IT HAPPENED TO ME: I’ve Had a Migraine for Five Years

It’s pretty amazing what people are capable of doing when they don’t have any other options.
Publish date:
February 5, 2014
healthy, migraines

My most recent migraine started about five years ago, after I weaned my nursing son, and it never went away.

I started getting migraines as a child. I don’t remember the pain of those childhood attacks, but I remember the dizziness and nausea and always the throwing up. I remember puking hot dogs in the backseat of my parents’ old Scout International on the way home from a picnic at Aunt Judy’s house. I remember getting a headache on a school field trip to Washington, DC, and throwing up in a garbage bag on the bus. I remember crying to my mother that “I’m falling, I’m falling” from my bed, then the couch, until she finally laid me on the big oval braided rug in the middle of the living room.

The attacks didn’t become regular until I was a teenager. I could predict my monthly cycle by the 2-day migraine that preceded it. My attendance at school became problematic. And now, with the availability of the popular migraine rescue medication Imitrex, I was suffering from increasing medication overuse headaches.

The World Health Organization estimates that migraines affect approximately 14% of the population and 18% of women. About 1.4% to 2.2% have chronic migraines, as defined by 15 or more headaches per month.

I prefer not to call them “headaches,” because they’re not necessarily: migraine is a full-body experience that’s often topped off with excruciating head pain. I’ve heard the pain described as “stabbing” or a “hot poker,” but that’s not accurate for me. I feel like my brain is too big to fit in my head and my eye is going to pop out. Those people in the Middle Ages who drilled holes in their heads? I get it.

However, I’ve had migraines (or, at least, prolonged auras) without headache. Before I had one endless migraine cycle, I used to suffer from migraine with aura, which I can only describe as a vague sensory and visual “warning” that a migraine is going to occur. I’d usually feel disoriented -- “out of sorts” -- and have a strange sense of urgency, nausea, sensitivity to light and sound, and black floaters or zig-zags of red and green light blocking my field of vision.

My most recent migraine started about five years ago, after I weaned my nursing son. This migraine was not caused by medication overuse, as I didn’t take any medications while I was pregnant or nursing. I didn’t need to: one pleasant side-effect to pregnancy was a temporary recess from migraines. As soon as I quit nursing, though, the headache returned. It never left.

Most people, particularly people who suffer from episodic migraines, don’t understand how I could possibly be living with a migraine for five years. If you have a migraine, you couldn’t be out of bed/online/writing this article.

It’s pretty amazing what people are capable of doing when they don’t have any other options. I’m a single parent: I certainly don’t have time off for illness. So I trudge on. I directed a music camp for kids with a severe migraine this summer (think: 7-year-old drummers). I’ve driven myself to the ER after being blindsided by pain in the middle of dinner with an ex who didn’t know how to drive a manual transmission. I’ve given myself shots in the stomach or leg at cubicles, dinner tables, and public restroom stalls.

But while I do have some degree of migraine every single day, they aren’t all an emergency. Mine range from mild -- what I’ve dubbed “half-a-migraine” -- to severely debilitating. The pain always radiates from behind my left eye and often results in uncontrollable vomiting that leads to hospitalization. In addition to the daily seizure medication and anti-nausea meds usually reserved for chemotherapy patients, I give myself about 18 Imitrex injections per month and an arsenal of steroid and pain medications. I have been getting over 30 Botox injections in my head every 3 months for the past year.

Without my arsenal of medications, I would spend significantly more time than I already do in bed with an ice pack across my forehead.

The worst of the situation is not the pain and illness, but the impact the pain and illness has on my life. I’ve been forced to apply for Social Security Disability instead of having the career I’ve always wanted. The migraines determine what kind of relationship I can have with my son. Trips to the park, the museum, school concerts, and vacations are all contingent on how well I’m feeling. On my best days I can take him to his soccer games; on my worst days I lie on my couch all day, relying on the help of friends, neighbors, and even my child.

The helplessness and vulnerability I experience when someone else is completely dependent on my care makes me feel like a 3-year-old again, spinning out of control on the floor my parents’ living room.

I finally started to take control of my treatment this winter. I decided that, despite what my doctors have told me, there had to be a reason why I was getting this increase in migraines. I visited an Integrative Medicine specialist, who found that I was deficient in folate and vitamin D. I also saw a rheumatologist, who began testing for autoimmune disorders.

I still have daily migraines, but I have hope. I tried a one-week trial of a medication normally given to control postpartum hemmorhage and it worked quite well. My doctor doesn’t like to prescribe it on a daily basis because it can damage the heart and lungs, but I am willing to take the risk with monitoring. I’ve consulted with a surgeon who does ablation to treat migraine pain.

For now, I’m determined to treat these symptoms and get back to living life.