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Kristin Chenoweth is shining a spotlight on living with migraine. Image via Live Shot Media

When Kristin Chenoweth takes the stage, she knows being in the spotlight is part of her job. But she also knows the bright lights she stands under can trigger debilitating migraine attacks.

“What I do for a living includes a lot of triggers for my migraines,” Chenoweth told Healthline.

Spotlights and flashing lights, as well as flying and driving, can ignite migraine attacks for the Tony Award-winning actress and singer.

Nearly 25 years ago, Chenoweth was in a rehearsal room for a Broadway show when she experienced her first migraine.

“I had never experienced anything like it before. It suddenly felt like I had what I call kaleidoscope eyes. And then a pounding headache started with nausea. I also began to feel a sort of brain freeze that wouldn’t end,” she said.

Her symptoms lasted for a few days before subsiding, and then the migraine attacks began to occur regularly, sometimes accompanied with vertigo.

After visiting an ear, nose, and throat (ENT) doctor, Chenoweth was diagnosed with chronic migraine.

“It’s been a journey. Sometimes I go for periods of time where I won’t have any and then they will hit without any warning,” said Chenoweth.

Chenoweth wants people to know that migraine attacks are not simply bad headaches.

In fact, Dr. Andrew Charles, neurologist, says features other than head pain is what sets migraine apart.

“Migraines involve a host of symptoms that involve nausea, balance activity, mood changes, and some people get dizzy and some have loss of vision,” Charles told Healthline. “It’s not just a headache or the quality of a headache, but it’s the features associated with it that define it.”

Symptoms are so debilitating that Charles defines migraine as a disability.

According to the World Health Organization: “In the Global Burden of Disease Study, updated in 2013, migraine on its own was found to be the sixth highest cause worldwide of years lost due to disability (YLD). Headache disorders collectively were third highest.”

Health psychologist Dawn C. Buse, PhD, agreed, noting that millions of Americans are currently living with migraine.

“Headaches are a very universal common human experience, so people who don’t understand migraines feel like they know how a person with a migraine is feeling. They may not realize the extreme impact of a migraine, especially that it involves more than just [head] pain,” Buse told Healthline.

In her research, Buse conducts epidemiologic studies of thousands of people at a time, as well as one-on-one analysis.

“We look at how migraines effect all areas of life — career, education, family, parenting, dating and sex, happiness, finances, and health — and across the board having migraines negatively affects all these areas and makes it harder to achieve your goals,” said Buse.

Chenoweth knows this all too well.

“There have been times I haven’t been able to perform because of a migraine,” she said. “When I won an Emmy Award, I didn’t get to go to one party to celebrate because I got a migraine and I knew I wouldn’t be able to take pictures and see everyone.”

And because migraine attacks often don’t show outward or even recognizable inward signs of existence, people who experience them can feel like they have an invisible disease.

“If I had a neck brace on or sling on my arm, people would know there is a problem — and that’s not to say I want sympathy, I don’t necessarily — but the point is when something is going on inside your body people can think you’re fine,” Chenoweth said.

“My hope is that we get to a point that when someone says they feel a migraine coming, that others nearby know what a migraine means and can be there for that person and understand it is not just a bad headache,” she said.

While nausea and vomiting can be noticeable signs of migraine, Charles says they don’t cause a fever or changes in vital signs.

“In most cases, it doesn’t manifest in a way that people can see. Other than the sufferer understanding that there are extraordinary things happening in their brain. You basically have to have a PET scan or an MRI scan to be able to see a migraine,” he said. “Often because there’s no blood test or physical sign that shows that you’re having a migraine attack, people don’t believe it.”

Charles says there are two types of treatments for migraine: those used when an attack happens and those used to prevent an attack from occurring.

While he says the drug sumatriptan (Imitrex) helps stop an attack once it happens for some people, other treatments used are anti-inflammatory or anti-nausea medications.

“Until recently, we didn’t have any migraine preventive medications, we used medicines like beta-blockers, antidepressants, and antiseizure medicine, so essentially we were borrowing medications that were developed for other indications,” Charles explained.

However, after years of research he says this is finally changing.

“We’ve identified some targets for preventive therapy that are specific for migraines, and the most exciting ones that have been introduced just the last year are these monoclonal antibodies that target a molecule called CGRP,” he said. “For some patients, these are absolutely life-changing medications because they are spectacular at stopping migraine attacks from happening.”

For those that the medication doesn’t help, he said they may still reap its benefits.

“What we’re now understanding based on how this works is that we can potentially for other patients develop some other antibodies or other various specific therapies that can be effective,” he said. “In my career of doing this for more than 25 years, never have I heard the words, ‘My life has been changed’ more than I have in the last year or so.”

He added, “It’s a time of enormous hope for patients, but also for providers in terms of being able to offer better therapies for patients.”

Buse agreed. She provides clinical care to people with migraine by using biobehavioral techniques such as cognitive behavioral therapy, guided visual imagery, biofeedback, and mindfulness training.

“Someone with migraines has an especially sensitive nervous system and their nervous system can be thrown off by internal things like hormones or lack of sleep or emotional stress, as well as external factors like daylight saving time, flying at high altitudes, or weather changes,” she said. “These techniques can all help calm the nervous system.”

For Chenoweth, finding treatment is a continuous journey that has included medication and self-care approaches.

“There are things I do that help — avoiding alcohol and caffeine — but I still get them,” she said. “It’s an ongoing process.”

Until she finds what works best for her, she says talking with others who experience migraine attacks, like her mom, is most helpful.

“Growing up, I watched my mom have migraines. I remember thinking, ‘Oh, I hope I never get one of those’ because when she got them, I knew life shuts down,” Chenoweth said.

Her first memory of witnessing her mom having a migraine was in the summertime.

“It was a very bright day and I remember her saying, ‘I’m getting a headache. I have to go inside.’ I remember helping her into her room and laying her down in her swimsuit. I asked her if she needed anything and she said, ‘Just a dark room,'” Chenoweth recalled.

“And here I am today experiencing what she did. I’ve learned so much from her, but I’m always hopeful that doctors and researchers are learning new things every day.”

To learn about the latest in migraine research, visit the Migraine World Summit.

Cathy Cassata is a freelance writer who specializes in stories about health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.