Advocacy Spotlight: Alicia Wolf

Alicia Wolf was sitting in the driver’s seat of her parked car filled with a bunch of her co-workers when she felt like she was being propelled forward. It was that moment that solidified that, in addition to the months of dizziness she had been experiencing, that she needed medical intervention. She saw seven or eight different doctors, most dismissing her symptoms as anxiety or stress, before receiving the diagnosis of vestibular migraine. According to Alicia, the delay in diagnosis is quite common in the vestibular community.

But there was a problem, even though she now had a name for what she had been experiencing, when Alicia went looking for resources, there wasn’t a lot out there. No place for people to connect, and no place where people were telling their stories. One of the areas that Alicia was really interested in, a modified headache diet for people with vestibular, didn’t exist. She was dizzy and suffering from brain fog and needed someone to lay out exactly what ingredients to buy and what to do with them. Anything she did find was was bland and not particularly appetizing. So, since she already liked to cook, she set out to create a resource for those who were going through the same thing. And The Dizzy Cook was born.

Alicia’s particular form of advocacy is tastier than most, but advocacy it most certainly is. She creates recipes for those in the vestibular community, because as she puts it “you don’t want to spend a lot of time online when you are already dizzy.” And her recipes are also appropriate for anyone dealing with migraine disease. Each one gives substitutions for foods that may be problematic for some. Earlier this year she came out with an entire cookbook filled with tasty recipes and lifestyle tips for managing migraine.

When talking to Alicia about advocacy, I asked how it had changed her life. She talked about the loneliness at the beginning of her diagnosis and how she had looked to connect with others going through the same thing and couldn’t find them, so she realized she needed to start telling her story. I thought, “If I’m struggling surely other people are.” So she began sharing her story and getting involved with writing on Migraine Strong, Migraine Again, My Chronic Brain and even creating community events in Dallas, where she lives, for Miles for Migraine. The more she shared her story the more people she met and the less alone she felt.

And she was getting the message out about vestibular migraine.

Right now Alicia is mostly symptom-free due in part to diet combined with supplements exercise and massage, and her passion for advocacy has only increased. She speaks on vestibular migraine frequently and continues to help others who are finding their way at the beginning of their migraine journeys.

“Advocacy is my life, it’s my identity—[I’ve] become so passionate about the cause. My whole day is spent trying to getting the word out about vestibular migraine and trying to help people who want to create eating plans.

It means everything to me. I am more fulfilled now than I ever was before.”

For more information about Alicia Wolf visit the dizzycook.com or follow @thedizzycook on social media

by Jenn Heater
Director of Resources and Advocacy, My Chronic Brain