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Get Involved

Reviewed by: HU Medical Review Board | Last review date: November 2010

Although the symptoms of migraine attacks make many sufferers withdraw, the best way to cope with this disorder is to get involved. Support can be found in groups that meet in person or online, such as the information provided through migraine.com.

Benefits of in-person support groups

  • Face-to-face interaction with others who share the similar symptoms
  • Participation in social activities with people who share your disorder
  • Meeting people who are local who are also struggling with migraines
  • Local migraine sufferers can provide referrals to local and regional specialists

Benefits of online support groups

  • No need to physically attend a meeting, which may conflict with other activities
  • Convenience—online groups are typically available around the clock
  • Online archives offer background information at your fingertips
  • Membership isn’t restricted by location, as the Internet provides global access
  • Because participation can include people from other countries, information from a broader range of people is included

A 2010 study presented at the American Academy of Pain Medicine 26th Annual Meeting found that migraine patients who used a pain website for support performed significantly than others in assessments of sense of empowerment, use of relaxation strategies; use of social support; reporting pain as awful, horrible or unbearable; depression; and stress.

Studies have shown low levels of support for those suffering from migraines, although research shows that support has a tremendous positive impact on migraines. For some migraine sufferers, support can be as beneficial as medication. A study in 2000, found that people with chronic fatigue syndrome, diabetes and breast cancer had the highest rates of Internet activity. However, people with migraines had the lowest rate of Internet activity.

 

 

Advocacy Groups & Foundations

 

Migraine Research Foundation

The Migraine Research Foundation raises money to fund innovative migraine research grants to further the understanding of the causes of migraine, to develop better treatments, and ultimately, to cure and prevent migraine. MRF is the only nonprofit in the US whose sole purpose is to fund migraine research. Since all of MRF’s operating costs are underwritten, all donations go directly to fund migraine research

National Headache Foundation

The National Headache Foundation exists to enhance the healthcare of those with migraine and other headache disorders. It is a source of help to patients, their families, physicians who treat headache sufferers, allied healthcare professionals and to the public. The NHF accomplishes its mission by providing educational and informational resources, supporting headache research and advocating for the understanding of headache as a legitimate neurobiological disease.

American Migraine Foundation

Created by the American Headache Society, the American Migraine Foundation is a non-profit foundation that supports innovative research that will lead to improvement in the lives of people who suffer from migraines and other serious types of headaches. The AMF is working to develop treatment guidelines for acute migraine attacks, migraine awareness campaigns in high schools and colleges. The AMF also provides a program to assist in the development of valuable Headache Centers that will provide therapeutic and teaching services in their communities.

Alliance for Headache Disorders Advocacy (AHDA)

 

The alliance is a group of nonprofits focused on headache disorders, including migraines.

PFO Research Foundation

Patent foramen ovale (PFO) is a small opening in the wall of the heart that separates the two upper chambers or atria. The site provides information on PFO and how it may relate to migraines. The foundation educates the public and supports research into PFO.

 

 

Patient Education, Communities, & Social Networking

 

Headache & Migraine Blog Carnival

The carnival provides both headache & migraine patients and people who blog about headaches & migraines with unique opportunities to share ideas on topics of particular interest and importance to us. The carnival happens once a month on the second Monday. Submissions are due the Friday before and can be submitted to Diana Lee by email. For more information, including themes and links to previous editions, visit: Headache & Migraine Disease Blog Carnival.

Twitter Migraine Chat

Migraine patients on Twitter participate in a monthly Twitter Migraine Chat on the second Thursday of the month at 8 pm Central. We use the hashtag #migrainechat. For more information visit this link: Twitter Migraine Chat email Diana Lee or send Diana a message and/or follow her on Twitter @somebodyhealme.

Migraine Cast

MigraineCast has weekly podcast about migraines and other headache disorders. It is an offshoot of the helpforheadaches.com site.

 

 

Healthcare Professionals

 

American Headache Society

Founded in 1959, the American Headache Society is a professional society of health care providers. The organization focuses on the study and treatment of headache and face pain.

American Headache Society Committee for Headache Education

American Headache Society’s Committee for Headache Education, uses the acronym ACHE. It provides educational information for health professionals.

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