My Experience Living With Vestibular Migraines + How I Manage

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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