How migraine impacts the transgender community

Before our webinar on migraine in transgender people, we polled the migraine community to see what questions people had. Host Dr. Anna Pace, director of the Transgender Headache Medicine Program at Mount Sinai, discussed the latest in research and treatment and answered questions from the community. Read on for her responses:

Can testosterone cause migraine?

Testosterone is a hormone that tends to be anti-pain, says Dr. Pace. According to studies in both animals and in humans on primarily cisgender patients (meaning they identify with the same gender assigned at birth), researchers used testosterone to help reduce the severity of pain. Any change of hormones, either an increase or decrease, could potentially affect migraine, says Dr. Pace. There hasn’t been enough research to say for certain that testosterone is a trigger of migraine in an individual. But some patients on testosterone may experience fewer attacks. Changes in testosterone levels may affect how frequently migraine attacks occur.

How do transition surgeries affect migraine frequency and severity?

In women whose gender identity matches their biological sex, removal of the uterus and ovaries can increase migraine attack frequency. This is because the removals cause estrogen levels to quickly decrease. That sudden drop in hormones can be a trigger, says Dr. Pace. In any case, keeping a headache diary before and after surgery will show how the frequency changes. Dr. Pace says the surgeries themselves are not something a person should be concerned about in terms of causing migraine or leading to migraine. A transgender person can use migraine treatments to reduce the chance attacks will increase while taking hormone therapy.

What is the stroke risk in transgender people taking estrogen who have migraine with aura?

While there is no specific data about stroke risk in transgender people, data on women whose gender identify matches their biological sex show aura can be worsened by estrogen, and women with aura are at a slightly higher risk of stroke compared to the general population. Preventive therapy, lifestyle modifications and complementary treatments may minimize aura, but the effect on stroke risk is unknown. People can reduce stroke risk by maintaining a healthy diet and active lifestyle, avoiding smoking, staying hydrated, and treating high cholesterol, high blood pressure and diabetes.

Why is there not more research being done on migraine in transgender people?

There are many factors that contribute to a lack of research. One big reason is the lack of research funding for migraine in general. This is acute for migraine in the transgender community specifically. In addition to this, past discrimination and stigma cause many in the transgender community to feel uncomfortable pursuing medical care. So they may feel uneasy participating in research. Access to a headache specialist and insurance coverage are also factors.

What is it like living with the stigma of migraine and the stigma of being transgender?

Transgender people with migraine face discrimination from two fronts: living with this invisible disease and living in a society that is not always understanding or accepting of people who are transgender. They face potential challenges in:

  • acceptance from family and friends
  • accessing a provider who they can trust to treat their migraine and other needs
  • managing other pieces in their health histories such as anxiety, trauma or depression

There are many layers to having migraine and being transgender, says Dr. Pace. But migraine unites all members of the migraine community together in advocacy for better research, improved treatments and increased visibility.

How do you overcome the stigma of migraine?

Self-advocacy and education are two of the best ways to overcome stigma. People advocate for themselves by making and going to doctor’s appointments, practicing self-care, speaking up against migraine misconceptions when they’re comfortable, and sharing their personal experience with migraine to put a face on this invisible disease. Educating yourself and others increases the availability of doctor-verified information and helps to overcome the common misconceptions.

How can we address the barriers transgender people with migraine face?

First and foremost, Dr. Pace says, headache specialists and other physicians must support and validate transgender individuals. Doctors must work to make their offices welcoming environments. Unfortunately, transgender medicine is not consistently taught in medical school. So training at the residency and fellowship levels must teach physicians about the unique needs of transgender people.

How do you find supportive, understanding providers?

There are a number of organizations dedicated to connecting patients with providers who are accept and support transgender patients. The Health Professionals Advancing LGBTQ Equality (GLMA), previously known as the Gay and Lesbian Medical Association, and the World Professional Association for Transgender Health both have directories for searching for providers. Dr. Pace also suggests looking into local support groups near you.

Knowledge is a powerful tool for migraine management. That’s why it’s important to stay up to date on news and the latest research. The American Migraine Foundation maintains a comprehensive resource library full of fact sheets, toolkits and advice sourced directly from the nation’s leading migraine specialists.