Eight years ago, I was diagnosed with Autoimmune Inner Ear Disease, which has caused bilateral deafness and vestibular hypofunction. It has left me deaf, off balance, dizzy, and with oscillopsia (jumping vision). I have these symptoms 24/7. Living with a vestibular disorder has been devastating, leaving me with feelings of fear, helplessness, loneliness, disappointment, and depression. I became sad and withdrawn. I couldn’t work, drive, or complete daily activities. I couldn’t even walk. The safest place for me was to lay still in bed. I stopped moving. I even stopped dancing, something that has been important to me my entire life. After two rounds of vestibular rehabilitation therapy, my progress was very slow. You must continue your daily exercise and “keep moving,” my therapist said. At home I did my exercises and slowly rode my exercise bike for movement, but it was a chore. I was still wobbly and sad. […]
Jeffrey D. Sharon, MD It’s hard not to get frustrated with the current state of vestibular medicine. As anyone who has suffered from a vestibular problem will attest, there are inefficiencies and errors in the diagnosis of different vestibular ailments. One doctor might conclude you have vertigo, whereas a second diagnoses labyrinthitis, and then a third is of the opinion that you have atypical migraines. Furthermore, many treatments are unproven. Even at the best clinics in the world, patients are told to try a medication for several months and if that doesn’t work then they try a second medication, and then a third, and at some point years can go by without any forward progress. Complicating matters further, some diseases are not understood. Nobody knows what causes Meniere’s disease. How can you treat a disease that you fundamentally don’t understand? Whenever we are faced with more questions than answers, the […]
Life Rebalanced Live (LRL) Conference, Past and Present Balancing Act Rehab Provides Funding for LRL VeDA would like to give a big shout out to Drs. Abbie Ross and Danielle Tolman with Balancing Act Rehabilitation for sponsoring Life Rebalanced Live (LRL) 2024. Thanks to their generous support, this year’s event will feature some of the best expert speakers in the global vestibular community, and patient panels sharing their lived experience with these debilitating disorders. History of LRL LRL was born when Danielle and VeDA’s Board of Directors attended the 2nd Annual Vestibular Disorders Conference hosted by vestibular patient, Jim Hainlen in collaboration with the University of Minnesota Department of Otolaryngology in Minneapolis, MN, September 28, 2019. “I was so inspired by the amazing information that was shared and the connections built during this one day event, I knew VeDA needed to help continue this new tradition,” says Danielle. In 2020 […]
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ICU – “I SEE YOU” PODCAST Vestibular Healthcare From Nurse Practitioners & Physician Assistants LISTEN NOW Available wherever you get your podcasts. APPLE PODCASTS SPOTIFY YOUTUBE 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 know enough about the signs and symptoms of vestibular impairment to triage patients appropriately. The good news is that there are Advanced Practice Providers such as Nurse Practitioners and Physician Assistants who specialize in otolaryngology that can serve as a first point of contact to help dizzy patients get on the road to recovery more […]
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Supporting Vestibular Research Each year VeDA partners with professional associations that serve the vestibular community to support clinical research that improves outcomes for vestibular patients through travel awards to vestibular researchers who are sharing their important research findings at vestibular healthcare conferences. We are pleased to announce that Evalena Behr, AuD from the Cleveland Clinic has been awarded for her research Referral Pathways for Dizziness and Vertigo: Where Should the Patient Go? Dr. Behr will be presenting her research at the American Balance Society Annual Meeting. Below are the three research presentations that were considered for the grant. Referral Pathways for Dizziness and Vertigo: Where Should the Patient Go? Author: Evalena Behr, AuD, Cleveland Clinic Summary: Patients with dizziness complaints are commonly referred to vestibular rehabilitation to manage symptoms. Vestibular therapy is best practice in cases of Benign Paroxysmal Positional Vertigo (BPPV); however, if the true etiology or confirmation of […]
Exploring New Year’s Resolutions Suggested Topic for Vestibular Support Groups Written by VeDA Ambassador Samantha @concussedfullydizzy Many people celebrate the New Year by setting goals or resolutions. However, for those with vestibular challenges and unpredictable health, this type of activity may bring on feelings of stress, sadness, or even frustration. In today’s support group plan, we will explore the SMARTER goal-setting technique, which gives space for vestibular patients to modify their goals throughout the year. We will also discuss how people feel about setting new year’s resolution goals. Some of you might have heard about the SMART goal-setting technique. It is used by many business professionals for setting yearly goals, personal trainers for fitness goals, and even some practitioners for helping patients meet health goals. From my lived experience, I felt limited by the SMART goal-setting technique, so when I became a people leader at my organization, I started to […]
By Christine Strange, AuD Motorist Disorientation Syndrome(1) (MDS) also referred to as Motorist’s Vestibular Disorientation Syndrome (2) are terms proposed to describe spatial disorientation (SD) specifically experienced when driving an automobile. Spatial awareness is primarily the result of the integration of proprioception (allows us to perceive the position and movement of our body parts) as well as the visual and vestibular systems. SD can occur due to impairment in one or more of these systems or in the complex processes that synthesize these sensory inputs. The activity of driving or flying introduces elements that exceed natural physical activities, such as increased speed of motion, increased speeds of changing visual environment and alterations of proprioceptive cues and these elements can induce or exacerbate SD in individuals with or without defined vestibular disorder (3,4). SD associated with flying has been extensively studied and the effects on the normal vestibular system and associated misperceptions […]
Review by Kaitlin Ryan, AuD In 2017, a consensus document of the committee for the Classification of Vestibular Disorders (ICVD) of the Bárány Society was published officially outlining the diagnostic criteria for Persistent-Postural Perceptual Dizziness (PPPD). Official diagnostic criteria include elements of several previously described perceptual phenomena dating back to the 19th century. In the late 1800’s, German physicians documented descriptions of spatial disorientation in busy environments (Platzschwindel – vertigo in a plaza/square)1, and others focused on the psychological consequences of this disorientation (Platzangst – fear of the plaza/square)1. Drs. Katherina Hüfner and Barbara Sperner-Unterweger produced a commentary in 2023 outlining the diagnostic criteria for PPPD in a psychosomatic context compared to other conditions that manifest similarly. Dr. Jeffrey Staab, the chair of the classification committee of the Barany Society and one of the first to define PPPD, responded to their commentary. Hüfner and Sperner-Unterweger primarily take issue with the […]
How Braxton Overcame His Dizziness to Keep Playing Hockey “I really don’t know how I was able to play hockey,” remarks Braxton. He is a college aged hockey player, but he has an added challenge that the other players don’t. Braxton also lives with vestibular dysfunction. Growing Up Dizzy Braxton grew up on the ice. He learned to ice skate when he was only four years old. But it wasn’t long after he started skating that his dizzy spells began. By the time Braxton was in the 5th grade, he had seen several specialists and was diagnosed with what they thought at the time might be Benign Paroxysmal Positional Vertigo. As a young hockey player, he experienced dizzy attacks that prevented him from practicing or participating in games. Braxton recalls “There were a few times when I got really dizzy on the ice, that was when my anxiety with the […]
2023 brought a host of great victories and great challenges. But through it all, our community of donors and volunteers made it possible to make progress on the most import vestibular issues, provide ongoing support to people who are dizzy, and overcome a budget shortfall that threatened to cut VeDA’s vital services. Below is a letter addressed to VeDA’s generous donors regarding VeDA’s financial situation, and an overview of the accomplishments that VeDA’s donors and volunteers made possible in 2023. Dear Friend, I want to update you about VeDA’s financial situation. You may have seen the messages I sent at the end of 2023 addressing VeDA’s budget shortfall. I am pleased to tell you that VeDA finished 2023 with enough funding to avoid cutting services. That is because of the generosity of people like you! As a donor to the Vestibular Disorders Association, you provide ongoing support to people who […]