Rose Wong
Tampa Bay Times
WWR Article Summary (tl;dr) Rose Wang takes a look at how several migraine sufferers cope with what can be an enormously frustrating and debilitating condition.
Tampa
Teresa Faiello was driving in Washington D.C. rush hour traffic when “stars and blind spots” filled her vision. Robbed of her peripheral vision, a sharp pain radiating from behind her eyes to the back of her skull, she had to pull over.
That was more than two decades ago. Faiello, now a Lithia resident, vividly recalls the worst migraine headache she suffered in her 52 years and how much it scared her. She spent 20 minutes parked on the side of the road until she could see well enough to get home.
“I was done for the rest of the day,” she said. “I couldn’t do anything.”
That’s what life is like for migraine sufferers. They live with the constant fear and stress of not knowing what could trigger another painful, days-long episode — or when. They can experience debilitating pain, nausea, vomiting and sensitivity to lights and sounds that could last for days.
“So many people think it’s just a headache,” said Dr. Clifton Gooch, chair of the neurology department at the University of South Florida and founder of its Headache Center. “But migraine is one of the leading causes of disability in the U.S. and worldwide.”
Migraines are the third most prevalent illness in the world, according to the Migraine Research Foundation. Migraines and headache disorders are also the fifth highest cause of disability among ages 25 to 49 and second highest among ages 10 to 24, according to an October study published by the Global Burden of Disease Study.
The pain typically emanates from one side of the head and can be exacerbated by light and sound. While some sufferers receive no warning, others experience aura — sensory changes such as blind spots in vision, tingling in the face or limbs, or auditory hallucinations — prior to an attack. It is considered a chronic condition when it occurs at least 15 days a month for three months, Gooch said.
Dr. Katherine Standley, a neurologist at the Florida Medical Clinic, said the list of migraine triggers are long and vary by person. But commonalities include changing weather, stress, certain foods, and the start of a menstrual period.
That last factor is important because women are especially prone to migraines, due to their hormonal makeup and changes. Standley said that 85 percent of her migraine patients are women, who are twice as likely as men to develop the chronic condition. The illness also tends to run in families and develop in patients between their 20s and 40s.
June is Migraine and Headache Awareness Month. The Tampa Bay Times spoke with migraine sufferers about what it means to live a life that is always a moment away from coming to a painful halt.
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Faiello has struggled with migraines since she was a teenager. Her mother has them and so does her daughter, Times sportswriter Mari Faiello.
Teresa Faiello said she experiences pain most days. She takes Topamax, an epilepsy drug that can help prevent migraines. She said it has caused her to temporarily forget words while talking, a reported cognitive side effect of the drug.
But after four years of Topamax, Faiello said it’s no longer effective. Her doctor recommends switching to Aimovig, which she must inject herself once a month. But Faiello is uneasy with the idea.
“I don’t like needles,” she said, “especially not when I have to do it myself.”
Faiello, an insurance adjuster at USAA, spoke to the stoic attitude many migraine sufferers say they must adopt to make it through their lives. They constantly dread the pain, and then when it hits, feel that they must maintain a facade of normality.
“You don’t want to be that person who’s constantly not feeling good,” Faiello said. “The mental drain, more than anything, is trying to compensate when you’re not feeling good and trying to put on your game face.”
• • •
Christopher Vela has spent 37 of his 44 years living with the pain.
An hour before the migraine hits, he could lose his peripheral vision, see bright speckled spots in his vision, experience auditory hallucinations that sound like a “rip roaring chainsaw,” and become sensitive to sounds, smells and lights.
“People would be like, ‘Why are you wearing sunglasses inside?’ and it’s because my eyes are hurting.”
He experiences this just about every other day, Vela spent more than 20 years in the architecture business before he was laid off last year during the pandemic. He believes his worsening migraines made him a vulnerable target.
During the attacks, Vela said he would “flip flop words and numbers” while writing project proposals or struggle to differentiate shades of color. His migraine mistakes, he said, slowed him down and made him second guess his work.
There were also times, Vela said, he had to abruptly excuse himself from a conversation with a colleague because he was about to throw up. He also had to cancel work trips when he became too sick to travel.
Vela, who now works as a sales representative for Nordstrom Rack, used to beat himself up about the physical toll he endured.
“It’s embarrassing because I feel like I could do better (enduring it),” he said. “But now I’m accepting I was under a lot of pain. I had legitimate reasons.”
He has spent decades looking for the right medication. He shared his medical records with the Times, which show that he’s tried Naproxen, Fiorcet, Fiorcet with codeine, BC powder, Thorazine, Ubrelvy, a combination of Compazine and Benadryl, Nortriptyline, Venlafaxine, Propranolol, Nurtec ODT.
Sumatriptan injections might have worked if they didn’t give Vela hives. Verapamil, a blood pressure drug that can relieve migraines, made him dizzy. Maxalt relieved his migraines, but lost its effectiveness after five years. Medicinal marijuana helps ease the pain enough to allow him to sleep. But he cannot use it and function during the day.
Vela is now trying Botox injections. He had his first round in April. It’s used in cosmetic procedures to reduce facial wrinkles and to treat other ailments but can also prevent migraines. Patients typically receive head and neck injections every three months.
The manufacturer lists a yearlong supply of Botox treatment at $4,800, excluding injection fees. Vela is on his wife’s health care plan but relies on a pharmaceutical company’s patient assistance program to help him afford the injections. He has yet to feel a difference, but it can take multiple rounds of treatment for it to take effect.
There is also a psychological toll. Vela said hours after the throbbing pain subsides, the attack leaves him feeling fatigued, isolated and dejected. He struggles to open up about his ordeal, despite how common migraines are. His two grandmothers also struggled with chronic migraines, but never talked about it.
“When I first developed migraines as a child, I felt burdened, alone, and didn’t know how to describe them as more than a headache,” Vela said. “This behavior led me into a cycle of a ‘just deal with it’ attitude that made my life even more dishonest than I realized.”
• • •
Darlene LeBlanc knows her triggers.
The 63-year-old Spring Hill resident doesn’t have to look out the window to know the weather is about to get bad. Thunderstorms, rain, humidity, alcohol, sugar, chocolate, onion, soy sauce, perfume and aftershave can all bring on attacks.
Her chronic condition has caused her to miss her kids’ gymnastic competitions, family vacations and even sidelined her during a company trip to the historic Biltmore Estate in North Carolina. Her employer was honoring her as its top health insurance salesperson of 1998 but she said she “forced” herself to get through the pain of the last two days of her trip.
“I missed a lot of life because of migraines,” LeBlanc said.
Her gauntlet of migraine medications includes Imitrex, Fiorinal, Toradol, beta blockers, and “all the over-the-counter-ones.” Then 2½ years ago she enrolled in a clinical trial for Nurtec ODT and thought she found a “miracle drug.”
“It took away my migraine within an hour,” she said. “I didn’t even have an inkling of a headache after.”
But the Food and Drug Administration had yet to approve the drug. When the trial ended, so did her access to the medication. She was back on Zomig, which dulled her pain but never eliminated it. Her prescription drug copay was $90 per month. Her health insurance only covered six to eight pills each month, so LeBlanc used it sparingly.
“I would only take it when the migraine got really bad,” she said.
Federal officials have since approved Nurtec ODT. LeBlanc is back on the only drug that has ever worked for her — with just a $10 monthly copay.
“I’m so glad because I have grandkids on the way and I was worried I couldn’t be there for them.”
• • •
Kristin Berry’s migraines always start two days before her period.
She experiences three to six attacks per month, each lasting up to three days. She often experiences dizziness, a stomach ache, nausea and vomiting and becomes extremely sensitive to lights and sounds.
The St. Petersburg entrepreneur owns a branding and business consulting firm called The Dashing Ginger. But her migraines can be so intense that she’s had to cancel or reschedule sessions with clients. It’s difficult, she said, to convey what migraine sufferers go through to others, especially those who don’t suffer from chronic pain.
“People don’t understand the struggle of migraines,” Berry said. “They think it’s just a bad headache.”It’s funny because I have migraines that can put me out for days. Some of my friends don’t even get headaches.”
Berry also has a history of anxiety. She wonders if stressing out about her migraines causes her to experience more migraines.
“It’s hard for (migraine sufferers) to live a really fulfilled life without constantly worrying, because we know at some point in the month or week that pain will occur,” she said. “It’s a really strange life.”
It helps to lean on others. She’s in a 12,800-member Facebook group called Chronic Migraine Awareness Inc., which she called “a safe space for people to ask questions or share experiences.” She’s also part of a women’s networking group called Babe Crafted. The founder knew Berry and four other women in the group who suffer from migraines and connected them via email.
A few weeks ago, Berry said a member of Babe Crafted asked other women in the networking group whether they talk openly about their chronic illness with business clients and social media followers.
“I had kind of this epiphany moment,” Berry said. “Migraine is a chronic illness. Usually when I think ‘chronic illness’ I think of people with Crohn’s or Lupus, but I’m like, no, migraine is a chronic illness that we deal with monthly, weekly, daily.”
Berry said that realization empowered her to start talking openly about her experiences and to educate others about the chronic illness. She plans a brand refresh for her company, and part of that will include sharing her experience with migraines.
“You can be actively battling a chronic illness and still look like you’re working hard, happy, and seemingly normal,” Berry said. “But literally on the inside you could be going through hell.”
“No one knows what you’re going through unless you’re talking about it.”
Distributed by Tribune Content Agency, LLC.
