Understanding the unique needs of transgender people with migraine to provide better treatment
Over 39 million Americans live with migraine, and different populations have unique treatment needs and experiences. For transgender people living with migraine, less is known about migraine’s effects and the potential obstacles to finding effective treatment. Headache specialists like Dr. Anna Pace, director of the Transgender Headache Medicine Program at Mount Sinai, are working to improve the understanding of migraine in transgender people and provide improved and comprehensive treatment options that reflect the unique needs of the community.
How Common Is Migraine in the Transgender Community?
An estimated 1.4 million transgender adults live in the United States, but there isn’t a lot of information on how often migraine impacts them. “Two small studies conducted in the 1990s and early 2000s found that 17-26 percent of transgender individuals reported living with migraine,” says Dr. Pace. “Given that there are over 39 million Americans who have migraine, this is likely an underestimate of how common migraine is in the transgender community.”
The causes of migraine are the same across race, ethnicity, sexual orientation or gender identity. Factors at play include genetic makeup, hormones, lifestyle factors such as food choices, other medical conditions and more. For many transgender people, hormones may be a large contributing factor to migraine attacks, but unlikely the only cause.
The Role of Hormones in Migraine
Migraine is more common in cisgender women than cisgender men, impacting one in five women and one in 15 men. Cisgender means a person whose personal identity and gender align with their sex at birth. This difference in migraine prevalence between cisgender men and women is likely related to hormones and hormonal changes.
“Hormones can affect migraine in cisgender women based on some of the studies on postmenopausal women who are on hormone replacement therapy or studies that look into people who have been on oral contraceptive pills,” says Dr. Pace. “However, we don’t have a lot of data on transgender individuals who are going through hormone therapy, but based on data in cisgender populations, we think that estrogen may play a role in the development of aura.”
Research does show that when hormone therapy is consistent, migraine frequency is reduced. In patients who experience migraine around their menstrual cycle, regulated hormones improve their migraine symptoms.
“From this data, we expect to see those who are on hormone therapy over a period of time may actually find their migraine attacks are reduced in frequency,” says Dr. Pace.
There is not a lot of research about the impact of transition surgeries on migraine frequency. But we can get insights from research on similar procedures. Research in cisgender patients who have hysterectomies and oophorectomies, removal of the uterus and ovaries, have both shown an increase in the frequency of migraine attacks immediately after surgeries.
“If an individual’s estrogen levels are high and then they quickly drop because the ovaries are removed, that drop in hormones can lead to more attacks,” says Dr. Pace. “The surgeries themselves, however, are not something that one should be concerned about in terms of causing migraine. Migraine treatments should help support any intervention that a transgender individual would want to have or to continue hormone therapy.”
Transgender patients with migraine should receive individualized treatment plans. There is not a one-size-fits-all treatment for migraine. So doctors will create a treatment strategy that is tailored to the individual patient’s needs. Communication is an important aspect of creating a plan: patients should work with their doctor to share their needs to create a strategy that will reduce migraine frequency and severity while improving quality of life.
“Transgender people with migraine do not have to choose between continuing hormone therapy and managing their migraine attacks,” says Dr. Pace. “There are some migraine medications that may interact with hormone therapy, so it’s important to discuss any change in medication or hormone therapy with your doctor.”
Advocating for Yourself
Because migraine is an invisible disease, people often downplay its impact, leaving those with migraine to feel unheard. Unfortunately, transgender people also face stigma and the same feeling of being unheard. So this makes self-advocacy an important part of receiving medical care.
“Finding a healthcare provider who is LGBTQ-friendly is vital because you should feel comfortable with your physician,” says Dr. Pace. “Arm yourself with migraine education and don’t be afraid to ask questions. Consider bringing a support ally with you to appointments. This should be someone who is knowledgeable of your health and who will be able to advocate for you during the appointment.”
Patients should ask their healthcare providers to communicate with all members of their health care team. Because there are many members of a patient support network, it’s important for all of a patient’s doctors, including primary care doctor, endocrinologist, headache specialist and any other physician, to be on the same page.
Resources for Transgender People with Migraine
There are many organizations and resources dedicated to reducing and removing the barriers transgender people face. Dr. Pace put together the following resource recommendation:
- General resources
- Healthcare insurance coverage
- Finding an LGBTQ-friendly provider
- Health Professionals Advancing LGBTQ Equality (GLMA), formerly the Gay and Lesbian Medical Association
- World Professional Association for Transgender Health (WPATH)
Migraine is different for every patient, and finding the right doctor is essential to getting a proper diagnosis and a treatment plan that works for you. Search our online doctor database to find a headache specialist near you, and read more about living with migraine in our resource library.