Real Stories

Stroke Is Not An Old Woman's Disease!

By Courtney E. Martin

Alyssa ArcanaAs a 21-year-old Brown University student, it was understandable for senior Alyssa Arcana to feel a little on top of the world. It was spring semester, she was coasting towards graduation, and she had a boyfriend whom she really loved. She wasn't about to fool around with her future, so like 64% of other young women in their twenties (according to the Alan Guttmacher Institute) she had been on oral contraceptives throughout college. She didn't think much of the casual warnings on the packaging. "No one ever told me what the warning signs were; they just said that if I didn't smoke, I shouldn't worry," explained Arcana.

It was not, however, understandable, when she started to have right side weakness, trouble walking, writing and talking. Arcana said, "I started crossing a street and got stuck in the middle for about 10 seconds when my leg wouldn't move. I assumed they were side effects from a new medication." Within hours she had experienced a grand mal seizure on her dorm room floor, prompting her roommates to call 911 in hysterics. Arcana had suffered a stroke.

Stroke, the second leading cause of death among women worldwide, is a massively misunderstood affliction. Unlike the public perception, stroke is not only an old person's problem. Many young women - especially those on birth control and going through pregnancy - suffer stroke each year. More women die each year from stroke than do from AIDS and breast cancer combined.

Even more frightening is that most ERs are very slow to diagnose - Arcana was tested for drug use and bacteria before anyone ever thought to do a cat scan. "Stroke was the last thing the ER thought of. I was there for a couple of hours before they even saw me, and when they did, they did all these drug tests for cocaine, then thought maybe I hadn't eaten enough and passed out or had some kind of bacteria," reports Arcana. Finally, when they noticed that she was unable to lift her right arm, they did a CAT SCAN and discovered the stroke. She went on, "I think they were surprised. Then they started asking me questions about the pill and whether I smoked, but not until then."

This kind of slow diagnosis is not uncommon in the ER. A new study published in the New England Journal of Medicine indicates that many women exhibit atypical symptoms, and are therefore, more difficult to diagnose than men. Younger women, especially, are not thought to be a group high at risk for stroke. Dr. Steven J. Kittner, director of the Maryland Stroke Center and Goddess Fund Medical Advisory Board member, has done extensive work with young women and stroke.

Arcana, herself, had no idea what the symptoms for stroke were. In fact, she was worried that she had a brain tumor. The Goddess Fund focuses on educating health care professionals, but also prioritizes empowering women themselves with the information they need about stroke for just this reason.

After experiencing the stroke, Arcana was eager to understand what could have possibly caused it. In the end, birth control pills were the only conceivable source. Unfortunately, even highly respected stroke organizations often downplay the risk that oral contraceptives present. The National Stroke Association, one of the most respected organizations in the field, reports on their website only once about birth control risk: "It's especially advisable for women over 30 who smoke and also take high-estrogen birth-control pills to quit smoking. This combination of factors makes a woman 22 times more likely to have a stroke than the average person. However, most physicians no longer prescribe high-estrogen birth control pills to smokers."

Brigham and Women's Hospital, a teaching hospital of Harvard Medical School and sell-proclaimed "pioneer in women's health and virtually every area of medicine" reports in a Stroke Service publication: "Oral contraceptives continue to be a safe option for birth control but will increase your risk of stroke as you age - particularly if you smoke and are over the age of 35. If you smoke, or smoke and are on birth control pills, you can reduce your risk of stroke by quitting." Although neither the National Stroke Association or the Brigham and Women's Hospital brief is not incorrect, they do what many organizations have tended to do: downplay the risk of oral contraceptives alone.

The most comprehensive study on birth control pills and stroke risk was done by the Women's Health Organization (WHO) in 1998: "Cardiovascular Disease and Steroid Contraception." According to its researchers, having an ischemic stroke (a type of stroke caused by blood clots) is three times more likely in pill users than in nonusers. The WHO study also found that in both developing and European countries, current oral contraceptive users age 35 or older had a significantly increased risk of hemorrhagic stroke (a type of stroke that occurs when a blood vessel breaks in the brain), with relative risks of 2.5 and 2.2, respectively, compared with nonusers of oral contraceptives. Arcana suffered an ischemic stroke.

The WHO study does go on to break down risk factors: Oral contraceptive users who smoked faced a higher risk - about two times greater than among nonsmoking pill users in the developing countries studied and about 3.5 times greater in Europe. Current pill users with hypertension face the greatest risk - about four to five times that of nonusers. Arcana never smoked and has never suffered from hypertension. She feels that Planned Parenthood - where she got her pills - and other women's health care providers downplay the risk for non-smokers too much: "They said if I didn't smoke I had nothing to worry about."

Another misconception is that if a woman is going to suffer a stroke as a result of oral contraceptives, it will happen in the first few weeks of her medication. Wrong. Arcana had been on and off birth control for four years when she suffered her stroke.

Past diagnosis, the largest hurdle - both physically and mentally - is the slow and arduous process of rehabilitation. Arcana immediately started physical therapy; she was given exercises to do to get her coordination back. She initially had a lot of trouble with anything that required fine muscle coordination, like typing, writing or putting her contacts in. Her life had changed so dramatically in just days; she had gone from working on her thesis, doing a backpacking program with inner city teenagers, and looking for jobs to doing motor skills exercises like writing her name over and over again.

She remembers, "The first day that I started we went late in the day because I didn't want to run into anyone I knew. I had gained some weight from being bed-ridden. I still couldn't put my contacts in, and because of the increased pressure in my brain, I had started to see double. I was walking like an elderly person around the track, holding onto my mother. I was wearing my glasses, with a pirate patch over one eye because of my double vision, and I was exhausted. I remember thinking, 'It can't get much worse than this.'"

In addition to physical therapy, Arcana took anti-seizure medications that had drastic and painful side effects for her. She explains, "I tried one drug after another until I found one that worked, but the side effects of the drugs that didn't work were pretty bad - horrible rashes and lesions in my mouth that really hurt, trouble with my short term memory, tingling and weakness in my limbs. The last symptom was alarming because that's also an indicator of a stroke."

Even now, almost one year after her stroke, Arcana continues to focus on warning signs: "I still give myself a neuro exam at least once a day, not because I should but just because I'm a little paranoid. It's a habit now," Arcana explains. A layman neuro exam consists of a series of exercises, including holding your arms straight out in front of you with your palms up and your eyes shut to see if your hands start to turn downwards. If they do, it's a bad sign. Other exercises include touching each finger to your thumb or sticking out your tongue with your eyes shut (again, if it bends to one side, that's not good.) Arcana says, "Usually I also get someone to let me squeeze their hands. My friends know that I'm just being neurotic; they don't notice it anymore."

Arcana describes her friends' and family's reaction: "They were all pretty shocked. All in all, it was a relatively minor stroke, and by the time they all found out, the dangerous part was over. At the time, I felt like they were making too big of a deal over it. But I also didn't realize how serious it was or how long the side effects would last."

Today Arcana is recovered, besides an occasional frustration with finding a word and lingering anxiety that it will happen again. As she describes it: "I guess I feel fully recovered since I have no real deficits - the proper medical term for lingering problems. It's kind of like having a scar - your skin basically functions as well as it did before, but you have a little reminder that something happened once."

Luckily, the chances of "something" happening again are slim. Arcana continues to take aspirin-therapy for stroke prevention, and reports the she probably will for the rest of her life, but she is optimistic about staying stroke-free and getting on with her life.

She is finishing up her college degree from a distance, while working full time at a new non-profit that focuses on improving public education in New York City: the Crossroads Diversity Program. Her stroke has certainly affected the way she looks at her future. She explains, "It has made me want to figure out what I really want to do and to pursue it. Taking years to work up the corporate ladder to find a well paying job doesn't appeal to me. I know that things can be taken away really suddenly. I don't waste time doing something that isn't rewarding in some way."

One of her goals is to raise awareness about young women and stroke: "I do think that doctors who prescribe the pill should tell girls about warning signs of stroke. Most young people don't have any idea what to pay attention to. I think that's true of the general public as well, especially when it comes to stroke."