Managing migraine requires a collaborative relationship between healthcare clinicians and patients. Clinicians and an American Migraine Foundation Emerging Advocate Graduate shared their experience and insights on how to improve and build this relationship during a recent Facebook Live. The event featured:

– Christine Lay, MD, FAHS, American Migraine Foundation, Board Chair
– Tesha Monteith, MD, Associate Professor of Clinical Neurology, University of Miami Miller School of Medicine
– Shay Hill, American Migraine Foundation Emerging Advocate
– Jennifer Bomberger, Senior Director of Strategic Partnerships, Medscape Education

Shay Hill had been living with menstrual migraine that was well controlled when she had a car accident 10 years ago. Her migraine symptoms returned and she immediately had head pain and other symptoms, such as blindness in one eye, following the accident.

It was also the beginning of her complicated journey to manage her migraine. She was sent to a neurologist for her vision. This turned out to be the first of eight neurologists she would see. She says the doctors would try to help her but would eventually throw up their hands and push her off to another doctor.

“Once they figured out that treatment wasn’t working for me, they just wiped their hands and were done, and said they couldn’t help me anymore,” she said.

She encourages patients to continue to push to be heard. If she had not, she would not have continued to seek treatment. She’s also using her experience and training from the American Migraine Emerging Advocate Program to help others.She is looking forward to participating in Headache on the Hill this March hosted by AMF partner, the Alliance for Headache Disorder Advocacy (AHDA).

“You have to let your voice be heard. You know what does not feel right in your body,” she said. “If you’re explaining to a doctor, clinician, your PCP, my head is hurting me and they’re disregarding what you’re saying, keep going until someone listens to you.”

Defining Goals of Care

One thing clinicians can do to help patients is to define goals of care, according to Dr. Monteith,. “Understanding what meaningful improvement may mean. Does that mean headache freedom? Does that mean being able to walk the dogs?” Dr. Monteith said. “I think that making sure that we’re speaking the same language is very helpful to have some shared decision-making.”

According to Dr. Lay, clinicians may presume that they know what a patient wants without asking them. By having a conversation, doctors and patients can get on the same page about what success might look like.

Shay says her current neurologist is a very good listener. “He listens. After each treatment, he does a recap with me where we discuss how it worked. Was it a few days that you felt better? What is your definition of better,” she furthered. “I think it’s really important that you definitely have these conversations with your doctor.”

The Importance of Building a Relationship With a Care Provider

Shay has also been fortunate to have a longstanding relationship with her primary care provider having seen her for more than 12 years. Having this type of relationship with a care provider who knows you well, and who can help coordinate your care is very helpful.

This type of relationship can often be the primary one that migraine patients have, especially in many parts of the country where migraine specialists may be limited or where it can take months to see a specialist.

Providers, whether it is a specialist or primary care provider, can help patients with migraine overcome obstacles in treatment. With new treatments that have been developed, it can sometimes be difficult to get access because of insurance or other barriers. In these cases, both the patient and the clinician can work together to overcome the challenge.

Dr. Monteith says clinicians need to know how to document and make it easier for patients to access medications. Patients can also help clinicians by documenting the drugs they’ve tried even if it wasn’t for migraine.

“There are many medications out there that insurance companies require you to try first. But in fact, you may have already tried it because you had a blood pressure issue or maybe you had a mood issue and you took one of those medications,” said Dr. Lay.

<2> A New Era of Treatment

Dr. Monteith encourages clinicians to consider all the treatment options for their patients and to know that they may have to go past their comfort zone to find relief for the patient. Although clinicians worry about overtreatment, she says migraine patients may be undertreated and that some of the preventive and acute treatments may take a year to work.

“Most neurologists feel very comfortable with ruling out secondary problems, such as a stroke or a blood clot,” she said. “But we want to encourage you not to stop there, and not to stop with the first treatment.”

Shay agrees and encourages migraine patients to continue pushing for treatment options. “Don’t stop talking about your pain, don’t stop looking for treatment options. Because the minute you give up, you just got defeated by your own body,” she said.

She says she also engaged her PCP to help her when she was not getting help from a neurologist. “Every time a neurologist washed his hands of me I would say, Now what? And put the ball in her court,” she said. “It was like an open dialogue. That didn’t work, so let’s put our heads together and figure out what we can do now.”

Dr. Monteith agrees that it is a great time to be treating migraine patients. “We’re making tremendous progress. There’s a lot of new treatments that are available and opportunities for personalization of treatment through shared decision-making and partnerships,” she said. “This is a new era.”

This Facebook Live Education Program was made possible by an unrestricted educational grant.