The Best and Most Gender-Affirming Headache Care: An Interview with Anna Pace

“Most people don’t realize that those who identify as transgender often have different and unique needs with regard to their headaches, compared to those who identify as cisgender. There are a lot of potential outside factors, ranging from childhood trauma to psychological distress, which contribute to their headaches and the way they experience pain. You need specialty care, training, and education to take care of these patients.” – Anna Pace

Anna Pace, MD, is an assistant professor of neurology at the Icahn School of Medicine at Mount Sinai, New York City, US. She is also director of the Headache Medicine Fellowship Program, and director of the Transgender Headache Medicine Program, at The Mount Sinai Hospital. Her clinical focus includes migraine aura, headache in pregnancy and during lactation, and headaches in sexual and gender minority (SGM) individuals. She is also a strong advocate for headache medicine education, working to improve the educational experience for neurology residents and fellows in the headache clinic and developing a headache curriculum for medical students.

In this Migraine Science Collaborative interview, Pace speaks with freelance writer Kayt Sukel about what effective gender-affirming headache care should look like, headache medicine education, and much more. The interview has been edited for clarity and length.

What inspired you to specialize in headache medicine?

I love this question, and it’s nice for me to think about that inspiration now, years and years into clinical practice. One of the things that drew me to headache medicine was the longitudinal relationship that a specialist develops with patients. Being able to see a patient repeatedly, over time, and watch them grow and get through life’s ups and downs is important. It allows me, as a specialist, to get to know them, and their headaches, and find ways to help them get through the more stressful times in life, as well as the happier ones.

I’d also add that I, like many other headache specialists, also suffer from headaches. It’s allowed me to relate to my patients a little better since I understand what they are going through. But perhaps the biggest reason I was drawn to headache medicine is having the ability to really help people. Headache specialists can make a big difference in someone’s quality of life, not just from a medication perspective, but by being an active listener, and by understanding and validating their experiences, feelings, and concerns. This can be incredibly therapeutic.

You direct a unique transgender headache medicine program at The Mount Sinai Hospital. Why is it so important to have a specific program for the transgender population?

Unfortunately, a lot of patients who identify as transgender have had poor healthcare experiences in general. They have experienced so much stigma and discrimination, and that can make these patients hesitate to seek out medical care. I hoped, by having a transgender headache medicine program, we could create a safe and gender-affirming space for people to come and receive care. Ideally, the goal would be to attract multiple subspecialties within this program, as well as multidisciplinary staff including psychologists, physical therapists, occupational therapists, speech therapists, and others to support a collaborative care model where patients know they can get the care they need.

Anna Pace

I also think most people don’t realize that those who identify as transgender often have different and unique needs with regard to their headaches, compared to those who identify as cisgender. There are a lot of potential outside factors, ranging from childhood trauma to psychological distress, which contribute to their headaches and the way they experience pain. You need specialty care, training, and education to take care of these patients. Having a program where that is the norm helps our patients feel safe and know they will be well taken care of, because the clinicians and staff are educated about gender-affirming care and take the time to understand all of the potential contributors to their migraine and pain experience.

What does gender-affirming care look like in the context of headache medicine?

Everyone thinks about gender-affirming care solely as hormone therapy and/or surgical intervention. But not all sexual and gender minority patients are on hormones or undergoing surgical interventions. There are many ways to affirm a person’s identity. Headache care is not about throwing medications at people or performing a procedure or some kind of injection to help them feel better. A lot of what we as headache providers do is spoken, and even unspoken. Active listening is a big part, and when a provider understands a patient’s particular concerns or experiences and validates those things, this can create a respectful and safe space that can be therapeutic for the patient.

I would argue that gender-affirming care, as a whole, but especially in headache, is about creating a safe environment for people so that they feel comfortable coming to you, speaking with you about their concerns, and then coming back. That involves not only using the correct pronouns, names, and gender-neutral terminology and wording when you send out a message or recruit people for research. It also means having gender-neutral bathrooms, and signage around the office letting people know it’s a welcoming, safe space.

But perhaps the most important aspect of gender-affirming care is education. You want to make sure that everyone who works in the office, as well as any medical students, residents, or fellows, are aware of the unique needs of the population and are conducting themselves in a way so they can deliver competent, respectful, and affirming care. It also means that you as a provider should be aware of your own biases and knowledge gaps, and actively seek out training to improve your knowledge so you can deliver better care.

Are there any data regarding outcomes or benefits of this kind of program?

Not yet, but I’m working on it. It’s a hot topic in research right now. Certainly, more people are becoming interested in social determinants of health. Recent data suggest sexual and gender minority individuals have more severe disability from migraine if they have a past history of discrimination or past trauma. This is a unique population, and we need to understand their experiences so we can best take care of them.

Given that these programs are not common, and that recent studies show that stigma, past trauma, and psychological distress can exacerbate migraine, what do you hope healthcare providers will understand about how these factors impact the experience of migraine?

First and foremost, providers need to ask their patients the right questions. They should not assume that because a particular patient is seeking care that all of their past healthcare experiences have been great and positive experiences for them.

Just knowing there is a possibility of prior experiences with trauma or discrimination is important, and it can be helpful to consider those experiences as you put the headaches they are having into context. That can help us, as clinicians, better meet patients where they are and develop a better, more individualized treatment plan, whether they identify as a sexual or gender minority or not.

The migraine literature tells us that trauma can be related to migraine, even much later on in life. Data in pediatrics suggest that adverse childhood events can be associated with more migraine disability. This isn’t a new concept, but we’re learning just how important it is in treating this very specific transgender population. I hope that clinicians take this into account when they are recommending treatments.

Let’s talk about medical education. You co-authored a research study that looked at the current state of headache medicine education. What were some of the most surprising things you learned?

One of the things we found was that the amount of time dedicated to headache medicine in the preclinical years was much, much less than I thought it would be. Some institutions had no headache lectures or content, or just an hour or two maximum, throughout the whole four years of medical school. Given how common and disabling migraine as well as other headache disorders are, this is a huge oversight.

We have a huge shortage of headache specialists in the country. That means most patients are going to their primary care physician, pediatrician, OB/GYN, or family medicine practitioner to get help with their headaches. If there is little to no headache content being taught, do these providers even feel comfortable managing headaches? At what point do they feel like they need to refer a patient to a headache specialist? Wait times are ridiculously long even in areas like New York City that have more headache specialists. But what’s happening to those patients, especially to those who are refractory and need more care than a traditional triptan, in areas where you can’t find a specialist? It shows we need more training and education.

Earlier exposure to headache medicine is crucial. Even if you don’t go into neurology or headache medicine, having that background is incredibly useful regardless of your subspecialty. Surgeons see headaches post-operatively. OB/GYNs see headaches during and after pregnancy. Urologists might not see that much headache, but there may be medications they prescribe that can result in headaches. Every subspecialty will have to treat patients who have headaches.

We could also use more education in treating sexual and gender minority individuals. In neurology, at least, there was a survey not too long ago that showed that neurologists were interested in learning more about how to provide effective care for transgender individuals in their clinics. There’s a desire to know more. So, if we can improve education for neurologists, we can better take care of these patients. Because if you don’t know about how a history of trauma and discrimination can affect a person’s pain experience, how can you know how to best take care of that person? Education is really at the crux of delivering quality, comprehensive, and gender-affirming care.

What are the big research questions that you hope to see addressed in the near future?

Some of the main questions I hope that I or other researchers will tackle are: Do those who identify as part of the LGBTQIA2S+ community experience migraine differently? Does hormone therapy affect migraine frequency and severity in a positive or negative way? Are there certain medications for headache treatment that may work better in this population?

There have been some studies that show drug interactions with hormone therapy, but most of this is theoretical or in animal models. I’d like to see more clinical trials include LGBTQIA2S+ individuals so we can see how this patient population responds to newer medications. If there are interactions, are there combinations that work better than others?

As a clinician who is interested in migraine with aura, I’d also like to see more research into what happens in transgender and non-binary individuals who are on estrogen. We know that, in cisgender women, aura can increase stroke risk, and being on estrogen can increase aura and stroke risk. We tend to avoid recommending estrogen use in those who have migraine with aura. But we have no data on transgender and non-binary individuals. These are the kinds of questions we need to figure out so we can provide the best gender-affirming care.

Kayt Sukel is a freelance writer based outside of Houston, Texas.