Headaches
This post is a bit of a departure from my usual ranting about the School of Social Work and the general shape of things. For a long time now, I have wanted to do a sort of photovoice project about something that affects me and many others: migraines. Since I began getting them as a child and researching them as a teenager, I have found a few articles in medical dictionaries about the migraine experience and the interesting fact that people who get them tend to share a lot of similar qualities, likes and dislikes, and lifestyle behaviors. While this may not be fascinating to anyone except me (and perhaps a handful of my friends/acquaintances who get migraines themselves), I would now like to flesh out some of the ideas for my project, if and when it ever happens, and debunk some common myths about headaches in general and migraines in specific.
At the age of nine I experienced the worst headache of my life. It may have even been the first that I would have remembered at that point. It was summertime, sticky and hot outside, and I was at Vacation Bible School. I’m not exactly sure how it came on me, but by noon when my mom came to pick me up I was in so much pain that I thought I was going to throw up. It felt like someone was reaching into one side of my skull and scooping out my brains and eyeballs. There was immense pressure behind my eye sockets and any movement at all–even the slight rhythm of my breathing–sent searing pain from that side of my head down into my neck and jaw. I recall that my temples were throbbing and as I pressed them they felt as though they were going to bulge right out of my head. I had never felt such intense pain, and I remember that my mom was particularly busy that day and we had to run a few errands before going home. I was hurting so bad that I just laid down in the car while she ran into Aldi’s and pumped gas and did whatever else it was that she had to do. Knowing my mother, these “quick errands” ended up taking most of the afternoon. If I had been able to communicate to her how badly I was feeling, she would have gone faster or perhaps taken me home, but I couldn’t tell her, “Mom, I’m experiencing a migraine. A migraine is a very serious headache that affects approximately one-fifth of the population and is especially prevalent in women. I would appreciate it if you would take me home, as it feels like I’m dying and at this point I think I could rather cut off my head than continue experiencing this pain.” When we finally did arrive home, I went straight to the couch–I couldn’t even make it down the hall to my bedroom or bother to take off my shoes, a big no-no in our house–and sort of lay there heaving out these dry, gasping sobs. The pain behind my eyes was so great that I couldn’t even work out any tears. Mom came and asked what was wrong and I told her that my head hurt. She put a cold cloth on my forehead and asked if anything had happened at Vacation Bible School, undoubtedly thinking I was crying because one of the kids was mean to me or I had gotten reprimanded, etc. I laid on the couch for the rest of the day, finally working up the energy to drag myself into the bedroom I shared with my little sister, and eventually fell asleep–hours later–by burying my head between two pillows to drown out all noise and light (a difficult thing to do in my house at the time, as, to put it lightly, we are not a people terribly prone to appreciating silence and peace). I can’t remember if I woke up during the night and got into my pajamas; when it was time to get out of bed the next morning I no longer had the headache but felt a disorienting feeling I couldn’t quite name.
Over the next year as I entered the fourth grade, I remember often feeling stressed, worried, and having tremendous difficulty sleeping. Our family was going through a lot of difficulties at the time, and I felt a constant tension and worry around the house and among our relatives (my parents’ extended families all live in the St. Louis area and are very involved in each other’s lives, so I saw my cousins, aunts, uncles, and grandparents a whole lot growing up). At school, I was having trouble keeping up in math. I don’t think I’m generally mathematically inclined, but I do think my difficulties in school were partly attributable to the larger idea that girls are not as good as boys in math, and these idea being taken very seriously in my family: from a young age, it was communicated to me in some way that my brother was the smart one who was good at math and science, and I (as well as my female cousins, several of whom also struggled with math–despite one in particular now being a master web builder and site designer, a very technical career) was better at writing stories and drawing pictures. (Never mind that mastery of grammar uses the same logical skills as math.) Regardless, I had to leave my class during math to join a special tutoring group along with the other school misfits including several adoptees for whom English was not their first language and one severely disturbed young boy–probably a victim of sex abuse–who once asked me to touch his penis and was caught smearing feces in the bathroom. This “special education” alienated me from my friends, who often mocked me about needing help in the way that kids mock each other. Particularly distressing to me at the time was the fact that they often suggested I was boyfriend/girlfriend with the aforementioned boy, since we had to leave class together every day and walk down the hall to the special room. I quit joining in their play at recess and my teacher informed my mom that my solitude was developmentally concerning. I got several more migraines that year; most would occur on the days when I had been awake all night, sometimes for several nights in a row. Each seemed worse than the first. I got to know the carpet in the secretary’s office very well, because that’s where you would go to lie down when you weren’t feeling good.
For the next two years I, along with my brother and sister, was homeschooled. That’s a whole other story, but in the meantime I remember that I did begin sleeping better at night. I remember that I got a horrible migraine on the day that my mother told me it was probably time for me to start wearing a bra, perhaps as a stress reaction to not wanting to be a woman. However, the headaches really began in earnest during high school. I would regularly miss soccer practice, put my head down in study hall where the hard cool desk provided some relief, or ask to go home due to headaches. Many days I couldn’t get out of things so I would have to grit my teeth and bear it until I could get home and into bed with the covers pulled up over my face. Smoking weed helped relieve tension so I began to do that when it was available or I could afford it from the money I earned cleaning houses; I started smoking cigarettes in earnest too. When I was 15, on a Saturday that I was supposed to help my mom clean a house out in West County, I told her I wasn’t feeling good. She looked at me suspiciously and said, “You know, you sure have a lot of headaches.” About time you noticed, I thought bitterly. I can’t remember if she still made me go with her or not.
Toward the end of high school, my dad’s health insurance got switched up somehow and we had to go to a new family practitioner. When I was filling out the paperwork, I checked the box that said, “Frequent headaches” and marked “2-3 times a week” as the standard frequency. My doctor asked me a bunch of questions about my headaches and asked me to describe them. When I was finished he told me I was likely experiencing migraines, that migraines were a rare form of headache that lasted up to several days in some people, that his wife got them every month before her period, and so forth. He gave me a stack of handouts on migraines and, due to the frequency with which I was getting them, sent me home with two prescriptions: a pill I was to take at the first sign of head pain called Maltrex, and an injectible drug called Imitrex that I would take when Maltrex didn’t work. He also prescribed me Zoloft.
I used Maltrex the first week. Although it dulled the pain, I still had a bad headache. To see what would happen, I injected a dose of Imitrex into my thigh. Almost immediately, I felt my throat go dry and constrict, as well as a weird metallic taste in my mouth. I went to lie down, trying not to panic because I couldn’t breathe, and woke up 45 minutes later with a residual pain behind my eyes and that familiar disorientation following a migraine…but no migraine! I didn’t tell my parents because I thought they would be aggravated with me for dipping into the Imitrex so quickly when the doctor warned it should be used sparingly (looking back, I do have some sympathy for that: those drugs are very expensive, and I’m pretty certain my dad’s insurance wasn’t too generous with their coverage).
I used up the Imitrex quickly and the prescription was not refilled. (I later learned that, with my low blood pressure, injectible migraine medication should never be administered due to its effects of lowering blood pressure still further. This may have been why I was suddenly dizzy and needed to lie down.) The doctor who had talked to me about migraines and put me on Zoloft ended up leaving his practice for some weird reason–I think there was an ethical scandal that resulted in him losing his license. However, the fact that my parents now believed that my headaches were legitimate was a huge relief. My godmother revealed that she, too, experiences migraines. My dad recalled a relative who used to get inexplicably ill, presumptively with migraines, on a near-weekly basis. My mom discovered that many of her friends got migraines, and she was forever telling me about some new theory (”it’s PMS!”, “it’s because you drink soda!”, “it’s because of your hormones!”) or a home remedy that so-and-so tried and it worked (”put a bag of frozen corn on the back of your neck and lay down for an hour”, “when you feel one coming on, drink a cup of coffee”, “don’t ever drink coffee or eat chocolate”, and so forth).
My migraines continued unabated into college. I found that if I caught one the moment I started feeling that phantom pain on the side of my head and took a Maltrex and several ibuprofen, I could sometimes stave one off. There were many times I would get migraines during the midst of doing something really fun, like going to a concert or spending a weekend out of town, and I would literally try to eat as much Aleve as I felt my liver could handle, chain smoke, and shotgun coffee in an effort to open those pesky blood vessels enough for some relief. I missed class due to headaches; I called in sick to work due to headaches; I couldn’t sleep due to headaches. One thing I don’t think people realize is how distressing it is to live with the realization that, at any moment, you could be laid flat for many hours or days with the worst pain you’ve ever experienced. I don’t know how much research has been done on this, if any, but I believe there has to be a positive correlation between migraine sufferes and depressive symptoms or mood disorders.
At some point during my first year of college, my godmother discovered this herbal supplement called Feverfew and I began taking that every day as a preventative measure. Maybe it was just the placebo effect, but it did seem to reduce the frequency of the headaches; instead of getting them several times weekly, I would usually get them several times monthly. The reason Feverfew works is because it helps block that initial flood of serotonin that most scientists believe spurs the initiation of a migraine, reducing the inflammation of blood vessels and, over time, limiting the blood vessel spasm that occurs in migraines. Unfortunately, it can be problematic because one of Feverfew’s active ingredients has been linked to digestive disruption in approximately half the people that try to take it, and though it works for the blood vessels in your head, it can have negative effects on vascular health in other parts of your body, particularly if you smoke or take birth control. In fact, this is a side effect of most migraine medication. I was once denied birth control because I informed the doctor that I took prescription migraine medicine, and she told me that the risk of developing some kind of vascular problem and blood clotting was too great. A few years later, a nurse pracitioner at my university’s health clinic told me about White Willow Bark, a sort of naturally-occurring aspirin that I added to my morning pill-popping routine. I don’t think there was any perceptible difference in the reduction of migraines, but the idea was that building up high levels of this organic aspirin in your bloodstream would dull the piercing pain of the headache, such that your migraines wouldn’t be quite as skull-crushing as normal.
It wasn’t until I became a vegetarian and began the gradual changes in lifestyle and diet that have, by now, all but eliminated my intake of processed foods, hydrogenated oils and refined sugar, that my migraines began leveling off for real. From time to time I still get one, but it’s almost always because I haven’t been taking care of myself during a time of high stress. My most recent one was in early July, when I had to go testify in court; it only lasted a few hours, as opposed to an entire day and night or potentially two days, as they used to.
I was lucky to finally find a great doctor–someone with whom I actually felt comfortable and who took the time to do a thorough assessment of my physical and mental health–when I lived in Brooklyn. For once in my life I felt that I did not need to edit parts of my history, that I was not being judged, and that as her patient my doctor would spend however much time I needed during my appointment. (She even thanked me for being a social worker and told me I deserved a medal as she was sticking that TB injection into my arm.) Anyway, I told her that I experienced migraines, and she asked, “Since when?” I told her my first one was at age nine. She literally gasped and said, “What did your parents do? Take you to the emergency room?” I think I may have laughed. She informed me that no one should be getting headaches that young, that I should have had a full neurological workup, that even now she would recommend I see a headache specialist to determine that my migraines weren’t the cause of some other problem. It’s probably silly, but having someone–a medical professional–validate that I had really suffered with this problem for a long time, that my pain wasn’t imaginary, that a migraine is not just some headache, really meant a lot to me.
I’ve found that the people I meet who have migraines all share certain qualities similar to me. We tend to be introverts; we tend to be light sleepers. We all have a penchant for caffeinated beverages (coffee, tea, Coke). (Caffeine stimulates the blood vessels and constricts them, which can help relieve pain if you’re experiencing a migraine. All over-the-counter medications for severe headaches–like Aleve Migraine–are basically caffeine and acetaminophen.) Many of us have some creative ability. We tend to skip breakfast (which I did regularly until becoming more conscious of how bad this is for you). We generally started getting them in high school, and have faced peers, parents, teachers, coaches, professors, and bosses who don’t believe that a headache can be that bad. Repeated loud banging or flashing lights can induce one. We have all tried so many different medications and remedies. We are often fairly sensitive individuals who feel things deeply. However, we generally have a higher than average tolerance for physical pain. And above all, we can’t effin’ stand it when other people sigh and say, “Oh god, I just have SUCH a migraine today.” We are positive you are NOT having a migraine, just as the person who has faced a minor setback and is kinda bummed is NOT depressed.
That I know of, no one has ever died of a migraine. But when you have one, death is preferable.
You can sign a petition to the medical community and insurance providers on behalf of migraine sufferers here.
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January 11th, 2009 at 7:21 pm
I know I can only understand the tip of what you’re going through, and I’m sorry, really sorry that you have to suffer so. Others really don’t get it. They don’t know how much we cover the pain just to get through the day. Even though I have only had a few migraines, they’ve been crippling. Have you ever had an MRI to check for Chiari? Just curious, as your migraines sound just like mine and I suspect Chiari. It’s when the brain stem slips into the spinal cord below the foramen magnum, causing all sorts of problems including blocking the flow of CSF, cerebral spinal fluid. I have all the symptoms you describe. The pain was from pressure was so bad it ruptured something behind my eye and leaked spinal fluid.
By any chance, do you have loose joints? The low blood pressure is another clue. A lot of people with Chiari have Ehlers-Danlos Syndrome, a collagen disorder/ Just wondering. BTW, in most cases, having Chiari DOESN”T mean you should do anything about it. Unfortunately there are doctors (neurosurgeons) who will operate on even mild forms of Chiari, which is associated with migraines, and the cure can be worse than the disease. Still, it’s worth looking up, and if you have any MRIs, get them on CD and look for it yhourself. A lot of neuirosurgeons miss it. Mine did, and he’s really good. It’s just that not many people know about it, but suddenly it’s becoming diagnosed everywhere.