Alicia’s Advocacy Story: Vestibular Migraine & Advocacy
Alicia’s advocacy story is written and told by Alicia M. 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’s Migraine Story
I suffered my first migraine attack when I was just 14 years old. My migraine attacks morphed throughout my late teens and into my early twenties. One morning in 2008 I woke with the worst vertigo I have ever had. I remember thinking, how would I function again? How could I possibly work feeling like this? How would I ever have a family? I visited many doctors and specialists over those first few months but still had very few answers.
I lost hope after this and felt alone. Every day my co-workers asked me if I was ok. I remember sitting at my desk trying to convince myself that the floor wasn’t moving below me. I would attend meetings feeling like I was not attached to my body. At that point, I didn’t have a formal diagnosis of vestibular migraine, but I had a lot of symptoms.
Rebound Headache Cycle
I worked hard to make changes to my lifestyle and diet, in addition to commencing medication and holistic reiki, and after 18 months I started to feel like myself again. Over the next few years, I slowly gained my life back: I got married, was able to fly and visit supermarkets again, and became pregnant.
Then, after the birth of my daughter 6 years ago, I fell into a rebound headache cycle, and my vestibular migraine went into over-drive. I felt lost and hopeless and turned to Instagram and the Facebook Migraine community to get me through some of my darkest hours. The feeling of not being able to support myself without having something in front of me was back again. My migraine attacks became so frequent I had to seek help. This was the commencement of my chronic migraine journey.
Now I am under the care of an amazing neurologist. I take a number of preventatives, I am having occipital nerve blocks, and I feel like I am finally in control of my migraine. I have spent the time educating my family and friends on my chronic neurological disease so that I can have supportive people in my life.
Navigating a chronic illness and being a wife and mother is challenging. But I am learning to be kinder to myself, give myself grace, and most importantly allow myself to live life just a little bit slower than everyone else. It’s taught me empathy and compassion, and it’s taught my 6-year-old compassion, empathy, and kindness beyond her years.
Alicia’s Advocacy Story
As migraine advocates, it’s so important that we raise awareness of this debilitating disease. I lived in silence for far too long, but now I am helping and giving people hope every day. The more we share our stories and empower others, the more hope we give to those who need it and the more hearts we touch.
I started mrs_migrainetastic on Instagram to offer guidance to others in the migraine community and to give hope that you can have a chronic illness, have a career, raise children and have a full life. I am living proof that, while it isn’t easy, it can be done.
Tell your Advocacy Story
Do you have an advocacy story to tell like Alicia’s advocacy story? 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.
Are you inspired by these advocacy stories and want to donate to Miles for Migraine? All or part of your donation may be tax-deductible as a charitable contribution. Please consult with your tax advisor. Funds raised help with our operational costs so that we can continue to produce races and youth camp events. Money raised through donations and race registrations goes directly to medical organizations researching migraine.
Migraine Advocate and member of the Miles for Migraine Patient Advisory Board, Sarah Rathsack recently attended Miles for Migraine Cleveland. This was Sarah’s 5th time attending one of our Walk, Run or Just Relax events. We thought it would be helpful for you to hear from other people with migraine about how they are getting…