Imagine suffering from a chronic medical condition and upon an examination, being told by a doctor that your suffering is due to brain power. Now imagine that is not the worst medical advice you have been, or will be, given.
Teri Robert does not have to imagine. For more than 50 years, she has dealt with migraines and associated effects, and yes – she really was told that her migraines were, well, brain-based. “When I was in my early 20s, an ear, nose, and throat specialist examined me and said, ‘Congratulations. You are an intellectual. You have migraines,’” Teri said. “My family doctor, who referred me to the specialist, suggested that I just take pain pills and learn to live with the migraines. For a few years, that’s what I did.”
As her migraines continued, with little or no relief, Teri also was told to have a baby, to get a hysterectomy, and to quit complaining and deal with them. Oh, and to stop worrying about them.
The first turning point in Teri’s treatment came when an understanding neurologist listened to her, reviewed her history, and upon examining her said, “If you are willing to be patient and work with me, you don’t have to live like this. I won’t give up on you if you don’t give up on me.” The next came when she took firm control of her condition and, thanks to an online support group, found a doctor whose diagnosis and treatment she still follows.
“You may wonder what happened to make such a change in my attitude,” Teri said. "I started educating myself. It had become obvious to me that there wasn’t a doctor within 100 miles of my home who was going to help me, so I was going to have to find a way to help myself.”
Through it all, Teri managed not only to educate herself about her condition, but to educate others and work toward more and better information for migraine patients. She is a founding member and secretary of the Alliance for Headache Disorders Advocacy; manages a website offering support, information, and contact information for people suffering from headaches and migraines, and has written a book for people suffering from migraine disease. “What I have learned over the years is that neurologists are not necessarily migraine specialists, and migraine specialists are not necessarily neurologists,” Teri said. "We must work with our doctors as treatment partners with them making decisions with us, not for us.”
Nominated by the National Headache Society as a consumer peer reviewer for migraine research grants submitted to the 2010 Peer Reviewed Medical Research Program (PRMRP), Teri was able to advance her knowledge further, and share what she had learned with scientists and clinicians on the panel who continue to seek answers to what causes migraines and how to treat them.
“I had the pleasure of meeting and working with medical professionals and other advocates, and learned about the science of my field,” Teri said of her experience reviewing for the PRMRP. “Being a consumer reviewer means having the opportunity to employ what I have learned, and to learn more, while participating in a process that will lead to solid medical research.”