ICU - "I See You" - Vestibular Conversations

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, a...

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...

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 ...

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 grou...

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...

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 clear...

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 ...

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...

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!

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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 should not prevent someone from traveling. On this episode of the ICU - "I See Y...

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 ...

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 m...

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 vestib...

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 chron...

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. 

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 kn...

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 quiet...

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 thi...

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 afflict...