The World Health Organization (WHO) estimates that almost half of adults have experienced some form of headache at least once in the past year, and says a lack of knowledge among healthcare providers and the general public acts as a barrier to effective care. It doesn’t have to be that way. Many organizations offer educational materials and assist in finding doctors or clinics that specialize in migraine and headache care. Online communities offer moral support as well as practical advice and tips on living well with migraine and other headache disorders. Some websites even help with healthcare costs and provide information about clinical trials related to treatments. Here, we’ve listed a number of the most helpful and informative resources for those living with migraine and headache.
Where Can I Find Information on Migraine and Headache?
Understanding what’s going on in your body can be an important part of coming to terms with a chronic condition and learning how to manage it. These organizations have the information you need. American Migraine Foundation The American Migraine Foundation is a nonprofit organization that works with the American Headache Society to provide patient education, support, and advocacy, as well as to drive research and awareness surrounding migraine. Its Migraine Stories section highlights the real-life experiences of people living with migraine, and you can share your own story, too. Its Find Help tool allows you to search by zip code to find a migraine and headache specialist in your area. American Headache Society While most of the content on the American Headache Society’s website is aimed at medical professionals, its video library answers many of the questions patients may have. Brain&Life Brain&Life, the patient education website of the American Academy of Neurology, provides information on all kinds of neurological diseases, including headache and migraine. Subscriptions to a free magazine, also called Brain&Life, can be initiated via the website. Association of Migraine Disorders The AMD develops tools and resources to help both healthcare providers and patients understand migraine disease better. Examples include the Spotlight on Migraine podcast and a blog. The organization additionally provides funding for migraine research and hosts an annual migraine symposium. Coalition for Headache and Migraine Patients The Coalition for Headache and Migraine Patients (CHAMP) is a nonprofit organization that aims to support people with headache, migraine, and other related illnesses. Its website contains everything from information on navigating insurance and disability benefits to an overview of various treatment options. CHAMP also organizes RetreatMigraine, an annual conference for people living with migraine. Migraine World Summit The Migraine World Summit features taped interviews with leading experts on migraine and headache. The videos can be watched for free during the annual summit and for a fee at any other time. Register on its website to receive email notification of the summit and other special events. National Institute of Neurological Disorders and Stroke The National Institute of Neurological Disorders and Stroke, which is part of the National Institutes of Health, provides basic information about headache and migraine as well as materials on treatment and clinical trials. National Organization for Rare Disorders The NORD website has information on all types of rare conditions, including neurological diseases such as hemiplegic migraine, a type of migraine in which affected persons experience weakness on one side of the body (hemiplegia) along with other migraine symptoms. A search function allows you to search for other diseases of interest. RELATED: This Is Your Body on a Migraine
Who Can Help Me Find a Doctor for Headache and Migraine?
People with migraine and other headache disorders can often benefit from seeing a headache specialist for their care. These organizations can help you find one. National Headache Foundation Clusterbusters Clusterbusters supports research for better treatment of cluster headaches — severe headaches that come in clusters — and advocates for those living with the disease. As an example, Clusterbusters has been working for decades to get the Centers for Medicare and Medicaid Services to cover home oxygen therapy for individuals living with cluster headaches. The organization is also developing a doctor locator to help identify doctors knowledgeable about this type of headache. Castle Connolly Top Doctors While not specific to headache and migraine specialists, Castle Connolly Top Doctors is a leading authority in identifying outstanding physicians of all specialties in the United States. Its website offers a search function that allows you to sort by medical condition, procedure, city, or zip code. All doctors are vetted before they are added to the directory.
Where Can I Find Community and Support From Others Living With Migraine?
Feeling heard and understood is a gift, and when you’re living with a medical condition that’s frequently misunderstood and often stigmatized — meaning the condition itself is minimized, or those who have it are discriminated against — being in contact with others who really understand is crucial to staying mentally healthy and continuing to advocate for yourself. These organizations highlight the real-life experiences of people who are living with migraine and headache disorders, and some offer forums, support groups, or meetings that can put you in touch with people facing the same challenges. Migraine Again Migraine Again is an online community offering patient-focused tips and information for those living with migraine. Its website aims to equip readers with the tools to “survive, and even thrive, despite chronic pain,” and covers such topics as discrimination at work, sleeping well, and parenting with migraine. Migraine Again is part of the Everyday Health Group. Talking Head Pain In this podcast from the Global Healthy Living Foundation (GHLF), the migraine patient-advocate Joe Coe interviews others living with migraine, cluster headache, and other types of headache disorders about their lives and how they cope with their neurological disease. The Daily Migraine The Daily Migraine is an online community of more than 330,000 people living with migraine. Its Facebook page offers daily tips, advice, conversation starters, relevant articles, and humor to its members; you can also connect to the group on Instagram and Twitter. Migraine.com The Migraine.com Community Hub is a place to read posts by people living with migraine, share your own migraine story, and participate in discussion forums.
Where Can I Get Financial Help for Medical Care?
The following organizations offer guidance and services to help cover healthcare costs, including webinars, drug pricing information, and directories of patient assistance programs.
NeedyMedsRxAssistMedicine Assistance ToolPatient Advocate FoundationPatient Access Network (PAN) Foundation
Where Can I Find the Latest Clinical Trials?
These organizations and websites offer information on the basics of participating in a trial, as well as a searchable database of active and completed trials.
ClinicalTrials.govNational Institutes of HealthCenterWatch
Additional reporting by Laura McArdle and Ingrid Strauch.
