Talisa’s story: You are your Best Advocate
Talisa’s story is written and told by Talisa 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.
I remember opening my eyes the morning of my first attack. Everything felt unsteady like I was on a rocking boat. I had an immense amount of pressure on the back of my head with a pain that ran down my neck. My ears felt full, with loud ringing. My vision was completely distorted. Then, my brain felt like it had been cloaked with heavy fog and I couldn’t think clearly anymore. It was like something unknown had a viselike grip around my head. At first, I had attributed my symptoms to stress after a painful event and a bad reaction to a pain medication I had taken the night before. I thought to myself, “This is just for the day; once I sleep this off, I’ll go back to normal.” Little did I know what I was in for.
Days went by and my symptoms seemed to progress. I was constantly dizzy and extremely fatigued. My vision remained distorted, with blind spots and a static-like brightness. The best analogy I can think of is when your eyes have to adjust after a bright flash from a camera. I couldn’t be in overstimulating environments anymore because I could no longer properly process my surroundings. Even going to the grocery store felt overwhelming, with the bright fluorescent lights and all the aisles packed with products and people; it was too much. I stopped driving since it was tough for me to gauge how fast other vehicles were moving. I was also experiencing heavy derealization and depersonalization. It felt like I was in a never-ending, hazy nightmare. I thought I was losing my mind since this was 24/7 and I had no idea why this was happening.
Looking for Answers
Ended up in the ER, I had hopes of finding some relief and answers, but to no avail. I thought my psyche was headed down a dark path of no return and I was extremely depressed. I went from being an active person who worked out every day to barely being able to walk down a block. That same week, I saw an ENT who was certain I was just experiencing a lot of stress and anxiety. Without a thorough investigation, I wasn’t going to accept that answer. I was determined to get my life back.
After more research, I decided to see a Neurotologist who specializes in vestibular disorders. After an MRI and a series of vestibular tests, I was diagnosed with Chronic Vestibular Migraine. I am currently on medication and have seen a tremendous improvement. I feel like I’m getting my life back and I am able to drive again and do most activities. Going into remission is possible, I believe.
Advocate for Yourself
My advice to my fellow friends with migraine: Don’t stop digging until you get the help you need! Do your research, ask questions, get the testing done that you feel you need for a definitive diagnosis. There shouldn’t be any questions left unanswered when it comes to your health. Advocate for yourself and never give up!
Tell your Advocacy Story
Do you have an advocacy story to tell like Talisa’s 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.
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…