Advice from People Living with Migraine

Tips for managing this disease from those who live with it

People living with migraine are no stranger to well-intentioned but unhelpful advice. Such words often come from friends and family who don’t live with the disease. To provide tried and true advice from those who know what migraine is like, we asked our Facebook support group members to share one piece of advice they would give to another person living with migraine. Group members shared their thoughts on believing in themselves, taking initiative and finding comfort in the community.

What advice do you have for another person living with migraine?

Trust Your Instincts

Whether it is a patient-provider relationship or a suggestion you are unsure of, trust your instincts. Living with migraine often means needing to stand up for yourself and your health, making self-advocacy a crucial part of your healthcare journey. A little bit of self-assurance can go a long way, so trust that you can take on any situation.

For member Lee Ann, it has taken appointments with four different physicians to find a doctor who built the trust necessary for a healthy patient-provider relationship. It can be discouraging to start over with a new physician. But you should trust your instincts and do what is best for your health. Lee Ann encourages her peers to look for a doctor who is a good fit, saying, “You will know when it’s right.”

Never Stop Learning

Navigating life with migraine isn’t always easy, so educate yourself and stay on top of new developments. With headache medicine research evolving rapidly, there is so much to learn about living with this disease. People may find comfort in having the words to share the feelings that come along with their migraine attacks. Being able to describe the timeline of an attack or explain migraine to someone can help those with migraine feel confident in advocating for themselves by educating others. Afterall, knowledge is power.

Not only can learning about migraine help give you the words to describe what you go through, but it also helps limit some of the surprises. For example, looking at medication options may be less scary when a patient understands the benefits as well as the potential side effects. “Understand your treatment options and how they work with your body and lifestyle,” said Move Against Migraine Moderator Chris T. “Know that your migraine may change and morph over time.” We host a library of migraine resources on our website to help you stay informed.

Remember You’re Not Alone

Migraine can make you feel alone. With symptoms causing sensitivity to light and sound in addition to nausea, migraine attacks may pull patients out of work, school or social events. But there are over 39 million people in the United States living with this disease. So know that you aren’t alone in your pain.

One way to feel less alone with migraine is to share your story with others. Our Move Against Migraine support group is a space for those living with or supporting someone with this disease to find peace and comfort as part of an accepting group. If you prefer starting your own group with the people in your life, you can use our guide for creating a support group in-person or virtually. We also collect migraine stories on our website to share with the community.

Member Ashley V. explains she has given up some activities during her migraine journey but shares a bit of hope. “Find new hobbies that don’t aggravate your migraine attacks,” she said. “Even though you lose some things you loved, maybe things can go from ‘worse’ to ‘different.’” Plus, new activities may lead you to find others who live with migraine, so keep an open mind.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. With this in mind, AMF founded Move Against Migraine, a Facebook group a mission to provide support and solutions for people with migraine and their loved ones. Join today to learn more. You can also share your story to show the world what migraine looks like and how it affects people every day. Together, we are as relentless as migraine.