In this video, Anna Pace, MD, Icahn School of Medicine at Mount Sinai, New York, New York, discusses her recent presentation at the American Headache Society Virtual Annual Scientific Meeting, “Does Gender Impact the Presentation of Headache Disorders, Response to Treatment, and Adherence; Learnings from Clinic.”

Dr. Pace discusses the treatment of transgender and gender-diverse patients seeking care for headache, as well as the need for further research on gender-diverse patients and headache care.

Read the Transcript: 

Dr. Anna Pace:  Hi, my name is Dr. Anna Pace. I am an assistant professor of Neurology and a headache medicine specialist at the Icahn School of Medicine at Mount Sinai. I'm very honored and privileged to be speaking about headache in the transgender and gender-diverse patient population at the American Headache Society's virtual annual scientific meeting.

I'll mainly be discussing how to approach a patient who is transgender or gender-diverse, who is in your clinic with headache. One of the first things I'll be discussing is proper terminology and nomenclature when referring to sex assigned at birth, gender identity, sexual orientation, what gender affirmation means.

Then talk a little bit about the literature focused on sex and gender differences in headache, and how estrogen and testosterone may affect the perception of pain in cisgender patients. Use that research to extrapolate how patients who were on gender-affirming hormone therapy may experience fluctuations in their headache syndromes.

What other types of headaches may be present aside from migraine, if there are any other secondary headaches that we should be concerned about in patients on gender-affirming hormone therapy, and also speak a little bit about gender-affirming surgeries and other surgical interventions, and whether or not that may affect headache.

Lastly, I'll be focused on speaking about the stigma and discrimination that patients have been facing that may preclude them or dissuade them from seeking medical care, and some of the ways in which we can create a warm and welcoming gender-affirming office environment that will make patients feel more comfortable and make them more likely to follow up with us.

Part of the difficulty in this particular field is that, while there are likely a large number of patients who are gender diverse who experience migraine and other headache syndromes, we don't unfortunately have a lot of robust data showing that.

Part of it is because patients are hesitant to seek care. They're not participating in research and so the numbers are very minimal. Some of the data that we have are case-based or based on clinical experience.

We need to advocate for better care for these patients and provide that care, so that way we can learn a little bit more and teach across the country and the worlds about how to manage headaches in patients on gender-affirming hormone therapy.

I stumbled into this as a headache medicine fellow, and I was taking care of a number of patients on gender-affirming hormone therapy and trying to figure out why their migraines had changed. What we could do about it? What medications were safe to use, what we're not to use?

I remember one day going home and trying to look up any literature that I could find on this so that I knew that I was doing the right thing, and I could not find anything. There were two studies at that point that were available to me, and I thought that was something that needed to change.

I started looking more and more into hormones and how they relate to the experience of migraine and pain processing, and became more and more interested in this area and realizing that there was very little data available. My goal is to try to create more information out there and learn a bit more from my patients, but also try to start some research.

That way we can understand what goes on in migraine, and how gender-affirming hormone therapy affects that, if at all. It's definitely been a passion project over the years.

My patients are wonderful, resilient, and amazing. I really enjoy spending time with them and taking care of them. I hope that as the years go by, we'll start to understand a bit more and be able to provide even better care for them.

Q:  Is there any research that you hope will come out of your presentation, or that you are planning to do in the upcoming months or years?

Dr. Pace:  Yeah. Honestly, starting with the basics and trying to understand epidemiology of headache in the transgender and gender-diverse patient population probably is a good place to start. Then after that, one of my research goals would be looking at patients who are transgender or gender-diverse who are not on gender-affirming hormone therapy.

Try to assess their headache frequency prior to initiating gender-affirming hormone therapy and then follow them longitudinally to determine if their headaches change, and if so, how based on what type of hormone therapy that they're on, whether they're on estrogen, testosterone, any androgen blockers, pubertal blockades.

There are a lot of different types of hormones that are used, trying to focus on if any of those affect headaches, and if so how.

Lastly, looking at the use of any preventive or acute therapies and whether or not they're as useful or more useful in these patients. That would be the next step. There's a whole wide range of things that we can research and look to understand. This is only the beginning.

Q:  Based on what you're presenting at the American Headache Society Virtual Annual Scientific Meeting, are there any key conclusions that you've reached so far?

Dr. Pace:  Yes. Based on animal models and models in cisgender patients that we have, it appears that estrogen can be pro-excitatory, pro-inflammatory. It can increase the risk of aura.

For patients who are on exogenous estrogen, you may notice patients start to experience new onset aura, or potentially worsening of their headaches as well as other chronic pains, pelvic pain, musculoskeletal pain, breast pain, and so on.

Patients who are on testosterone may experience improvement in their headaches, because we have seen that testosterone may be antinociceptive in certain situations.

Now I say take that with a grain of salt because, as I'm sure you can imagine, patients don't always follow the textbook, and some patients on testosterone may do a little worse. Some patients on estrogen may do a little bit better. It's very individual.

One of the other things that's important to understand in these patients is that anything that helps alleviate any gender dysphoria that may have may in turn actually improve their headaches. When their mood is improved and they feel more like themselves or they feel outwardly how they are internally, I think that can make their headaches significantly better.

After gender-affirming surgeries, once they start to be outwardly presenting what their gender identity is, I've found that patients overarchingly are so much happier, and that alone, reducing some of that stress, can help with their headaches.

Overarchingly, gender-affirming hormone therapy and gender-affirming surgeries do seem to improve migraines in patients who are transgender or gender-diverse who are on those therapies, which is fun to watch. They become themselves outwardly and they're so incredibly happy.

Q: Is there anything that you want people to take away from your presentation or/and if it's not included in your presentation, is there anything else that you wish you could have included?

Dr. Pace:  Due to my time constraints, I probably could speak for hours about this, but I think one of the most important things I hope people take away from this presentation is the importance of affirming patient's gender identity and respecting all patients.

One of the biggest things that we can do is create a supportive environment for them, so that they want to come back to see us. So many patients have experienced discrimination in the healthcare field over the years. Doctors who, flat out, told them they will not treat them. Insurances who will not cover therapies for them. The access to care is really poor.

One of the big things that we can work on and we should, and I hope that this is conveyed in my session is that affirming their gender using the proper terminology, using the correct names and pronouns when referring to patients, and listening actively to them about their headaches, their concerns and making them feel welcome, I think, is crucial to the care of these patients.

Not just in headache medicine, but in neurology and medicine in general. They've been through a lot overarchingly and over the years. The stigma and the bias has taken a toll on the population as a whole. Anything we can do to address that will hopefully help them feel more comfortable about seeking care.

Acknowledging that you may not understand or know is one of the first steps as well, and trying to learn a bit more about the LGBTQ population and how headache may affect them differently, understanding that they may have different needs compared to patients who are cisgender. Those are all the first steps to improving care.

Q: Is there any ongoing or upcoming trials that you want to bring attention to, or that you're part of?

Dr. Pace:  Not yet, we are working on it, though. Again, one of the first steps is going to be determining the epidemiology of primary headache syndromes in the gender-diverse patient population, trying to understand what they experience and how often can then help us focus on where we can help best, so to be determined.

Hopefully, my session will be interesting for everyone and I'm always happy to answer any questions, happy to collaborate on any future projects.

I think the more and more people who are interested in this and who want to practice in this field, the better. We definitely need more help.

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