From migraine patient to migraine advocate
Audrey eventually received a proper diagnosis and treatment plan that helped her manage her disease more effectively. She became involved with patient support groups and went on to fulfill her promise by establishing Ireland’s first migraine patient organization, the Migraine Association of Ireland (MAI).
Audrey is proud of how she has helped others in the migraine community. But she knows that this is her unique story and making the transition from migraine patient to migraine advocate isn’t as simple as picking yourself up and getting on with it. The understanding that there are so many people with migraine wanting, but unable, to get on with it is what fuels her.
“When you’ve seen doctor after doctor and when the medication isn’t effective, it’s impossible not to get disheartened. How do you pick yourself up? I think a lot of people can’t and they can start to feel helpless,” she says. “That’s why if you’re in a position to have a voice on behalf of those who are feeling so isolated in the darkened room, unable to advocate for themselves – never mind anyone else – you do it. Sometimes in helping others you help yourself.”
Migraine has been a lifelong companion for Audrey. As a child, she experienced abdominal migraine. In her teens, the headaches started. And in her late-20s, severe, debilitating migraine took hold. Audrey knew an attack was imminent if she woke with a sharp headache on one side of her head. Soon after, blinding pain, nausea, vomiting, diarrhea, confusion, light and sound sensitivity would set in.
After the initial attack subsided, Audrey often experienced several days of lingering symptoms. The postdrome period, as it is known, occurs after the end of the headache phase. Not every person with migraine experiences postdrome, but for some it can be as impactful as the headache itself.⁷ “Brain fog, no energy – you feel as if you’re absolutely washed out,” Audrey says of her postdrome period.
Audrey lived in a vicious migraine cycle into her 30s. Eventually, she made her way to a headache specialist in England (Ireland had none at that time) and received a diagnosis of Basilar migraine, also known as migraine with brainstem aura.
She also joined the British Migraine Association and gained a sense of community. She started receiving the group’s newsletter in the mail, and it proved to be a lifeline. “It meant so much because it didn’t matter how sick or lonely I was, I knew that out there were other people out there who understood and were putting their best research brains to work trying to solve what I thought was an unsolvable problem,” she says. “I wanted to bring the same to
Ireland, to help people understand how to persist when they were dismissed by
healthcare professionals, obtain an accurate diagnosis and advocate for one’s
self with new treatment options.”