Three years ago I wrote an essay for Well about the chronic dizziness that had devastated my life. In response, I received thousands of letters, calls, tweets, emails and messages from Times readers who were grateful to see a version of their own story made public.
Their symptoms varied. While some experienced a constant disequilibrium and brain fog that were similar to mine, others had become accustomed to a pattern of short periods of relative health alternating with longer periods of vertigo.
Most of them, like me, felt that family and friends often didn’t understand how dizziness could be so debilitating. They told me that the combination of the loneliness and feelings of uselessness that come from an inability to work or spend time with family led to despair and depression. And, most commonly, they felt that the medical system made them feel responsible for their own suffering.
“Doctors began to suggest that anxiety or depression were the cause of my symptoms,” a young woman from Connecticut wrote. “I eventually gave up on the quest for answers, as their attitudes added stress to an already stressful reality.”
“Have been to so many doctors that keep saying, ‘It’s all in your head. There’s nothing wrong with you,’” wrote an older woman from Ohio.
“Mostly been told there is nothing they can find,” wrote a middle-aged woman from Illinois. Her doctor told her it was probably just depression and anxiety.
Dizziness is among the most common reasons people visit their doctor in the United States. When patients first experience prolonged dizziness, they may go to an emergency room or to see their primary care physician. That’s what I did. And I heard what most patients hear: “People get dizzy for all sorts of reasons, and it should resolve itself soon.”
It’s true that dizziness often is a temporary symptom. The most common causes of dizziness are benign paroxysmal positional vertigo (caused by displaced pieces of small bone-like calcium in the inner ear), and vestibular neuritis (dizziness attributed to a viral infection or tiny stroke of the vestibular nerve), both of which typically last only weeks or months.
But approximately 20 percent of cases remain chronic, escape explanation, or both.
For me, as for so many thousands of others, the dizziness did not resolve itself, so I saw an otolaryngologist, a specialist in ear, nose and throat disorders. After an examination, the doctor said my inner ears looked good to him and sent me on my way.
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.
I’ve learned other lessons about the specific steps that most dizzy patients should take.
If at all possible, make an appointment with a specialist in dizziness. There are excellent dizziness and balance centers across the country, including those at New York University, UPMC, the Mayo Clinic and Johns Hopkins. The Vestibular Disorders Association is a valuable resource for information and to find providers in your area. It is also important to continue to seek second and third opinions if you feel as though a particular specialist isn’t right for you.
Acknowledge the psychological distress these disorders cause. Do your best to find and meet regularly with a psychotherapist who has experience working with patients who suffer from chronic medical conditions. Find a support group on Facebook. I have made beneficial connections in online forums where thousands of people trade advice, encouragement and consolation.
The diagnosis of PPPD was useful for me in that it came with a new set of medications — a combination of Xanax, which makes the nerves in the brain less sensitive to stimulation; Zoloft, which regulates the brain chemical serotonin; and verapamil, a blood pressure drug. This drug regimen has given me a few hours of clarity each day. I can teach again and enjoy time with my family.
Brian Platzer is the author of the forthcoming novel, ‘The Body Politic’.