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My Migraine Diagnosis Turned My World Upside Down — Then I Found A Whole New Sense Of Purpose

Alicia Wolf
mbg Contributing Writer By Alicia Wolf
mbg Contributing Writer
Alicia Wolf is the Owner of The Dizzy Cook, a diet and lifestyle website for anyone with migraine, and an Ambassador for the Vestibular Disorder Association.
invisible illness portrait Alicia
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While some health issues are visible to the outside world, many people face chronic conditions that don't have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen's new series, we're giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

Everything in my life seemed to be going perfectly. I had a great job, my husband and I had just moved, and we were looking to buy a house. Then, after returning from a long trip to Japan, Thailand, and Hong Kong, I started having mild dizziness that would come and go, making me feel lightheaded. I didn't think much of it at the time, but that was the beginning of my world turning upside down.

My symptoms came out of nowhere — and no one had answers.

I saw my primary care provider (PCP) to address the dizziness, and she wrote it off as an ear infection or cold, nothing serious. When the lightheadedness continued, I assumed it was jet lag or stress from work. But then it kept getting worse, to the point it was distracting and made it difficult for me to do my job. My PCP tried a couple of different treatments, including a round of steroids, which ultimately made me feel even more awful. So she referred me to an ENT who ran a slew of tests but wasn't sure what was going on either—there wasn't anything textbook about my symptoms.

Then the ENT referred me out to a chiropractic clinic that focused on vestibular rehab, where they concluded I had a weakness in my inner ear but (once again) weren't quite sure what it was from. They thought it may be vestibular neuritis, an inner ear disorder that causes dizziness.

I later went to Dallas to see the best neurologist in the country. His only input? I was anxious and stressed. But I knew it was something more.

I remember one day I was sitting in my parked car, after taking my co-workers to lunch. Suddenly, I slammed on my brakes because it felt like the car was moving forward—but we were totally sitting still, and everyone looked at me like I was nuts. Incidents like this kept happening. It made me too nervous to drive, and I felt like I was losing my mind.

Eventually, I could hardly look at the computer without vomiting from dizziness, and things were just progressively getting worse, making it impossible to do my job. However, since I didn't have an official diagnosis, no one would approve my medical leave paperwork. My ENT didn't want to sign off on it because he didn't see anything wrong with me. When every expert is telling you nothing is wrong, and you know that's not the case, you do start to question your sanity. I truly felt so unseen, like I wasn't worth anyone's time and effort.

In a desperate attempt, I posted a plea on Facebook, asking if anyone else had experienced symptoms like mine: lightheadedness, dizziness, vertigo, and the feeling of walking on clouds or marshmallows all the time. Someone suggested reaching out to an expert in Dallas fondly referred to as the "Dizzy Doctor." The only problem? He had a 10-month-long waiting list.

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I finally got a diagnosis, and it wasn't at all what I expected.

I knew I couldn't wait 10 months for potential help. I had already lost my life, and I would certainly lose my job. At that point in time, I spent all day resting on the couch and fighting with insurance on the phone. I couldn't imagine that this would be how I would live out the rest of my days.

Fortunately, one of my friends had connections to the Mayo Clinic in Arizona, and I was able to get an appointment. So my husband and I drove 16 hours to the clinic, I went through two days of testing, and then the doctor walked in with his answer. "Oh, you have migraines," he told me plainly. I was so confused because I didn't get head pain. But he explained that there are different types of migraines.

He shared that mine is known as a vestibular migraine, and it can present with or without headaches. Instead, you get other symptoms of migraine that can include light sensitivity, vertigo, dizziness, nausea, brain fog, fatigue, or even difficulty finding words. Plus, there's a vestibular component to it, where it affects your inner ear, and you get off balance. The triggers can range from lack of sleep to stress, menstrual cycle, bright lights, or food sensitivities.

Then he explained that since it's such a new type of migraine, he wasn't equipped to treat it. In fact, there were only about 10 doctors in the country at the time who specialize in vestibular migraine. That's right: 10.

One of those experts was the renowned "Dizzy Doctor"—and thanks to a last-minute cancellation, I was able to get an appointment. He has been my neurologist ever since.

Now, I follow a very strategic diet plan and lifestyle.

Together with my doctor, we started working toward a treatment plan that could actually work for me. Now, this involves a combination of the gammaCore device—which is noninvasive vagus nerve stimulation(nVNS)—along with supplements like magnesium, B2 vitamins, and more. I additionally incorporate a number of other natural treatments such as meditation, acupressure, cupping, and craniosacral therapy (CST).

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Nutrition is also a significant part of my treatment strategy, and I learned a lot about migraine diets through my experience. In general, the approach focuses on eliminating potential triggers and seeing what has an impact on symptoms. For instance, a lot of people have sensitivities to MSG, or just glutamate in general—which is found in foods like mushrooms, Parmesan cheese, soy sauce, and even nutritional yeast. Some doctors will tell people with migraines to avoid wine, chocolate, caffeine, or any aged foods that contain the amino acid tyramine.

Of course, everyone is different, and it takes trial and error to figure out what might be aggravating symptoms. In my case, I discovered two of my big triggers were nuts and yogurt. Onions and avocado were also issues for me—which was a total bummer because I love guacamole! But instead of dwelling on foods I couldn't eat, I started paying attention to what I could incorporate and found there truly was a lot of opportunity. Then I began cooking more at home and getting creative with my recipes and meals.

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After my experience, I wanted to help others feel less alone.

Even once I found a treatment plan, it still took over a year and a half to have dizzy-free moments. I ultimately left my job, and I felt very lost and worthless. I could feel depression starting to set in, and I knew I needed something to reshape my focus and make me feel worthwhile.

It occurred to me that there was a huge need in the community for people who were experiencing symptoms like mine. There weren't any resources for people with vestibular migraine, or migraine diets. So I set out to create a fun, accessible blog with a specific goal in mind: I wanted to share simple, migraine-friendly recipes, along with resources and information for others with vestibular migraine.

So six years ago, I bought a website, taught myself photography, learned how to write recipes, and I researched and spoke with doctors about migraine treatments, particularly for vestibular migraine. Then, my blog The Dizzy Cook was born. It was a great way to pivot my energy and feel like I had something to work toward—I was helping people, and it gave me purpose.

Now, I probably refer five to 10 people a day to my doctor, solely based on emails I get from readers. It became clear to me that there are a lot of people out there with the same symptoms, who get written off as anxious, depressed, or sleep-deprived—rather than getting to the root of the issue.

What I want people to understand about vestibular migraine.

My migraine story, as wild as it may sound, is not unique. It's an extremely common experience in the migraine community, and it breaks my heart. Awareness is certainly getting better, but it still has a long way to go.

Even with my own loved ones, it's been challenging to convey what I'm going through—because my symptoms aren't visible. My husband didn't really get it until I started taking him to my neurologist appointments, and my parents didn't know how hard it was until they read my book. When my friends see me now, they'll say I look so good—but they don't always realize I'm still dealing with a chronic illness because I appear "normal."

But even if no one can see it, vestibular migraine affect everyday life. I'm still taking my medications and supplements, cooking certain meals, doing my meditations, wearing my migraine glasses so I don't get dizzy spells at the computer—the list goes on.

When I fly, I board early to make sure I'm in a certain seat on the airplane—in the middle of the plane, an aisle seat—to minimize my chances of a vertigo attack. However, since I look young and healthy, people often give me dirty looks—but that's just something I've learned to deal with.

That's one of the most challenging aspects, beyond the symptoms themselves: People don't take migraine seriously as a chronic illness and assume it's just a headache you can brush off. Unless you've faced it yourself, it's hard to understand just how debilitating this condition can actually be. If this is an experience you know all too well, just know that you're not alone.

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