High school violinist – Kelly Knickerbocker – was in orchestra practice, like always, when all of sudden, she could no longer read the notes on her music stand.

“They were all just blurry,” Knickerbocker says. “I was pretty worried. I thought I was having a stroke.”

Kelly Knickerbocker playing the violin (Photo courtesy of Kelly Knickerbocker)

She immediately went to the school nurse who recommended she see a doctor.

“We went to my pediatrician because, at that point, I wasn't seeing a neurologist yet,” Knickerbocker explains.

Based on her symptoms, her pediatrician determined Knickerbocker was suffering from "migraine with aura."

More than 1 billion people in the world suffer from migraine, but there are only an estimated 700 board-certified headache neurologists in the U.S, according to Dr. Rashmi Halker Singh, a board-certified Neurologist and Associate Professor of Neurology and Headache Medicine Fellowship Program Director at Mayo Clinic.

Dr. Rashmi Halker Singh, board-certified Neurologist and Associate Professor of Neurology and Headache Medicine Fellowship Program Director at Mayo Clinic (Photo courtesy of Dr. Rashmi Halker Singh)

“It's actually a very underserved patient population,” Halker Singh says. “Part of our job - that I really love - is the advocacy part: spreading the word about migraine and really educating people about the disease. That's where the American Migraine foundation comes into play.”

The American Migraine Foundation is the patient and public-facing front of a three-part organization. The other branches include the American Headache Society and the Headache Journal. The American Headache Society works with headache relief providers, such as healthcare professionals, by encouraging scientific research and educating professionals. The Headache Journal is the organization’s publication for headache professionals.

AURA

About 25% of people who have migraine will experience an aura that lasts five to 60 minutes before the headache begins, according to Halker Singh.

“Most commonly, it's a visual aura so they might see kaleidoscope colors in their vision, or something like that,” Halker Singh says. “Sometimes it’s like pins and needles.”

Kelly Knickerbocker, 22, graduating from college (Photo courtesy of Kelly Knickerbocker)

Now 22, Knickerbocker says her auras have evolved dramatically since the first instance of seeing blurry music notes.

During one of Knickerbocker’s worst auras, she says she lost feeling in her right hand and felt like she was “stepping through the floor” if she tried to move.

“I had so much brain fog that if I was having a conversation with someone I couldn't remember what they were saying,” she recalls.

This particular aura is what pushed her to begin seeing a neurologist.

Still, Knickerbocker says she is actually “thankful” for her auras.

“Typically the aura sets in before the pain comes, and so I can quickly take my medication while I get the aura and I can kind of stave off the actual headache part,” Knickerbocker explains.

BURDEN OF MIGRAINE

In addition to prescription medication that treats Knickerbocker’s migraine, she also takes daily magnesium supplements, as a preventative.

Halker Singh often elects to put migraine patients on preventative medication, based on both attack frequency and level of burden.

“For a lot of people who live with migraine, whether or not they’re in the midst of an attack, they’re constantly thinking about it: Can I go to dinner with my friends? Can I accept this speaking opportunity for work? Can I buy these concert tickets? Can I do this? Can I do that?” Halker Singh explains. “Because what if I were to have a migraine attack and have to back out?”

Knickerbocker has personally found that migraine “takes away from spending quality time with people.”

In addition to impacting someone’s relationship with their friends and family, migraine can affect a person’s career trajectory, Halker Singh points out.

The American Migraine Foundation's 'Migraine Essentials Tote' (Photo courtesy of the American Migraine Foundation)

“Practically, [migraine] takes a toll on my day because I have to go home from work or school or I have to take time off, which is just annoying,” Knickerbocker says. “Even if I can get to my medication, my medication kind of throws me off and so I can't be at work while I'm on that.”

Prior to taking magnesium pills regularly, Knickerbocker would get migraine about once a month. Now, they just “come with stress.”

Although medication has been extremely helpful in both preventing and treating Knickerbocker’s migraines, Dr. Steven Richeimer, the Chief of the Division of Pain Medicine for the University of Southern California’s Keck School of Medicine, warns against over-medicating.

“People feel like anytime they have a headache they should take some kind of pain-relieving medicine, but almost all of the short-acting pain-relieving medicines produce what we call rebound headaches,” Richeimer explains. “So if somebody is using a pain-relieving medicine more than about once a week they are at risk of greatly increasing their risk of having another migraine or another headache.”

STIGMA

Far more women suffer from migraine than men. Halker Singh estimates that about 20% of women have migraine compared with about 6-7% of men.

“A lot of it has to do with hormones, so estrogen is a big culprit as to why there's a gender difference,” Halker Singh adds. “About two-thirds of women who have migraine will have a hormonal relationship to their migraine attacks, and about a third of women who have migraine will have onset around the time of puberty.”

Halker Singh says that in recent years, specialists have been paying more attention to non-biological factors that may impact and/or cause migraine. To be more specific, women are perhaps more affected by migraines as “women process pain differently than males."

“There's a lot of stigmas associated with migraine as well," Halker Singh says. "It's been misunderstood and trivialized."

Pain and stress can be caused by a number of factors that tend to impact women more. For example, women have a higher risk of PTSD which tends to induce stress and can affect migraine.

“Migraine is a problem of pain transmission in the brain. It's truly a pain processing problem,” Halker Singh adds. “This goes back to a question that relates to stigma about is this a brain problem? Are you making it up? What's going on?”

SYMPATHY FOR SEVERITY

Knickerbocker feels “lucky” that she has had sympathetic professors and employers, regarding her condition. In fact, Knickerbocker’s current employer also suffers from migraine and allows her to go home if she feels a migraine coming on.

"Most of my professors were actually very understanding. I don't know if that was just because my school is pretty forward-thinking,” Knickerbocker says. “They really take your word for it if you say that you're feeling off or can't do the work.”

Kelly Knickerbocker with her siblings (Photo courtesy of Kelly Knickerbocker)

However, Knickerbocker’s brother, who also suffers from migraine, has not always experienced the same kind of sympathy.

“From hearing responses to his migraines, I don’t think people take it very seriously,” Knickerbocker says. “I think they just thought he was lying. Maybe it was a coach in high school who thought he was just trying to get out of practice.”

"MIGRAINE POSE"

In 2018, Elle Magazine conducted a campaign called the “Migraine Pose,” encouraging their models and others to pose as though they were suffering from migraine.

The magazine claims “the pose tightens the face, makes your cheekbones look more prominent, and lifts the brows. It's a temporary facelift for the 'gram.”

“You can only imagine how people who actually have migraine felt about that,” says Halker Singh. “It trivializes this real disease.”

Gigi Hadid, model, doing the "migraine pose" (Instagram: @gigihadid)

The President of the American Migraine Foundation wrote a letter to Elle USA, encouraging the platform to right its wrong and “use its reach and influence to demonstrate compassion and understanding for the millions of women around the world fighting to live a normal a life, while dealing with a devastating illness.”

Elle Magazine never responded to the letter, but changed the article header from “migraine pose” to “headache pose.”

Because society tends to minimize the severity of migraine, fewer than 50% of people who have migraine even seek medical care for migraine, according to Halker Singh.

“I think we as physicians need to do a better job explaining what the symptoms can be,” Halker Singh says. “But I think there also is more work we need to do within the community at large to de-stigmatize migraine. And to increase community awareness.”

REBRANDING

Recently, migraine headaches have gone through a rebranding and are now referred to as “migraine” rather than “migraines,” as migraine is a singular disease process that has both an external and internal burden, according to Halker Singh.

“This is an update that's supposed to help combat stigma. The idea is that we don't say “asthmas” because the disease is asthma and everybody who has asthma should be given something to take as needed for an asthma attack and some people who have asthma need to be put on prevention treatment as well,” Halker Singh explains. “We're trying to change the community awareness of migraine as a disease kind of like [asthma], where everyone who has migraine should be given as-needed treatment, and some people who have migraine should be given prevention medication as well.”

Rebranding is a first necessary step toward raising awareness and promoting acceptance about how seriously and widespread migraine impacts so many.

“What image comes up if you literally just do a Google search on "migraine?” The picture you're gonna see is a thin white woman who has her hands on her head,” Halker Singh points out. “That is a very stigmatizing look because over 1 billion people in the world have migraine: People who have migraine look like everybody else: They're every gender. They're every color. They're men. They're women. They're children. They're adults. They're everybody.”