Dr. Robbins explains why social media is a useful tool for understanding migraine patients and their symptoms

We recently sat down with Dr. Matthew Robbins of the Montefiore Health Center to discuss migraine, his experience working with underserved patients in New York’s Bronx neighborhood, and how social media is giving researchers a wealth of new insights on those living with migraine. Among his many suggestions, Dr. Robbins recommends being transparent about your symptoms, leaning on your support network, and getting a diagnosis as soon as possible.

Q&A with Dr. Matthew Robbins, FAAN, FAHS

AMF: What is unique about your specific approach to migraine research and understanding?
MR: What interests me about migraine and investigating it is often the unexplored aspects of migraine. Things patients experience—like smells, sounds or visual phenomenon—and also looking at interesting ways to explore it, like social media. We can use channels like Twitter or Facebook to sort of capture what may be the underbelly of symptoms that are happening in people with migraine who feel there might be stigma associated with reporting them to friends, physicians or others.

AMF: Do you find that people use social media more freely to communicate symptoms that they might not otherwise share with doctors?

MR: I find that although you would think that people would be more private with social media postings that could be public, you often find that people can be very personal in what they post about. I think that it’s an underutilized tool to capture very interesting and unexplored symptoms in people who have migraine.

AMF: You mentioned something about different symptoms of migraine. What are some of the different spectrums you have seen from a symptom standpoint that has piqued your interest?

MR: I think what makes migraine so interesting is that although headache is the most common symptom people have, it’s often many of the other symptoms that can cause a lot of worry, a lot of disability, or often are the most difficult to treat. An example of this would be people who have terrible nausea and vomiting or people who are too sensitive to things in the environment like lights or sound. People have various disturbing visual symptoms that might be undiagnosed for many years, but after seeing different doctors, the symptoms are thought to be related to sinus problems, and that often leads to treatments that could be unnecessary or even potentially dangerous. So, I think people with migraine can often be misunderstood because of the non-headache related symptoms they can experience.

AMF: Who is most impacted by migraine?

MR: I think those who are most impacted could be those who are really underserved. I work in the Bronx, New York, which has a really underserved population, and these people have a lot of specific problems associated with migraine and its symptoms. For example: They have reduced access to insurance coverage for many of the more expensive migraine medicines that might work better for them. They might rely more on the emergency department for migraine, and as anyone who has migraine knows, the emergency department could be the worst place for them to go. The lights are bright, the sounds are loud—it’s a very difficult environment to get any comfort, and it is often a place that unfortunately, many people with migraine use as a last resort.

AMF: How are you helping these people in underserved communities?

MR: I think much of it is educating not just the patients who are in our community, but also the practitioners in the emergency department, in primary care, in obstetrics and gynecology, and other areas where patients with migraine go before they ever see someone who specializes in headache. I think that we do that through educational programs and initiatives—we do that by making sure we are in close collaboration with people in these different settings.

AMF: If you could share one piece of information about migraine what would it be?

MR: If I had to share one piece of information about migraine, it would be that people should really get help much earlier than they often do. I think there are many types of interventions that those with migraine could really benefit from, and I’m not just talking about medications. There’s a large, dedicated community of headache specialists out there who can help. There’s also a large community of advocates—people on social media—who speak the same language as those with frequent migraine or migraine that’s starting to change and become more of an influence and more of a disabling factor in someone’s life. I think getting help in many different ways–getting help from your family, getting help from your colleagues, getting help medically, getting help in how you can cope with it–is extremely important. Do it earlier, before it’s too late, before migraine becomes chronic.

Dr. Robbins is part of a growing number of doctors focusing on migraine, but there is still a great deal of progress that needs to be made. The American Migraine Foundation is dedicated to raising awareness about migraine and its impact. If you’re looking for a supportive community where you can share your experience with migraine without the fear of stigma, check out our Move Against Migraine Facebook group and get involved in the conversation.