What it's like to have migraine with aura, a poorly understood condition that can cause sudden, temporary blindness

blurry vision blurry vision
Disturbances in vision originate in the brain.
  • The first time I experienced a migraine with aura, a condition which for me involves sudden and temporary loss or disruption of vision, I thought it was due to a fall on the ice rink. 
  • I've now learned the condition is less common that regular migraines, and isn't very well understood. 
  • The condition seems to be genetic, but can also be triggered by things like bright lights or red wine, and can be affected by hormonal birth control pills. 
  • Avoiding known triggers and taking certain medications, or making adjustments to current drug medicines, can help manage migraine with aura. 
  • Visit Insider's homepage for more stories.

A few months after I turned 15, I attempted – and failed – a spin on the ice rink.

When I stood up to laugh it off with my twin, her face appeared rearranged. My friend's face was missing its brown eyes. Even a fellow skater seemed to be disintegrating on one side of his body.

Within a few minutes, my head throbbed to the point of nausea, and I found myself huddled on the floor of a bathroom stall, both blind and in the worst pain of my life.

My mind raced with thoughts of living the rest of my life without my vision. I was already working out in my head what I would do in that case, and how I would be able to finish school. 

Thankfully, over the next 45 minutes, my vision slowly returned. It wasn't until months later, when the now-familiar kaleidoscope effect came and went again, that I learned what I had been experiencing is a relatively rare phenomenon called migraine with visual aura, and it most likely had nothing to do with my icy fall.

Migraine aura is usually characterized by visual disturbances

According to the American Migraine Foundation, migraine itself is fairly common, occurring in approximately 12% of the population. As many as 85% of chronic sufferers are women.

Most people know and can recognize the signs of a classic migraine: throbbing pain that often occurs only on one side of the head, nausea and vomiting, and sensitivity to light, noise, and odors.

But only about 15% to 20% of migraine sufferers have experienced an aura, making it a lesser-understood condition, according to headache specialist Dr. Regina Krel, who is certified by the American Board of Psychiatry and Neurology and practices at Hackensack University Medical Center in New Jersey.

Migraine with visual aura is characterized primarily by visual disturbances like the ones I face, including blind spots and loss of peripheral vision, and seeing zigzag lines, spinning objects, and flashes of light.

Though they are experienced through the eyes, the changes that wreak havoc on the visual field are actually caused by a phenomenon that takes place in the back of the brain, where the visual cortex is located, Krel said.

Ordinary migraine attacks might start in other areas of the brain, which is why most migraines do not cause aura.

Cailin Loesch
The author (right) and her twin pose with heart attack survivor Sharon Bond for their online series, Double Talk.
Courtesy of Cailin Loesch

Not all auras are visual 

Less frequently, sufferers endure "motor auras" including numbness, speech or language difficulty, and muscle weakness — symptoms that 52-year-old Tiffany Clements, who worked as a drug counselor in Arkansas before having to leave work due to her condition, knows all too well.

"My face droops, my speech becomes very slurred, and I can't speak well enough to form a sentence," she told me. "I can't find words that I know very well ... honestly, I come across as someone with a brain injury."

Clements said that like my visual auras, her motor auras tend to come on very quickly, and with no warning.

"If it happens during a meal, I ask whomever I'm with to speak for me," she added. "It's such a struggle to speak. It has a tremendous impact on my life."

Migraine with aura is genetic but can also be triggered 

According to Krel, what migraine headaches and migraine auras have in common is that they are both genetic, so sufferers are predisposed to the condition from birth. However, for those who are prone to migraine, whether they include auras or not, there are certain environmental factors, such as bright lights and drinking red wine, that can trigger an attack.

"No one trigger is going to be the same for every individual, and no one trigger is going to predict whether the migraine attack is going to come on with aura or without," Krel said.

For me, a dramatic increase in migraine auras occurs when changes are made to my hormonal birth control prescription, which I've heard is not uncommon. Krel said this is due to fluctuating estrogen levels that occur in patients who take the combined pill (a birth control pill that contains both estrogen and progestin).

For the same reason, many sufferers tend to experience auras around the time of their period, when estrogen levels take a dive.

"We know that there's a clear association between estrogen and migraine, and in particular, migraine with aura. The week before your period comes on, your estrogen levels drop abruptly, and frequently that drop in estrogen triggers migraine attacks," she said.

birth control
Hormonal birth control can affect when, if, and how severely migraine auras arise.
Image Point Fr/Shutterstock

Adjusting your birth control regimen can help reduce the risk of stroke 

Unfortunately, the link between estrogen changes and migraine aura poses a paradox when it comes to treating migraine: Certain treatments can stop headache pain, but cause aura.

"To prevent migraine headaches — not aura — we'll sometimes put patients on a continuous estrogen-based birth control to prevent that drop in estrogen," Krel said. "With aura, though, it gets a bit tricky because the elevation of estrogen can actually trigger the aura attacks."

Aside from just trying to prevent an unwanted lights show at the drop of a hat, there are other, more serious reasons to talk with a doctor about your history of migraine. While Krel assured me that auras themselves are not dangerous, she confirmed that there is an association between migraine with aura and a slightly increased risk of stroke — a risk that does not exist in connection to migraine without aura.

Since a patient's use of birth control that contains estrogen is an additional factor that has been shown to increase stroke risk, Krel said certain hormonal methods of birth control need to be used cautiously by sufferers of migraine aura, as the combination of being a patient with migraine aura and taking estrogen-based birth control increases stroke risk even more.

Managing migraine with aura involves preparation 

While there is currently no magic drug geared specifically toward preventing migraine auras, some treatments, like magnesium supplements, might help, Krel said.

Some patients, like Clements, have found some relief from a preventative prescription drug called Lamigtal (or lamotrigine), but it carries a risk of side effects like dizziness, blurred vision, nausea, and tremors.

Clements also takes Phenergan, which acts as an antihistamine, and Tizanidine, which treats muscle spasms. She copes by going to a quiet, dark room while she waits for the medications to work and her symptoms to ease.

"Sometimes, I still have to go to the ER for IV meds and fluids," she added.

For me, management means always carrying with me prescription pills that contain strong doses of acetaminophen, butalbital, and caffeine; closing my eyes; and reminding myself that the aura always passes.

Throughout college, I learned to not be afraid to excuse myself from a lecture if I started to lose my vision, and I give myself the same break now when a migraine aura strikes in the office. After it passes, I send a quick note to a manager or professor, and they usually seem to understand, something that Krel hopes becomes more common with education.

"There is still a stigma that's associated with migraine that our society can't seem to shake — if you ask people who don't know, they call it a headache," she says. "And as you understand, it's way more than that."

FOLLOW US: Insider is on Facebook

More: Migraine medical condition Headache Vision