Soon after my first child was born in 2012, I woke up every morning with a pulsating pain in my head and a disorienting feeling, like the floor was shifting beneath my feet. I’d stumble to the bathroom, popping Tylenol and Tums, but they only offered temporary relief. As a new mom, I struggled to care for myself while also looking after a tiny human. At first, I thought my frequent throbbing headaches, relentless nausea and debilitating vertigo were normal for postpartum life.
Then, everything became a trigger. At live concerts, loud music made my ears ring, my neck tighten and the room spin. So I stopped going. At playgrounds, seesaws and merry-go-rounds made me queasy. At happy hours with other moms, my hands went numb, fearing alcohol would set off an episode, leaving me unable to drive home. So I avoided those places, too.
I felt embarrassed about my illness. I was unable to talk about it with anyone except my husband – and a constant guilt weighed on me for needing his help. Months later, when my symptoms became disabling, I stopped working. I felt trapped, unable to live my life.
Over the next year, the pain intensified, migrating from my head to my neck, shoulder and jaw. My internal medicine doctor believed it was muscle-related and recommended physical therapy. Although sessions brought temporary relief, my condition worsened. I began having difficulty speaking and thinking clearly.
I went to my OB-GYN for another opinion. When my bloodwork came back normal, she advised me to return in six months to see if anything had changed.
My search for answers continued. In 2014, my ear, nose and throat doctor recommended vestibular testing to rule out inner ear damage and dysfunction. Once again, the results were normal. He said it might be Meniere’s disease (an inner ear disorder), chronic vertigo – or “it could just be anxiety.” I pleaded for relief, so he prescribed meclizine, an antihistamine that blocks the brain sensor causing dizziness, and hydrochlorothiazide, a diuretic that reduces fluid in the inner ear. Within weeks, I felt more stable, but the severe headaches persisted. I became more sensitive to light, sound and smell, which heightened my anxiety.
Like many women with chronic health conditions, countless providers told me my debilitating symptoms were “all in my head”. I saw four neurologists but not one expressed concerns. Even top vestibular experts, who study the part of the inner ear controlling balance and coordination, couldn’t figure out what was wrong with me. They all said the same thing: my results were normal; it was nothing but anxiety. Every appointment left me frustrated and hopeless.
No one knew it was all one condition – and unfortunately this is common. Sam Bittel, a certified vestibular audiologist and program director for Hearing & Balance Specialists of Kansas City, said, “The average dizzy patient sees five doctors before they get a diagnosis.”
When I had my second child in 2019, my throbbing headaches intensified again, leaving me in excruciating pain. It wasn’t until the following year, after I battled pain every day for a month, that I reached my limit and found yet another new neurologist. She immediately had a diagnosis: vestibular migraines, a neurological disease that caused dizziness and severe headaches.
After a decade of illness, all my symptoms made sense: the severity, the sensitivity to light and sound, the pulsating sensations and the feeling of being in constant motion. At 41, someone finally believed my invisible problem was real.
According to the American Academy of Audiology, more than 8 million people are affected by vestibular migraines every year. This underdiagnosed disease shares characteristics with regular migraines and occurs with persistent vertigo, per the National Institute of Health.
There are several theories about the root cause. Kristen K Steenerson, a board-certified neurologist with fellowship training in vestibular neurology at Stanford Medicine, says vestibular migraines could be the result of a vascular issue, like a blood vessel spasm in the ear or brainstem that may cause vertigo; irregularities in neurotransmitters, especially serotonin; sensory exaggerations like motion sickness; or a close association between Meniere’s disease and migraines.
Factors that can contribute to vestibular migraines are stress, fatigue, barometric pressure and certain foods. However, since there are many causes of vertigo – including various conditions and prescription and over-the-counter medications – diagnosing this condition is complex. Providers need to determine whether the migraines and vertigo are interdependent or related to one another.
Dr Shae Datta, a board-certified neurologist and specialist in brain injuries and vestibular migraine at NYU Langone, said this condition is typically diagnosed with a clinical assessment of symptoms and is considered chronic when there are “more than 15 migraines a month”.
One clear indicator of vestibular migraine is the duration of symptoms, Steenerson explained: “If I hear someone say, ‘I have problems for at least 24 hours,’ I know the diagnosis.” She also noted the other issues I experienced, such as difficulties thinking and speaking, were called a “cascade effect” resulting in brain fog, short-term memory loss, word finding difficulties and musculoskeletal stiffness.
Other factors pointing toward this diagnosis are family history and hormonal imbalance. I had both. Eventually I learned that my mom experienced throbbing headaches, just like I did – only without dizziness. And after my diagnosis, my OB-GYN shared that migraines were common postpartum, due to the suppression of estrogen. “Vestibular migraine is common among young female patients in their reproductive years. That’s by far the number one cause of dizziness,” said Bittel, the audiologist.
My neurologist recommended an integrated treatment approach. First, she suggested lifestyle modifications, such as prioritizing regular sleep, not skipping meals, hydrating well and doing 45 minutes of cardiovascular activity three days a week. I couldn’t imagine running with a pounding headache, but she insisted aerobic activity would help. “This type of exercise increases blood flow to the brain, which decreases headache,” she said.
She also advised taking preventive supplements such as magnesium glycinate and CoQ10 daily, to reduce migraine frequency and severity. Combining medications and lifestyle modifications had proved to be effective in a small study.
She suggested trying these methods first; if my symptoms didn’t improve within four to six weeks, I could add an antidepressant, nortriptyline, to regulate the nervous system, improve sleep and prevent the migraines.
I didn’t expect much, but after a month, there was significant improvement. I experienced less noise and light sensitivity, had fewer headaches and felt less dizzy. I began walking in short increments and doing daily yoga. Within a month, I was walking 45 minutes each time, returning home with no pain – the tension in my jaw, neck and shoulders was also gone. Although the dizziness and headache would return within a few hours, it was considerable progress. The antidepressant went untouched.
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I also saw a nutritionist, who suggested trying a migraine-friendly diet rich in magnesium and omega-3. She advised of varying protein sources, reducing sodium and avoiding trigger foods such as chocolate and items high in MSG. But headache specialists think the influence of “food triggers” is more complicated than previously thought. “There is limited research that diet interventions can reduce migraine symptoms, and caffeine can potentially increase the chance of a migraine attack for some people, especially in higher amounts, while easing pain in others,” Steenerson noted.
My neurologist also told me I had “rebound headaches”, a complication due to overuse of pain medications when taken more than 15 days in a month, according to the American Migraine Foundation. She added that people with migraines are predisposed to this type of headache and the only way to break the cycle is to stop taking them. According to Steenerson: “current research suggests that frequent pain medicine use can lower your threshold for experiencing pain and reinforce the pathways that process pain.”
Although it took significant effort, this comprehensive method did decrease my pain, stabilize my vertigo and improve my quality of life.
Other treatment options, beyond what I tried, include calcitonin gene-related peptide (CGRP) subcutaneous injections, which have shown promise in preventing migraines. “We’ve never had anything like this before,” said Steenerson. “It’s an incredible advancement for migraine management.”
Another alternative is vestibular therapy, which involves physical exercises under the supervision of a specialist with expertise in vestibular migraines. The goal, Steenerson says, is “to desensitize and habituate the world around you so you can participate as much as possible”.
The anxiety I felt about loud music and playground equipment is typical for patients anticipating future migraines. “People with vestibular migraines often say: ‘I was never an anxious person before this, but now I’m suddenly noticing I’m on edge all the time,’” Steenerson noted.
When my anxiety became unbearable, I was referred to a psychologist specializing in cognitive behavioral therapy (CBT). He encouraged me to engage in activities that made me most anxious, such as revisiting playgrounds with triggering equipment, known as exposure therapy.
At first, it felt impossible, but I slowly learned to cope. As I enhanced my exposure to triggers, my anxiety improved. Each time I did something that scared me, my threshold went up, proving to myself I could do it.
With CBT, explained Elizabeth Seng, an associate professor of psychology at Yeshiva University: “The goal is to identify patterns of thoughts and beliefs leading us to feel overwhelmed or disengaged, and not just able to manage our symptoms when they come up.”
When migraine episodes are happening often, Seng explained, the body has an increased awareness and decreased tolerance to triggers. “If your threshold is low, you’ll be having regular migraine attacks. But as you raise the threshold, they will happen less frequently,” she said.
Another treatment option is acceptance and commitment therapy (Act), which emphasizes accepting your condition and managing your lifestyle to improve quality of life, said Seng. A statement like “Tomorrow, I’ll still have migraines” acknowledges reality, while a commitment phrase like “I’ve done it before, and I’ll do it again” reinforces resilience.
These days, I no longer wake up feeling sick. I’ve returned to the live performances and restaurant bars I once avoided. Every day, I look forward to walking for an hour outside. I’m working full-time again and keeping up with my two kids. For me, it came down to one neurologist with the right experience who listened, identified my problem and helped me feel hopeful again.
For those who suspect they have vestibular migraines, online tools can be a good first step. This online calculator can help assess symptoms, and this headache diary, which my nutritionist encouraged me to keep daily, can help track patterns of responses to foods that may trigger you.
It feels good to have my life back. Now, I only have severe episodes a few times a year, but echoing Seng’s Act phrase, I remind myself that I’ve survived before and I’ll survive again. I truly believe I can manage my condition because I finally have the tools and medical support I need.
