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Why Doctors Dismiss Dizziness - The New York Times

My vision had become blurry, so next I made an appointment with an ophthalmologist, who said my eyes were perfect. “It’s probably just stress and will go back to normal when things calm down,” she added.

It took a few months to get an appointment with a neurologist, who ordered a CT scan and an M.R.I. Both tests were clear. “Congrats!” he said. “No tumor. No Parkinson’s. No M.S. You’re good to go.”

But I couldn’t work or interact with my family, and most nights ended with me in tears. I was not good to go.

One of the problems for patients with dizziness is that doctors tend to be siloed into their own specialties by body part — eye, ear, brain. But dizziness is a problem with the vestibular system, which is the sensory system that collects data from the eyes, inner ear and muscles to help us keep our balance and posture. For many dizzy patients, each individual body part can test as healthy, but when they’re all connected, the system does not properly function.

And even the relatively small number of experts who do have appropriate training are often motivated by the insurance system to conduct exams and tests, rather than spending time talking to patients. And if the tests don’t reveal the source of the problem, they tell us it must by psychological, essentially blaming us for our own illness.

Because my wife works a corporate job and we live in New York City, I am lucky. I have great health insurance, proximity to local vestibular specialists, and access to some of the best university hospitals in the world. I was first diagnosed with vestibular migraine, and have since received a second diagnosis of persistent postural-perceptual dizziness, or PPPD. It’s an increasingly common diagnosis that describes chronic dizziness initially caused by one factor, like a virus or a fall, that has since affected the system as a whole. But even among experts there is disagreement about whether PPPD is a distinct condition or just an umbrella term.

My advice for people who suffer from dizziness is to be explicit with family, friends and co-workers about exactly what your symptoms are and how they affect your life. Vestibular disorders are invisible, which contributes to the loneliness sufferers feel.

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