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 Stone we learn that this is not the case, and indeed, that PPPD can co-exist with other vestibular disorders. In this episode of the ICU Podcast we’re going to talk with a patient who struggles with PPPD and a physical therapist who treats this complex condition.

Speaker Bios:

Susan Blount is a college professor, publishing and media executive, and certified health and wellness coach who has dedicated her career to education and well-being. After developing Persistent Postural Perceptual Dizziness (PPPD) following a trip to Alaska, she faced life-changing challenges. Yet, through vestibular rehab, cognitive behavioral therapy, and a commitment to strength training, she has redefined what it means to live fully. Now, Susan empowers others with the message that being both healthy and chronically ill is possible. With the support of the VeDA community, she continues to navigate life with resilience, purpose, and joy.

Dr. Megan Daly is an experienced Vestibular Physical Therapist and Health Coach.  She has her own physical therapy and coaching practice to help people address the root cause of their symptoms, navigate the healthcare system, and modify their lifestyle. She also runs Dizzy Coaches, a vestibular mentoring program for clinicians of all levels.  She helps patients with dizziness, migraines, concussions, and balance issues manage their conditions so they can have fewer dizzy days. She has experienced many vestibular conditions personally and brings this empathy to all her patient interactions.

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 this episode of the ICU Podcast we’re going to talk to a pediatric vestibular specialist and the mother of a young child who bravely battled vertigo, hearing loss, and a host of other vestibular symptoms.

Guests:

Andi Gilkey - Andi is a Licensed Clinical Social Worker and the proud mom of a

vestibular warrior. Her son is an amazing 11-year-old who loves baseball, music, video games and his friends. He has bilateral sensorineural hearing loss, a unilateral Enlarged Vestibular Aqueduct, childhood vertigo, PPPD and vestibular migraines. His hearing journey has been well supported by an incredible team, but his vestibular journey has been one of the biggest challenges Andi has encountered as a mother. She says it felt like an endless roller coaster full of ups and downs since he was a toddler. Through hard work and the creation of an incredible vestibular team, she is proud to say that her son has been in remission of vestibular symptoms for 10 months. Her ongoing goal is to share her family’s story with others to provide hope and support to the vestibular community.

Jennifer Braswell-Christy, PT, PhD, FAPTA: Dr. Jennifer Christy is a Professor in the Department of Physical Therapy at The University of Alabama at Birmingham. Her primary area of research is in the development of innovative intervention methods to improve gaze stability and balance in children with vestibular-related impairments. Related to this area of research, Dr. Christy teaches numerous continuing education courses in the U.S. and abroad.

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 thinking might seem slow. First, I want you to know that this is NORMAL. Today we’ll talk to a patient who knows about brain fog all too well, and a doctor who has helped thousands of women learn to manage this frustrating symptom.

Dr. Kathleen Jordan is the Chief Medical Officer at Midi, a virtual care clinic for women going through menopause and perimenopause. She has personally experienced the struggle to find a healthcare provider she can consider a partner in her journey toward wellness. She created Midi to put high-quality, patient-centered care within reach for all women at midlife. As an expert in women’s health, Dr. Jordan is very familiar with brain fog, otherwise known as “menopause brain”, and has some great suggestions for how to recognize and manage it.

Ann Walder has struggled with migraines all her life. The word Vestibular Migraine entered her vocabulary after an illness that damaged her inner ears when she was 48. Early on Ann says her brain fog was fierce. She was blessed to connect with the vestibular community and find qualified healthcare providers early in her journey. Her family has been very supportive, and she’s found many friends among VeDA’s Ambassadors. She currently works as an activity specialist with the elderly and says that helping others brings her true happiness.

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 think it is caused by a conflict between different parts of the brain’s balance system. In this episode of the ICU podcast, we’re going to talk to Elizabeth, who struggles with visual disturbances as a result of her vestibular disorder, and Dr. Morgan Kriz, a physical therapist who specializes in treating this condition.

Elizabeth Schneider has been living with a Vestibular Disorder for 21 years. She was first diagnosed at age 36, when she lost her balance and experienced severe visual disturbances. She had to retire from her job as a Registered Nurse because she could no longer work due to her vestibular symptoms. Elizabeth knows what it’s like to struggle with career, money problems, and family stress, especially when you first get sick. Like many of you, she had to navigate through the medical system to get help, which is a taxing effort at best. She decided to become a VeDA Ambassador to bring awareness to this diagnosis and to help others get the help they need!

Dr. Morgan Kriz has been practicing vestibular physical therapy for more than 10 years. She understands the journey that many vestibular warriors endure to get a proper diagnosis, obtain a supportive care team, and feel like they are on the right track to get their lives back. She is co-owner of Vestibular Therapy Specialists, with clinics in Seattle, WA and Bend, OR, where she resides with her family. She is also a consultant for Blue Marble Gaming Company, which is developing online home programs and protocols for Vestibular Rehabilitation. She’s a content creator and presenter for Vestibular IQ, a Continuing Education Platform for healthcare providers, and the volunteer director for a support group series called “Boost Your Brain’s Balance.”

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