Wrestling With the Ghosts In My Head

Janet Steen tries to understand the shifting causes behind a decade of mysterious migraine pain.

Janet Steen | Longreads | February 2019 | 14 minutes (3,463 words)

One of them I think of as a malevolent flower growing in my head, unfurling petal by petal, causing great distress. Another variety is an ink spill in the skull, maybe if the ink were scalding hot, starting at one precise point and then spreading heavily into every cavity. The most common is the plain old nail underneath the eyebrow, always on only one side of the face, hammered upward and lodged there for hours or possibly days, depending on whether I got the timing right with the medication. For me that’s the Wal-mart of migraines, super basic, but it’s still a fascinating one. The pain seems to be contained in one area but is so intense and pulsating you could swear it’s everywhere. So I play games with it. I try to feel with my mind — which is funny, because it’s in my mind — where the exact line of the pain stops and starts.

I may as well do something with these long expanses of time when there’s really nothing to do but feel what’s happening up there. So I try to give myself over to it. Feel the contours of the sensation. It has a shape and a texture. It spreads and moves. It’s like a country suddenly forms and establishes a government up there. Each migraine episode, if you really pay attention to it, has a personality. Oh, this one really wants to take me down. On another day it might be more passive-aggressive. This one is the toxic narcissist, gaslighting me. Sometimes when I’m not sure how bad it’s going to be I like to say I’m flirting with a migraine, but it’s really the migraine that’s flirting with me, and then I finally cave and let it have its way.

***

I’ve been full-blown migraine lady for ten years now. There are many kinds of migraines but suffice it to say they are not regular headaches. Well, they are kind of like headaches if headaches could be thrown in a room, tied up, interrogated, then doused with gasoline and set on fire. An aspirin or ibuprofen won’t touch them. During an attack, light and noise are hard to bear. Often it hurts even to breathe. Sometimes there’s nausea. Some people have spooky symptoms like the aura, where you get visual disturbances like bright geometrical lines in your visual field or partial loss of vision. I’ve only had that a couple of times. Mine tend to be low-budget, with no special effects.

It’s tempting to trace it back to when I smashed my head. Unexplained bicycle accident in August, 2008, stupidly not wearing a helmet, got concussion, still have no memory of most of the day. Did that somehow set things off? Fuzzy for weeks afterward, I had to take painkillers for broken wrist and elbow. The painkillers — oxycodone — ironically caused some of the worst head pain I’d ever experienced. But doctors treating me for migraines have never been all that interested in the detail about the bike accident. And MRIs then and later showed nothing wrong with my brain. I recovered normally from the concussion.

Sometimes when I’m not sure how bad it’s going to be I like to say I’m flirting with a migraine, but it’s really the migraine that’s flirting with me, and then I finally cave and let it have its way.

Five months after the accident, my father died. Despondent, feeling guilty that I hadn’t been able to do more for him in his last days, I couldn’t sleep for nights on end. A friend gifted me some leftover Klonopin she had, to help with the insomnia. I’d never taken anti-anxiety medication before. I would break off part of a pill at night and fall into a bubble of not caring about anything, then sleep long and hard. Why not take this every night until they’re all gone? Okay, I’ll do that, I thought. I thought it without speaking to anyone about it. (This is how bad habits get started.) When the pills were gone, I went back to not sleeping at night.

Within a couple of weeks, I found out about a mental-health nurse in private practice nearby who prescribed such things, made an appointment, told her my situation. She handed over a prescription for a staggering 90 one-milligram pills for the next month, with refills. That was three whole pills per day if I wanted, even though I’d previously only been taking a quarter or half a pill at night to knock me out. I could become a full-time zombie if I wanted. I could lie around in a haze and drool on my shirt all day. But I had a family, I had a 5-year-old daughter, needing most of my attention. I was not in any position to zone out. The Klonopin continued to help me sleep and I started bumping up the dosage. It made me slow and depressed the next day. The migraines continued, getting worse, I imagined, from all the ups and downs in my head.

This was a short-lived phase. I took myself off the stuff sometime in the second month, ignored the refills. But I still look back and wonder if maybe my brain didn’t like the strange, erratic chemistry experiment I’d put it through, and whether that precipitated the migraines. “The brain doesn’t like change,” a doctor later said to me.

But surely it’s not that simple. When there is something that dogs you, that’s always back there waiting to pounce, it’s tempting to think that one day the cause will be found — that one thing that just hadn’t occurred to you yet — and your tormentor will finally turn around and trot off in the other direction. It’s mold, it’s perimenopause, it’s wheat, it’s dust. Or it’s something more abstract — it’s the fakery of social interactions, it’s the “inauthentic” life, it’s the false notions of your influence over other people. I’ll clean everything up, literally, figuratively. I’ll eat differently, live differently. But I often think of a conversation I had with a neighbor who had a mysterious health problem for years, who shook his head and said, It’s never just one thing. In my case anyway, I started to feel the cause was as deep and emotionally complicated as anything I’d ever dealt with.

***

Another variety I don’t picture so much as conceptualize. It’s the sneaking suspicion, the kernel of dread. It nags throughout the day but is impossible to pin down. It comes and goes, so I assume it’s not to be taken seriously, and I hesitate to take my medication because I can’t afford to waste part of a pill on something that’s not the real deal, and the day becomes a struggle over whether to take the pill or not. The indecision then becomes part of the distress. Because at this point I’m like an addict hoarding the Imitrex, the abortive medication I take as soon as an attack happens, which works by constricting the blood vessels in the brainstem. The insurance company approves only nine pills per month, which I then split in half (a half-pill, 50 milligrams, usually does the job), giving me enough for 18 doses a month, and every month I have to make sure I don’t run out. Every month I go up to the limit.

It feels important to stress that I am not unique. We migraine sufferers are legion. There are something like 37 million of us in the U.S. alone — 13 percent of the population (although government spending on research is shockingly low for such a widespread problem). And we can be highly functional. We press on. We go to work. We pick up our kids from school on time. We talk to you in the grocery store while this crazy shit is going on. You can’t see it but you might sense we’re a little off that day. (A friend of mine, however, is perceptive enough to notice that one of my pupils is dilated more than the other on migraine days.) I should also stress that on my non-migraine days — roughly half each month — I’m so overjoyed to be clear-headed and out of pain, I get an enormous amount done. I’m the bionic woman. So I and my fellow migraine sufferers do not want to be discounted for anything. Don’t take us off any lists.

In the first few bleary years of not knowing why my situation was as bad as it was, I gradually started educating myself, reading books, websites, blogs. Chronic migraine is actually a neurological disease, I learned. Hey, I have a disease: it’s much more official now. You don’t get migraines, you have migraine. It’s an ongoing state, so basically, you are always either pre-migraine, active migraine, or post-migraine (what they call postdrome).

A sort of bracing happens on the days when I feel pretty good but not entirely great and am worried that something is coming around the bend. I can feel hints of pain alighting in certain areas, then disappearing. Or maybe I’m imagining it. It’s possible I’m gaslighting myself. Pain located in the head does a confusing thing where it seems to fuse with thoughts and feelings because we assume they’re all inhabiting the same space.


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The postdrome, after an attack is finally over, can feel almost like the flu. The American Migraine Foundation puts it this way: “Common postdrome symptoms include fatigue, nausea, sensitivity to light, dizziness, body aches and difficulty concentrating. One postdrome sufferer described the day after a migraine headache as feeling like ‘a mental fog, one so heavy that even routine tasks take on an otherworldly quality.’” This was exactly what I’d been experiencing for years and punishing myself for. If the head pain was gone, why wasn’t I back to my old self and crushing it? I sometimes needed a whole day and night to recover from a really bad attack.

In the midst of all this, Imitrex has been saving me. I’ve been taking it for years now. It generally works to short-circuit a migraine after one starts, although it sometimes takes hours to kick in and the side effects are dreary — tiredness, a spacey feeling, a strange blankness. It’s best, if the timing works out, to take it at night so the side effects are slept off. If you’ve suffered a full-blown attack despite taking the medication, you then have the extra challenge of the medication’s side effects and the post-drome colliding. This is like a terrible hangover with absolutely no previous fun.

***

Picture a woman getting in and out of her car, going to doctors’ appointments, sitting on those crinkly paper sheets on the exam tables, rattling off the same old symptoms, getting the scripts, over and over again, for years. Nothing got better. In 2017 I finally went to a neurologist, a migraine specialist, who had recently started practicing in my area, the only specialist within a two hours’ drive.

Dr. Neurologist is enthusiastic. We’re going to figure this out, he says. There is no cure for migraine but there are many effective ways to treat it and prevent attacks. We initially talk about causes and triggers. Oh, I have lots of triggers: alcohol; chocolate; dehydration; too much sugar; stress; low barometric pressure. He does a quick test and determines I have TMJ (temporomandibular joint) dysfunction, which has to do with how your jawbone connects to your skull. I’ve long suspected this because my jaw clicks sometimes. That could be contributing, he says. We start talking about my mouth. Did you ever wear braces? Yes, I wore braces as a kid but decades later my teeth started moving back and the spaces started opening up again. My regular dentist has told me “there’s a lot of movement going on in your mouth.” She seems excited by all the activity in there. Both she and the neurologist suggest consulting with an orthodontist. What a cute idea: my daughter, at this point 14 years old, is about to get braces. Maybe we can both get them and it’ll be like a long-lost Gilmore Girls episode. Could it have just been my teeth all along? It’s never just one thing.

I have consultations with two orthodontists. They are both unconvinced that braces will make a big difference with the headaches but one of the orthodontists, who looks like he’s 12 and is way too upbeat — he answers all my questions with “One hundred percent!” — gives me a cost breakdown anyway, with 20 percent off. I do eventually figure out a workaround with my dentist for closing up some spaces to prevent the teeth from moving more, without getting braces, and in fact it has no effect on the migraines.

Dr. Neurologist suggests meditation to deal with stress. Stress can play a big part. Have I tried meditation? I have, yes. I have also tried acupuncture, and yoga, and various herbal remedies. Smoking pot has only ever made my head feel worse. Microdosing LSD is used for those with cluster headaches, which are a different kind of migraine. I have to explain this every time a kind friend offers to score me some acid.

In spring 2017 he tries me on a preventative medication called Topiramate, originally an anti-seizure medication for epileptics and now used on migraine patients, something I’ll have to take every day. If it helps to prevent attacks, I may rarely have to take the Imitrex anymore. I might get some weird tingling in my fingers and my hair could fall out, but let’s give it a try.

***

Long before I was migraine lady I was headache girl. I had bad ones back when I was 9, 10, 11 years old. I’d always assumed they were regular headaches because they responded to aspirin. When I went on the bus to go shopping downtown in our midsized city, where the polluted air felt trapped and oppressive in the tight city blocks, my head would pound. But in more benign places, too, I’d be overcome sometimes. During violin lessons at a summer arts school in New York state, with a well-meaning but overbearing male teacher who sweated profusely and smelled of body odor and Tussy deodorant, I would feel the headache come on and find myself in agony by the end of the hour. Was it the smell, the pressure, the fact that I didn’t want to be there? I remember an afternoon in particular one summer, lying in fetal position on my bed on a bright sunny day, waiting for my mother to come home from a rehearsal and give me comfort. I wanted someone to see what I was going through. The distress was always invisible and it was easy to feel claustrophobic and alone with it.

My head already felt like a problem, that early in life. It was overly busy in there. I worried about all kinds of things. Last year I read a piece about migraines in Catapult magazine by Rachel Mabe that made more sense to me than most things I’ve read have, and which described vigilance as a common characteristic among chronic migraine sufferers — in other words, a tendency toward “extreme awareness” and “active protecting.” The way you speak about an illness is important, the article said. It quoted a sociologist named Joanna Kempner, who has written about gendered responses to migraine. She takes issue with the word “oversensitive,” often used to describe women who get migraines. Women are three times more likely to suffer migraines and they are often treated differently than men, a 1999 study found, with more women being prescribed medication, especially antidepressants, than men. “The language we use to talk about migraines, according to Kempner, is steeped in a history of fragile femininity. The sensitive nervous system, for example, brings to mind ‘neuroticism and passivity,’ she says.”

As a child I didn’t think of myself as neurotic or passive but I did feel vigilant. Watchful. Like a shoe was constantly about to drop and I needed to figure out whose shoe it would be and where it might land. My parents’ marriage was strained and tense and their communication was baffling to me. They were both often moody and my father was particularly hard to read. I was the youngest of three. They say the youngest tends to feel the most responsible for things in the family system. I had dreams well into adulthood about the childhood home collapsing in on itself. I wanted to keep that from happening, in whatever way I could. Keep a close eye on things. When I had my bike accident as a full-grown woman, the thing I kept asking repetitively in my confused, concussed state in the hospital was “Is everyone okay?” I was convinced we’d all — my original nuclear family — been in a terrible accident together and I was frantic to find out how everybody was.

Any kind of debilitating distress makes you a little more able to imagine someone else’s debilitating distress, at least if you have empathetic wiring to begin with.

I did not explain all this to Dr. Neurologist, that I have a longstanding feeling of guilt and responsibility for others’ problems and that it causes a lot of pressure, perhaps pressure in the head. Not that he’s not a nice guy and wouldn’t actually listen. Therapists have listened. But Dr. Neurologist has a lot of patients and at a certain point, everything shifted toward treatment and was no longer about cause. I am still on the preventative medication, which initially seemed to be helping, and thankfully did not cause hair loss, although it made me so tired at first I wanted to sleep all afternoon. I’ve stayed on it, although I went back to my usual number of migraines — roughly 15 to 18 a month. Why he’s keeping me on it, well, I’m not sure. To that the doctor has added the Botox treatment, now commonly used for migraine patients as a way to keep nerves from getting triggered. Every three months he puts 32 injections in points on my forehead, temple, sides and back of the neck and head, and shoulders. For some people this cures them right away. For me, there has been very little difference. He says we should keep trying; maybe it will still have some effect.

And in the meantime, because I’ve had such lousy responses to all these various treatments, I qualified for the brand-new migraine drug that some are calling a miracle development: Aimovig. The big fat pamphlet in my doctor’s office shows a satisfied, productive-looking man gazing down at his cell phone. On another page are some smiling millennials crowding around a packed van like they’re about to head off to Coachella. Not a migraine in sight. Aimovig is designed to block the calcitonin gene-related peptide (CGRP) receptor, which is thought to play a big role in migraines. You administer the drug to yourself as an injection in your leg once a month. I did this for the first time three weeks ago. I followed the directions closely and stuck the needle in my thigh. In the first 14 days following the shot, the number of migraines I got dwindled to three. I had the strange, unfamiliar feeling that a siege was finally coming to an end. Then in the third week, I had three fierce ones. I’m looking forward to shooting myself up again in a week. That’s all I can say for now.

***

I’d take no pain over pain any day but I can’t say my years with the head ghosts haven’t taught me some things. Like: Obsess all you want, but I think you might end up feeling as I do, that there’s no reason for pain, even if there’s a cause. Or: You can get a lot done when you don’t have an ax sticking in your forehead. Or: Any kind of debilitating distress makes you a little more able to imagine someone else’s debilitating distress, at least if you have empathetic wiring to begin with. And so you’re connected to other people in one of the most profound ways possible, through suffering.

The doctor keeps adding treatments and I keep looking for the cause. Ten years of searching for something and not finding it could feel like failure, but I rarely think of it that way. It’s more like an ongoing mystery in an excruciatingly slow-moving drama. The pain is repetitive, it’s dull, it’s maddening, but it’s not killing me, which puts it in a very different category than a lot of other illnesses. Every month I count the pills carefully. Now my hopes are pinned on that tiny bit of fluid I inject into my leg. The experience has been humbling, especially on beautiful days when I’m inside with the curtains drawn because the sun outside hurts. Sometimes I wonder, Have I been humbled enough? But then I see what some other people go through in this life and I think no, not by a long shot. To feel anything is to still be alive.

* * *

Janet Steen is a writer and editor. She has written and edited for mainstream magazines and less conventional essay sites. She helps people edit their books and is a curator of a new reading series in Brooklyn called Murmrr Lit.

Editor: Sari Botton