TAMPA, Fla – Teresa Faiello was driving in Washington, DC during rush hour when “stars and blind spots” filled her sight. Deprived of her peripheral vision, a sharp pain that radiated from behind her eyes to the back of her head, had to stop her.
That was more than two decades ago. Faiello, now a Lithia, Florida resident, vividly remembers the worst migraine headaches she had in her 52 years and how terrified it was. She parked on the side of the road for 20 minutes before she could see well enough to get home.
“I was done for the rest of the day,” she said. “I couldn’t do anything.”
This is what life for migraine sufferers is like. You live with the constant fear and stress of not knowing what could trigger another painful, day-long episode – or when. You may experience debilitating pain, nausea, vomiting, and a sensitivity to light and sound that can last for days.
“So many people think it’s just a headache,” said Dr. Clifton Gooch, chairman of the neurology department at the University of South Florida and founder of the Headache Center. “But migraines are a leading cause of disability in the US and around the world.”
Migraine is the third most common disease in the world, according to the Migraine Research Foundation. Migraines and headache disorders are also the fifth leading cause of disability among 25- to 49-year-olds and the second highest among 10-24 year olds, according to a study by the Global Burden of Disease Study published in October.
The pain typically comes from one side of the head and can be aggravated by light and sound. While some sufferers receive no warning, others experience an aura before an attack – sensory changes such as blind spots in eyesight, tingling of the face or limbs, or auditory hallucinations. It’s considered a chronic condition if it occurs for at least 15 days a month for three months, Gooch said.
Dr. Katherine Standley, a neurologist at Florida Medical Clinic, said the list of migraine triggers is long and varies from person to person. But commonalities are changes in weather, stress, certain foods and the start of menstruation.
This last factor is important as women are particularly prone to migraines due to their hormonal makeup and changes. Standley said 85 percent of her migraineurs are women, who are twice as likely to get the chronic condition as men. The disease also tends to run in families and develops in patients between the ages of 20 and 40.
June was the month of awareness of migraines and headaches. The Tampa Bay Times spoke to migraineurs about what it means to lead a life that is always a moment away from painful stagnation.
Faiello has struggled with migraines since she was a teenager. Her mother has her and her daughter, the Times sports journalist Mari Faiello.
Teresa Faiello said she was in pain most days. She is taking Topamax, an epilepsy drug that can help prevent migraines. She said it caused her to temporarily forget words while speaking, a reported cognitive side effect of the drug.
But after four years of Topamax, Faiello said it was no longer effective. Her doctor recommends switching to Aimovig, which she has to inject once a month. But Faiello is uncomfortable with the idea.
“I don’t like needles,” she said, “especially not when I have to do it myself.”
Faiello, an insurance expert at USAA, spoke to the stoic attitudes that many migraine sufferers have to embrace in order to survive their lives. They are constantly afraid of the pain and then feel that they need to maintain a facade of normalcy.
“You don’t want to be the person who is always unwell,” Faiello said. “Most of the mental drainage is trying to compensate when you’re not feeling well and trying to put your game face on.”
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 going to be bad. Thunderstorms, rain, moisture, alcohol, sugar, chocolate, onions, soy sauce, perfume, and aftershave can trigger attacks.
Her chronic condition has resulted in her missing out on her children’s gymnastics competitions, family vacations, and even sidelined them during a corporate trip to North Carolina’s historic Biltmore Estate. Her employer named her as the top health insurance seller of 1998, but she said she “forced” herself to endure the pain of the last two days of her trip.
“I missed a lot of life because of migraines,” said LeBlanc.
Your glove of migraine medication includes Imitrex, Fiorinal, Toradol, beta blockers and “all over the counter”. Then she enrolled in a clinical trial for Nurtec ODT 2½ years ago and thought she had found a “miracle cure”.
“It took my migraines away within an hour,” she said. “I didn’t even have a clue about a headache after that.”
But the Food and Drug Administration had yet to approve the drug. When the study ended, she also had access to the drugs. She was back on Zomig, which eased her pain but never removed it. Her prescription drug co-payment was $ 90 a month. Her health insurance only paid six to eight tablets a month, so LeBlanc used them sparingly.
“I would only take it if the migraines got really bad,” she said.
Federal officials have now approved the Nurtec ODT. LeBlanc is back with the only drug that ever worked for her – with just a $ 10 monthly co-payment.
“I am so happy because I have grandchildren on the road and I was afraid that I would not be there for them.”
Kristin Berry’s migraines always start two days before her period.
She experiences three to six seizures per month, each of which lasts up to three days. She often suffers from dizziness, abdominal pain, nausea and vomiting and is extremely sensitive to light and noise.
The St. Petersburg entrepreneur owns a branding and management consulting firm called Dashing Ginger. But her migraines can be so intense that she had to cancel or postpone meetings with clients. It is difficult to convey to others what migraineurs go through, especially those who do not suffer from chronic pain.
“People don’t understand the fight against migraines,” said Berry. “You think it’s just a bad headache. It’s funny because I have migraines that can keep me exposed for days. Some of my friends don’t even get a headache. “
Berry also has a history of anxiety. She wonders if the stress from her migraines is causing her to have more migraines.
“It’s hard for (migraineurs) to live really full lives without worrying all the time because we know there will be pain at some point in the month or week,” she said. “It’s a really strange life.”
It helps to lean on others. She is a member of a 12,800-strong Facebook group called Chronic Migraine Awareness Inc., which she called “a safe space for people to ask questions or share experiences.” She is also part of a network group for women called Babe Crafted. The founder knew Berry and four other women in the group who suffer from migraines and connected them through email.
A few weeks ago, Berry said a member of Babe Crafted asked other women in the network group if they were open about their chronic illness with business customers and social media followers.
“I was having a kind of epiphany moment,” said Berry. “Migraine is a chronic disease. Usually when I think of ‘chronic illness’ I think of people with Crohn’s disease or lupus, but I think no, migraine is a chronic illness that we deal with on a monthly, weekly, daily basis. “
Berry said that finding this enabled her to speak openly about her experience and educate others about the chronic disease. She is planning a brand refresh for her company, and that includes sharing her experience with migraines.
“You can actively fight a chronic illness and still look like you’re working hard, happily, and seemingly normally,” said Berry. “But inside you could literally go through hell.
“Nobody knows what you’re going through unless you talk about it.”