It’s not “just a headache”: living with migraine

Imagine that you have a bomb ass day planned. You got the outfit ready, and you look good! You make your way to work and plan a day of efficiency so you can leave on time and meet up with your friends for drinks afterwards. Now a few hours have passed, and you’re handling your business at your job. You’re about to send an email when you start to feel “off”. You’re getting more sensitive to the fluorescent light hovering above you in the office. A wave of dizziness hits you and you start feeling a bit lightheaded. And then you start having some vision issues. There are some visual disturbances going on in your right eye, like dancing zigzag and other geometric shapes. Also, you feel a tingling/numbing sensation on your lip. 

A throbbing ache is forming in your head and now all the lights around you are far too bright. All the while, you’re still dealing with the visual disturbance in your right eye. You quickly close the blinds in your office to help provide some relief but now bouts of nausea come about. The world no longer matters anymore and all you want to do is curl up in the fetal position and lie down in the dark. So you give yourself a minute to rest for a bit. After 15 minutes or so, the visual disturbance is gone and you can fully see in both eyes. But what’s left is now a massive headache that feels like it’s too much to bear. You try to take some Tylenol or Excedrin for the headache. Fifteen minutes later you throw up. You wonder if those pain meds even had a chance to work their magic. 

Still feeling unwell, you have to take a moment to ride the wave of pain until you can muster enough strength to let your boss know that you aren’t feeling well and that you need to go home. You finally are able to do so and you call an Uber to take you home (since you came via public transportation to work), squinting as you enter your location in the app because even the lowest brightness on the phone is too much.

You haul your ass to the first floor to leave the building, squinting through it all because of your now heightened sensitivity to bright lights, and enter the Uber as fast as you can. Once you make it home, you do your standard protocol of chicken noodle soup, ginger ale, lots of fluids, a cold ice pack for your eyes and head, and lie in bed in the darkness. You keep asking God why they would let you be in so much pain and wish for it to end. Pain is ephemeral, Pain is a part of life, you remind yourself over and over until you drift off to sleep in the dark. 

You won’t feel 100% like yourself and will feel sluggish for the next day or two. What I’ve just described is my experience living with episodic migraine.

Defining Migraine

Source: The Migraine Trust

So what is migraine? Well, according to the Mayo Clinic, migraine is a neurological condition that causes intense head pain for hours or days at a time, usually along with other symptoms.  The Migraine Research Foundation says that migraine is an extraordinarily prevalent and debilitating neurological disease, affecting 39 million men, women and children in the U.S. and 1 billion worldwide. Doctors are not really sure what causes them, which can make figuring out treatment tricky. Some of the symptoms are what I described above: nausea, vomiting, sensitivity to light and sound, etc. It is truly a total body experience. For some people, like me, a warning symptom known as an aura occurs before or with the headache. An aura can be visual disturbances, such as flashes of light or blind spots, or other disturbances, such as tingling on one side of the face or in an arm or leg and difficulty speaking. I usually experience visual aura during a migraine attack but I’ve also had sensory aura in the past too.

Living with migraine

Source: The BioVendor Group

I’ve had episodic migraine since I was about 17 years old (compared to chronic migraine, defined as 15 or more attacks in a month). They would happen once or twice a year and although I had the debilitating symptoms – nausea, vomiting, visual and sensory aura, pounding headache, fatigue, sensitivity to light – I never thought much of it and didn’t seek treatment for my symptoms. I thought that it was just a really bad headache because when I would take pain meds and sleep it off that would mostly do the trick. It wasn’t until I was in my late college years that I realized that migraine was the term for what I’ve been experiencing. But still, I never went to the doctor to get officially diagnosed because it didn’t happen that often and I thought it would get better on its own. Clearly I was wrong. Over the past year, I would on average have 3-4 migraine attacks in a month. Sometimes, they would be one day after the other, thus wiping me out for the week. It would take a few days post-migraine to fully feel like myself again. I couldn’t understand what was causing me to get them so often all of a sudden. So I did some research to learn more.

Migraine and its triggers

Source: Migraine Buddy

There are many triggers that can cause a migraine attack. The main ones for me tend to be: stress, skipping meals, lack of sleep, dehydration, fluorescent lights, too much screen time, and hormonal changes before my period. It made much more sense that I was getting them more frequently the way 2020 went down. I was constantly stressed, not only due to the state of the world (pandemic and racial issues in the country) but also because I was overworked, applying to grad school, and not taking care of myself. My life coach always reminds me to prioritize the basics – sleep, eating well, and exercise – no matter what’s going on in my life. Unfortunately, I struggled and failed on many occasions to do so. So my migraine attacks increased. 

I finally went to a neurologist (a game changer!) who was able to officially diagnose me with episodic migraine and help me figure out what steps I could take to minimize my symptoms. She prescribed me medication to take at the onset of an attack. We also discussed preventive measures I can take like eating right, exercising regularly, sleeping well, staying hydrated, and taking magnesium daily (which is known to help with migraine and calm the nervous system). I was lucky that my mom encouraged me to seek medical attention for this, as she’s experienced migraines in her life too (If you suffer from migraine, chances are someone in your family does too). Sadly, not everyone seeks medical care for it. According to the Migraine Research Foundation, the majority of people with migraine never seek medical care for their pain, and more than half of people with migraine are never diagnosed. So people suffer in silence, just like I had for so many years. 

Bias and lack of migraine awareness

In Everyday Health, Megal Irby, PhD,  senior research associate at the Maya Angelou Center for Health Equity at the Wake Forest School of Medicine in Winston-Salem, North Carolina, provides an intersectional perspective to the issue of folks not seeking medical care for migraine. She states that, “[t]he underdiagnosis and undertreatment of migraine is even more of an issue among groups that have been marginalized. That would include people of color, especially women and people who are financially strained or who have experienced poverty.”

It is shown that women experience migraine more than men which I think adds to the stigma and bias. 85% of chronic migraine sufferers are women and roughly 1 in 4 women will experience migraine in their lives. I feel like there’s a perception of women just “overreacting” when they express their pain when seeking help which we see in the medical industry in the U.S. Add the fact that there is the mistaken belief by some medical professionals that Black people feel pain differently than white people, then you have the underdiagnosis and undertreatment of migraine for Black women like me. 

Even though migraine is prevalent across the world and that it has serious effects on individuals, families and the economy, research into the causes and treatment of migraine is severely underfunded. I think a part of that is due to the lack of understanding we have culturally about migraine. A 2019 Health Union Study of people with migraine found that 47 percent of those surveyed said that others “don’t understand that migraine isn’t ‘just a headache.’” But the reality is that it is so much more – it is really a full-body experience that affects so much of your life when an attack happens. Nine out of 10 people cannot work or perform daily activities during a migraine attack

For the most part, the people in my life empathize even if they may not get it. However, I do feel that some people believe that I’m overreacting or that it’s not that big of a deal. That could be me projecting my guilt and shame onto them but I do believe that culturally there is a lack of understanding and compassion around migraine because of grind culture and drug culture. Just pop some aspirin and push through and you’ll be fine. That would work for a headache but a migraine is a whole other level. It literally wipes you out during an attack.

Seeing someone like me with migraine 

When I heard that Karamo Brown (Queer Eye) also suffers from migraine and spoke about his experience, it made me feel less alone. I had some friends and family who have migraine but to see someone with a platform speak about it, I felt like that was a big deal. Many people don’t really understand what it feels like to have migraine. It is really debilitating and can affect one’s life tremendously. I’ve felt shame and guilt during my attacks because I had to take off work or I couldn’t respond to a friend’s invitation. Living in a society that tells us that our worth is tied to our productivity, it can be hard to rest guilt-free. But it’s imperative to healing. 

For me, it’s been a process of learning migraine management. I’m learning to develop a practice of self-care and self-compassion for myself. Monitoring my mental health has become so imperative to preventing migraine attacks. I’m learning to focus on the basics more and prioritize my health over obligations. I can’t be the best me if I’m not taking care of myself daily to prevent my triggers from causing an attack. And when I do have a migraine episode, I remind myself that I need to sit my ass down and rest because the work will be there when I feel more like myself. Because my nervous system is more sensitive to physical, emotional, or social stimuli than others as a highly sensitive person, I also need more rest and downtime than most. So I try to have free time for my mind to roam, journal, read, dance, and do other things that calm me and relieve stress. I’m far from perfect and sometimes my partner needs to remind me to eat or to stop looking at my phone when I should be asleep (thank you love!). 

How to support someone with migraine, especially when they’re having an attack

Unless you’ve experienced migraine, it can be hard to understand what your friend and loved one are going through, especially in a culture where migraine is downplayed. But that doesn’t mean that you can’t try. Sometimes we may not know how to help or how to seek understanding. And that’s okay. However, trying is always the first step. Here are some ways you can offer support to someone experiencing migraine.

  • Do not question their pain or the frequency of their attacks
  • When they have to cancel plans, tell them that “It’s okay, let’s meet another time”
  • Be sensitive about meeting locations (example: bright lights, sounds, high heat, etc.)
  • Ask them, “how can I make your day easier?”
  • Remind them to take care of themselves and take breaks
  • Remind them that the pain is not forever
  • Send a care package with soup and items that comfort us
  • Offer to send them a meal if they are in too much pain to cook
  • Offer to grab a few groceries for them

I hope you enjoyed this read. You can spread the word about migraine with family and friends to raise awareness. Chances are, you know someone with it. Have any comments about this post? Please share your thoughts in the comments below!

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