What it’s like to experience “migraine with aura,” a debilitating chronic health condition

It was Christmas Day 2012. My friend and I had just sat down for turkey served with a side of cheesy Hallmark holiday movies when I felt my left hand start tingling. It crept up until my whole arm was numb, while I simultaneously lost sensation on the left side of my face. The numbness slid down to my neck and as I started to lose feeling inside my throat, I was terrified I wouldn’t be able to breathe for much longer.

My friend, who suffers countless food allergies, bolted to get me an antihistamine, which appeared to relieve the numbness and within 30 minutes all was back to normal—until a pounding migraine set in. It kept me in bed for the next two days.

I had never suffered headaches before, and it was four years before it happened again, late one night while I was home alone, panicking about who (and how) to call if my airway became numb again.

This time, I stood in the kitchen thinking I was going mad because I couldn’t see my right arm in my peripheral vision like I could the left. I then lay in bed desperately racking my brain to remember where my friend lived. “It’s New-something Beach,” I told myself over and over, baffled at why I couldn’t remember something I knew I’d never forget. (It’s Newport Beach, for the record.)

Two days later a “tele-doc” assured me I was fine.

It was partly laziness, partly work, and partly the same feeling I still experience today that stopped me going to my actual doctor. Once the symptoms hit, time stops. I wallow in frustration, self-pity, and sometimes even tears. Yet, once the worst passes, I find myself questioning if it was actually that bad or if I was just being a drama queen, given that I can function now, albeit with a lingering headache.

When I did finally see my doctor, after several more incidents of visual disturbances followed by excruciating migraines—three times in a week at one point—she immediately diagnosed me with migraines with aura, ordered an MRI (which came back clear), and referred me to a neurologist.

According to the American Migraine Foundation, migraines affect 12% of the population (around 39 million Americans), and of those patients, 25-30% suffer aura—defined as a a sensory disturbance—which indicates that an astronomical 9+ million people are suffering migraines with aura in the U.S. alone.

The sensory disturbances can include blind spots, speech difficulty, numbness, and confusion, and the trippy nature of the visual disturbances is said to have inspired famous pieces of art. Aura typically lasts 20-60 minutes before a migraine kicks in, although some patients suffer aura without subsequent head pain.

“We believe that cortical spreading depression is the reason why you have an aura, says Cathy Glaser, executive director of the Migraine Research Foundation, which raises money to fund research, improve treatments, and finds causes and cures for migraines. “It’s an electrical force that goes through your brain and the result is aura. What causes that is still unknown.

So, with well over 1 billion people estimated to be experiencing aura worldwide, why had neither I nor most people I know heard of aura in a medical sense?

“I think it’s largely undiagnosed, Glaser says. “And if you don’t know that’s what you’re suffering, you’re not going to talk about it.

Women are bearing the brunt of migraines, a genetic neurological disease. The Migraine Research Foundation states that 28 million (out of 39 million) migraine sufferers are women, with an increased occurrence during the reproductive years, which makes me—a 37-year-old woman with a mother who suffered migraines (without aura) in her forties—a prime candidate.

My neurologist’s first suggestion was to stop drinking coffee for a month. “Ha!” I thought. “As if.” Caffeine helps alleviate migraine pain, but is less effective if your system is used to it, he said. For a month, I reluctantly sipped the various flavors of hot chocolate I bought to justify my new and unwanted habit, instead of the extra-strength espresso I bring back in bulk every time I go home to New Zealand. I didn’t suffer any migraines to test the theory that the drugs would be more effective and promptly resumed my caffeine habit when the month was over, given that I’ve had it two decades and gone years without migraines.

In the year since, I’ve experienced migraines anywhere from every two weeks to once in four months, and they’ve followed a consistent pattern of blind spots and visual disturbances before a pounding migraine lasting 8-12 hours, but often lingering for days.

Numbness and confusion haven’t haunted me again, but recent episodes have come with a second round of aura 12 hours after the first, followed by an even more intense head-pounder.

Although I’m sometimes guilty of staying on my laptop, common advice is to lie in a dark room until aura passes. My neurologist prescribed Excedrin with caffeine and Tylenol to take at the onset of symptoms, and sumatriptan for when the migraine starts to set in, but the pill makes me nauseous and it’s difficult to know whether it’s easing my pain or I’m just experiencing a less intense migraine. I’ve found codeine to be more effective for pain management, and on my worst days I’ve taken all of the above.

The Aculief (a small device placed between your thumb and forefinger to apply pressure to the L14 acupressure point) seemed to help ease pain during one episode, but again, it’s hard to know whether treatments are working or it’s just a lesser migraine, and ultimately my most effective move has been sleeping it off. The FDA recently approved a device that uses smartphone-controlled electronic pulses to relieve migraine pain.

As for preventive measures, magnesium supplements keep aura at bay for some, and in 2018, a new medication, Emgality, was introduced. Emgality belongs to a class of drugs called CGRP inhibitors, which aim to reduce the frequency of migraines. The monthly injections have a list price of $6,900 a year, and a common theme in reviews is that they are painful but effective.

For Jennifer Cote, who has suffered “debilitating” migraines since she was 6-years-old, the injections have been life-changing. Her aura took the form of “everything smelling like skunk,” and she averaged 12-15 incidents per month until starting Emgality in December. She’s had only three migraines since, and none since March. Aside from pain and a rash at her injection site, the treatment has given her new life, with triggers like irregular sleep, chocolate, and travel no longer a problem.

“I experienced so much anxiety because the simplest things would trigger migraines, she says. “Now, I feel like I can take on the world. I've been told I'm a ‘glass half-empty’ girl, and some of that has definitely lifted. When you're not in constant pain with a deep-seated fear hanging over your head, it's freeing.

Others swear by Botox, an FDA-approved treatment for those who suffer chronic migraines (more than 15 days per month.) Botox is injected around pain fibers in the head and stops chemicals involved in pain transmission from being released. Maureen Dooley suffered migraines with aura multiple times a week or day until getting Botox. “I’ve been free of them for over 15 months and get the injections every four or so months,” she says.

“Any drug that helps your migraine is life-changing, but Botox in particular because it eliminates or significantly decreases the need to take other medication for a long period since it lasts 3-4 months, Glaser says.

She notes that like with any other treatment, neither Emgality nor Botox will work for everyone and adds that general healthy habits, like consistent sleep patterns, regular meals, and managing anxiety can make a huge difference.

“It’s not going to make migraines go away, but it will help you manage them.”

Pain and inconvenience of migraines aside, one of the worst parts has been worrying when the next one will hit. The unpredictability carries an often-unshakeable fear, and an endless string of “what if”s. What if I walk into a bucket-list celebrity interview and confusion hits? What if I get married and experience visual problems right before walking down the aisle? What if I’m driving and numbness occurs? Having gone three months without a migraine, the tiniest glitch in my vision ignites a wave of dread that the auras are back.

I often feel unjustified for taking a sick day or cancelling plans because of what so many people hear as “just a headache.” I feel silly for whining about my symptoms when I know there are people out there battling life-threatening conditions, or migraine patients suffering worse and more frequently than myself.

Take Melissa Phelps—she’s 38-years-old and has been suffering since she was 12 years old. “I was looking at the teacher and her face suddenly disappeared,” she recalls. “I was scared so I went to the sick bay, at which point the left side of my face went numb and I started vomiting.” An MRI ruled out doctors’ stroke suspicions and Melissa was told it was a migraine with aura, which she continued to suffer weekly or monthly for the next few years, relying on Imigran nasal spray for relief.

Though Melissa went aura-free for a while, the weekly bouts returned when she started planning her wedding at 21-years-old, and they became daily after she got pregnant later that year. Symptoms stopped after she gave birth, then returned when she was expecting her second daughter at 23-years-old, and became “worse than ever,” when her husband died.

“I tried taking antidepressants, but after one month I started getting multiple auras per day, says Phelps, who has also found codeine effective. “I was left in a financial mess and needed to work but couldn't due to the auras. I suffered terribly until I was around 30 years old, then they stopped for a few years, which was wonderful—I started working full-time in retail and was able to travel with my beautiful daughters. Then they came back two years ago and are now daily. Maybe caused by stress...two teenage daughters!

While Melissa’s patterns suggest stress as a contributing factor, triggers for other people include food, red wine, and menstrual cycles. The rapid drop in the hormone estrogen prior to the start of menstruation is believed to be what ignites migraines in the days before and after periods commence, and the Migraine Research Foundation estimates 7-19% of women suffer menstrual migraines.

Between doctors’ advice, online articles, Facebook groups, and medical studies, the vast number of treatments and suggestions can be so overwhelming, it’s enough to bring on another headache.

I feel lucky that I don’t suffer frequently enough to thoroughly experiment with different treatments, yet not having a guaranteed solution on hand is extremely unnerving.

“Don’t give up, Glaser advises. “There’s no magic pill for migraines, so you have to manage your expectations, be patient and persistent. Take medication enough to give it a chance to work. If it doesn’t, try the next option. If you’re not comfortable with your doctor, find someone else. There isn’t a cure right now, so you have to be realistic, take responsibility for your own care, hope for better management—and not give up!

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