Facebook’s ‘memories’ feature recently helped me realize that my vestibular issues started in 2008 with hearing issues and vertigo that doctors assumed was labyrinthitis. However, after further episodes over the years and an MRI to rule out other causes for the appalling hours-long bouts of debilitating vertigo, I was diagnosed with Meniere’s disease in one ear. A few years later, the other ear joined the party, and life has been a veritable rollercoaster ever since. Being a musician, the worst thing in the past few years has been losing my hearing and the distortion of musical pitch.
As a former science teacher, I’ve immersed myself in the research to try to understand the condition, most recently interviewing one of the world’s leading researchers on Meniere’s. Running a Facebook support group with close to 10 thousand members, I quickly realised there is a real thirst for good quality, easy-to-understand information and stories of lived experience, so I’ve begun writing on Substack to try to bring together what I’ve learned over the years, and what I continue to discover. Maybe it helps.