Caroline Miller woke up on Saturday, April 5, 2014, feeling a little off. The day before, she’d gone to the gym and then to a charity event—nothing out of the ordinary for the social, physically active 27-year-old New Yorker. She’d just gotten her period, though, “and you never feel good when that happens.” So Miller popped some Midol and chalked it up to her hormones.
She grabbed half a bagel and some coffee before heading to her boyfriend’s apartment. When she got there, Miller started feeling much worse. “I felt my heart beating fast, but thought it was the Midol,” she recalls. “I walked into the other room to get something out of my purse, bent over and got the biggest head rush of my life. I still had my mind where I could think and speak, and I knew I was going down.” Miller collapsed. Everything was blurry, and she was extremely dizzy and weak. Overcome with nausea, Miller crawled to bathroom and began violently vomiting. Her boyfriend called 911.
Miller’s symptoms were classic signs of a stroke—blurred vision, headache, dizziness, numbness and weakness. But one thing didn’t fit the profile of stroke: She’s a 27-year-old woman. Missing—or dismissing—the warning signs, the ER doctors diagnosed her with gastroenteritis, basically the stomach flu, and sent her home the next day with anti-nausea medication.
The most effective stroke treatments are available if the stroke is recognized and diagnosed within the first three hours of the first symptoms. An MRI—which creates a picture of your brain to detect tissue damage—is one of the key tests used to diagnose a stroke. Miller didn’t receive an MRI until five days after her initial emergency room visit, when a neurologist prescribed it after diagnosing her with a
migraine with a prolonged aura. After a few wasted days as the doctor’s office figured out her insurance coverage, Miller finally booked her appointment. “I go in and I don’t think they’re going to see anything,” she recalls. “The technician says, ‘I see something,’ so I’m already very scared. I’m told: ‘You had a stroke. You have to go to the emergency room immediately.’ I was hysterical and in complete shock. I was freaking out.”
The technician took her to the hospital, which Miller said was like an episode out of “ER,” with eight doctors rushing around her. “I’m clutching at everyone, saying, “Please don’t let me die,” she remembers.
All of Miller’s symptoms should have set off alarm bells in the multiple doctors who saw her after the initial stroke. But they didn’t. Part of that is likely because of Miller’s young age. It could also be because she’s a woman: “There’s a stigma against women that you’re overreacting or you’re having anxiety,” says Miller, who wanted to tell her story to spread awareness. She says that women are not always taken as seriously as men when it comes to strokes, as well as heart attacks. The research backs her up.
A team at Johns Hopkins University School of Medicine analyzed federal health care data and found that doctors overlook or disregard the early signs of potentially disabling strokes in tens of thousands of Americans each year—with many of these patients coming to the ER complaining of dizziness or headaches. The April 2014 study revealed that women, minorities and people under the age of 45 who have these symptoms of stroke were significantly more likely to be misdiagnosed in the week prior to having a debilitating stroke.
Women in the study were 33 percent more likely to be misdiagnosed than men, while younger people were nearly seven times more likely to be given an incorrect diagnosis and sent home without treatment despite exhibiting these stroke symptoms.
“Most of these misdiagnosed patients, especially the younger ones, are probably people for whom stroke wasn’t really given much consideration or diagnostic assessment,” says study author David E. Newman-Tokker, an associate professor of neurology at the Johns Hopkins University School of Medicine. “And this can have dire consequences.”
A CAT scan revealed that Miller had a vertebral arterial dissection in her neck—a tear within the artery that came within a three-day time span of the stroke. Arterial dissections are relatively rare, but they’re increasingly identified as a cause of stroke in patients younger than 45 years. “Any simple neck movement could have caused the tear, such as when you get your hair done and you are lying back in the sink,” she says.
“You should have an extra towel to support your neck; otherwise you’re hyper-extending it. Or it could be from flipping over your hair while drying it, doing crunches at the gym, or any sort of neck manipulation such as with chiropractic work.”
To this day, Miller doesn’t know what caused the tear or the strokes. She certainly didn’t have any of the red flags: She doesn’t have high blood pressure or a family history of the condition. She isn’t diabetic. She doesn’t take oral contraceptives. She’s not overweight. She’s physically active and fit.
After going through this nightmare, she learned the hard way how important it is to keep pushing if you know that something is wrong, despite even having multiple doctors tell you otherwise. Miller’s advice to other women dealing with a health scare: “You need to be your own advocate and to continue fighting to get the care that you need. There aren’t any PSAs or ads on strokes in young people, especially in women. And the doctors aren’t looking for it. I’m trying to turn this away from myself and support this cause because otherwise it just becomes a random event that disappears and I don’t want that to happen.”
In the meantime, Miller is healing from the stroke both physically and emotionally and hopes to regain her independence. “You realize your own resilience and inner strength,” she says. “It puts everything in perspective. Things can change on a dime.”