ICU - "I See You" - Vestibular Conversations

Welcome to the ICU podcast, where we illuminate invisible chronic illnesses and the people who live with them. In this episode, we’re spotlighting Balance Awareness Week, an annual event hosted by the Vestibular Disorders Association each September. This global campaign raises awareness about the impact of vestibular disorders—conditions that affect balance, dizziness, and spatial orientation—and connects patients, caregivers, and healthcare professionals through education and advocacy. In this episode, we talk with Paul Morris, VeDA’s Development Director, about how people can get involved in Balance Awareness Week, as well as Christian Chabbert, a French neurophysiologist who engages...

In this episode, we’re diving into a crucial yet often overlooked part of vestibular recovery: sleep. If you’re dealing with vestibular dysfunction, getting high-quality sleep isn’t just a nice-to-have—it’s a vital part of healing. When you're well-rested, your body is better equipped to handle treatment and manage symptoms. On the flip side, sleep deprivation can actually trigger or worsen dizziness, imbalance, and other vestibular issues. In this episode, we’ll explore how developing strong sleep habits—from setting a consistent bedtime to managing light and noise in your room—can become a powerful tool in your recovery...

In this episode we explore the power of storytelling and the profound impact it can have on making sense of our lives. Our guests are a memoir expert and our very own co-host, Kimberly Warner. You don’t have to consider yourself a writer to gain something valuable from this conversation. We’ll delve into the stories that shape us, how we find meaning in them, and the transformative potential of sharing these stories with others.

Kimberly Warner is a film director, producer, author, and a medical school drop-out who traded prescriptions for cameras in pursuit of narr...

Persistent Postural Perceptual Dizziness. That’s a mouthful! No wonder we call it PPPD! This relatively new vestibular diagnosis helps explain why some people continue to experience vestibular symptoms when test results are normal. PPPD typically starts shortly after an event that causes acute vertigo, dizziness, or some other disruption of balance, but it may also occur for unknown reasons. PPPD causes dizziness without vertigo, and fluctuating unsteadiness provoked by environmental or social stimuli, such as crowded places. Some critics question whether this is a “garbage” diagnosis for people with unexplained vestibular-like symptoms. In a separate interview with Professor Jon St...

Did you know that vestibular disorders affect children as well as adults? There are increasing reports of vestibular deficits in children. One study suggests that as many as 1 in 5 children in the United States have problems with dizziness or balance. Pediatric vestibular disorders result in vertigo, gaze instability, delayed motor development, and problems with reading. These symptoms are difficult for anyone to cope with, but are especially challenging for children and their families. Pediatric vestibular healthcare specialists are hard to find, it can be difficult for a child to describe their symptoms, and delayed diagnosis can have devastating results...

In today’s episode of the ICU Podcast, we’re going to talk about brain fog. It kind of sounds like some sort of weather pattern. What is brain fog, and why do so many vestibular patients experience it? Some people describe it as forgetfulness, confusion, a lack of focus, difficulty concentrating or making decisions, or just a vague sense of blurry thinking, like your head is in the clouds. When the brain is dedicating a great deal of energy to maintaining equilibrium and staying steady, activities such as recalling details or short-term memory may become more difficult, and thin...

For many people who have a vestibular disorder, a trip to the grocery store can turn into a battle with dizziness. The bright lights, rows of shelves, patterns on the floor, and crowds of people can trigger symptoms such as dizziness, nausea, and light-headedness. Bending down or turning your head to scan for the items you need. All this can take a lot of energy to navigate. Visually induced dizziness is an umbrella term for a group of symptoms. It can also be referred to as visual vertigo, space and motion discomfort, supermarket syndrome or visual vestibular mismatch. Researchers...

In this episode we’re going to talk about silence. The silence that happens when you lose your hearing. Whether it comes on all of a sudden or gradually, losing your hearing is a life changer. It starts when you have to ask your friends and family to repeat what they just said. Eventually you stop asking, and you begin to feel separate, apart, not included in the conversation. Although there is no cure for hearing loss, fortunately, there are very effective tools and treatments that can help people remain engaged with the hearing world around them.

Ou...

In this episode of the ICU Podcast we’re going to talk about what happens when we lose function in our inner ear completely, when the vestibular system on both your right and your left sides is not working. Bilateral vestibular loss, also called hypofunction, can be devastating. It results in severe difficulty maintaining balance, especially when walking in the dark or on uneven surfaces, and a decrease in your ability to see clearly when moving your head. This can lead to an increased risk of falling, blurry vision, dizziness, imbalance, and can eventually lead to other types of ph...

The year end holidays are probably the busiest time of year for social events. Family gatherings and work parties, special church services, and cocktail parties with friends. These are meant to be fun and festive, a time to eat, drink, and be merry. But events can often be overwhelming for people with vestibular disorders, with bright lights and lots of people talking loudly and all at once. How can you take part in the joy of the season while also taking care of yourself? Today we’re going to talk to a professional event planner whose job is to ma...

Living with and supporting someone with a chronic illness can be challenging. First off, we'd like to give a big shout out to all the spouses, parents, friends, and other “care partners” out there who selflessly adapt their lives around the restrictions imposed by their loved one’s vestibular illness. Aborted family events, staying home instead of going out for dinner and a movie, and lots of medical appointments are just some of the complications you might face. On top of that, there is the worry - will your loved one ever get better? The guilt - could you be doi...

Mal de Debarquement Syndrome is a central vestibular disorder that typically arises following exposure to passive motion (i.e. boat, airplane, automobile, train, etc.). The characteristic symptom of MdDS is a constant sensation of rocking, swaying, and/or bobbing. On this episode of the ICU - "I See You" podcast, we connect with one of the leading researchers in MdDS and an MdDS patient who runs a support group!

This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media. https://unfixedmedia.com/

About the Guests:
Dr. Yoon Hee Cha is...

Traveling with a vestibular illness can feel impossible and problematic. Obstacles like rapid altitude changes, visual disturbances, patterned airport carpets, and passive motion can amplify symptoms. Many people with vestibular dysfunction need accommodations or restrictions to prevent symptoms, attacks, or flare-ups. Having a vestibular disorder should not prevent someone from traveling. On this episode of the ICU - "I See You" podcast, we talk with two vestibular patients who are also professional travelers!

This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media. https://unfixedmedia.com/

About the Guests:

...

Devices—can’t live with them, can’t live without them. When I was in the first two years of my vestibular disorder I remember longing to turn back the clock to the 1800’s. Televisions, computer screens, even my phone sent my nervous system reeling so it took me years to return to modern communication. And because I wasn’t connecting digitally during that time, I had no idea others experienced the same problem as me and became very isolated. When we are symptomatic, trying to scroll through an article on the phone or watch a movie on a tablet can...

As you know, dealing with vestibular disorders can take a toll on a person’s mental well-being. Feelings of stress, sadness, and uncertainty about the future are common, and these emotional responses can manifest as anxiety. Anxiety and vestibular symptoms can create a vicious cycle where one exacerbates the other, and it’s ever so hard to break that cycle. Addressing anxiety in people with vestibular dysfunction often involves a multifaceted approach that may include vestibular rehabilitation therapy, cognitive-behavioral therapy (CBT), relaxation techniques, and medications if necessary. By addressing both the physical symptoms and the associated anxiety, people can bett...

Caring for oneself with a vestibular disorder is not easy—add infants, children and teens into the mix and the spectrum of experience can span from feeling downright impossible to uniquely rewarding.  In honor of Mother’s Day this month and our community of mothers with vestibular disorders, this episode of the ICU - "I See You" podcast dives into the multi-layered experiences of mothering “dizzy.” We are joined by vestibular patients and mothers, Kayla McCain and Marissa Aldrete to discuss considerations in family planning, pregnancy and vestibular disorders, managing self-care, and how to include family in your vestibular experienc...

You never thought it would happen. You thought you would work until retirement or beyond, but then along came your vestibular disorder. Now, focusing on a computer screen is a challenge, you can’t drive, walking is a safety hazard, and your concentration is not what it used to be. Getting through a workday is exhausting and frustrating as you struggle to complete tasks that used to be easy for you. Many people who suffer from chronic vestibular disorders find it difficult to continue working. 

In this episode of the ICU - I See You podcast, we’re go...

Each person’s experience of the menopause transition is unique. Changes affect sleep, mood, mental acuity, and subsequently, you guessed it, our vestibular system. Reports of the effect women’s hormones play on their vestibular systems are common, but symptoms vary. During different hormonal periods, some women report a new onset of symptoms, while others report a worsening of existing symptoms, and some even report improvement. 

In this episode of the ICU - "I See You" podcast, hosts are joined by Dr. Maja Scrakic and vestibular patient Nina Coslov who discuss personal experiences and research on this impor...

Primary care practitioners are often the first healthcare professionals we seek when we feel dizzy, disoriented, or not quite right. Their role is to take a medical history and assess whether the person can be treated immediately with medication or therapy, or whether they need to be referred to a specialist for further testing. One challenge, however, is that by definition, primary care practitioners are generalists and may not know enough about the signs and symptoms of vestibular impairment to triage patients appropriately. The good news is that there are Advanced Practice Providers such as Nurse Practitioners and Physician...

We’ve all messed around with art at some point in our lives and with perfectionists at bay, it can be playful, relaxing and revitalizing. But how often do we pick up a paintbrush because it can also be medicine? Personally, when I was in the deepest terrors of MdDS, needle sculpting with wool became a lifeline, and I know I’m not alone when I say that art can soothe frayed nerves, give us a sense of purpose, and also help the quieter subconscious self within have a voice.

In this episode of the ICU - "I Se...

For many people with vestibular disorders, what they eat and drink can trigger dizziness, vertigo, nausea, and other symptoms. The good news is that certain dietary modifications can help you manage your symptoms. Figuring out what to eliminate from your diet can be tricky, though. Not only are triggers different for each person, but you also have to be aware of maintaining a balanced diet, and you want it to taste good too. In this episode hosts Cynthia Ryan and Kimberly Warner are joined by guests Dr. Jessica Lieffers, RD and Alicia Wolf of the Dizzy Cook to discuss...

In the newest episode of the ICU - "I See You" podcast, guests Jen Warner and Joy Mohr join the hosts to discuss how having a vestibular disorder affects personal relationships. It can be hard to relate to another person’s experience. This is especially true for people struggling with vestibular impairment because the symptoms are invisible and unpredictable. But, these disorders affect not only the people who are afflicted but their families as well. This episode discusses how to educate others about our experience and communicate our needs. 

This podcast is a co-production of the Vestibular Dis...

In the newest episode of the ICU - "I See You" podcast, guests Dr. Yonit Arthur and Melinda Reed join the hosts to dive into the unnerving vestibular symptom often referred to as Dissociation, Depersonalization and Derealization. These experiences are characterized by a sense of unreality and detachment from one’s surroundings, body, emotions, and self. These experiences are characterized by a sense of unreality and detachment from one’s surroundings, body, emotions and self. Some patients report feeling “strange and not in control of themselves” or “being spacey and out-of-body.” In other words, a very scary occurrence to have on top...

In this episode of the ICU - "I See You" podcast, hosts and guests discuss complementary and alternative approaches to supporting your wellness as a person with vestibular dysfunction. If you’re like most people, when you aren’t feeling well you go to see your medical doctor, and hopefully they, in conjunction with other members of your healthcare team, create a treatment plan based on conventional medical practices. What many people don’t know is that when you support your overall wellness using complementary and alternative modalities, you are physically and mentally better able to cope with everyday stress...

Vestibular disorders come with horrible symptoms, including vertigo, dizziness, nausea, and brain fog, to mention a few. It’s no wonder we all want a “miracle pill." Unfortunately, no one treatment works for every person.

In this episode of the ICU Podcast, the hosts talk to vestibular patient Lily Carillo who has been on that road, as well as Dr. Nicholas Hac, MD who explains how he determines what the appropriate medication is for his patients.

If you are interested in joining a VeDA support group you can learn more at https://vestibular.org/article/copi...

A support group provides a unique and critical service: acceptance. This forum allows individuals to ask questions and to learn in a non-judgmental and safe environment. Participants know that everyone attending the meeting understands and has compassion for the functional difficulties of getting through each day. As a result, less frustration and energy are spent on proving or defining limitations. More energy is available for appreciating the character and companionship offered by others, and recognizing personal self-worth. We know that support groups play an important role in recovering from vestibular dysfunction and discovering your ‘new normal.’ 

In this...

Most people have probably heard a high-pitched whining noise in their ears at least once. It comes and then it goes, but it’s temporary. However, for some people, that ringing, hissing, whistling, buzzing, or clicking sound is constant. That noise that isn’t a noise is called tinnitus, and it’s generally caused by damage to the auditory system.

In this episode of the ICU ("I See You") podcast, the discussion explores the connection between tinnitus and hearing loss, common concerns, and possible treatments and coping strategies. Hosts Cynthia Ryan (VeDA Executive Director) and Kimberly Warner (Unfixe...