Hey, you. Thanks for reading. My name is elizabeth and I have a family, which contains my partner, two adolescent daughters, and a dog. I also have a chronic illness. Since I started this blog six years ago, much has changed, and so I am now attempting to rewrite HISTORY, so to speak.
I was diagnosed with migraine disease (as we now call it) when I was nine years old, though I experienced my first bad headache as a toddler. I was given a neurological exam, an EEG and asked a series of questions, and then we went home. My mom tells the story that the doctor left a message on the answering machine that he needed to speak to them about “something serious,” so my parents assumed a tumor or something similarly deadly had been discovered. Instead, they were told their daughter definitely was suffering from migraine headaches, and he gave them a prescription for Fiorinal for me (a combination of aspirin, a barbiturate, and caffeine), and there began my confusing relationship with pain and relief, medicine and migraine, before the term “rebound headache” was ever uttered to a patient by a neurologist, much less a small town family doctor. It’s ironic to me however that this doctor did seem to understand how seriously it would affect my life, as though he had been using some sort of crystal ball.
During puberty, I developed ovarian cysts and endometriosis. I had to take birth control pills and stronger hormonal medicines to control the reckless growth of endometrial lining throughout my abdominal cavity, and my migraine disease steadily got worse. I was treated (with varying degrees of short term success) by one preventative or another, seeing a neurologist, a chiropractor, and a psychologist, all by the time I was beginning high school. Amazingly, I was able to go away for college, and I still treasure that time as one of the best of my life. My head pain continued to increase but I still managed to transfer into the Honors College for my sophomore year as an English / Creative Writing major. Sumatriptan became available in Canada and, somewhat close by, we traveled there to get it. The miraculous introduction of the medication class that would be known as “the triptans” was the first step of my transformation to chronic, due to the incredible ease of being able to swallow a pill which gave me such complete relief every time. Soon the auto-injections were released in the United States, and I learned to administer them; the tablets followed. I still remember my first Canadian sumatriptan dose – the day of Lollapalooza in Cleveland in 1992. I was to go with all my college friends and had driven there to stay with my friend Erin the day before and had woken up with a migraine that was threatening to keep me home – and not even my home. I took the tablet, waited a bit and as I got in the shower I felt it began to work, literally erasing my pain and other migraine symptoms like they’d never been there. I stood under the stream of water and wept.
After that I continued to cycle through various preventatives, but always had Imitrex tablets, injections, and other meds on hand to treat the crushing pain that was coming once or twice per week at that point. I visited the medical center at my university frequently, and often wrote about migraine in my fiction and poetry classes. My friends got used to asking me if I had meds with me when we’d go somewhere, or reminding me to take something after my second wine cooler of the night. Sometimes they could tell I was “brewing a migraine” before I knew myself. They were wonderful friends and took good care of me, but even so, I had to leave school my junior year to come home and finish college at the university in my home town. Feeling depressed and discouraged, I changed my major twice, and even failed a few classes when I missed too many days and didn’t bother to make up incompletes. I finally graduated with a Bachelor of Arts degree, cobbled together out of literature, early childhood education, and business classes after nearly 6 years. I worked clothing retail and alternated living in various inexpensive apartments downtown with room mates and at home with my parents and brother. I saw a new neurologist, and had regular ER and inpatient hospitalizations. With increasing desperation, my parents and I visited hypnotists and counselors, biofeedback practitioners and acupuncturists. Massage and physical therapists. I tried every available medication and received Botox while it was still in clinical trials, with varying degrees of temporary success. In 1997 I accepted a position as first a barista, then a manager at the very cool coffee shop / used bookstore right downstairs from my apartment, where I fully came into my own and subsequently met my cute and sweet, much younger, artistic outside-of-the-box future husband John and all my friends, and I felt my life officially begin, migraine or no. We were married in 2001, and John took over the duty of accompanying me to doctor appointments, driving me to the ER in the middle of the night, administering IM shots, and all the other endless partner-in-health duties. Still, we had a fantastic life together. After six fun, free-wheeling and pain-filled years while John attended college, we carefully, deliberately got pregnant, despite my health struggles.
My pregnancy, at age 31, was hell. I went from one serious migraine attack per week with a few milder, easier to treat ones in between to severe ones every day with constant nausea and vomiting. I was frequently hospitalized. My first baby girl, X, was fortunately born healthy and lovely. I had needed to begin maternity leave early, and upon my return, the coffee shop’s owners apparently decided they could no longer handle my frequent absenteeism. I was demoted back to part time and hung on there as long as I could because I absolutely adored the job, but was finally humiliated enough to quit, which was a huge blow to my self worth and identity. I considered it another sacrifice to my stigmatized, misunderstood and costly disease.
My husband graduated and became a children’s behavior specialist, then a kindergarten teacher, then got his Masters degree. He has since worked as a psychiatric treatment support specialist for families, a performance artist, and a lumberjack, while training himself to build websites. He started his own company, which is going strong. He finally just last year got a great job as a full-time instructor of Inclusive Early Childhood at our local state university. As for me, first I found another job at Waldenbooks, and as a former English major I was very happy there too, but it was closed by corporate headquarters within six months. I collected unemployment and fought long and hard to get a position with the City Parks & Recreation Department, almost not getting hired because I forgot to take out my tongue piercing for the interview. I became the department’s “artsy one,” working with highly combustible personalities in a rather stressful environment.
John and I had decided we couldn’t with good conscience have a second child, as badly as we wanted to. Because of how carefully I planned my first pregnancy, I wouldn’t have thought it was possible to conceive during the time of the month that I did, but when I accidentally (but very happily) became pregnant again at 35, my body and brain crossed the final threshold to chronic daily migraine. After the traumatic premature birth of my feisty, stubborn second daughter, Zo, I became debilitated by early menopause and near constant head pain and other symptoms. Eventually, I had a total hysterectomy, after which my migraine severity decreased but unfortunately the frequency did not. Always a writer at heart, it was around this time that I began blogging about my experience as LadyMigraine.
With the help of one of the best doctors I’ve ever had (she had to retire early due to her own illness) I tried Botox again to no avail, then made a sort of pilgrimage to a well-reputed teaching college a couple of hours away only to be told by the neurologist there to take baths with epsom salts. Finally, in January 2013, I was forced to leave my job, partially due to the stressful interpersonal issues which only got worse when I missed more and more shifts. I was not intending to stay home permanently, but I still had a migraine of some sort nearly every day, with my life becoming more and more affected by the mind-numbing, skull-crushing, all-encompassing pain as the worry of much decreased income and possibly trying to move had its way with me. I had never had much of a serious career, but I hated not having a job, and my victory in obtaining disability benefits on my first try did little to relieve our financial struggle. For a couple of years we were on every kind of government assistance as everything in our lives seemed to fall apart. I was never well enough to help John plan for the move, so we stayed put, which was for the best.
On the positive side, since I was always home I got to spend more time with my rapidly growing girls. I also blogged more and immersed myself further into the online migraine community, learning more about my own illness and how to advocate better for myself. In 2014 John and I began creating Migraine 365, a daily comic-style visual record of our lives, and soon afterward I was contacted by a childhood friend who works at a “small but mighty” head pain clinic an hour or so north. She told me about the CGRP medication clinical trials she was coordinating, and invited me to enroll in one that had an open label segment (guarantee to get the medication). Since I had been doing more research, I was very aware of the up-and-coming medications, touted to be the first preventative being developed for migraine (all others are being used off-label) and had so far had a very high success rate and low incidence of side effects. I was thrilled by her offer, and when the study began I started to get a bit of my life back. I volunteered at my local history museum, joined the youth theatre board, and created a relatively successful Etsy shop. In 2016, I was interviewed by a fellow blogger about my clinical trial for Migraine.com, which led to me becoming a patient advocate there, a dream come true. I now also contribute to the local online news journal John helped create and participate backstage in as many of my daughters’ performances as I can.
Both my clinical trials for the CGRP medications are over. The first one to be approved by the FDA will be erenumab by Amgen. I eagerly await its release as my migraine baseline has improved since I began this blog, but confusing new symptoms increase.
Hello again, reader, still with me?