ICU – “I See You” Podcast
Latest Research and Treatment for Mal de Debarquement Syndrome
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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 researchers in MdDS and an MdDS patient who runs a support group!
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 for modulating motion perception, treating vertigo, and enhancing 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 considered part of the vestibular system in the creation of motion perception. Besides researching 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, focusing on chronic headaches, 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 traveling, playing the hammered dulcimer, watercolor painting, 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/
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
Summary
The podcast, hosted by Kimberly Warner and Cynthia Ryan, delves into the complex and often misunderstood vestibular disorder known as Mal de Debarquement Syndrome (MdDS).
The episode features two key guests: Dr. Yoon Hee Cha, a leading researcher in the field, and Nancy Gray, an MdDS patient who has learned to live with the condition.
MdDS is characterized by a persistent sensation of rocking, swaying, or bobbing that typically occurs after exposure to passive motion, such as boat or airplane travel. However, some patients, like Kimberly and Nancy, develop symptoms without an apparent motion trigger. The syndrome can significantly impact daily life, causing balance issues, anxiety, and cognitive challenges.
Nancy Gray shared her personal journey, which began after she crossed the Atlantic Ocean. Initially experiencing the typical post-travel motion sensation, her symptoms persisted beyond the expected few weeks. After consulting multiple healthcare professionals, she was diagnosed with MdDS by an ENT who had previously experienced the condition himself. Her treatment journey included various approaches, including medications, vestibular rehabilitation, and a specialized treatment at Mount Sinai under Dr. Sergey Yakushin.
Dr. Cha’s research has been groundbreaking in understanding MdDS. She discovered that the condition involves more than just the traditional vestibular system. Her work explores the complex interactions between visual systems, brain networks, and vascular compression. Notably, she found that the brain’s motion perception involves multiple regions, including the entorhinal cortex, which acts like the brain’s GPS system. A significant breakthrough in Dr. Cha’s research consists of the role of the venous system. She identified that MdDS patients often experience vascular compressions in three key areas: the first cervical vertebra, the mid-neck under the sternocleidomastoid muscle, and the thoracic outlet. These compressions can cause blood to shunt to different parts of the brain and body, potentially explaining symptoms like vertigo, tinnitus, and cognitive issues.
Nancy’s approach to managing MdDS is particularly inspiring. She developed coping mechanisms for challenging situations, such as using visualization techniques in the shower (imagining she’s surfing) and focusing on activities rather than her symptoms. She continues to travel and pursue her hobbies, using a walker for support and maintaining a positive, determined attitude.
The podcast highlights the importance of understanding MdDS as more than just a simple vestibular disorder. It’s a complex condition that involves multiple body systems and can significantly impact a patient’s quality of life. Dr. Cha emphasizes the need for a holistic approach, including neck physical therapy, posture correction, and potentially more invasive treatments like neurotoxin injections or surgical decompression. Both Kimberly and Nancy stress the importance of community support and not letting the condition define one’s life. Nancy has even started a support group for MdDS patients, providing hope and practical advice for those struggling with the syndrome.
The conversation ends with a message of hope and a call for ongoing research. Dr. Cha encourages patients to collaborate closely with their healthcare providers and to stay receptive to new insights about the condition. For those interested in investigating potential vascular compressions, she recommends consulting with a doctor familiar with her research protocol.
This podcast episode offers a comprehensive and compassionate look at Mal de Debarquement Syndrome, bridging the gap between patient experience and medical research, and providing insight into a often-misunderstood vestibular disorder.
A full transcript is available on YouTube (scroll below the description and click “Show Transcript”).
