Understanding Vestibular Migraine

About ten years ago, Alicia Wolf, then 30, returned from a trip and began to feel strange—dizzy and disoriented. Along with jet lag, she was recovering from a cold, and her job as a watch designer in Dallas had started to feel overwhelming. Her doctor assured her that her dizziness would fade as her cold improved. But, surprisingly, it didn’t.

During her journey through the health system, she consulted eight different specialists, including E.N.T.s and neurologists. Unfortunately, things grew worse. She became extremely sensitive to light and sound, making her work at the computer nearly impossible. There were days she’d park her car but feel like it was still moving.

An emergency room doctor diagnosed her with vertigo, but that’s just a symptom, not a full diagnosis. “Everyone just kept saying it was anxiety or depression, or a mix of things,” she remembers. Months later, she finally got a diagnosis that encompassed all her symptoms: vestibular migraine.

This type of migraine is often misunderstood. It’s characterized mainly by dizziness, imbalance, and vertigo without the typical headache. The absence of head pain often leads doctors to overlook migraines as a cause of these symptoms. A study from 2018 revealed that only about 10% of people experiencing vestibular migraine were correctly informed that migraines were behind their dizziness.

Dr. Jeffrey Sharon, an associate professor of otolaryngology at UC San Francisco, suggests that nearly 3% of Americans may experience this condition, although it’s likely there’s an underreporting. “I call it the most common disease that you’ve never heard of,” he commented, noting that the vestibular system is often neglected in medical discussions.

No Man’s Land

Experts generally describe migraines, including vestibular types, as issues related to sensory processing. During a migraine episode, unusual brain activity stimulates the trigeminal nerve, releasing calcitonin gene-related peptides (C.G.R.P.) that inflame blood vessels and heighten sensitivity, making one’s nervous system react intensely to stimuli that would usually be manageable, leading to various responses to light, sound, and even smells. These reactions can differ from person to person and change from one attack to another.

Vestibular migraines primarily affect the vestibular system located in the inner ear, which helps with balance and coordination. When this system becomes overly sensitive, characteristic dizziness and disorientation result.

This type of migraine often gets confused with Ménière’s disease, an inner ear condition, or persistent postural-perceptual dizziness, a chronic neurological issue. Until recently, formal diagnostic criteria for vestibular migraine didn’t even exist.

While most neurologists and E.N.T.s are becoming familiar with the condition, many primary care providers still are not, according to Cynthia Ryan, executive director of the Vestibular Disorders Association. Dr. Sharon notes that his average patient has seen at least five doctors before reaching him.

The reasons why some experience vestibular symptoms while others do not remain unclear. However, having a history of migraine, in any form, may increase the likelihood of developing vestibular migraines. The 2018 study found that being under 40, female, and having a history of anxiety, depression, or head trauma all raised the chances of experiencing vestibular migraines.

“Sometimes people say, ‘I used to get migraines when I was younger, but not anymore, so it can’t be migraine,’” Dr. Margaret Aron, a clinical assistant professor at the University of British Columbia, explained. “But once you have that susceptibility, it tends to stick with you.”

A Trifecta of Triggers

Diagnosing vestibular migraine can be tricky, yet there is agreement among experts about the most common triggers: stress, insufficient sleep, and inflammation.

My own experience with vestibular migraines included these three factors. In December, my wife gave birth to our first child. Sleep was nearly non-existent. Work was mounting, and I was battling seasonal allergies. One evening, as I worked on a project, an overwhelming wave of vertigo struck. Simply turning my head made the room spin, and the ferocity of the episode was scary; I ended up bedridden for hours, feeling exhausted and hypersensitive for days afterward.

That experience wasn’t isolated. Over the next four months, I faced similar episodes multiple times, always after a demanding workday or travel. My primary care doctor didn’t have answers. Tests ruled out Ménière’s disease, and an M.R.I. showed nothing significant. An optometrist found no vision problems. Ultimately, the neurologist pinpointed the issue.

To further confirm the diagnosis, I also consulted Dr. Philip Littlefield, my E.N.T. He echoed the neurologist’s assessment.

“But I’ve never had migraines,” I protested. “Why am I dealing with this now?”

Dr. Littlefield discussed the trifecta of triggers and mentioned my age (I was 35). He explained that those prone to migraines often have brains that are sensitive to sensory input. Reflecting on this, I realized I’ve always been a bit reactive to certain sounds, like loud chewing. And, I have a tendency to faint at blood draws, indicating an overly reactive vasovagal response. Dr. Littlefield pointed out these patterns, saying, “You fit right into this case.”

No Silver Bullet

Treating vestibular migraines isn’t straightforward. Often, doctors prescribe a blend of medications, lifestyle adjustments, and supplements tailored to the individual. There’s ongoing debate about effective treatments; some swear by beta blockers, while others find them ineffective. If they help, the reasons aren’t entirely clear, though some believe they calm an overactive brain, which might be related to stress-triggered attacks.

Once an E.N.T. suspected Ms. Wolf was dealing with vestibular migraine, she reached out to Dr. Shin Beh, a neurologist in Irving, Texas, who specializes in vestibular and migraine disorders. Many patients find their way to him after feeling lost among numerous specialists. After reviewing Ms. Wolf’s M.R.I. scans, Dr. Beh noticed white matter spots, which can signify migraine activity, and confirmed her diagnosis, considering her symptoms and lifestyle.

Dr. Beh created a treatment plan for Ms. Wolf that included a beta blocker eye drop, timolol, and lorazepam to help with anxiety. She also started taking supplements that studies suggest could help prevent migraines, like magnesium, CoQ10, and vitamin B2. Additionally, she made significant lifestyle changes by quitting her high-stress job and cutting out alcohol and caffeine.

Over time, Ms. Wolf progressively transitioned from almost constant dizziness and regular vertigo episodes to experiencing hours, then days, then months without dizziness. Now, a decade later, she says she’s in remission, taking daily supplements but using lorazepam and timolol only as needed.

More Work to Do

Those who specialize in vestibular migraines and those who suffer from them agree that awareness is growing.

Dr. Sharon recently collaborated with Dr. Jason Allen, a neuroradiologist, to analyze brain activity in vestibular migraine patients, discovering that the insula, an area responsible for processing sensory information along with emotions and cognition, showed significant activity.

“Increased activity in the insula seems to account for many clinical features observed in vestibular migraine,” he noted.

Moreover, broader research on migraines has provided insights into potential causes and treatments for vestibular migraines, particularly through studies on C.G.R.P. Identified in the 1980s, it took decades to establish its role as a key factor in migraine headaches. Dr. Jeffrey Staab from the Mayo Clinic, who specializes in dizziness disorders, describes it as a major breakthrough in understanding migraine pathology.

In 2018, new drugs targeting C.G.R.P. were launched, marking a significant step in treating migraines. Some early evidence suggests these medications might also assist people with vestibular migraines.

In a 2024 study, Dr. Sharon and his team noted that a C.G.R.P.-inhibiting drug called galcanezumab (Emgality) was more effective than a placebo in alleviating dizziness. Personally, another C.G.R.P. inhibitor, Ubrelvy, has been beneficial for me. However, larger studies focusing on these drugs for vestibular migraine are lacking, and some patients may see only minimal benefits.

Meanwhile, triptans, effective for typical migraine headaches, have not shown notable results for vestibular migraines.

Ultimately, as experts strive to create better treatments for vestibular migraine, a more profound understanding of the condition is necessary. Dr. Sharon emphasized that current understandings are complex, with vestibular migraines sharing some similarities to migraines but remaining distinct in many ways.