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My first migraine hit hard and fast, without warning, when I was 14. I don’t remember a lot about the ones that came right after, but I know the attacks had become frequent enough that my parents first took me to our family doctor, who then sent me to a neurologist.
He was, one of the few horrible doctors I’ve had, no, maybe for the late 1970s, when so little was known about migraine, he wasn’t a bad doctor—but he indeed wasn’t an insightful or kind human. I remember him implying it was “all in my head.” He asked me if, at one point, I wanted my Mom (with whom I have always been extremely close) to leave the room so I could share things with him that I did not want to say in front of her.
He put me on medications that made me violently nauseous and ill, functioning like a zombie by the time I entered freshman year of high school. When I said I couldn’t stay on them and my parents agreed, he sighed, offered me a hot pack to put on my neck and a huge, soft neck collar to wear all of the time.
It was soon after that I learned how much migraine changes—from childhood to teenage years, adulthood, and midlife:
Migraine symptoms and triggers in children are different than symptoms and triggers in adults, and those factors evolve for individuals as they age. Every person with migraine experiences different symptoms and triggers, and those factors can change for individuals as they age (American Headache Society).
I was very involved in sports in the first couple of years of high school. I participated in varsity basketball, volleyball, and track. However, migraines and the medications I was taking drove me first to the bench and then to quit sports altogether, no longer being able to participate in physical education classes. Still, the migraines came.
By my junior year, at a particularly stressful time of a busy term, my parents came home from work to find me in a fetal position in the bathroom, violently sick, and barely able to hold my head up from the headache pain.
We decided to try a chiropractor, who eventually suggested a TENS machine, only to find out my parents had to pay $800 out-of-pocket for this new technology (that’s almost $2800 today). I remember that vividly because I knew all the tests, doctors, and treatments became very difficult financially for my parents. I had one of the first CAT scans available to the public in my area in about 1980. This chiropractor was kind and would see me evenings or on the weekend, as he worked from home and genuinely wanted to help.
The migraines and treatment in my college years are a little vaguer. I don’t recall if they became more episodic or I couldn’t separate them from the draining endometriosis I had learned was the cause of severe pain, nausea, and bleeding during these years. Again, little was known and talked about with this excruciatingly painful condition. It wasn’t until several years later when I suffered a ruptured ovarian cyst that required immediate surgery, that the severity of this condition was uncovered.
During these years, I recall times when my friends in the dorm failed to understand why I rarely went out, I stayed in with a few close friends, even when I wanted to be out. I was coping with migraine and endometriosis; both could be debilitating. Without knowing it, I was learning that chronic illness can alter one’s life dramatically-physically, emotionally, and socially.
When I was a senior in college, my now-husband, who had yet to meet my parents, drove an hour to my hometown, so my parents could get me to a doctor who could give me a shot to “knock me out,” take me out of the migraine pain for a period. When we first dated, he learned early on what it was like being with someone who suffered only episodic migraine and severe endometriosis.
By my thirties, I had a complete hysterectomy to rid my body of endometriosis. As soon as I came to the surgery, it was there, in full force, and nothing touched it, despite the fact the doctors at the hospital (not my physicians) told me they could make me the “best migraine cocktail” there was. Still, after the surgery, I suffered one of the four or five most horrific and long-lasting migraines I’d ever had. I was in agony and can easily relive that time and feel helpless, wanting to die; yes, the pain was that bad.
Unfortunately, it was at this point that episodic migraines became chronic. Fortunately, my internist sent me to a headache specialist. I was under his care as soon as I left the hospital. However, with his persistence, reassurance, and encouragement, I learned to manage migraine as a companion in my life, no longer believing it was something I would outgrow, and accepting that menopause was not going to reduce the number or severity, either.
By my mid 40’s, I thought I knew my triggers, often carcinogenic or stress, though I knew the pattern of the attacks and thought I had a treatment regimen under control. However, the migraine had its ideas and, perhaps thought I was getting a bit too comfortable—the pain has always started in the intense muscle along the occipital nerve on the right side of my neck, then followed up my head to the back of my right eye. By this point, the full-blown attack was underway. Then, something shifted.
During those times I was getting pain in the two trigger points at the base of my skull. I was developing sensitivity to sound. Was this migraine? As the migraine morphed in various ways, its primary triggers and patterns remained largely the same. The cycles became increasingly intractable, though I often found I could not abort one that signaled it was on its way.
Nerve blocks and Botox helped some, and I started with a new device at the time—Cefaly, which I used religiously every day for an hour. This small device, targeting the trigeminal nerve, saved me from multiple full-blown attacks. It was the best abortive treatment I had found (I still use it daily).
By my late 40’s, my headache specialist told me about exciting new medications and treatments on their way–CGRP’s; these would become the first medications created purely to treat migraine. He assured me more help was on the way in the next few years.
In my early 50’s, just before my headache specialist retired, I developed the very unusual habit of excessive yawning. When I mentioned it to him, he smiled and asked if I had noticed any pattern whereby a migraine attack followed either in the following hours or the next day. I hadn’t thought of it, but, sure enough, as I started paying attention, that’s exactly what happened. It was a new warning, an additional start of my prodrome phase of migraine.
I now find myself, almost age 58, knowing migraines will undoubtedly always be a significant part of my life. The CGRP’s have, indeed, proved to be very effective, and new rescue versions of these treatments, as well as other non-pharmaceutical devices, are proving valuable as well. I still, like so many, struggle to find anything that will relieve the pain since, despite the severity, little now in the way of medication can be prescribed for pain.
However, migraine remains. Anxiety seems to have grown over the years, as I’ve become less patient with the disease and the return of attacks. Now I get drooping eyes, particularly the right, the beginnings of photosensitivity. I don’t want so many hours or days or weeks to be taken from me. The fear of the next migraine adds to the anxiety mix, as well.
As new changes in your migraine disease appear, know that you are likely not alone. Share them with your physicians, however, as well as those who support you. Sometimes, they can notice oncoming signs before you do.
Still, migraine sufferers persevere, knowing there’s more help on the way, more research being done than ever before, as well as significant growth in support and advocacy for us. We savor the times when we feel our normal selves and relish the world around us just a little bit more than the person without chronic pain, I think.
"Time changes everything except something within us, which is always surprised by change." –Thomas Hardy
References
American Headache Society.org.
