Flashes, shimmers and blind spots: Here’s what migraine aura looks like


Blurred vision. Shimmering lights. Blind spots. Zigzag lines. This is what migraine aura looks like.

Migraine is a neurological disorder characterized by severe, even debilitating, pain on one side of the head, and can be accompanied by other symptoms such as aura, a sensory disturbance that can cause temporary visual impairment.

The Washington Post spoke to four chronic-migraine sufferers about living with migraine aura. Based on their vivid descriptions, we created video illustrations to show what migraine auras look like through the eyes of people who suffer from them.

Bethany’s aura

Bethany Noël, a 36-year-old professional artist from Boston, is one of the more than 1 billion people worldwide who suffer from migraine, and among the estimated 25 percent of migraine sufferers who experience aura. She sees it most days, whether her eyes are open or closed.

Noël experiences aura in various ways, which she tries to capture in her art. She describes one aura as resembling a heat wave that can include swirls of color or darkness. She said that sometimes parts or even all of her vision goes black or she sees “deep galaxy swirls of color,” like this.

Noël has suffered from chronic migraine with aura since she was 10 years old. It took several doctors, medical tests and trips to the emergency room over more than a decade before she was diagnosed in her early 20s.

Migraine is the second leading cause of disability in the world, and the first among young women. Attacks can last for hours or days. It affects more than 12 percent of the U.S. adult population.

Scientists don’t fully understand the mechanisms of aura, but they have several theories. In patients with migraine, researchers have seen a phenomenon called cortical spreading depression, a wave of altered brain activity that may reduce blood flow in the visual cortex, leading to visual disturbances. It may also be related to hormonal changes. Migraine is three times more common in women, especially in their reproductive years.

Bethany Noël hasn’t had a day free of migraine pain since 2020. (Alexa Juliana Ard/The Washington Post)

Noël said she paints to push back from the despair that comes from living with a chronic illness. She has been selling her art since she was 15 years old.

“My paintings are a much more accurate depiction of the intensity of color that I experience,” she said.

Visual aura is a symptom of chronic migraine. Bethany Noël, a professional artist, paints the auras she sees as part of her experience living with chronic migraine. (Bethany Noël)
Bethany Noël says painting her aura helps her cope with chronic migraine. (Bethany Noël)

Sometimes her aura includes shimmering lights or bright glares, like this.

Bethany Noël has suffered from chronic migraine with aura since she was 10 years old. She paints the auras she sees to give others a glimpse into her world.
(Alexa Juliana Ard/The Washington Post)

During one migraine attack, Noël described the feeling as if someone was trying to “poke a spear” out of her eye on the right side of her head. A trip to the pharmacy to pick up her prescription medication can make an attack worse because of her sensitivity to light, smell and sound. Her symptoms can also include dizziness, nausea and aphasia, a disorder that makes it difficult to communicate.

Her paintings depict the woods and the way her aura turns them into an “exploration of Narnia.”

Noël’s paintings often depict how her visual aura appears when she’s in the woods. (Alexa Juliana Ard/The Washington Post)
Noël uses chalk, pastel, graphite, gesso and acrylic paint to create representations of her migraine aura. (Alexa Juliana Ard/The Washington Post)
Noël has sketches pinned to the walls of her studio. (Alexa Juliana Ard/The Washington Post)

In 2021, she began a preventive treatment for chronic migraine called eptinezumab, sold under the brand name Vyepti, which is given by intravenous infusion every three months.

At Brigham and Women’s Hospital, where she receives the treatment, the bright lighting can make her migraine worse. When she is called to begin the 30-minute infusion, she asks for the lights to be turned off.

Pain-free days are rare for Noël, but an infusion treatment called Vyepti has helped decrease the severity of her chronic migraine symptoms. (Alexa Juliana Ard/The Washington Post)

After an infusion, Noël received her bill from Brigham and Women’s Hospital for more than $21,000. Under her insurance with Blue Cross Blue Shield, her out-of-pocket cost was $4,000.

An excerpt from a medical bill. It has three charges all made on January 6 in 2023. One is for hospital services for $20,526.87. One is for IV Therapy for $958.00. The last charge is for hospital services for $7.65, with a grand total of $21,492.52.
An excerpt from Noël’s migraine treatment.

Noël also takes Ubrelvy, a prescription medicine that can reduce the severity of a migraine once it has started. The drug can cost about $100 per pill. Vyepti and Ubrelvy are in a class of drugs that act on a protein in the brain called CGRP or its receptor. CGRP stands for calcitonin gene-related peptide, and it’s released during migraine. Drugs in this class work by blocking CGRP from attaching and activating specific receptors believed to play a role in migraine.

Some people who experience migraine say that some of the CGRP drugs help initially but later stop being effective. That’s what happened to Noël after she tried Emgality, a monthly self-injection. The drug was “significantly life changing,” she said, but then it stopped working.

Even with the advancements in migraine treatment and their costly price tag, Noël is still not symptom free.

She said her last day without pain was in 2020. Of all the treatments she’s tried, she said the CGRP treatment has done the best at making her chronic migraine symptoms less severe and more manageable.

On a scale of one to 10, “If my average pain level for the month is under a five, that’s a pretty good success for me,” she said.

Keisha’s aura

After a car accident in 2014, Keisha Patterson noticed a change in her vision. She thought she just needed new glasses, but it was actually chronic migraine with aura. (David Carter for The Washington Post)

Keisha Patterson developed chronic migraine with aura after a car accident in 2014. She was driving to her 2-year-old daughter’s birthday party when the accident happened and she suffered a concussion.

“One of the first things I noticed was my vision changed,” Patterson, 40, said. “I was reading something, and I couldn’t see out of my right eye as I normally would.”

When Patterson experiences aura, it starts small, but gradually her vision becomes foggier and looks like the glare around a car’s headlight. “It’s almost like it can blind you in the moment as it progresses,” she said. Her aura looks like this.

Now, before getting in the driver’s seat, she packs what she calls her “migraine kit.” It contains items that help manage her migraine triggers, such as light, smell and sound. The kit includes sunglasses, blue-light-blocking glasses, purple-tinted glasses, earplugs and tissues to cover her nose. She packs medications and water, and also checks AccuWeather’s migraine forecast.

“With migraine you always have to stay ready for whatever symptom comes,” said Patterson, who has visual aura every day, sometimes with migraine pain and sometimes without. At times, the aura blocks her vision while driving, and she must pull over and rest her eyes.

Keisha Patterson has visual aura every day at varying intensities and for different lengths of time. (David Carter for The Washington Post)

To cope with migraine aura, Patterson has dimmed the lights all around her. The windows in her home are covered by blackout curtains. The brightness on screens and her car’s dashboard have been lowered. She compares the experience to “living like a vampire.”

Patterson treats her migraine with Botox injections and Emgality. She still sees aura every day, but the intensity of it has decreased with the medicine. The treatments have “turned me around where I can be more functional,” Patterson said.

Walker’s aura

Walker Young, 46, spends most of his time at home in downtown Toronto watching what looks like a fireworks show dancing across his vision, like this.

Because of chronic migraine with aura, he took medical leave from his job as a manager with the City of Toronto. His aura is followed by debilitating headache pain, extreme fatigue and slurred speech. “I’d say something and people would look like, ‘What are you talking about?’” Young said. As the migraine stages progressed, it affected his ability to see, speak and think.

Walker Young, 46, has had chronic migraines with aura at least four days a week for the past two years, forcing him to go on medical leave from his job as a manager with the City of Toronto. (Katherine KY Cheng for The Washington Post)

One day, Young’s veterinarian called him to let him know he could pick up his dog. He happened to be in the midst of a migraine attack. The vet thought he had been drinking because his speech was slurred and suggested someone else retrieve the dog.

Young told his neurologist he could find a way to deal with the pain of the migraine. “It’s the aura,” he told him. “That’s the worst part, because it affects how you do things and your behaviors.”

Young, out for a walk with his dogs in Toronto. Young has had chronic migraine with aura at least four days a week for the past two years. (Katherine KY Cheng for The Washington Post)

His migraine triggers include certain foods, such as chocolate, dairy and anything high in gluten, and changes in pressure due to the weather.

Young, who lives with his partner and their dogs, also has a number of other health conditions, including Crohn’s disease and narcolepsy. The latter results in him sleeping up to 18 hours a day and even longer if he has a migraine.

Young misses work and interacting with people and having a routine. But when he tried to return to work, his migraine with aura made it difficult to function.

Young, 46, talks with his partner, Derek Chen, 50, at their breakfast table in Toronto. (Katherine KY Cheng for The Washington Post)

In the past two years, Young has had migraine attacks with aura at least four days a week. He’s tried every possible migraine medication, including CGRP drugs, Botox and others. But nothing has worked.

The next step for treatment recommended by his doctor: psychedelics. He hasn’t decided whether he wants to take that step, and will give Emgality another try before he does. He’s currently taking Verapamil, a calcium channel blocker used for blood pressure and heart conditions and is believed to work in migraine by preventing the constriction of the blood vessels before an attack. He also takes Ubrelvy, but he said it hasn’t provided relief for him.

He’s not sure when he’ll return to work. For now, he takes advantage of the few pain-free and aura-free days he has by watching TV, doing puzzles and playing with the dogs.

Nahid’s aura

Nahid Shukralla’s auras are most vivid when her eyes are closed. Sometimes they wake her from sleep.

Shukralla describes her aura as moving shapes, colors and flashes of light that she sees in different quadrants of her vision. “The more intense the color is, that is a more intense aura, and it can wake me up from sleep,” she said. Her aura looks like this.

Shukralla, who lives in Ottawa, was diagnosed with chronic migraine in 1993. Her first experience with migraine aura happened while driving on the highway right before sunset in Chicago. Her husband was asleep in the passenger seat. Suddenly, her vision became blurry in one eye. She tapped on her glasses, thinking a lens popped out. But the lens was there.

She closed the eye that was blurry and focused on what she could see out of the other eye until she could pull over.

Nahid Shukralla at her home in Ottawa. She has suffered from chronic migraine since 1993. (Jessica Deeks for The Washington Post)

In 2014, Shukralla began creating migraine art by painting images of her aura. Later in 2020, she learned how to animate her aura, which she shares on her Instagram account.

Shukralla paints her migraine auras in her home studio in Ottawa. (Jessica Deeks for The Washington Post)

Since her diagnosis, Shukralla, 60, has tried different medications prescribed by her doctor to treat migraine, including propranolol, calcium antagonists, antihistamine antagonists, anti-seizure medications and birth control. “None of them were helpful,” she said. She has also tried biofeedback and acupuncture, with no relief.

A collection of Shukralla’s migraine medication. (Jessica Deeks for The Washington Post)
Shukralla injects herself with migraine medication. (Jessica Deeks for The Washington Post)

In 2018, she tried Aimovig. At the beginning, it worked wonders. “It really changed my life. I could function more, I could think, achieve more in the day,” she said.

But then the effects wore off. She switched to Emgality, but it didn’t work as well, and has since started Vyepti.

“I’m waiting for other medications to be available,” said Shukralla. “I still get the same amount of migraine, which is more than 15 migraines a month as a chronic migraineur, but the pain is less severe.”

Sometimes the only refuge when a migraine aura strikes is lying down in a dark room.

Shukralla rests to soothe her migraine at her home in Ottawa. (Jessica Deeks for The Washington Post)

[Sign up for the Well+Being newsletter, your source of expert advice and simple tips to help you live well every day]

About this story

Story editing by Tara Parker-Pope. Video editing by Alexa Juliana Ard and Neeti Upadhye. Animations by Brian Monroe. Design by Chelsea Conrad. Development by Audrey Valbuena. Design editing by Christian Font and Matt Callahan. Photo editing by Maya Valentine. Copy editing by Shannon Croom.





Source link

Rate this post

Leave a Comment