Alicia Wolf: Reclaiming My Life, One Recipe At A Time

Alicia Wolf’s advocacy story is written and told by Alicia Wolf and edited by Miles for Migraine team.  Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.

Alicia Wolf’s Vestibular Migraine Story

I was on vacation in 2017 when I began to experience a mild lightheaded sensation. I ignored it initially, but it kept getting worse. In my car I slammed on the breaks to stop, only to realize that I was already in the park: I felt like I was moving when I was sitting perfectly still. The lightheadedness continued, eventually getting to the point where I couldn’t drive or work, forcing me to take a leave of absence from my job. 

As I went through several doctors and diagnoses without any answers, my ability to function was declining quickly. I was depressed. How could I be 30 years old, newly married, and lose all my ability to function normally? I once had such a quick brain, and now I struggled to find the right words for even basic conversation. Finally, Mayo Clinic gave me my answer: I had vestibular migraines. I denied it – I rarely ever got headaches, and didn’t migraine include headaches? They told me about Migraine Associated Vertigo (MAV), which affects the system that is responsible for balance. I began working with my wonderful neurologist on a treatment plan focused on supplements and limited medication. 

Alicia Wolf Reclaims her Life

The medications we tried worked well, and within about 3 months I was able to begin weaning off them. But those three months weren’t easy. My company made it extremely difficult to work through my illness and I had to leave. Although that lifted some stress, I was angry I had to give up my career for this illness. I worried people would look at me and think I was making it all up. If I was so sick, why did I look the same? Migraine is truly an invisible illness. I told myself I would not let this rule my life, and I made an effort every day to do something that would help, whether it was finding a new exercise I enjoyed or trying vestibular therapy, massage, or meditation. I wrote down and achieved small goals, like reading a book or taking a class. 

Advocacy: One Recipe at a Time

One of the things I tried was a diet limiting possible migraine triggers. I cried for my first two weeks! I desperately missed nuts and avocado. Tired of the restriction,  one day I ate yogurt and within five minutes I became dizzy. I couldn’t believe that something I used to eat every day was contributing to my vestibular migraine, and knew I had to continue with the diet. Finding recipes was a challenge though, so I created TheDizzyCook.com, a website with migraine-trigger-free recipes and life tips to make vestibular disorder sufferers’ lives a little easier. 

With the help of diet, supplements, vestibular therapy, and ballet, I feel like a normal girl most days. I can drive, I can work, I can even remember the words I used to forget so easily! I’ve become so much stronger than I could have ever imagined. I know if I can get through this, I can get through anything.

Tell your Advocacy Story

Do you have an advocacy story to tell like Alicia Wolf? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event. Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.

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