can often feel isolating and overwhelming—but laughter and thankfulness can help restore balance to both body and mind. Research shows that humor can lower blood pressure, reduce stress hormones, boost immune function, and even trigger endorphins—our body’s natural painkillers. Similarly, practicing gratitude has been linked to better sleep, improved mood, and enhanced overall well-being. Our guests—a vestibular patient who’s found resilience through laughter, and health coach Hilary Russo, creator of the “HIListic” approach to mindful self-compassion—share how humor and gratitude have transformed their healing journeys and offer practical ways to bring more lightness and appreciation into everyday life. Guest Bios Mary Ziegler was once reliable, hard-working, and a dedicated wife and mother. But when Meniere's disease and vestibular migraine hit, she had to leave her job and stop driving. One of the things Mary misses the most is helping other people. She misses parties with friends and family. But she has devised ways to dwell in joy and gratitude. She likes being a VeDA Ambassador because it allows her to help people in Chicago, where she lives, and all over the world. She is grateful for her family and friends, and for the doctors who recognize her as an expert in her condition. Hilary Russo is a certified trauma-informed holistic mental health practitioner and health coach, one of only 50 certified Havening Techniques® Trainers globally, and one of the first 100 Certified Havening Practitioners in the United States. Due to her work in Havening and trauma-informed care, Hilary is a recommended referral partner with the nationally recognized Amen Clinics for brain health. Her extensive background in media and military life gives her a unique perspective on working with secondary trauma, chronic stress, and burnout.  She is the host of the globally top-rated podcast HIListically Speaking® and creator of the HUG it Out® Method, which reminds you to access self-healing through Humor, Understanding, and Gratitude and be a Pioneer Practitioner™of your own life. Connect with Hilary at hilaryrusso.com, on social @hilaryrusso, or on her Substack, The Brain Candy Blueprint.

    1h 3m
  4. Mind-Body Connection

    FEB 6

    Mind-Body Connection

    In this episode of the ICU Podcast, we explore the powerful relationship between the mind and body—and how that connection can be both disrupted and harnessed in life with a vestibular disorder. From the ways stress and anxiety can amplify dizziness to the grounding effects of mindfulness, movement, and self-compassion, we’ll discuss the science and lived experience behind mind-body healing. Through personal stories and expert insights, listeners will discover how cultivating awareness, patience, and inner balance can help restore a sense of control and resilience on the path toward recovery. Guest Bios Sandy Brunner describes herself as an awesome stay-at-home mom and an okay housewife. Pre-kid, she was a speech-language pathologist and blogger for Life Without Land Legs. Sandy started her vestibular journey with Mal de Debarquement Syndrome, or MdDS, on a trip to Europe in 2018, adding vestibular migraine, PPPD, and cervicogenic dizziness to her vestibular bingo card along the way. She was in VeDA’s first season of the Life Rebalanced Chronicles docuseries. When she’s not doing mom stuff or at the gym, she is planning parties, going on random adventures, organizing something, reading, or doing crafts.  Donna McArthur, DC has been a chiropractor for thirty years, sharing a wellness-based practice with her husband in the mountains of British Columbia. She provides patient-centered care aimed at restoring function to the neuro-musculoskeletal system, utilizing evidence-based therapies and drawing on her deep knowledge of biomechanical, neurological, and fascial approaches. Her work is grounded in a heart-centered, integrated philosophy of healing. Donna is passionate about offering people tools and choices that empower their own wellness—something she brings to her clinical practice, writing, and teaching. With a focus on general family practice, she has extensive training and experience supporting both pediatric and geriatric patients.  You can follow Donna on Substack.

    57 min
  5. JAN 9

    Vestibular Migraine

    Welcome to this episode of the ICU Podcast, where we shine a spotlight on the often-overlooked world of vestibular migraine, a condition that affects more than half of all migraine sufferers at some point yet remains frequently misdiagnosed. Vestibular migraine can cause not only headaches but also vertigo, dizziness, imbalance, and sensory sensitivities—making it a formidable challenge for both patients and clinicians. Today, we’re joined by two remarkable guests: a dedicated volunteer with the World Migraine Summit (taking place March 11 – 18) who brings lived experience and advocacy insight, and Dr. Brian Ward, a neurotologist at Johns Hopkins Medicine. Together, we’ll explore how lifestyle management, medication, and other targeted therapies can help restore balance and hope to those navigating vestibular migraine. Guest Bios Dr. Bryan Ward is a Neurotologist with Johns Hopkins University who specializes in treating inner ear and skull base disorders that cause dizziness, such as superior canal dehiscence syndrome, Meniere’s disease, and bilateral vestibulopathy. His research interests focus on magnetic resonance imaging (MRI) and interactions between strong magnetic fields and the inner ear. He also works with Dr. Charles Della Santina on the development of a vestibular implant. Natanya Mandel is a migraine coach, mindfulness facilitator, and passionate patient-advocate whose own journey with frequent migraine attacks and disruptive neurological symptoms inspired her to shift her career and support others living with migraine and chronic pain. Natanya has volunteered with groups like Migraine Canada and the Migraine World Summit, facilitates virtual support groups, and helps people navigate the challenges of chronic migraine with compassion and evidence-informed guidance. Migraine World Summit Natanya’s coaching

    44 min
  6. 2025-12-05

    Yoga for Balance

    In this episode of the ICU Podcast, we explore how yoga can be a powerful, complementary tool for improving balance in people with vestibular disorders. Vestibular conditions disrupt the delicate interplay between the inner ear, vision, and somatosensory systems, often leading to dizziness, instability, and compensatory stiffness. Yoga offers a gentle, embodied pathway to re-train balance by engaging controlled movement, focused breathing, and meditative awareness — all of which can help patients recalibrate their vestibular reflexes, reduce dizziness episodes, and restore coordination and confidence in movement. Speaker Bios Emma Rodgers is a certified yoga teacher, originally from the UK and now based in Melbourne, Australia. Emma's journey began after finding yoga and meditation incredibly beneficial for managing her own symptoms of Vestibular Migraine and PPPD, which led her to train as a teacher. She uses her personal experience to inform her teaching style, making it more accessible through safe, gentle practices. Denise Schneider is a physical therapist who has been practicing in outpatient orthopedics clinics for 23 years. During this time, she has furthered her education to receive a doctorate in physical therapy, a fellowship degree in differential diagnosis and manual therapy, a certificate in vestibular rehabilitation, and a certification in dry needling. She received her 200-hour yoga training certification in 2023. Since then, she has taught various classes and also utilizes this knowledge in her physical therapy practice. Denise is dedicated to providing the utmost patient experience by incorporating evidence-based practice and individualized care to include all aspects of one’s health and well-being. She is a proud ambassador of and contributor to VeDA. Resources Yoga for Balance article on the VeDA website.

    44 min
  7. 2025-11-07

    Pacing with a Vestibular Disorder

    In this episode of the ICU Podcast, we’re diving into the concept of pacing—a vital self-management strategy for people living with vestibular disorders. When dizziness, vertigo, brain fog, and fatigue are part of your daily reality, even routine activities can become overwhelming. We’ll explore how pacing helps individuals with vestibular dysfunction conserve energy, manage sensory overload, and create a more predictable rhythm in an often unpredictable life. Pacing isn’t about giving up—it’s about planning ahead, listening to your body, and protecting your vestibular system from being overstimulated. We’re joined by a patient who has learned to pace their days to avoid symptom flare-ups, and a healthcare professional who supports patients in integrating pacing into their treatment and rehabilitation plans. Guests: Tracey Franklin had just started a new job while recovering from a viral flu when she began experiencing fatigue, dizziness, and brain fog. A few months later, she went on sick leave, followed by disability. In 2018, she retired medically from her 30-year career as a publishing professional. Over the next six months, Tracey saw multiple doctors and underwent various tests and was diagnosed with Vestibular Migraine and Persistent Postural Perceptual Dizziness (PPPD). Along with ongoing VeDA support groups, vestibular rehab, cognitive behavioral therapy, and medical treatments, she manages these invisible disorders by getting adequate rest and pacing her commitments and activities. She hopes to build a bridge between the vestibular and medical communities, so others are diagnosed sooner. Tracey loves ice cream, writing, the beach, and snow. She lives with her husband of 21 years and their cat. She believes it’s her faith in God that continues to bless her with managing her conditions and having fewer symptomatic days. Steph Fowler is a Licensed Clinical Professional Counselor and Certified Alcohol and Drug Counselor (LCPC, CADC). She is also a chronically ill, disabled, and neurodivergent therapist, writer, consultant, and coach who has lived with Long COVID since early 2020. After her health, work, and life were dramatically changed by this condition, she shifted her business and rebranded as Misfit Mental Health. She now focuses on supporting people in the chronic illness, disability, and COVID Conscious communities - as well as their loved ones and care providers. Earlier this year, Steph was featured in TIME Magazine, sharing her personal and professional insights on navigating healthcare and medical gaslighting. When she's not depathologizing non-conformity, she enjoys taking care of her houseplants, building LEGOs, spending time with her partner and their cat Ziggy, and all things macabre. Check out Steph's pacing workshop and other resources here: https://linktr.ee/misfit.mental.health.

    1 hr

Ratings & Reviews

4.7
out of 5
3 Ratings

About

In the ICU ("I See You") podcast hosts Cynthia Ryan and Kimberly Warner explore the vestibular experience by facilitating conversations between vestibular patients and the health professionals who care for them. They invite patients to share their stories, and healthcare professionals to ask questions so they are equipped to care for, and truly see their patients. This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.

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