What is Meniere’s Disease?
It’s a rare chronic inner ear disorder.How did you find out you had it?
I was getting horrible vertigo, which is the main symptom (though tinnitus is one too, which doesn’t strike me as very fun). The first time, I was at my sister’s house for Thanksgiving and walking a dish from the kitchen to the dining room. I remember leaning on the wall of the hallway like I’d tripped. But it was just a moment and I thought: walk much? It’s never happened like that again. That was a warning shot. A few weeks later, the spinning woke me up in my sleep when I turned in the wrong direction. Things have to be pretty extreme to wake you up. Not to wake up in discomfort but from discomfort. As someone who loathes rollercoasters, this is a comically bad disease for me. Your vision blurs just the way it would be if you were spinning on a ride. The heart rate rises, too. I was diagnosed by an ENT who sent me to an audiologist. The good news? I have “Meniere’s light” (my doctor’s words) so my hearing will most likely be fine.How does it affect your personal and professional life?
I get worried if I’m dehydrated (a triggering factor) or about drinking too much caffeine or consuming too much salt. These are things everyone should worry about. But I worry my system will keep track of it, tally it, and take its revenge. But it doesn’t affect my professional life, no. Mostly because I’m not an acrobat.What was your experience with doctors during the Covid pandemic?
Almost none. I was lucky. Nothing really happened. I will say, the pandemic is how I learned I can’t speak to my therapist over the phone. Too much of a conversational onramp. In person, you can jump right in.“The spinning woke me up in my sleep. Things have to be pretty extreme to wake you up. Not to wake up in discomfort but from discomfort.”
Tell us about the primary care doctor who diagnosed your sister’s Crohn’s and your dad’s lymphoma.
Dr. William Perlow. I don’t have enough room here to sing this man’s praises so I won’t try. He saved my father’s life and changed my sister’s life, forever, for the better. He retired just before the pandemic. He was a G.I. guy but I used him for primary care. Just a deeply human man who gave you the sense you were in superhuman hands without ever talking down to you.What do you think is important for you in a primary physician?
Living in the real world. I recently broke my pinky toe by being an idiot, but somehow messed it up enough, my podiatrist scheduled me for an MRI. And I thought: really? Seems elaborate. But his view was that these appointments take a long time to schedule so I might as well book the appointment and if I don’t need it when it rolls around, great. It’s kinda pathetic how impressed I was by this, by the idea of making a patient’s life easier in general. It should be more common.What are ways in which you provide yourself with self-care?
For the Meniere’s specifically, there’s something called the Epley maneuver, but I’m not very good at it. I also dread it because it means making the dizziness much worse before it gets better. But I also kind of respect that there’s no magic pill (except diuretics) for this. You basically have to turn your head to move some crystals around in your ear canal and then sit up straight and let them settle back into place. It has a real “here, bite on this stick” quality.“I worry that I will hurt other things while compensating for the Meniere’s. I have definitely had more neck problems because of this. Or there are certain exercise classes that scare me.”
