Ten years ago, after returning from a trip abroad, Alicia Wolf, then 30, woke up feeling dizzy. Alongside her jet lag, she had been recovering from a cold. Work, as a watch designer in Dallas, had become stressful. Her doctor predicted that her dizziness would peter out with the cold. “But it just never went away,” she said.
As Ms. Wolf worked her way through eight puzzled E.N.T.s, neurologists and other doctors, her condition worsened. She developed extreme sensitivity to light and sound. Staring at her computer screen at work became unbearable. Some days, she’d park her car and feel as if it were still moving.
An E.R. doctor told her she had vertigo, which is a symptom, not a diagnosis. “Everyone just said, oh, it’s anxiety, it’s depression, it’s all these different things,” she recalled. Five months passed before she finally heard a diagnosis that hit on all of her symptoms: vestibular migraine.
This poorly understood form of migraine is primarily characterized by dizziness, disequilibrium and vertigo — but no headache. Because there’s typically no head pain, doctors often mistakenly rule out migraine, making diagnosis elusive. A 2018 study found that only a tenth of subjects with vestibular migraine were told that migraine was causing their dizziness.
The study also found that almost 3 percent of Americans suffer from the condition, though this is likely an undercount, said Dr. Jeffrey Sharon, an associate professor of otolaryngology at the University of California, San Francisco and a co-author of the study.
“I call it the most common disease you’ve never heard of,” he said. “The vestibular system in general is a forgotten corner of medicine.”
No Man’s Land
Experts describe migraine (vestibular or otherwise) chiefly as a sensory processing disorder. During an attack, abnormal brain activity trips the trigeminal nerve, which releases molecules called calcitonin gene-related peptides, or C.G.R.P., that inflame nearby blood vessels and sensitize the nerve itself, putting pain signaling into overdrive. That causes the nervous system to become hypersensitive to stimuli it would normally tolerate, and can produce a wide range of reactions to light, sound and even smells. Reactions can vary from person to person, and even from attack to attack.
Vestibular migraine primarily affects the vestibular system, which is found in the inner ear and works with your brain to help maintain balance and coordinate posture and eye movements. When this balance system becomes hypersensitive, it causes the trademark dizziness and disequilibrium.
Because it involves dizziness, vestibular migraine falls in a gap between two specialties: neurology and otology. It is often mistaken for Ménière’s disease, an inner ear disorder, or persistent postural-perceptual dizziness, a chronic neurological condition. Until 2012, vestibular migraine lacked formal diagnostic criteria.
While most neurologists and E.N.T.s are now familiar with the condition, many primary care doctors are not, said Cynthia Ryan, the executive director of the Vestibular Disorders Association, a patient advocacy group. Dr. Sharon said his average patient had visited at least five providers before reaching him.
Experts aren’t sure why vestibular symptoms present in some people but not others. But a history of migraine in any form may make someone more likely to experience a vestibular one. According to the 2018 study, being younger than 40, being female, and having anxiety, depression or prior head trauma were all associated with “significantly increased odds” of experiencing vestibular migraine.
“Oftentimes people think, ‘I used to get migraines in my teens, but I don’t get them anymore, so this can’t be migraine,’” said Dr. Margaret Aron, a clinical assistant professor of otolaryngology and head and neck surgery at the University of British Columbia who studies dizziness. “But you’re kind of always a migrainer. Your brain is always susceptible to that.”
A Trifecta of Triggers
While diagnosing the condition can be difficult, there is consensus around the most common drivers: stress, poor sleep and inflammation.
My own bout of vestibular migraine included all three. In December, my wife gave birth to our first child. Sleep became dismal. Work was piling up, and I was suffering from seasonal allergies. At the computer one evening, wrapping up a project, I was overcome with intense vertigo. Turning my head sent the room spinning. The suddenness and immensity of the attack was frightening; I was bedridden for hours. For several days afterward, I felt lethargic and sensitive to light and sound, as if hung over.
Over the next four months, this happened half a dozen times more. Each attack followed a busy workday or bout of travel and varied in severity. My primary care doctor was stumped. An audiologist detected no hearing loss, which ruled out Ménière’s. An M.R.I. found nothing. An optometrist detected no vision changes. But the neurologist knew.
For good measure, I met with my E.N.T., Dr. Philip Littlefield, who practices near my home in San Diego. He agreed with the neurologist’s diagnosis.
But I had no history of migraine, I said to him. Why now?
He mentioned the trifecta of triggers and my age (35). He also noted how people who get migraines tend to have brains that are sensitive to sensory stimuli. Digesting this, I realized that I’d always been easily bothered by sound, especially loud chewing. My vasovagal response is also annoyingly jumpy; blood draws have made me faint. Dr. Littlefield saw a pattern. “You’re right down the middle of the lane with this one,” he said.
No Silver Bullet
There is no one-size-fits-all approach to treating vestibular migraine. In many cases, doctors prescribe a cocktail of various medications, lifestyle changes and supplements. Protocols are multidisciplinary and individualized, and providers often disagree over what works. Some, for instance, swear by beta blockers, while others say they’re useless. (If they do work, it is not fully understood why; some experts think it’s because they calm an overactive brain, related to the stress that often prompts attacks.)
After an E.N.T. suspected that Ms. Wolf had vestibular migraine, she connected with Dr. Shin Beh, a neurologist who runs a private clinic in Irving, Texas, specializing in vestibular and migraine disorders. Dr. Beh said most people come to him after bouncing fruitlessly between specialists, something he likens to “wandering in the wilderness.” Reviewing M.R.I. scans of Ms. Wolf’s brain, Dr. Beh identified white matter spots (small patches where the brain’s wiring has undergone some minor change) that can indicate migraine activity. Taking her symptoms and lifestyle into account, he confirmed the diagnosis.
Dr. Beh devised a treatment plan for Ms. Wolf that included timolol, a beta blocker eye drop, and lorazepam, to treat her anxiety. She also took various supplements that studies suggest might help prevent migraine, such as magnesium, CoQ10 and vitamin B2. And Dr. Beh advised some major lifestyle changes: Ms. Wolf left her high-stress job and eliminated alcohol and caffeine.
Over time, Ms. Wolf gradually progressed from near-constant dizziness and frequent debilitating vertigo attacks to dizzy‑free hours, then days, then months. Now, 10 years later, she says she is in remission. She still takes daily supplements, but only uses the lorazepam and timolol as “rescue” meds.
More Work to Do
Specialists and sufferers say that vestibular migraine is starting to get the attention it deserves.
Dr. Sharon recently conducted an unpublished study with Dr. Jason Allen, a neuroradiologist at Indiana University, analyzing brain activity in vestibular migraine patients. They found that the insula, the brain’s hub for integrating sensory information with emotional and cognitive processing, was particularly affected.
“Hyperactivity of the insula would seem to explain many of the clinical features that we can see in vestibular migraine,” he said.
And research on migraine as a whole has shed light on vestibular migraine causes and treatments, most notably through the study of C.G.R.P. Scientists identified C.G.R.P. in the ’80s, but it took decades of research to establish it as the key mechanism behind migraine headache. Dr. Jeffrey Staab, a Mayo Clinic psychiatrist who specializes in dizziness disorders, calls it “the first really unique migraine pathology clue.”
In 2018, a wave of drugs targeting C.G.R.P. finally came to market — the first-ever therapies designed specifically for migraine headaches. Now there’s some indication that C.G.R.P. drugs may help some people with vestibular migraine, too.
In a 2024 study, Dr. Sharon and his colleagues found that a C.G.R.P.-inhibiting drug called galcanezumab (brand name Emgality) outperformed a placebo in reducing dizziness. Another C.G.R.P. inhibitor, Ubrelvy, has worked wonders for me. But there haven’t been any large trials testing the drugs’ effectiveness for vestibular migraine, and the experts said some patients see only modest benefits or none at all.
At the same time, triptans, a class of drugs known as selective serotonin receptor agonists, which have strong evidence in treating migraine headaches, have shown little effect on vestibular migraine.
While the ultimate goal is to develop better treatments for vestibular migraine, experts first need a deeper understanding of the disease, Dr. Sharon said.
“A picture is emerging that is more complex,” he said, “where vestibular migraine shares many features of migraine, but they are not the same.”
The post Extreme Dizziness, No Headache: The Migraine Many Doctors Miss appeared first on New York Times.
