ICU – “I See You” Podcast
Vestibular Migraine
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Vestibular migraine is a condition that affects more than half of all migraine sufferers at some point, yet remains frequently misdiagnosed. Vestibular migraine can cause not only headaches but also vertigo, dizziness, imbalance, and sensory sensitivities—making it a formidable challenge for both patients and clinicians. In this episode, we’re joined by two remarkable guests: a dedicated volunteer with the World Migraine Summit who brings lived experience and advocacy insight, and Dr. Brian Ward, a neurotologist at Johns Hopkins Medicine. We explore how lifestyle management, medication, and other targeted therapies can help restore balance and hope to those navigating vestibular migraine.
Guests
Dr. Bryan Ward is a Neurotologist with Johns Hopkins University who specializes in treating inner ear and skull base disorders that cause dizziness, such as superior canal dehiscence syndrome, Meniere’s disease, and bilateral vestibulopathy. His research interests focus on magnetic resonance imaging (MRI) and interactions between strong magnetic fields and the inner ear. He also works with Dr. Charles Della Santina on the development of a vestibular implant.
Natanya Mandel is a migraine coach, mindfulness facilitator, and passionate patient-advocate whose own journey with frequent migraine attacks and disruptive neurological symptoms inspired her to shift her career and support others living with migraine and chronic pain. Natanya has volunteered with groups like Migraine Canada and the Migraine World Summit, facilitates virtual support groups, and helps people navigate the challenges of chronic migraine with compassion and evidence-informed guidance.
Summary
Natanya’s Story: Living With “The Dizzy”
For Natanya, vestibular migraine appeared to arrive suddenly. One day, she became dizzy—and then it never stopped. She describes experiencing vertigo 24/7 for years, with the world spinning around her. Although she’d had migraine with aura since childhood, she hadn’t realized that many of the odd sensations she’d lived with all her life were actually vestibular migraine symptoms.
Her diagnosis journey, while challenging, was relatively “lucky” compared to many. Living in Sydney, Australia, she was already under migraine care when she was admitted to the hospital for severe dizziness and referred to a specialized “Dizzy Clinic” at Royal Prince Alfred Hospital. There, extensive vestibular and neurological testing—some of it “space age” and quite unpleasant—helped confirm that what she was experiencing was real and measurable.
One pivotal moment came when clinicians recorded brain activity during an episode. Her husband was in the room and could see the changes on the monitor as the dizziness was happening. That objective evidence was powerfully validating for both of them: it confirmed that the condition was “in her head” in a neurological sense, but not “in her head” as in imagined or exaggerated.
Natanya also shares how vestibular migraine disrupted her professional life. At the time, she was the executive director of a nonprofit. During a lunch with her board chair, she suddenly fell off her chair “like a drunk person” when the dizziness hit. Her chair laughed at the absurdity of the moment but immediately took her home, confiscated her laptop, and insisted she rest. Embarrassing as it was, Natanya appreciated the combination of grounded support and lack of blame. Her workplace’s understanding gave her the space to pursue diagnosis and take the rest she needed.
Managing Symptoms: Pacing, Medication, and Self-Compassion
When it comes to what has helped most, Natanya emphasizes pacing and medication, rather than strict dietary changes. She hasn’t identified specific food triggers for herself; instead, her management has been about “layering supports” rather than finding a single magic fix.
Key strategies she highlights include:
- Medication as an important stabilizing factor.
- Reducing workload and stress, including shifting away from highly demanding roles.
- Respecting sensory limits—recognizing when visual, auditory, or environmental input is too much and adjusting accordingly.
- Honoring fatigue as a neurological consequence, not a personal failing.
A core mindset shift came from a comment during testing: a clinician explained that her brain was “working three times as hard” to process incoming sensory information. This reframed her exhaustion as a direct result of her brain’s extra workload. From there, she began to see rest as a strength and a necessary part of managing a neurological condition, rather than a weakness or lack of effort.
The Challenge of Explaining an Invisible Illness
Outside the clinic, Natanya finds vestibular migraine to be a particularly isolating invisible illness. Pain is something most people understand, she notes—everyone has had a headache or an injury. But dizziness, imbalance, and distorted perception are much harder for others to imagine.
She recalls her sister-in-law once asking which was worse, the pain of migraine or “the dizzy.” Natanya’s answer—“the dizzy”—was initially met with disbelief. That interaction highlighted for her how abstract dizziness is to people who haven’t experienced it.
To bridge this gap, she focuses on concrete, functional descriptions rather than medical explanations. Instead of trying to describe neurophysiology, she explains how it affects her:
- “I can’t sit up or lie down.”
- “I can’t walk downstairs—but I also can’t walk upstairs.”
- “Crowds, stairs, and moving visual patterns can make me look drunk when I’m actually sober and dizzy.”
She recounts attending a theater performance where strobe lights triggered a massive dizzy spell. Descending a circular staircase amid a crowd, with a swaying banner in her visual field, left her stumbling and unsteady. From the outside, she looked intoxicated; in reality, she was overwhelmed by vestibular and visual input. Her daughter had to help her sit and wait until the crowd dispersed.
Experiences like this, she says, erode trust in one’s own body and can be deeply distressing. They also illustrate why dizziness-related symptoms are often more troublesome than head pain, even though standard “pain scales” and questionnaires rarely capture that reality.
Finding Information and Validation
Natanya’s understanding of her own condition expanded significantly after moving to Canada, where she began seeking out more information. She discovered patient organizations and resources, including VeDA, the Migraine World Summit, books by vestibular specialists such as Dr. Shin Beh, and various podcasts.
What helped most was learning that many strange phenomena she’d always experienced—like afterimages when looking away from objects, “Alice in Wonderland”–type visual distortions, or occasionally feeling as if she were seeing through a glass wall—were recognized as migraine or vestibular symptoms. Realizing these weren’t quirks unique to her, but part of a known pattern, felt grounding and validating.
That awareness now helps her recognize “mini episodes” early and respond with self-care, rather than pushing through until she crashes.
Dr. Brian Ward: Why Vestibular Migraine Is Common but Overlooked
From Dr. Brian Ward’s perspective as a neurotologist, vestibular migraine is highly prevalent but significantly under-recognized. He notes that:
- An estimated 1–3% of all adults will experience vestibular migraine in their lifetime.
- Among people with a history of classic migraine, 50–66% will have vestibular symptoms attributable to migraine.
Despite these numbers, vestibular migraine remains underdiagnosed for several reasons.
Misconceptions and Diagnostic Challenges
One major barrier is the persistent view of migraine as purely a headache disorder. Many clinicians still assume that without head pain, a patient cannot have migraine. Dr. Ward emphasizes that this is incorrect: patients can experience vestibular symptoms—dizziness, vertigo, imbalance—without concurrent headache.
Another difficulty is that vestibular migraine is a clinical syndrome, not a lab-based diagnosis. There is no blood test or imaging study that definitively confirms it. Diagnosis relies on symptom patterns and established criteria, such as those published by the Bárány Society. Typically, a patient must have:
- A present or past history of migraine.
- Recurrent episodes of vertigo or dizziness.
- Sensory sensitivities (light, sound, motion, visual stimuli), often around the time of episodes.
Complicating matters further, dizziness in migraine is often vague or atypical compared to textbook vertigo. Patients may describe:
- The world tilting or lagging behind when they turn their head.
- Feeling like they’re walking on clouds or pillows.
- An odd sensation of motion rather than classic spinning.
Because many clinicians are trained to look for clear rotational vertigo (“the room is spinning”), they may miss vestibular migraine when symptoms don’t match that template.
Dr. Ward points out that vestibular tests are frequently normal or near-normal in vestibular migraine. While this is medically reassuring—it suggests the inner ear structures are intact—it can be emotionally deflating for patients desperate for an explanation. They may feel dismissed when told their results are “great” despite feeling terrible. In his view, test results should be framed as one piece of the puzzle, not a contradiction of lived experience.
Overlap With Other Vestibular Disorders
There is substantial overlap between vestibular migraine and other vestibular conditions, such as Ménière’s disease. Dr. Ward notes that up to half of people with Ménière’s eventually develop vestibular migraine symptoms. Differentiating these diagnoses matters because treatment strategies differ significantly.
He conceptualizes migraine as a problem of abnormal brain excitability—“electrical storms” in various regions. Depending on which networks are involved, patients can experience very different combinations of visual, vestibular, sensory, and pain symptoms. However, he suggests that the core principles of management are similar, regardless of the exact mix of symptoms.
Treatment Approach: Thresholds, Triggers, and Tailored Medication
When he suspects vestibular migraine, Dr. Ward starts with education. He explains how common the condition is, how migraine can produce non-headache symptoms, and introduces the idea of a migraine threshold.
Everyone has a threshold for triggering migraine activity, he says, and anyone could theoretically have a migraine under the right conditions. Triggers—such as poor sleep, stress, hormonal changes, and certain foods—push people closer to that threshold. Many common “healthy” foods, like avocados, citrus, and bananas, can act as triggers in susceptible individuals.
His treatment strategy aims to:
- Reduce triggers through:
- Sleep hygiene and consistent routines.
- Stress management.
- Identification and moderation of dietary triggers.
- Raise the threshold through:
- Evidence-backed supplements such as riboflavin, coenzyme Q10, and magnesium.
- If needed, daily preventive medications.
He typically gives lifestyle and supplement changes 8–10 weeks to take effect. If patients are still having frequent episodes—far more than his goal of “no more than two headache or dizziness days per month”—then he considers pharmacologic prevention.
Medication choice is guided by both migraine science and the patient’s broader health profile. In his practice, he often favors certain antidepressant/anti-anxiety agents, such as nortriptyline or venlafaxine, particularly because:
- Many patients with chronic dizziness experience heightened anxiety.
- Anxiety and dizziness can form a self-reinforcing loop, each amplifying the other.
- These medications can address both migraine prevention and anxiety symptoms.
He stresses the importance of starting at very low doses and titrating gradually, because people with migraine tend to be sensitive to medication changes. A careful, patient, and personalized approach tends to yield better tolerance and adherence.
Bridging the Gap: From Isolation to Informed Care
Taken together, Natanya’s experiences and Dr. Ward’s insights paint a picture that is both sobering and hopeful. Sobering, because vestibular migraine is common, often invisible, and deeply disruptive—affecting work, relationships, and one’s sense of safety in their own body. Hopeful, because with informed clinical care, lifestyle adjustments, and community resources, many people can significantly reduce their symptom burden.
Natanya’s journey underscores the power of validation, pacing, and self-compassion, while Dr. Ward’s perspective highlights the importance of education, careful diagnosis, and layered treatment that addresses both triggers and thresholds. For patients and clinicians alike, recognizing dizziness and sensory disturbances as core migraine symptoms—not an afterthought—is a crucial step toward better outcomes.
