If you’ve been experiencing migraine symptoms for years, you might have asked yourself: “Is this really as good as it gets for my symptoms?” Along the way, you’ve probably built up a system — routines, workarounds, maybe even a go-to dark room. But that doesn’t always mean you’ve been shown what may be possible with migraine care.
Migraine is a complex neurological disorder, not just a headache. In fact, there’s a significant lack of awareness and recognition around the risk of disease progression, migraine’s holistic impact, and the need to redefine care.
That’s the message behind Raise the Bar, an initiative from Lundbeck and six migraine patient advocacy organizations focused on empowering people with migraine to expect more from their care. And it’s a message that resonates deeply with Paula Dumas, president of the World Health Education Foundation – one of the partnering organizations – and executive producer of the Migraine World Summit, who has lived with migraine since childhood.
“So many of us don’t realize we deserve better,” she says. “I did the math one day and estimated I’d lost a decade’s worth of days to migraine attacks — countless days and nights missing out on aspects of life. We pay the price in our relationships, our work, and even our wallets.”
Migraine is one of the most disabling neurological conditions in the world, according to the World Health Organization, yet many people living with migraine continue to push through “just okay” care. The good news: the landscape of migraine care has advanced significantly in recent years. With new management approaches, and a growing body of research, there are more options to help you in your migraine journey than ever before. But taking advantage of these advances often starts with one thing: advocating for yourself.
To help people living with migraine do just that, Lundbeck and migraine patient advocacy organizations came together to create a Patient Empowerment Guide: a free online toolkit of resources designed to help patients understand migraine disease and advocate for better care at their next doctor’s appointment.
Here are three steps from the guide to get started.
1. Ask for a specialist referral.
The complexities of chronic migraine often necessitate specialized care and a deep understanding of the condition. If your current care isn’t providing adequate relief, it may be time to ask for a referral to a headache specialist or neurologist. A specialist can offer a more comprehensive evaluation and familiarity with the full range of diagnostic and management options available today.
2. Create a customized care plan.
Migraine is not a one-size-fits-all condition. A care plan that works well for someone else may not work for you, and that’s okay. It’s also important to talk to your doctor if you experience changes in treatment effectiveness or side effects become too difficult to manage.
“I encourage people to think of themselves as the CEO of their own health,” Paula says, “actively managing their condition in partnership with their care team, staying educated, and always adding new tools to their toolkit.”
Working with your doctor to develop a personalized approach that accounts for your specific triggers, patterns, and goal settings beyond headache days, focused on quality of life, is one of the most impactful things you can do.
3. Make the most of your doctor’s appointments.
Many people leave doctor’s appointments wishing they’d said more. Coming prepared — with a symptom diary, a list of questions, and a clear sense of what is and what isn’t working — can make a difference.
“Education alongside what your doctor recommends is the best prescription,” Paula says.
The Patient Empowerment Guide includes ready-to-use tools to help you prepare for appointments and communicate more effectively with your care team.
Better migraine care doesn’t happen overnight, but it starts with you. As Paula puts it: “We are not our disease. We are brave, courageous—and dare I say, mighty.”
Your experiences are valid, your needs matter, and the progress happening in migraine care is real and within reach.
To access the Patient Empowerment Guide and learn more about the Raise the Bar initiative, visit the guide here.
“I participated in this interview without compensation. The content is sponsored by Lundbeck. I am not promoting or recommending any product; only sharing lived experience, education, or perspective as part of the Raise the Bar campaign.” – Paula Dumas
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