Ruled, but not ruined, by migraine

Lying on the floor of her darkened bathroom, paralyzed by searing head pain, nausea and diarrhea, Audrey Craven of Dublin, Ireland, felt as isolated as one can feel. She wanted to be with her three young children, make dinner for her family, participate in life. But the migraine kept her on the bathroom floor, unable to move, speak or think.

There, on the cool floor tiles, Audrey understood that her symptoms would eventually improve; the fatigue and brain fog she felt during the “migraine hangover” days would recede; and there would come a time when she finally felt like herself again. And then, after just a few days, the whole thing would start up again. The dread of that repeating cycle sometimes made her feel lost and alone in her migraine. “That’s the killer. Because you’re just coming through, you’re just coming back on your feet and you know you will have to go through it again,” she says. 

At that time, there were no online support groups and no migraine patient organizations in Ireland. Her family was sympathetic but didn’t fully understand the severity of her symptoms. Her friends were supportive, but sometimes implied she could do more to power through her headache. And the medical community was often downright dismissive. Audrey longed to connect with someone who understood what she was going through. Someone who could help her see a way off the bathroom floor.

“You feel so disempowered with this hidden disability that is underdiagnosed and undertreated,” she says. “When I was in that very dark space and place, I made a little promise. If I ever got a handle on my own migraine, I’d do something about the dearth of information and support for people like me.” 

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.”

Finding community

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.”

Information is power

Since founding MAI, Audrey became a prominent advocate for the global migraine community, serving as president of the European Headache Alliance and the European Federation of Neurological Association; speaking at patient summits; and sitting on the executive committee of the International Headache Society’s Global Patient Advocacy Coalition.

She is particularly passionate about educating people on the importance of peer-to-peer support programs and the role it can have in helping
people with migraine develop coping skills. “The value of peer-to-peer support on this journey cannot be over-estimated or easily quantified,” she says. “Someone who walks alongside you, who truly understands the burden is very powerful and uplifting. Building trust is vital when despair and despondency rear their ugly heads and resilience is low.”

When discussing her migraine advocacy, Audrey is quick to clarify that the leadership is not anything she wished for – and she maintains her Irish wit and sense of humor about it. “Someone said to me, ‘you were sent migraine for a reason.’ And I said, ‘well, it’s a reason I could do without.’”

She decided some time ago to accept her disease, rather than be defeated by it. “Migraine may rule my life, but it doesn’t ruin it,” she explains. And she wants others to find similar hope through increased understanding of the disease. “We have to help people understand what is happening in their brain. We need to encourage them that things can get better. Just look at the science in the last few years – the hope is in the research developments and the science,” she says. “People need access to all of that. An informed patient is an empowered patient.”