Published On: Sun, Jan 14th, 2024

Learning to Live With Chronic Migraine

In the summer of 2005, Qasim Amin Nathari was giving the sermon for Jumuah (Friday prayers in the Muslim religion) to about 200 members of a New Jersey congregation. He wasn’t nervous. He had no reason to be. He knew these people and they knew him. They were part of the same religious community. He was an experienced public speaker who’d worked for decades in communications. And he’d done this type of sermon many times before — not just at this mosque, but also at others.

Yet, as Nathari started his traditional introduction — one that repeated religious scriptures he knew by heart and had recited hundreds of times before — he drew a blank. His brain seemed to be stuck in a strange loop. He kept going back to the beginning of a passage and starting over again.

The congregation started to murmur. Something seemed off. Was everything alright? With the help of a friend in the audience, Nathari took a minute to get himself back together. In those few moments, he realized what had happened.

‘I Need to Explain to You What’s Going on Here’

Earlier in the day, he’d taken his regular dose of a new migraine medication. Nathari has chronic, severe migraines. “Chronic” means he has headaches at least 15 days out of the month. And “severe” means the pain is intense, even by the standards of migraines.

This anti-seizure drug was the latest in a series of meds prescribed by various doctors in Nathari’s long journey to manage his condition.  Many people gave the drug great reviews for decreasing the number of migraine episodes, but it was also known to fog up brain function.

Nathari realized that may have been what had caused his memory loss in front of so many people. Once he gathered his thoughts, he knew exactly what to do.

“OK,” he told the congregation. “I need to explain to you what’s going on here.”  Many in his community already knew about Nathari’s condition, but he didn’t usually speak about it in such a public forum.

He didn’t leave anything out. He told them about the debilitating pain caused by migraines, the string of medications he’d taken, and the side effects, including from the new drug on that Friday evening.

Coming Up With a Backup Plan

It was an approach he’d learned a few years earlier. That’s when the migraines Nathari first had as a kid started to take over his life.

One night in the summer of 2003, Nathari spent a painful and terrifying night with a “hemiplegic” migraine, which can mirror the symptoms of a stroke. The numbness and pain started in his foot and worked its way all the way up the left side of his body.

The only reason he hadn’t gone to the emergency room immediately (he went the next morning) was because he didn’t want to leave his kids alone at home. But Nathari didn’t want to take any chances the next time. So he talked to his son, who was in middle school at the time. They discussed how his illness might affect their lives, and together, they came up with a backup plan for the next emergency.

“Instead of being scared and confused about why his dad was in the emergency room, he felt informed and empowered to help me — and the rest of the family — manage whatever might come up from this illness,” Nathari says.

That gave Nathari the confidence to use the same approach with his circle of friends and family and, eventually, the congregation at his mosque.

Openness about his condition led to understanding and compassion from so many of the important people in his life. Why should his religious community be any different?

He was right. The community embraced and supported him for speaking up. For months after his talk, people approached Nathari about that moment in the mosque. They told him how much they admired his honesty and courage in talking about his condition. To this day, people tell him stories of their own migraine experiences and those of family members, and even ask for advice.

Making the Most of Good Days

“I try not to let it [the condition] dominate my life,” he tells them. For Nathari, that means putting plans in place that increase his productivity and decrease problems.

For example, on his “good days” — when he doesn’t have a migraine or any warning signs that one is on its way — he works nonstop. “I can get 2 days of work done in one day.”

But if he has a migraine or feels one coming on, he has some rules about what he will and won’t do. And he makes sure people know about them. One simple rule is about driving: On migraine days, he doesn’t do it.

“My migraine can go from 0 to 100 in a matter of a minute,” he says. In the car, that means he may have to pull over immediately. He doesn’t want to put himself or others at risk. And he doesn’t want the complication of having to explain himself.

“It’s going to be hard for me to explain to a police officer that I’m not drunk or otherwise impaired — and as a Black man alone in a car, I simply don’t want to be in that position with law enforcement,” he says.

The Power of Telling Your Story

Nathari is careful to tell people that migraines are as varied as the people who get them. There’s no single strategy that works for everyone. Each person needs to work with their medical team, friends, and family to figure out what’s best for them.

Still, Nathari has realized the power of telling his own story. It gives others the courage to be open about their condition and ask for what they need, he says. That’s why he uses his skills as a communicator to talk about migraine in public forums.

In the migraine community, where advocates are often white, middle-class, and female, Nathari believes he has something unique to offer: “I’m a Black man talking about migraines in the Muslim community — I’m basically a unicorn!”

But he doesn’t speak only in the Muslim community. Now based in Jacksonville, FL, he speaks at conferences, churches, and mosques. He recently gave an interview to the Global Healthy Living Foundation’s Talking Head Pain podcast.

Nathari aims to educate people about what they can do to manage migraine in their lives, especially people in communities not always associated with the condition. He likes to tell people, “Black men have migraines too!” But, he says, this is also true in other minority communities.

He returns to one basic principle for managing the effects of migraines on yourself and those closest to you: communication.

“You have to talk to people. Migraines are an invisible illness,” he says. “Unless you tell people about it, there’s no way for them to know what you’re going through.”

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