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Brainy-Yak and Other Missed Signals

The summer I was six years old should have been filled with only fond memories of my father's promotion ceremony. I had dressed in what was then the height of 1970s style – a sweet little pink and maroon checkered dress that made me feel like a fashion icon. I remember the excitement building as we drove to the ceremony, and then, without warning, that familiar wave of nausea overtook me.

The car windows were immediately rolled down, but it was too late. My precious dress became the casualty of what everyone dismissed as "just carsickness." I was devastated – not just physically ill, but heartbroken that I had ruined such an important day (and my beloved outfit).

What none of us knew then was that this wasn't simply an unfortunate childhood affliction I would outgrow. It was actually the first signal flare of what would eventually be diagnosed as vestibular migraine – a neurological condition that would weave itself through the fabric of my life in ways none of us could have anticipated.

The Early Warning Signs

Looking back now, the evidence was everywhere. At age five, while hospitalized for surgical removal of a hip tumor, I became something of a curiosity to the nursing staff. Unlike every other child on the pediatric floor, I refused the kid-friendly meals they brought around. Hot dogs and sodas – staples of childhood cuisine – were my nemeses.

"She won't eat a hot dog?" a nurse asked my mother incredulously. "I've never seen a kid turn down a hot dog."

Fortunately, my mom was completely supportive of me not eating what she viewed as junk food, and requested adult meals instead. I tried to explain that eating hot dogs made my mouth feel funny in a bad way and the soda hurt my mouth, nose, and throat. These weren't the complaints of a difficult child – they were genuine physiological responses - impossible for a five year old to truly articulate, and unknown to doctors - that would later make perfect sense in the context of my diagnosis.

No one had any idea in 1977 that I was experiencing the early manifestations of a nervous system that processed certain stimuli differently – a hypersensitivity that is frequently reported among those who develop vestibular migraine later in life.

The Teenage Misdiagnosis

When puberty arrived, it brought with it two unexpected changes: my straight hair suddenly developed curls (a hormonal shift that bamboozled me and confounded my morning readiness routine), and I began experiencing what would eventually be recognized as classic migraines. The timing wasn't coincidental – hormonal fluctuations are well-documented triggers for migraine conditions.

What followed, however, was not immediate clarity but years of confusion and misdiagnosis. When I described my symptoms to doctors – the intense headaches accompanied by facial pain so severe that my temples, eyes, forehead, cheekbones, and jaw were tender to the touch – they repeatedly diagnosed me with sinus infections. The sensation that my eyes were bulging out of my head seemed to support this diagnosis, at least on the surface.

"It's a sinus infection," became a refrain I heard throughout my teenage years and well into young adulthood. Antibiotics were prescribed, offering no relief because they were treating the wrong condition entirely. This misdiagnosis is startlingly common – the similarity between migraine pain patterns and sinus symptoms leads many sufferers down a similar path of confusion and inappropriate treatment.

What neither I nor my doctors understood at the time was that these distinctive facial pain patterns were not caused by sinus inflammation at all. They were manifestations of trigeminovascular activation – the involvement of the trigeminal nerve in the migraine process. This same nerve pathway was responsible for the pain when consuming carbonated beverages or nitrate-containing foods like hot dogs. The trigeminal nerve, with its three major branches spreading across the face, was central to my migraine experience, creating pain patterns that mimicked sinus issues.

The traditional migraine symptoms were certainly there – excruciating head pain, sensitivity to light and sound, and the need to retreat to a dark, quiet room until the storm passed. But these symptoms were accompanied by this distinctive facial component that would confound proper diagnosis. I learned to manage as best I could, accepting these episodes as an unwelcome but expected part of my life.

I was eventually diagnosed with migraines in my late adolescence, but didn't receive effective care for another 15 years. My college routine consisted of my roommate (a wonderful person and good friend) waking me up every morning with a cup of coffee and acetaminophen. She's really the only reason I was able to get out of bed every day1, Eventually, I learned about food and environmental triggers, and started taking preventative measures, significantly improving my day to day life.

To this day, however, when I eat nitrates I still feel like I've been punched in the roof of the mouth, and drinking carbonated beverages is like drinking liquid razor blades. I only learned a couple of years ago that most people find carbonated beverages delightfully refreshing, and not painful at all. Likewise, they don't feel like the roof of their mouth is experiencing a tiny but violent earthquake when they eat corned beef. I truly thought consuming these things was just as excruciating for everyone, but for whatever bizarre reason, everyone but me enjoyed the pain.

What I also didn't realize until recently was that my body was gradually setting the stage for something more complex, a condition that would manifest when my hormones underwent their next major shift decades later. And I didn't understand that there was a direct neurological connection between my childhood sensitivities, these teenage "sinus infections," and what would eventually emerge as full-blown vestibular migraine.

The Perimenopausal Pivot

The arrival of perimenopause in my early fifties marked another hormonal watershed – and with it came symptoms that defied my previous understanding of migraines. There was still head and facial pain, but now there were new, frightening experiences: sudden dizziness that made the world seem to spin or tilt, a persistent feeling of the floor dropping away even while standing on solid ground, and pain that could be triggered by something as mundane as the sound of my spouse turning on the kitchen faucet.

I found myself clutching walls as I walked down hallways, canceling social engagements because I couldn't predict when the next wave would hit, and feeling increasingly isolated by symptoms that were difficult to describe to others. "I'm dizzy" barely scratched the surface.

It took multiple consultations, a process that spanned months, before my headache specialist finally was able to help me connect the dots between my childhood sensitivities, my traditional migraines, and these new vestibular symptoms. "Vestibular migraine," she explained, "often emerges or intensifies during hormonal transitions like perimenopause."

The diagnosis was simultaneously validating and enraging. Suddenly, the seemingly disconnected threads of my medical history formed a coherent pattern. My childhood motion sickness wasn't just a painful inconvenience – it was an early indication of how my brain processed movement. My strange food sensitivities weren't peculiar preferences – they were legitimate neurological responses to substances that act as migraine triggers.

Understanding Vestibular Migraine

Vestibular migraine represents a distinct subset of migraine disease that affects the vestibular system – the complex network responsible for our sense of balance and spatial orientation. Like classic migraines that can manifest a myriad of symptoms with no headache, vestibular migraines can manifest predominantly as episodes of vertigo, dizziness, imbalance, and spatial disorientation, sometimes with little or no headache at all.

What makes vestibular migraine particularly challenging is its protean nature. Symptoms can be different for everyone, and can overlap with several other conditions. It's a diagnosis of exclusion and symptomatology; there's no blood test for it.

For me, understanding that all these symptoms stemmed from a single condition was the first step toward regaining some control over my life. Learning that my childhood sensitivities were connected to my adult diagnosis helped make sense of experiences that had previously seemed random - or psychosomatic.

When you have lifelong experiences that no one else seems to understand, it's very easy to gaslight yourself into thinking none of it is real. I'm still working on that,

The Connection Between Childhood Symptoms and Adult Diagnosis

Research increasingly supports what my journey illustrates: many children who experience seemingly normal albeit extreme versions of childhood "quirks" are displaying early signs of migraine vulnerability.

Motion sickness, particularly, stands out as one of the strongest predictors of future migraine disorders. The severe carsickness that ruined the day of my father's ceremony (at least it did for me, I suspect my family was so used to my barfing they forgot it even happened immediately after clean up) was actually my migraine brain reacting to conflicting sensory inputs about motion and position – a vulnerability that would later manifest more dramatically in adulthood.

Living with Vestibular Migraine

Navigating life with vestibular migraine requires a multifaceted approach that addresses both the underlying neurological condition and its myriad triggers. For me, this has meant:

Medication protocols that target both prevention and acute episodes

Dietary modifications that eliminate known triggers

Stress management techniques, since emotional stress is a potent trigger

Sleep hygiene practices to ensure consistent, quality rest

Manual therapies such as massage, acupuncture, and craniosacral therapy.

Careful attention to hormonal fluctuations and working with my doctor on potential hormonal treatments during perimenopause

Perhaps most importantly, it has meant accepting that my neurological makeup is not defective, just differently calibrated. The same sensitivity that makes me vulnerable to vestibular symptoms also makes me perceptive to subtle environmental changes and attuned to details others might miss.

I have the nose of a bloodhound, and can smell things no one else can. I know now those aren't the proverbial "smelling toast" stroke signals, but genuine abilities. Of course, depending on the smell, sometimes it's good, sometimes not so fun.

Finding Meaning in the Journey

Looking back at that little girl in the pink and maroon dress, I wish I could tell her that her experience wasn't just an upsetting incident but an important clue to understanding her body. I wish someone could have explained to the puzzled five-year-old in the hospital that her food sensitivities weren't strange but significant. Most of all, I wish my teenage self had known that the migraine journey was just beginning and would require compassion, time, and understanding rather than frustration.

Vestibular migraine, like many chronic conditions, doesn't just happen overnight. It reveals itself gradually, leaving breadcrumbs throughout a lifetime that only make sense when viewed in retrospect. Looking back, I can see how these conditions exist on a continuum, evolving and transforming as our bodies change.

For those experiencing similar symptoms, whether you're the parent of a carsick child or an adult suddenly grappling with unexplained dizziness, know that these experiences aren't random. They're meaningful data points that deserve attention and investigation. The connections between childhood sensitivities and adult neurological conditions are becoming increasingly clear to medical science, even if they're not yet common knowledge.

My rollercoaster ride with vestibular migraine is still full of twists and turns. Some days, it feels like the ground is practicing for a dramatic exit and I'm gravity's reluctant assistant, while on other days, I can prance through life, virtually symptom-free and ready to take on the world. After over 50 years of fine-tuning my migraine management skills, I'm a maestro, orchestrating what once felt like a collection of discordant notes into a weird symphony.

Source: Brainy-Yak and Other Missed Signals

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