By Abigail Chua, DO, and Katie M. Golden,PP (professional patient)
Headache Specialist Abigail Chua, DO, and Katie M. Golden—a self-proclaimed professional patient—candidly unravel best practices for creating a successful partnership.
First appointment jitters
Dr. Chua: Katie, what’s your biggest pet peeve when you see a health care professional for your headache disease?
Katie: I feel like I’m auditioning to gain a spot in their clinic. I prepare for three to 12 months. That’s a long time to get stuck in my head and think of all the possible outcomes. Then all of my hopes and dreams could go down in flames if we don’t vibe.
Dr. Chua: You make a good point. To a doctor, this visit is a normal part of their work day, but to you as a patient, it could be a significant life event that has caused excitement and maybe anxiety for months.
Learning moment: Health care providers should remain empathetic. And patients should remember that they are evaluating their doctor, too. Don’t think of it as an audition. Reframe it as an opportunity to find the headache specialist who best suits your needs.
Preparing for your appointment
Dr. Chua: Most headache specialists ask patients to fill out a questionnaire in advance of their appointment. While these seem tedious, they help focus on the specific details of your headache. Without it, your visit may not be what you’re expecting because it may limit what your doctor can safely prescribe for you. I often wonder why some patients become upset when they’re asked to fill these out.
Katie: Honestly, I’m exhausted just thinking about it. Brain fog makes completing a task in one sitting difficult. Then I think, will you even look at it? And what about medical records? No joke, I have a box filled with notes, diaries, pathology reports, and scans that weighs 40 pounds!
Learning moment: Remember that it’s about quality, not quantity. Don’t bring 40 pounds of your medical records, but do bring:
Your completed questionnaire. (Any good headache specialist will review it.)
Recent imaging scans, like an MRI or CT scan. If possible, bring copies of the actual images as well as the written reports. List of current medications, including over-the-counter medications, that you take for all your medical conditions; not just headache. List of previously tried headache treatments and your reactions to them.
Mental health and migraine
Katie: Why do I have to see a psychiatrist? Migraine is a genetic, neurological disease that is not my fault, so being told I need to see a psychiatrist, psychologist, or therapist makes me think you don’t believe me.
Dr. Chua: Understand that a mental health referral does not mean “it is in your head.” Pain doesn’t just affect you physically; it causes feelings of anxiety, sadness, hopelessness. Some people develop healthy coping skills and have a solid support system, while others just aren’t equipped with the right tools.
Learning moment: A good treatment plan is a multidisciplinary approach that addresses all the ways that headache diseases and comorbidities are affecting a person.
Dr. Chua: Many people use alternative treatments in addition to traditional medications. Katie, what do you use?
Katie: There has to be a balance of medications and “self-healing” practices often referred to as complementary and alternative medicine (CAM). For me, that may mean yoga, but for others it could be meditation, reiki, herbal supplements, essential oils, or acupuncture.
Dr. Chua: I have a certain set of criteria that I ask patients when they ask about alternative treatments. They should make sure that the treatment isn’t illegal, isn’t going to harm them, won’t put them into debt trying to get it, and makes at least some kind of medical or scientific sense. If these criteria are met, then I am usually open to them trying it.
Learning moment: There are many alternative treatments available to patients. However, natural does not mean safe, so tell your doctor everything you’re doing or taking.
Goals and expectations
Dr. Chua: There is currently no cure for migraine and headache diseases. The goal of headache medicine is not to “fix” your headaches. Instead, my goal is to help improve a patient’s quality of life by finding ways to manage their disease, so that despite their headache, they are able to live the life they want.
Katie: When my headache specialist told me that I was chronic and there isn’t a cure, it was a punch in the gut. I had to accept that migraine had taken up permanent residence in my body. My perspective changed and I stopped chasing a cure that doesn’t exist.
Learning moment: “No cure” doesn’t mean it’s hopeless. Many new treatments are in the pipeline. Find a headache specialist to help manage your disease, but keep your expectations realistic: Not everyone will become headache-free. •
Abigail Chua, DO, is a double board-certified neurologist andheadache specialist at the Hartford Healthcare Headache Center in Connecticut. She is also the program director of its Headache and Facial Pain Fellowship Program, as well a previous INvisible Project participant. Dr. Chua also has chronic migraine, giving her a unique perspective into the world of headache.
Katie M. Golden is the Migraine Advocacy Liaison for the U.S. Pain Foundation, contributing editor of the INvisible Project, and director of Patient Relations for CHAMP (Coalition For Headache And Migraine Patients). Writing and advocating have given back the power that chronic migraine had stolen from her.