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.

Our guests are:

Lynn Johnson: Lynn's life became unbalanced in 2015. She had been feeling off, and out of the blue woke up with imbalance and loud tinnitus (ringing) in her right ear. As days passed, her symptoms continued to get worse. Five months and four doctors later, she was diagnosed with Autoimmune Inner Ear Disease (AIED) and Bilateral Vestibular Hypofunction. Her symptoms include bilateral profound deafness, tinnitus, oscillopsia (jumping vision), and imbalance. Lynn says that if she had been given the correct diagnosis in the beginning, there might have been a chance to save her hearing. Lynn is a VeDA Ambassador and co-leader of a support group for vestibular patients with hearing loss.

Molly Smeal: Dr. Molly Smeal is a clinical audiologist in the Head and Neck Section of the Integrated Surgical Institute at the Cleveland Clinic, and is an adjunct professor for the Northeast Ohio AuD Consortium. Dr. Smeal specializes in diagnostics and auditory implantable devices. She also participates in clinical research related to implantable devices. In her career, she has led and participated in several initiatives focused on clinical quality control. She is a published author and invited national and international presenter. Dr. Smeal is currently a participant of the American Cochlear Implant Alliance.

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 physical deconditioning. How does a person cope when their internal gyroscope is essentially turned off, and what medical miracles are available to help them?

Our guests today are Dr. Charley Della Santina, one of the foremost researchers in this area, and Donna McKinney, a vestibular patient with bilateral vestibular loss.

Guest Bios
Dr. Charles Della Santina, MD, PhD
Dr. Charley Della Santina specializes in surgery for treatment of otosclerosis, acoustic neuroma, and other problems that cause hearing loss or abnormal vestibular sensation. He is a neurophysiologist with PhDs in biomedical and electrical engineering. Dr. Della Santina founded and directs the Johns Hopkins Vestibular NeuroEngineering Lab. His research group focuses on developing a vestibular implant to treat chronic unsteadiness and oscillopsia caused by gentamicin ototoxicity and other causes of bilateral vestibular hypofunction.

Donna McKinney
Donna McKinney is a mom of three and a proud grandma. Since her diagnosis of bilateral vestibular loss in 2014 she has had to retire from her physically active career as a youth and senior fitness director. She has become a certified health coach and a diabetes prevention coach and is hoping to return to work on a part-time basis.

Donna enjoys cooking, spending time with her family, and going for long rides and day trips with her partner, Alec, who has been by her side through every dizzying step of this diagnosis.

In May of last year Donna received the multichannel vestibular implant as part of a study at Johns Hopkins University.

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 make large, busy events inclusive, as well as a vestibular patient, who has developed a strategy for being able to enjoy family gatherings.

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:
Carol Rexroad Cannon lives with her husband Robert in Hendersonville, North Carolina. They worked together as United Methodist pastors for 35 years before retiring in 2021. Carol was struck with severe vertigo due to vestibular neuritis in 2016, which has since developed into PPPD. Vestibular rehab therapy has helped restore her balance. Carol enjoys hiking mountain trails near her home, visiting with family, and volunteering in the church and community to work for justice, peace, and wholeness.

Erika LaDousa has over 20 years of event planning experience, nine of those as the owner of LDS Events, an event planning company that focuses solely on supporting non-profit organizations. Erika also works as a fundraising consultant with Minneapolis-based Fladeboe Advancement. Erika lives in Edina, Minnesota with her husband and two daughters. She loves to travel, volunteer, and spend time at their family cabin in Wisconsin.

Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVisible #Vertigo #Vestibular #Tinnitus #Dizzy

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 doing more to reduce your loved one’s burden? And, let’s face it, the exhaustion - when can you take time to care for yourself? Care partners often spend so much time and energy focused on their loved one’s needs, they often sacrifice their own. In this episode of the ICU - "I See You" podcast, we’d like to shine the light on these unsung heroes, and offer them a moment to reflect on what self-care might look like for them.

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

If you are or know a care partner who has been along side their loved one in their vestibular journey, please invite them to join VeDA's "Supporting Loved Ones" support group at https://vestibular.org/members/slovedonessggmail-com/

About the Guests:
Katie Willard Virant is a psychotherapist living in St. Louis. She sees clients in therapy and writes for Psychology Today about chronic illness. She is a graduate of the Brown School of Social Work at Washington University in St. Louis and of the St. Louis Psychoanalytic Institute’s Advanced Psychodynamic Psychotherapy program. She works with adults, adolescents and children on a variety of issues, including loss and grief, life transitions, and living with chronic illness.

Christina Mullins: Christina has been married for seven years and is a mother to two children, ages 7 and 5. She enjoys hiking, skiing, traveling, and cherishing moments of fun with her kids. Four years ago, her husband was diagnosed with Ménière's disease, and since then, he has also been diagnosed with Ankylosing Spondylitis, vestibular migraines, and Persistent Postural-Perceptual Dizziness (PPPD). Despite these challenges, Christina remains committed to her family and her passion for helping others. Professionally, she is a licensed clinical social worker in a middle school setting, where she dedicates her career to supporting students and their well-being. Additionally, she has started a blog called Sunshine Parenting in Chronic Weather, where she shares her experiences and insights on being a spouse and parent while navigating the complexities of chronic illness.

Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVisible #Vertigo #Vestibular #Tinnitus #Dizzy

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 an Associate Professor in the Department of Neurology with subspecialty training in neurotology. She joined the faculty of the department in July 2019 to pursue research on the application of non-invasive brain stimulation methods on the modulation of motion perception, treatment of vertigo, and enhancement of gait and balance. She developed the first neuromodulation-based clinical trials in mal de debarquement syndrome (MdDS). Her research revealed the importance of brain regions not traditionally thought to be part of the vestibular system in the creation of motion perception. Besides research on the use of non-invasive brain stimulation tools such as transcranial alternating current stimulation and transcranial magnetic stimulation, Dr. Cha sees patients in the neurology clinic with a focus on chronic headache, vertigo, and gait dysfunction.

Nancy Gray has lived with 24/7 symptoms of MdDS since 2019 after disembarking from an Atlantic Ocean crossing. After feeling like she was in continuous motion for three weeks, she sought medical help. In 2021, she worked with Dr. Sergei Yakushin at Mt. Sinai for a week of treatment, which improved her symptoms. Nancy continues to travel by boat, embracing her condition. Her hobbies include travel, playing the hammered dulcimer, watercolor, collage, writing, photography, genealogy research, and gardening. She has adapted her activities to continue enjoying them despite MdDS. Nancy also leads an MdDS support group, offering valuable insights and advice to others.

Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVisible #Vertigo #Vestibular #Tinnitus #Dizzy

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:

Arthur Wooten is an award-winning playwright and novelist who works for PASSPORT magazine as a feature travel writer. In 2005, Arthur developed a life-changing diagnosis of bilateral vestibular loss, and, to this day, he still experiences symptoms 24/7. In 2011 Arthur wanted to share the devastating yet surprisingly encouraging aspects of having a vestibular disorder, which resulted in his fictional memoir, DIZZY. The characters are fictional but the medical storyline is all Arthur's.

Cynthia Connell is a travel agent with Personal Travel Management in Vancouver, Canada and a certified Spanish to English translator. She got her start in the travel industry over 20 years ago as a tour leader, taking small groups of international travelers around Mexico and Central America on 2-3 week trips. She specializes in adventure travel and has set her wandering feet on all seven continents. Her journey as a vestibular patient began in 2019 with a diagnosis of vestibular neuritis, which moved on to PPPD and possible vestibular migraine.

Hosts:

Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVisible #Vertigo #Vestibular #Tinnitus #Dizzy

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 be torture. Attending a Zoom meeting with multiple people talking and moving can be unbearable. Even texting back and forth can be dizzying. But staying connected is an important part of our recovery, and this often is through virtual mediums, so it is important to use every tool available to improve our ability to function while using a digital device. Even small changes can have a big impact. In this episode of the ICU - "I See You" podcast, we take some time to explore these challenges and discuss a multitude of ways to make our digital companions more user-friendly.

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

About the Guests:

Dr. Cheryl Berger-Israeloff has more than 20 years experience practicing optometry and focuses her practice on a subspecialty called neuro-visual optometry, which deals with the diagnosis and treatment of vision-based problems commonly found in the brain-injured population. Dr. Israeloff is a pioneer in the optometric treatment of conditions that cause blurred vision, motion sickness, and headaches. She graduated from Cornell University and SUNY College of Optometry.

Alexandra Biss has had dizzy symptoms since she was in her teens, but she officially started her vestibular journey during the start of the COVID pandemic in 2020 when she completely lost her balance and was unable to walk without support. She was ultimately diagnosed with chronic vestibular migraines that stripped her independence and stability. After multiple doctor visits she finally met a neurologist who was a vestibular specialist. While her symptoms are still prominent, through medication and vestibular therapy she has begun getting back on track. She currently works as an underwriting analyst at an insurance firm in Canada and has started running, which is now a central passion of hers. On the days she was bed bound, never once did she think she would be able to take part in any sport again. Her newly-found love for running has allowed her to regain stability and confidence. She has completed two half marathons, both raising money for VeDA, and is currently preparing for her first full marathon this coming May.

Hosts:

Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVi

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 better manage their condition and improve their quality of life. Today we’re going to be talking with psychologist, Joanna Wolfson, and vestibular patient, Lauren Colella, about why anxiety is so prevalent among people with vestibular dysfunction, and what are some practical things you can do to manage it.

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

About the Guests:

Joanna Wolfson, PhD, ABPP is a senior psychologist at Rusk Rehabilitation, NYU Langone Health, and Clinical Assistant Professor of Rehabilitation Medicine at the NYU Grossman School of Medicine. She holds a doctorate in Clinical Psychology from Fairleigh Dickinson University, completed her internship at NYU Rusk, and did a postdoctoral fellowship at the Manhattan VA in Health Psychology and Primary Care. She is board certified in clinical health psychology. Dr. Wolfson provides individual and group psychotherapy to patients with a wide range of medical presentations, including vestibular conditions. She co-leads a vestibular stress management group, which has been running for the past 8 years. She also supervises interns in the field of health psychology and presents on topics including integrated healthcare, motivational interviewing, and health anxiety.

Stefanie Adams suffered multiple traumatic brain injuries and had her third concussion in 2017. As soon as she hit her head she felt off-balance and started to sway. Over the next year she developed terrible migraines and dizziness. Eventually the migraines left, but the dizziness stayed. A year later she discovered that she had a perilymph fistula (a hole in the membrane separating the middle and inner ears). When she got the flu, she blew her nose and the room started to spin. She’s had surgery to repair the fistula and is now a VeDA Ambassador and vestibular advocate. In her professional life, Stefanie is an Account Manager for a healthcare communications agency.

Hosts:

Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVisible #Vertigo #Vestibular #Tinnitus #Dizzy #Balance