Vestibular Patient Journey: Insights From Vestibular Disorders Association (VeDA) Registry
Vestibular disorders — conditions that affect the inner ear and brain systems responsible for balance — can be among the most frustrating and life-altering health challenges a person faces. People with vestibular disorders often live with persistent vertigo (a spinning sensation), unsteadiness, imbalance, and dizziness that interfere with everyday activities such as walking, working, driving, or even standing. Despite how common and disabling these symptoms are, vestibular conditions are notoriously difficult to diagnose and treat, in part because they can appear so differently from person to person and because traditional clinical research has not always reflected patients’ real-world experiences. To help fill that gap, the Vestibular Disorders Association (VeDA) launched an online Patient Registry to gather information directly from people who live with vestibular disorders — their symptoms, diagnostic journeys, treatments, and quality-of-life impacts. This registry was built to collect standardized, patient-reported information so that researchers and clinicians can better understand how vestibular conditions unfold over time, how they are experienced in daily life, and where the most pressing needs may lie. The registry invites people with dizziness, vertigo, and imbalance to share data about their medical history, symptom patterns, care experiences, and what’s helped — or not helped — them.
A new study in Annals of Clinical and Translational Neurology reports important insights into the real-world experiences of people living with vestibular disorders based on data collected through a previous version of VeDA’s Patient Registry. This study was designed to better understand what patients actually experience in the real world, from the first symptoms to getting diagnosed to trying different treatments. Most patients reported seeing many different providers (about 15 on average) for their symptoms. About two-thirds (66%) of people received more than one vestibular diagnosis, underscoring how difficult it can be to pinpoint a single cause for dizziness and balance problems. Nearly 1 in 5 patients (19%) were unable to work because of the extent to which their symptoms affected daily life.
The most common diagnosis reported by patients was vestibular migraine, affecting about half of the participants (51%). Other common diagnoses included benign paroxysmal positional vertigo (BPPV, 36%), Ménière’s disease (27%), persistent postural-perceptual dizziness (PPPD, 21%), and vestibular neuritis (22%). Many people had more than one of these diagnoses at the same time. For example, almost half of patients with vestibular migraine also reported BPPV, and about one-third also reported PPPD. This overlap shows how vestibular conditions can blend together in real life, making diagnosis more challenging than textbook descriptions suggest.
Despite different labels, patients across all diagnoses reported very similar symptoms, including dizziness, vertigo, imbalance, nausea, and sensitivity to motion or visual motion. Vestibular migraine was especially common and frequently overlapped with other diagnoses, which makes it particularly difficult to diagnose clearly. This condition does not have a simple test to confirm it, so doctors must rely mostly on symptom patterns, which can resemble those of other balance disorders. In some cases, migraine symptoms may be triggered by balance problems rather than being the main cause, which adds to the confusion.
Treatments and providers were not clearly matched to specific diagnoses: Patients were seen by many types of providers, and treatments were often similar across different diagnoses, suggesting that care is frequently based on trial and error rather than a clear plan matched to the specific condition. Even conditions that are usually considered easier to diagnose, such as BPPV, often took a long time to be identified. Primary care doctors, who often see dizzy patients first, were involved less than expected, suggesting a need for more training and support for frontline providers to recognize and manage balance disorders. The study also highlights that many healthcare providers receive limited training in examining the balance system, interpreting eye movements, and using modern tools to diagnose vestibular problems.
Despite the overlapping symptoms, some patterns still helped point to certain diagnoses. For example, people with vestibular migraine were more likely to have frequent headaches, sudden vertigo attacks, and nausea or vomiting. People with Ménière’s disease were more likely to report hearing problems and improvement with dietary changes. People with chronic dizziness triggered by visual motion were more likely to be diagnosed with PPPD. These patterns suggest that patient experiences still contain useful clues for diagnosis, even though symptoms overlap widely.
Overall, this study shows that many people with dizziness struggle with unclear diagnoses, repeated medical visits, and treatments that are not clearly matched to their condition. These findings highlight the need for improved methods to diagnose vestibular disorders, better training for healthcare providers, and more coordinated care among specialists. Improving these areas could help people get answers sooner, reduce unnecessary medical visits, and improve the quality of life for those living with ongoing dizziness and balance problems.
Source
A. Rafati, S. I. Nassar, S. A. Nguyen, et al., “ Vestibular Patient Journey: Insights From Vestibular Disorders Association (VeDA) Registry,” Annals of Clinical and Translational Neurology (2026): 1–17, https://doi.org/10.1002/acn3.70334.
