I am gifted with Meniere’s, and contacted you early on in my struggles. I’m not on Facebook, but do receive your emails and you have been a constant source of hope for me. It’s been exactly one year in for me and I have also found a Dr. at UM at the FAU location who has been compassionate and knowledgeable. I have had severe attacks needing emergency trips to the hospital. Your podcast today I just heard and I am about to begin my 12 hour teaching job soon. I like what you said about having the hope and life is different now. I am still in the process of missing the old me, and struggle with the concept of new limitations in my life. My life was always moving forward at an incredible pace. Meniere’s forced me to slow down and pay attention to details as the brain fog presented a real challenge. Some days I’m braver than I’ve ever been, and some days as you expressed I feel overcome with feeling mentally slower and confused. I have lost hearing completely in one ear with the tinnitus, like a bee hive in my head. As you can imagine, with the constant noise and chatter that happens in a classroom of 25 students each day, the first thing I had to do was unplug the pencil sharpener. I have my students repeat themselves often, as the background noise presents an issue. My students just think I’m old and can’t hear! I wobble sometimes through the maze of backpacks on their chairs, but that seems normal to them, and they can’t figure out how someone can eat the same meal if salads each day. Thank goodness I push through my job as I would be home watching Hallmark channel if I didn’t have a purpose. I Have read your publications and thank you for being so honest and sharing. I get it. Unfortunately, with teaching, I have to look perfect on the outside and my job is based on performance. The act itself I perform each day to be normal again is exhausting in itself. People at work do know I have Meniere’s, but have mentioned that they don’t believe me. That’s the hardest part because our outside appearance does not always reflect how the inside is spinning. Please continue your books and podcasts because your message is so important. Each day I push through for my boys as one enters law school and the other is a professional musician. I push through because I won’t let this disease define me anymore, and there are days when I succumb, and the fear sets in again. You have been a ray of hope and an example for me. Thank you.

Transplant from Texas, new Fort Myers neurootologist misdiagnosed me with BPPV after spending just 10 min with me. PT specializing in balance disorders, after many tests, had said, whatever you have, is not BPPV. Her diagnosis was unilateral vestibular dysfunction. Generalized Vestibular therapy did not help me. When I couldn’t help myself and started crying on my next appointment with neuroothologist, he sent me to a psychiatrist.
Just like you I had the most terrifying 4 hours of “spinning” into unconsciousness and back episode, only I was spinning, not the room and things around me. I was incapacitated the entire 4 hours. PT said it looks like my vestibular system was resetting..
My life is hell for nearly 8 years. I have POTS on top of my balance\motion symptoms which are severe. Looking back, when just like you I was brushing off my symptoms and “living” my life, the very first episode of vestibular/balance dysfunction preceded my POTS. One morning when I got up, I was literally falling to the left. Terrified me tremendously. But symptoms were on and off for years. Not until after the 4 hours spinning episode (2015) it became daily and permanent. Lorazepam, prescribed by a POTS doctor, who happened to have his own vestibular issues for several years, was keeping me semi functional. It’s not working anymore and I suspect it the cause if my cognitive/ brain fog and many more issues. Even though I never took more than 1 mg a day, 0.5 mg most days.
Anyway, I utilize some of your self help techniques. Thank you.
Oh, I had several therapy sessions at Fyzical, but was disappointed with the lack of so much needed therapy adjustment, for what I was doing wasn’t working, yet, they continued the same exercises. It got to the point I wasn’t even able to get to appointment due to severely of “ dizziness”, for that I was penalized by a fee. I had so much hope with Fyzical.