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ICU - "I See You" - Vestibular Conversations

The Vestibular Disorders Association (VeDA) & Unfixed Media

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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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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…
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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…
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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 …
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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…
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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 …
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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 w…
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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 lo…
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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 …
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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 …
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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 …
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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 durin…
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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 th…
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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 t…
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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 strug…
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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…
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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, howe…
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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 t…
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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 …
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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 unp…
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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 …
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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 …
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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. …
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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 …
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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 …
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Movement and exercise are two words that can be really triggering for people with chronic illnesses. You may have heard someone say to you “just exercise, you’ll feel better,” but when we take that advice from our doctors the opposite effect might happen. More often than not, picking up a new exercise routine can actually make you feel worse if you…
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Vestibular rehabilitation therapy, or VRT, is a specialized form of exercise-based therapy designed to alleviate both primary and secondary symptoms of vestibular disorders. VRT uses specific head, body, and eye exercises designed to retrain the brain to recognize and process signals from the inner ear and coordinate them with information from our …
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For many people with vertigo, dizziness, and imbalance it can take months or years to get an accurate diagnosis. Emergency room physicians rule out life-threatening conditions and refer patients to their primary care providers, who may be ill-equipped to diagnose vestibular problems or provide an appropriate specialist referral. As a result, people…
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Audiological testing can be an important step in helping doctors determine whether the inner ear is the source of a patient’s dizziness. However, if you’ve ever talked with someone who has been through the gamut of tests - it’s not exactly a picnic in the park. Many patients - already ill from symptoms and fearful of tests that can exacerbate them …
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Anyone who has ever experienced vestibular dysfunction will tell you, vestibular symptoms are hard to describe. It can be difficult to explain the difference between symptoms like vertigo, dizziness, imbalance, spinning, disequilibrium, and more. Factors like acute symptoms and anxiety can make it even harder to paint a clear picture for your healt…
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