Migraine Comorbidities: Three Advocates Share Their Stories

Some conditions occur more frequently in people with migraine. I spoke to three people living with migraine comorbidities to learn about their experiences.

Having a chronic condition can mean navigating days of pain that wear you down physically and mentally. Many people often find that they face multiple chronic conditions at once. If this sounds like you, you’re not alone.

Studies have shown that people with migraine are more likely to live with other conditions than the general population. The presence of multiple chronic medical conditions is often referred to as “comorbidities.” Migraine comorbidities are illnesses that occur at a higher rate in people with migraine than in the greater population.

Common migraine comorbidities include psychiatric conditions like depression, anxiety, PTSD, and panic disorders. Asthma, IBS, fibromyalgia, hypertension, and stroke also occur more frequently in people with migraine.

Understanding migraine comorbidities is important for a few reasons. On the diagnosis side, comorbidities can make diagnosing migraine more complicated because of overlapping symptoms.

On the other hand, understanding comorbidities can help your doctors to find treatments that can help multiple conditions at once.

For example, someone with depression might find that cognitive behavioral therapy helps navigate challenging thoughts and feelings. This treatment can help them manage their nervous system symptoms and stress levels, and in turn, mitigate migraine symptoms.

To learn about the real-life impacts of migraine comorbidities, I spoke to a few individuals navigating migraine alongside other conditions. Here are their stories.

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Pain like a knife cutting through a cake

45-year-old Mary Fashik has lived with migraine for over 30 years. She first began having attacks when her menstrual cycle began at age 13. When her attacks started, she remembers experiencing headaches that lasted for days.

Because she’s adopted, Mary doesn’t have much information about her family history. Currently, Mary still has frequent migraine attacks. Sometimes her attacks last for a month at a time. She explains that she imagines her pain like someone slicing right through a piece of cake, “It feels like someone is cutting through my eye.”

Mary sees a neurologist for cerebral palsy and migraine. The exact cause of cerebral palsy isn’t always known, but can be caused by a lack of oxygen to the brain during birth.

In February, Mary’s neurologist wanted her to try a different migraine medication because it was raising her blood pressure. Though her hypertension is due to postural orthostatic tachycardia syndrome (POTS), her migraine medication seemed to be elevating it further.

However, when Mary started taking the new migraine medication, it didn’t help prevent attacks whatsoever. She has been experiencing migraine symptoms almost every day since then.

Mary also has a lot of sinus issues, along with lupus, fibromyalgia, and Sjogren’s syndrome. When Mary asked her neurologist how her cerebral palsy would affect her chronic conditions, her doctor didn’t have any answers.

Frustrated, Mary wound up having to do her own research. She expressed her frustration about the lack of research on brain damage and cerebral palsy and how these factors may affect migraine.

Living in pain every day exhausts Mary mentally, emotionally, and physically. She feels desperate to find something that will help. Due to the pandemic and being immunocompromised, she has spent a lot of time indoors for the past 3 years. Even sitting outside can aggravate her sinuses, which triggers her migraine.

As a 1-year-old, Mary was called “too smart to be disabled” because she understood three languages. However, she wasn’t crawling or walking, which is often a sign of cerebral palsy. She was finally diagnosed at age 2 thanks to Mary’s parent who advocated on behalf of her child.

Mary has had to be an advocate for herself. Today, she is part of a disability justice movement and is a workshop facilitator. When people ask her how she became an advocate, Mary says that she didn’t consciously decide to become an advocate. “You become one because you have to,” she says.

How anger and stress can affect your body

Like Mary, 25-year-old Zane Landin started experiencing migraine at a young age. He experienced pain in the middle of his head, dizziness, and sensitivity to bright lights. To this day, he is light and sound-sensitive during his attacks. Though he used to experience migraine symptoms daily, he now has about five migraine days per month.

Zane has had hypertension from a young age. He suspects that the pain and stress from migraine and the pressures from being in school are connected. “I wouldn’t say one is caused by the other, but one definitely impacted another one,” he says.

Zane also has mental health challenges. As a child, he remembers often feeling intense emotions. He remembers having periods of being very angry, followed shortly by migraine. For parents of children who have a disability, he wants them to remember to educate themselves, seek out help, and advocate for their child.

Accessibility needs matter

Rebecca Hoyt first began having ocular migraine attacks with auras around second grade. Her attacks caused her to miss school and spend a lot of time in the nurse’s office.

This, paired with her learning disability, created a misconception that Rebecca didn’t want to be in class or was using her migraine episodes as an excuse to avoid schoolwork. Rebecca remembers the difficulty of having to deal with people who had no knowledge of migraine and didn’t believe in her access needs.

Now 38, she experiences multiple types of migraine. Though she has symptoms like aphasia or eye pressure almost every day, she only has debilitating attacks a few times a month.

Rebecca also has dyslexia and, as a result, a lot of visual fatigue, which seemed to make her migraine worse. Living with dyslexia and migraine means that Rebecca has to make lifestyle adjustments to manage the frequency and severity of her symptoms.

This includes changes like not using fluorescent lighting, having a curtain in her office, and using screen filters to avoid computer glare. She also has four pairs of glasses that she uses for different lighting settings. On heavy Zoom days, she adjusts her schedule so she can do mostly nonscreen work after her meetings.

Rebecca wishes that when it comes to the workplace, employers focus on accessibility more. While wheelchair access is often a consideration, lighting or sensory input isn’t thought of often.

She also thinks that the value of employees who have accessibility needs should be considered. “If you are not developing a culture and an environment that includes those people, you’re missing out.”

The takeaway

Understanding migraine comorbidities can help illustrate just how complex migraine is and how experiences with migraine differ significantly across individuals.

If you’re living with migraine alongside other conditions, know that you’re not alone. The Bezzy Migraine community is a great place to connect with others who understand what you’re going through.