My Journey: Reimagining Life with Vestibular Migraine (Part 1)
“On the surface, everything looks calm and “normal,” but beneath, vestibular migraine stirs like a serpent, ready to strike at any time with the violence of a tornado. It does not care about your job. It does not care about your friends. It does not care about your family. It does not care about your life.”
This past December marked seven years with a chronic illness for me. I have noticed lately that there are a few kinds of folks in my Facebook support groups for vestibular or other migraine conditions, or chronic illness in general. There are the newly diagnosed and the still searching for answers crowds. There are those who are two to four years in and have found treatments that work, and they have adapted their work and lives to manage their illness. I don’t fit into those groups. I got a diagnosis of vestibular migraine after two-and-a-half years of chronic dizziness. I still don’t work and treatments have only been partially effective. Seven years is a long time to live with the uncertainty of whether I will ever feel better or find the magic treatment.
On December 21, 2013, I woke up dizzy. I drove to Target and the grocery store looking for more tinsel for our Christmas tree and just couldn’t shake the strange feeling. It was as if my head was moving – not spinning, but the sensation was just as uncomfortable. On Monday, I made it into work for a few hours to file a brief and didn’t return for 3 months. One doctor suspected I was suffering from vestibular migraine but other doctors didn’t agree. I saw some improvement with the second medication I tried and returned to work part-time. But after 6 weeks of reading, writing and appearing in court, I got worse again and stopped working altogether.
I spent the next two years seeing about 20 specialists and trying several medications and alternative therapies. A few medications made me much worse and had terrible side effects. I lived with my mother for almost two months one summer because I was too sick to take care of myself while my husband was at work. Aside from the dizziness, I dealt with fatigue, headaches, stomachaches, and pressure in my head. Nothing was helping, and I was getting nowhere with a diagnosis.
“A pervasive dizziness hangs like a dark cloud between attacks of ferocious vertigo [and] constantly reminds you of that lurking serpent. The fear of it striking is paralyzing - what if it hits while you are driving? Or when you are in public? Or when there is no one around to help you? It shames you for missing your child’s recital. It haunts you with the guilt that you have failed as a spouse. It condemns you for being an inconvenience, or worse, a burden to others.”
In the spring of 2016, I asked my primary care doctor if I could try the medication I took in the beginning of my illness, when I was able to return to work for a few weeks. I reasoned that at the very least it would give me a break with a few weeks of reduced dizziness and, because I wasn’t working, maybe I would feel better longer. He agreed, and it worked. I felt better. The dizziness subsided somewhat. I went back to the ENT who suspected that I had vestibular migraine, and he told me that I was one of the most severe cases he’d ever seen. But, now that everything else had been ruled out, he was confident that I had vestibular migraine.
For the next several months, we increased the medication until I could no longer tolerate the side effects, including feeling very sedated when I woke up in the morning. My dizziness was now at low enough level that I could be comfortable most days. I could do things around the house, meet a friend for lunch, or go to a volunteer meeting. But periods of reading still made me much dizzier, and I was incredibly sensitive to motion. Some days I had increased dizziness for no apparent reason. Overall, I was hopeful for my recovery for the first time in awhile.
You can read Part 2 of my journey with vestibular migraine here.