This Woman Had a Mini-Stroke at Age 41 and Was Misdiagnosed Twice

Courtesy Stacy Quinn

Stacy Quinn is part of the American Heart Association’s Go Red for Women Real Women class of volunteers bringing awareness to cardiovascular disease through sharing their stories.

Stacy Quinn was 41 years old when she suffered a transient ischemic attack (TIA), or mini-stroke, and it was misdiagnosed—twice. The communications professional from northern New Jersey was on a train commuting to New York City one morning in December 2014, when she had what she describes as “the worst headache of my life.”

Quinn describes herself as the type of person who used to just charge through life. She brushed off the pain, took medicine, got off the train and ran to a coffee shop to get some caffeine before heading into the office.

While in a meeting with her boss, she says they both noticed she was slurring her speech during a conference call.

‘The worst headache of my life’

“It was really a very scary moment. It was the first time since I was a little girl that I couldn’t string together what I wanted to say,” Quinn recalls. “[Words] just weren’t coming out, and this happened twice. Then my speech quickly returned to normal.” Her boss asked whether she was OK; Quinn insisted she was. “I just powered through the day, thinking it was a blip.”

However, the headache continued. Quinn remembers going into the ladies room, looking at herself and thinking, ‘I just don’t look good.’ She noticed a red “lightning bolt” in her left eye—a red zig-zag line in the corner of her eye that had not been there before—and both eyes were bloodshot. Still, she thought she’d be fine and told herself “every excuse in the book,” including that she was just tired and stressed.

Quinn emailed her mother and explained her strange experience. Her mom called right away, telling her to get to the hospital and warning her, “You’re having a stroke.” Quinn was sure her mother was overreacting, but said she’d go to urgent care that night just to get checked.

“Unfortunately, the doctor misdiagnosed me,” says Quinn. Because there was no simple risk factor to point to—Quinn says she was in the best shape of her life—the doctor missed it, despite her list of various symptoms. According to Quinn, he said “I think you just have a migraine and you’re tired.” Then he gave her some medication and sent her home. Quinn says her headache continued for about 10 days. By New Year’s Eve, she still wasn’t feeling well. She went back to urgent care and was treated by a different doctor. Quinn says her ear had also begun to bother her. This time she received ear drops. Again, the doctor thought she was just stressed and having a bad headache. (Read how this woman was misdiagnosed with anxiety when she really had POTS.)

As with heart attacks, the symptoms of TIA and stroke may differ in women and men, says Alison McKenzie, PhD, a professor in the department of physical therapy and the director of Anatomy Laboratory operations at Chapman University in Orange, California. “As is the case with many issues in healthcare, women are often not taken as seriously as they should be, sometimes being dismissed as being ‘anxious’ or some such,” says McKenzie, who’s also a project scientist in the department of neurology at the University of California at Irvine.

Plus, she says, some clinicians still think of stroke as something affecting mainly older adults because more strokes occur in older people. “But even children can have strokes,” she says. McKenzie says she has treated younger women, ages 19 to early 40s, in the Stroke Boot Camp run by her team at Chapman University.

Being both young and a woman, Quinn concurs. “I don’t look the part,” she says, so much so that even she herself had a hard time believing something was actually wrong. That’s why I went back to work, still nauseated and in pain. Luckily, she finally decided to see a neurologist near her office. Quinn credits him with saving her life. “I will never forget this, he said, ‘I leave no stone unturned,'” she recalls. He sent her to get magnetic resonance imaging (MRI), which ultimately confirmed she’d had a TIA.

TIA and stroke risk in women and young adults

A transient ischemic attack may often be referred to as a “mini-stroke” but it’s actually a major sign that something is wrong, according to Stroke.org . Because it doesn’t necessarily cause permanent damage, people often ignore it. However, ignoring signs of a mini-stroke is always a mistake. Though temporary, a TIA is a blockage of blood flow to the brain, and it may be a signal or warning of a major stroke in the future.

Stroke.org reports a number of important facts about transient ischemic attack, including:

• About 240,000 Americans have a TIA every year.

• A TIA happens before about 15 percent of all strokes.

• About one-third of people who have a TIA go on to have a more severe stroke within one year.

• Up to 25 percent of people who experience a TIA die within one year.

Additionally, a 2020 report by the American Heart Association offers these stats:

• Approximately 10 percent of all strokes occur in individuals 18 to 50 years of age

• An estimated 7 million Americans over 20 years of age self-reported having had a stroke (2013 – 2016).

• Each year, approximately 795,000 people experience a new or recurrent stroke; an estimated 610,000 are first attacks.

• On average, every 40 seconds, someone in the United States has a stroke (AHA computation based on the latest available data).

• Analyses of multiple studies of TIA patients have shown the short-term risk of stroke after TIA to be approximately 3 percent to 10 percent at 2 days and 9 percent  to 17 percent at 90 days.

• People who have a TIA and survive the initial high-risk period have a 10-year stroke risk of approximately 19 percent and a combined 10-year stroke, heart attack or other vascular death risk of 43 percent.

Women’s overall risk is greater than men’s, says Ileana L. Piña, MD, professor of medicine at Wayne State University and clinical professor of medicine at Central Michigan University. Roughly 60 percent of stroke deaths are in women, who also have a higher lifetime risk of stroke than men, Dr. Piña says, citing a 2019 report from the American Heart Association on Heart Disease and Stroke Statistics. And about 3.8 million stroke survivors alive today are women, notes Dr. Piña, who’s also a national spokesperson for the American Heart Association’s Go Red for Women.

The heart association’s annual report of 2020 points out that inherited genetic factors seem to play a larger role in strokes in younger people, and that there appear to be a relatively high number of stroke-related symptoms in a general population that previously had not had a diagnosed stroke or TIA. This suggests that stroke may be underdiagnosed (or that other conditions mimic stroke, possibly both), the report noted.

One in five women will have a stroke in their lifetime

Quinn has no family history of stroke or heart disease, and she was in great physical shape when she had her TIA. “My general health was good. I exercise regularly. I eat a healthy diet. My blood pressure and cholesterol numbers were great. So, I honestly had no reason to think I would be at risk of anything other than maybe the common cold,” says Quinn. Even after the neurologist prescribed the MRI, she put off having it done for a day because she’d scheduled a training session at the gym that evening. “When I thought about a stroke, it was always an older man,” says Quinn. “One in five women will have a stroke in their lifetime. That’s a big number, but I’d never heard about a woman having a stroke until I started volunteering with the American Heart Association.” [This woman had a stroke at a young age too.]

Even though Quinn’s neurologist was skeptical anything serious was going on, he decided to send her for testing. “Thankfully he prescribed those tests that ended up saving my life,” she says. Within hours of her MRI, Quinn’s doctor called. At that moment, she was also having tests run by an eye doctor because of vision problems (which she later learned were connected to the TIA). “I saw the doctor’s name on my cell phone and thought, ‘Oh gosh, this can’t be good. I’m supposed to go tomorrow for the results,'” Quinn recalls. Her doctor said she needed to get to New York Presbyterian Hospital as soon as possible, that a team would be waiting for her. She asked about a local hospital, but he explained that her case was unique and she needed the help of specialists. “I remember saying to the [eye doctor’s] receptionist, ‘I’ve got to go. I’m going to have a stroke.’ It was a surreal moment.”

Knowing she shouldn’t drive, Quinn called a car service to get to New York City. She packed a bag along with her computer, because she wasn’t sure how long she’d be there. “I was just getting myself organized; so strange. I was scared in that car going to the hospital, because I’m already 10 days into this,” she recalls. “I was like, ‘What if I have this catastrophic [stroke] now? My doctor always says, ‘You had an angel on your shoulder.’ I was nervous until I got [to the hospital]. They shuffled me right back and started doing a ton of tests to dig deeper into why everything was going on.”

Stroke treatment and rehabilitation

The doctors were able to understand a lot of what happened in Quinn’s case through the MRI. They also did a computed tomography (CT or CAT scan) with dye. Ultimately, the medical team confirmed she’d had a TIA caused by a dissection, or a tear in the lining of her carotid artery. “Your carotid artery is one of the main highways that delivers blood from your heart to your brain blood, and it has three layers,” Quinn explains. “One of my layers broke away and caused this flap that was blocking the blood flow from my heart to my brain by 90 percent. And where it dissected caused this small, pseudoaneurysm,” or pouch where blood collected. Her team had to decide whether to operate or to treat her with medicine. As it turns out, she says, the doctors found that it would have been more dangerous to go in and repair the artery. Instead, Quinn left the hospital with “a cocktail of medications.” She says she’s grateful she was treated at New York Presbyterian. “Their process was so thoughtful.”

As Quinn, explains, there are two types of carotid artery dissections: spontaneous and traumatic. A traumatic dissection might be caused by an event, like a car accident. In Quinn’s case, it was spontaneous. “We’ll really never know why this happened to me,” she says. “I look back at the time and think, ‘What was I doing?’ But it’s just one of those things; we’re not sure. Which is why moving forward in my life, I do have to be really careful because I could be prone to this happening again. My artery never fully healed, so I have some restrictions.”

Considering what Quinn went through, she says, her restrictions are pretty mild. She can’t do yoga. She’s not supposed to lift 10 lbs. over her head. She cannot participate in contact sports. She’s not allowed to have a neck massage, nor see a chiropractor; she can’t do anything that puts pressure on her neck. “I still have some balance issues from time to time,” says Quinn. “And sometimes connecting my right to my left takes me a little longer than someone else. But aside from that, I’m very, very lucky I’m still here. Of all the things that could have happened, all of the side effects, these are minor.”

Quinn was in the hospital for two days before she was sent home with medication. She was told to be very careful in the first 90 days, because of the increased risk of another stroke or other injury to the artery.

Courtesy Stacy Quinn

The physical and emotional toll of stroke

Quinn says the first three months after her mini-stroke were tough. “I thought, ‘What if I go to sleep and I have a stroke in my sleep? That happens to some people. It was traumatic, going to bed and I thinking, ‘Will I wake up?'” My mind started playing games with me, so I tried to have positive thoughts before going to bed.” Quinn began keeping a gratitude journal, writing down three things that went well or things she was grateful for, at the end of each day. “But every now and then I’ll have one of those nights where I’m having trouble falling asleep, thinking if [the TIA] happened in my sleep I’d never know. Time has helped to heal that, helped change my mind frame a little bit.”

Quinn also faced some existential challenges. “I think because things happened so suddenly, and my doctors told me I was lucky to be alive, I [had thoughts] like, ‘Why am I still here? What saved me? Is there a bigger reason?’ I went through all of that in my head.” When Quinn finally started getting back into her regular, pre-TIA routine, she says she had a hard time. “Nothing about me looked different. I [looked] fine. I looked like myself before all this happened, but I was really struggling emotionally,” she recalls.

Plus, she continued to have headaches. “I used to lay under my desk at work for 10 minutes in the afternoon, because my head still hurt so bad. I probably went back to work sooner than I should have, but I wanted my sense of normalcy. Also, since I worked in the city, it was closer to my doctors in case something happened.” After the first 90 days, Quinn had another round of tests to be sure she was healing and things were progressing. The headaches she had are called post-CAD (carotid artery dissection) headaches. “Even to this day, if I push myself too hard or overdo it, I get very stressed and a really bad headache,” says Quinn. “That’s what I look at as my warning sign, to slow down, take it easy and not stress. That was one of the biggest things at first. [My doctors said] you really can’t get stressed, you need to stay really calm. I’m a very hyperactive person, so I had to dial it back, which I was not used to doing.”

According to the AHA’s 2020 report, a study of cardiovascular disease awareness among women in the United States who were younger than 75 showed that 23 percent identified severe headache, as well as unexplained dizziness (20 percent) and vision loss/changes (18 percent) as stroke warning symptoms. Quinn says that whenever she’d get a headache, she would have anxiety wondering if it was “one of those headaches.” Luckily, she says, she has a wonderful doctor whom she could always call if she got nervous. He would call her right back and talk her through it. “I remember I had a little meltdown just walking down the street, thinking ‘I can’t deal with this anymore.’ And he called me and just walked me through it, saying ‘You just need to go home, have a glass of wine and chill out.’ I had a really good team that I am so grateful for.”

Covid-19 and precautions

Quinn still gets choked up talking about her mini-stroke, and now with Covid-19 as a new risk, she is extra concerned. “When I read articles about people not going to the hospital when they have [major] stroke symptoms, it really upsets me,” she says. “Eighty percent of strokes are treatable and beatable. The sooner you get to the hospital, the better. Hospitals are equipped to handle these medical emergencies and stroke patients safely, but people aren’t going.”

Citing a 2020 study published in JAMA Cardiology, Dr. Piña reports that stroke survivors, people with high blood pressure or diabetes, and those with heart disease (including congenital heart defects) of any age may face increased risk for serious complications if they get Covid-19. Additionally, Dr. Piña says that more women “serve as caregivers for older parents, young children, and those who may be infected with [the virus that causes] Covid-19, which makes prevention and education on stroke and/or heart attack warning signs for these women imperative.”

Dr. Priyank Khandelwal, an endovascular and vascular neurologist and assistant professor at the Rutgers New Jersey Medical School, adds that physicians treating Covid-19 patients have noted an increase in strokes among young and healthy adults who later are diagnosed or recovering from the disease. “Patients should be assured that most hospitals have a robust protocol to take care of them efficiently and safely, even amid the Covid-19 pandemic,” Dr. Khandelwal says. “Rapid testing is available at certain hospitals where every patient presenting signs of stroke is tested for Covid-19. Results are usually available within two hours, and patients [are] kept in Covid-19 or non-Covid-19 designated stations.”

It’s important that people who think they might be having a stroke get to the hospital quickly, Dr. Khandelwal notes. “A delay of even a few hours can result in permanent disability.” Symptoms of a TIA are the same as a full-blown stroke, according to Stroke.org, and both should get prompt medical attention. People should seek immediate help if they or a loved one experience sudden onset of the following warning signs:

• Slurred speech or difficulty understanding others

• Blindness in one or both eyes

• Dizziness

• Severe headache with no apparent cause

Courtesy Stacy Quinn

Recognize stroke symptoms using F.A.S.T. and find support

Quinn stresses the importance of knowing the signs of a stroke via the acronym F.A.S.T.: “F” for face drooping, “A” for arm weakness, “S” for slurred speech, and “T” as in time to call 911. She also says the pandemic has made her more cautious of her health in a variety of ways. “I’m very careful, but I’m also going to live my life,” she says. “During this time, for me, it’s important that I stay in shape. With all the gyms closed, I started cobbling together gym equipment and now I have a mobile gym in my car. After work, I go to the park, lift weights and run. I’m not just going to sit in the house all day. Taking care of my physical health and my mental health is really important for my long-term health.” Quinn says she’s conscious of moving around more, wearing a mask, staying socially distanced from people, and eating healthier by making her own food (versus going to restaurants). “I think it’s easy to fall into bad habits in a situation like this.”

She considers her TIA a near-death experience, and that’s part of the reason Quinn tells her story—so other people who have stroke symptoms will know to go to the hospital. “A stroke is a medical emergency. Every minute a stroke is untreated you lose 2 million brain cells. It’s all about time,” she says. Now a volunteer with the American Heart Association’s Go Red for Women Campaign, Quinn helps raise money for research and shares her experience with others through the organization.

“Find people that have been through something similar to you,” she advises. “I met these other women, we call them our Heart Sisters, that I volunteer with. They understood exactly what I was going through, my feelings were normal, and we could talk about it. I had a family member tell me I looked fine, and I needed to get over it. Sure, I looked fine, but don’t judge a book by its cover. I got out of the hospital, but I had been through a pretty traumatic experience. That was hard for me. Everyone heals at their own pace and even for me, it took some time.”

Quinn wants to remind people that “stroke doesn’t discriminate. Children, babies, people within all age ranges have strokes. And stroke is increasing in young people. The American Stroke Association says that two out of three times a bystander makes the decision to call 911 on behalf of someone having a stroke.”

“It’s really important for all people to know stroke symptoms. Maybe one day it will help them in some way.”