A Stroke from Hormonal Birth Control: Part 1

I opened my eyes and saw my husband, Josh, holding my hand, looking very serious. He was telling me that we would get through this, that even if I had to learn to walk again, that whatever it took, we would be okay. I remember thinking, “It’s okay, honey. I just have a headache.” We had been married for a year. The next time I opened my eyes Josh was leaning over me. I was on my side in the emergency room and the doctor had just asked him to hold me steady while he gave me a spinal tap to check for meningitis. Josh held me so firmly, terrified by the risks of a misplaced needle, that his arms were shaking from the strain. I tried to tell him, “Don’t worry about holding me. I can’t move anyway.” I had lost the use of my limbs hours before, maybe even days. And now it seemed my power of speech was gone, as well.

The headache had started a month earlier. I remember exactly when because it woke me in the middle of night and I had never had that happen before. We were visiting friends in New York right before Christmas. I got up and took some ibuprofen and didn’t give it much more thought. But it never really went away. I saw a chiropractor. I took more ibuprofen. I checked out a book on meditation. By the time I saw a gynecologist, I also had an unexplainable pain in my left thigh. The gynecologist told me the pain in my leg was probably just a muscle strain and she prescribed Imitrex for the headache, a migraine medication that shrinks the blood vessels in the brain.

The migraine medication made the headache go from dull and persistent to unbearable. I visited a health clinic where the doctor suggested an appointment with a neurologist the following week. That night my left arm started to go numb. I called a local pharmacist who said it might be my birth control pills. That’s crazy, I thought. I’ve been on them for 10 years. I slept on the couch because I couldn’t bear the thought of having to move to the bedroom. The music that had been on the television roared in my head like it had been trapped there on repeat. The next day I called the health center again and they told me to go to the emergency room.

Over the course of the next two days I would take 3 ambulance rides, be sent home from the emergency room twice, begin to lose all control of my body, and be given a very stern lecture by a nurse who thought I needed to learn how to “manage my stress.”

The spinal tap in the emergency room was not the first time Josh had to hold me down. Earlier that day, he tried to restrain me while my body thrashed wildly. During the seizure, I told myself that if I just calmed down, it would stop. It must all be in my head since the doctors said it was just a “tension headache.” We locked eyes, both of us terrified of what was happening to me. When the shaking finally subsided, he asked me if he should call 911. Again. All I could do was nod.

I did not have meningitis. There were blood clots in my brain and because they had not been treated right away, one of the veins in my head had burst and was bleeding. I was having a massive stroke.

Later, Josh would tell me about overhearing the neurologist and the neurosurgeon arguing. The neurologist thought they should operate. The neurosurgeon thought it was too risky. Neither wanted to be there. It was Martin Luther King, Jr. day. (I have since learned never to get sick on a holiday weekend.) In the end, they didn’t operate. I don’t remember exactly when they told me that I had had a stroke. But I know I had no understanding of what that meant. (I find that even now, ten years later, I am still learning.) As far as I knew, that was something that happened to old people. I was 28 years old.

At some point, they told me that I had a clotting disorder and that this genetic anomaly coupled with the hormones in my birth control had caused my stroke. This wouldn’t mean much to me until after I learned how to walk again, do math again, shave my own armpits again.

Not long after I was discharged from the hospital, I had an allergic reaction to the anti-seizure medication. I returned to the emergency room at the request of my neurologist. This time they immediately took me to an examination room. When the doctor walked in, the same doctor who had finally diagnosed my stroke, he said, “I’m so glad to see you. I didn’t think you were going to make it.”

That statement stayed with me throughout my recovery. Because though intellectually I understood that the stroke could have killed me, I never really understood the gravity of the situation until he said that to me. And it made me begin to really consider what happened to me and why.

I was first prescribed birth control pills at the university health clinic my freshman year of college. I wasn’t even sexually active at the time, it just seemed like a rite of passage. Why did no one tell me about the dangers of the pill? I wondered. And why didn’t anyone tell me that I could have a clotting disorder without knowing it? How many other women have this clotting disorder? How many other women have had blood clots? How many have actually died from hormonal birth control? Throughout my recovery, I struggled with these questions. Eventually, I even tried to answer some of these questions with my master’s thesis. For more on my recovery and thesis work, see Part 2 of A Stroke from Hormonal Birth Control.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.