Migraine is a neurological condition that can cause intense headaches and a range of other symptoms. You might feel exhausted and irritable, have trouble talking, feel dizzy, and experience throbbing pain in your head.
Migraine affects 39 million people in the United States, according to the Migraine Research Foundation. Even though it’s a common condition, many people with migraine experience loneliness, which can make symptoms even worse.
Tapping into a community of people with this condition can help you feel less alone, though. By joining a migraine support group and bolstering your current network, you can feel more understood.
Read on the learn how to find a migraine support group, along with other ways to build a solid support system.
Joining a migraine support group can be helpful in many ways. For starters, “having somebody just ‘get it’ without having to start your story from scratch is invaluable,” said Ashley Ellis, PharmD, clinical director of Compwell, who specializes in preventive care for people with chronic conditions, including migraine.
A migraine support group can provide a judgment-free space for people to share frustrations and challenges. Rather than dismissing or diminishing how the condition affects your life, a support group can help validate your symptoms, feelings, and concerns.
The benefits of joining a migraine support group aren’t just emotional, though. Discussions within these groups can help you learn about the latest treatments and tips for reducing migraine attacks. Plus, if you’re looking for a new doctor, you can ask your migraine support group for recommendations.
Migraine support groups come in a variety of formats. Some are online communities you can participate in on your own schedule, while others host weekly in-person or online meetings.
Here are some migraine support groups to consider:
- Miles for Migraine, a nonprofit organization that aims to improve the lives of people with migraine and headache disorders, offers virtual support programs.
- Pain Connection, a program from the U.S. Pain Foundation, offers weekly support sessions via video conference.
- The Migraine Associated Vertigo Community is an online forum for people to talk about their symptoms, treatments, and other related topics.
Social media is another powerful way to connect with other people with migraine. Ellis recommends searching for #migraine or #migraineawareness on social media platforms to join discussions about the condition.
You also might look into these migraine support groups on Facebook:
- Chronic Daily Headache and Migraine Support Group is a support group for people (and their loved ones) with migraine and chronic headaches.
- Move Against Migraine, hosted by the American Migraine Foundation, is run by doctors and migraine experts who share information on clinical trials, treatments, and other helpful resources.
- Chronic Migraine Awareness is another support group option for people with migraine. It offers a variety of sub-groups focused to help specific people, such as moms, men, and military families, connect with each other.
- The Daily Migraine Online Support Group is for people who have migraines, chronic pain, and other co-occurring conditions.
- Hope for Migraine offers discussions on migraine treatments and clinical trials.
- New Chronic Migraine Support Group provides a “welcoming and understanding environment” for people with migraine worldwide.
- Women’s Migraine Support Group is a migraine support group for women to share concerns and receive support.
To get the most benefits from a migraine support group, it’s important to find a community that feels like the right fit for you.
Start by looking for messages or missions that resonate with you. Then, see if they have administrators who encourage respectful dialogue between members and are committed to making sure it’s a safe, supportive space.
Try each migraine support group for several weeks and pay attention to how you feel as you’re reading and posting. Here are some questions to ask yourself as you explore communities:
- Do you feel safe and comfortable in this space?
- Do you feel validated and understood?
- Does the group uplift and inspire you?
- Do discussions in this community make you feel demoralized and stressed out?
Keep in mind that every group has a different tone, style, and set of rules, so you might need to try a few before you find one that suits your needs.
A formal group isn’t the only place to find support. Your care team can be a wealth of resources for coping with symptoms and understanding treatment options. You may also be able to lean on your family and friends for additional support.
Here are some tips on building a support network to help you manage migraine episodes:
Share what you’re going through
Migraine can be a misunderstood condition. Talking about how you’re feeling and sharing information about migraine can help your loved ones learn about what you’re going through.
Spell out what kind of support you need
Let loved ones know exactly how they can help you, said Ellis. That might mean accompanying you to a doctor’s appointment, watching your kids while you take a hot bath, or simply listening to you vent some frustration.
To reduce exposure to migraine triggers, you might be inclined to avoid social activities and spend more time at home. However, this can lead to loneliness and isolation, so it’s important to find ways to stay connected with others.
You may want to consider trying an activity management technique called pacing. It usually involves planning activities in advance to align with your energy levels and taking regular breaks to help you avoid overdoing it. Pacing can help you enjoy time with friends and loved ones, while minimizing triggers.
Even though migraine affects millions of people, living with the condition can feel lonely. You might feel misunderstood by the people around you, and even your doctor.
Migraine support groups can help validate what you’re going through. They can also give you the opportunity to learn about treatments, find new ways to manage symptoms, and help you feel part of a community.
Shop around until you find a migraine support group that makes you feel safe, comfortable, and understood.