If you have migraines and you’re looking for information or to connect with others with similar experiences, here are some reliable sources to help you get started. Nonprofit organizations, blogs, online forums and communities, and links to social media accounts are included.
Support groups for migraines are available online and in-person. Look for one that best suits your needs. The groups are usually led by professionals or peers. They may share information like new medical research or news on migraines; share personal stories, tips, and advice; do advocacy work; and provide emotional support.
If you’re not sure where to start, talk to your doctor or health care team, and they should be able to point you in the right direction.
When you find blogs or communities you like, keep in mind that many share personal narratives that may or may not be a good fit for you. They’re not for medical advice -- go to your doctor for that. It’s also wise to think critically about information on migraines you find online, so ask yourself the following:
- Who’s in charge of the site? Do they sell items for or take money from certain companies?
- Does it make any claims that sound too good to be true?
- Is the information up to date, reviewed by experts, and based in science and facts published in studies?
Many national groups have city or state chapters where you can meet other people who live with migraines or similar conditions.
American Migraine Foundation. This group provides resources and information on migraine. It also supports investments in research that can find solutions for people living with severe headache. You can visit www.americanmigrainefoundation.org for more information.
Check its website for information, headaches.org. You also can email the foundation directly at [email protected] or call its toll-free number at 888-643-5552 for nonemergency guidance about migraine care.
American Headache Society. It’s a professional society of health care professionals dedicated to the study and treatment of headache and face pain. The site’s information for patients links to the American Migraine Foundation. Visit www.americanheadachesociety.org to learn more.
International Headache Society (IHS). The IHS works to advance headache science, education, and management, and promote headache awareness worldwide. Its site: https://ihs-headache.org.
Blogs and a Podcast
Many people with migraines and other severe headache conditions share their stories on blogs. The topics can vary, from day-to-day issues about life with migraines to information on the latest research they have found online. While these blogs may provide insight on people’s experiences, don’t make decisions about your treatment without talking to your doctor first.
Heads UP Podcast. It’s a long-form audio or video discussion done by peers or professionals on a specific topic. It’s another way to get useful, relevant information about migraines. Heads UP podcast is run by the National Headache Foundation and talks about latest research, tips, and advice on living with migraines. You can listen to podcasts on your smartphone. www.headaches.org/category/heads-up/
Most national and local organizations usually have multiple types of social media accounts. You can follow them based on the social media platform you use most often or enjoy. You can find these on the organization’s website.
Move Against Migraine. It’s an online community run by the American Migraine Foundation for those with migraine headaches. americanmigrainefoundation.org/move-against-migraine/
Miles for Migraine offers expert-led community groups to discuss migraine pain and treatment several times a week.
Facebook. This social media platform allows you to connect with others who live with migraine. It may be a private group that you may have to request to join. The groups may be run by an administrator who’s a local peer or a professional organization that focuses on headaches. Check the official website of the migraine organization for its official Facebook page. The Daily Migraine blog also has a Facebook page you can reach through the blog’s website.
Reddit. It’s an online community that allows you to connect, discuss, and share information with others who are interested in similar topics. You don’t have to join the subgroups if you don’t want to. But you can read comments left by others. www.reddit.com/r/migraine/
Popular hashtags. You can search for #migraine on social media websites like Facebook, Instagram, or Twitter for headache-related information and news.
While social media can be a good resource for information and support, not everything you see or goes “viral” is reliable or grounded in facts. It’s easy for misinformation to spread online. To avoid this, do the following:
- If someone shares a post or link with you, see if the information is from a trusted source.
- Check for the original source of information.
- Read the account’s bio. See if it has a link to a reliable website.
- Ask: Is the account selling something?
- Check to see if the site is valid. Official Facebook, Twitter, and Instagram accounts may have a blue tick to show it’s verified.
Be mindful about any health information you read online. If you’re unsure about any information or medical advice you see or read online, or are thinking of changing your treatment plan, check with your doctor first.