By Teshamae Monteith, MD and the New Investigator and Trainee Special Interest Section
The internet and social media have created an explosion of resources for patients to learn more about their headache disorders. As for much of what you generally read on the internet, patients should exercise caution when navigating the web for health education. The New Investigator and Trainee Special Interest Section of the American Headache Society® (AHS) is committed to the development of new researchers and clinicians in the field of headache medicine. In recognizing the difficulties some patients may face in researching headache information, we have provided a short guide to assist patients in finding the right resources to research their headache care.
Wikipedia is a free encyclopedia that has entries listed and edited by users. You can imagine the potential for inaccuracies in an essentially unregulated process. As a saving grace, Wikipedia listings does provide references, however, references are few in number and it is ultimately the responsibility of the reader to look up those references.
Youtube can be a source of invaluable education at its best. You can find high quality footage such as Brainstorm – Medication Overuse Headache with Elizabeth Loder MD, MPH, FAHS and Stephen Silberstein MD, FAHS.
Alternatively, you may also find the potential for inaccuracies. For example, when searching for “migraine cures,” 37,900 results appeared—up from 2,400 in 2012! While the headache field has made great progress in its understanding and treatment of migraine, rigorous scientific literature does not support any evidence of a migraine cure.
Signing up for Twitter is an interesting way to follow the latest headache news. For current headache information, you can follow ACHE (@ahsache) and AHS (@ahsheadache). In addition, the Migraine Research Foundation (@MigraineRF) and the Migraine Trust (@MigraineTrust) also have Twitter feeds. When looking for support and information from a patient perspective, Teri Robert (@TRobert) frequently tweets and blogs. For clinical trial opportunities, patients can go straight to the website for reliable study listings (https://clinicaltrials.gov/).
Many patients go to online chat rooms. The American Headache and Migraine Association (AHMA) is a patient run organization that provides a blog and a Facebook support group. The Alliance for Headache Disorders Advocacy (http://allianceforheadacheadvocacy.org/) provides a list of other patient blogs and information on how to advocate to your legislative action for migraine sufferers.
Others have tried rating sites to find qualified headache specialists; however, the American Migraine Foundation has a new app where you can find a board certified headache specialist near you. The Migraine Research Foundation (http://migraineresearchfoundation.org/diplomates.html) also provides a listing of board certified headache specialists.
Ultimately, developing a trusting and open relationship with your headache care provider is the best way to learn more about your headache problem and get the treatment that you need.
Dedication to Fred Sheftell, MD
Teshamae Monteith, MD, Assistant Professor of Clinical Neurology, Director of the Headache Program, University of Miami, Miami, FL.
Click @headachemd to follow Dr. Teshamae Monteith on twitter.