Transgender and gender-diverse patients often don’t get the migraine care they need, mainly due to a lack of knowledge in healthcare. A study looks at the unmet needs of this underserved population.

An article in Headache recently shed light on the issues of transgender people who experience migraine. The healthcare community was happy to see this.

Yet, one physician found herself feeling down after reading the piece.

“It saddened me to read that over a quarter of people in the transgender community have reported feeling discriminated against in a care setting,” said Dr. Rashmi Halker Singh, a neurologist at Mayo Clinic and member of AMF’s Editorial Board. “That’s a really, really high number. And I could only imagine that leads to people deciding they don’t want to seek healthcare … and that’s really sad.”

The good thing is these studies could help patients and clinicians understand these issues. And realize what transgender and gender-diverse people face when dealing with migraine.

Transgender Demographics and Terminology

Roughly 1.4 million people in the United States currently identify as transgender. Also, the number of transgender persons receiving gender-affirming hormone therapy (GAHT) is rising. The number of transgender youth treated with histrelin for GAHT increased from 0% in 2010 to 11% in 2016. Histrelin is a synthetic hormone used to treat cancer. It also lowers testosterone or estrogen in patients making a gender transition.

Term Definition
Cisgender (adjective) A person whose gender identity is the same as their sex assigned at birth
Transgender (adjective) A person whose gender identity is different than the sex assigned at birth
Trans man/transgender man (noun) A transgender person whose gender identity is male and whose sex assigned at birth was not
Trans woman/transgender woman (noun) A transgender person whose gender identity is female and whose sex assigned at birth was not
Gender-diverse (adjective) People whose gender identity lies outside of the gender binary structure. Such as gender nonbinary, genderqueer, gender expansive, gender fluid, agender, and pangender people

Creating Experience Improvements for Gender-Diverse Patients

Many transgender patients don’t receive treatment for migraine and other diseases. This is because they don’t feel welcome when they try to access services.

Clinicians could create friendlier environments by asking: ‘What is your chosen name?’ and ‘What are your pronouns?’

“Asking these simple questions and speaking to a person’s humanity is the first thing we can do as clinicians,” said Dr. Halker Singh. “So this is not just to someone who’s transgender, but to all our patients.”

Asking about personal pronouns can go a long way. It can help create positive relationships with transgender patients.

“Every time I’ve done this my patients have been very warm and receptive, and they’ve told me, ‘Thank you for asking,’” Dr. Halker Singh said. Also, medical intake forms should provide options for sexual orientation and gender identity (SOGI).

Understanding Headache Pain in Transgender Populations

Transgender patients and their clinicians need to understand what’s behind their headache pain. Unfortunately, little is known about pain in transgender and gender-diverse patients. But there is a wealth of knowledge available to the general population.

Understanding GAHT is a good starting point. Transgender persons often undergo medical treatment that includes GAHT and/or surgery. These align their physical characteristics with their gender identity and ease anxiety. Such treatment takes many forms, including puberty blocks. Puberty blockers stop the body from making hormones that cause physical changes during puberty.

It’s important to note that estrogen levels could affect transgender women as they do cisgender women. A small study of 50 patients found migraine frequency in trans women who had received GAHT is on par with cisgender women. Another study reviewed Twitter postings. The study found more transgender individuals posted about their migraine than cisgender individuals.

Can GAHT lead to other disorders?

GAHT could also lead to secondary headache disorders. Secondary disorders are headaches resulting from another medical issue—for example, cerebral venous thrombosis (CVT). CVT is a blood clot that stops blood from draining out of the brain. Transgender women getting estrogen therapy could experience headaches that are secondary to CVT. GAHT might also raise the risk of central nervous system tumors, based on another study.

The conclusion? Clinicians and patients should cover all bases during exams. Dr. Halker Singh believes that they should “get back to basics” no matter the patient. “Ask all the questions and be really careful in [their] history taking to look for any red flags, anything that might heighten suspicion about a secondary headache,” said Dr. Halker Singh. “This manuscript brought out the fact that being on gender-affirming hormone therapy might increase the risk of a few different secondary headache problems. And it’s good to be aware of that.”

The insight into migraine in the transgender community from the Headache article is only the beginning. The need to know more about migraine pain in transgender people is clear.

More Research To Come

The good thing is more research is in the works. For instance, one researcher is preparing a study, reviewing headache symptoms before and one year into GAHT. Such research can fill in the gaps. It can show the possible effects of estrogen and testosterone on migraine and ultimately bring relief to transgender and gender-diverse people who live with this disabling disease.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.