Life in the Shadows: During an Attack

What Does it Feel Like?

What does a migraine feel like? The short answer? I don't know. I've had dozens, maybe hundreds. I don't know what they feel like. What does it feel like to swallow your own limb? What does it feel like to fly naked in a broken-glass sky? I've done neither of these things, but they are as baffling and awful and hard to describe as migraine feels to me every time.

On just one occasion I tried to describe a blow-by-blow account immediately after an attack. You can read it here.

Each attack is different. Each attack is the same. I try hard to forget each immediately. An attack is a portal to another realm, where every nerve of the body is fighting with itself. Not all of the body hurts, but all of it is affected. My limbs move a thousand miles away, and I can correspond with them only by telegraph, and the operator is either absent or heavily inebriated. I'm left messaging in the wrong language, and the results are sloppy and somewhat indecipherable.

I don't like talking about the pain. Especially not after I've failed to abort or mitigate an attack, and it becomes Full-Blown. It's just too intense. I don't have words, and when I do, I don't want to hear myself say them, or read what I write. Besides, it is impolite. Polite people don't talk about their messiest bowel movements if they can help it. Polite people don't talk about their pain.

Keep Your 'Meaning' Off My Body

But we have to, don't we? We have to. If we don't talk about it, this common physiological experience stays in the realm of superstition and stigma and taboo, and we don't find solutions, and also, we don't bring to society the lessons we learn in the dark. We will lock ourselves in our quiet, dark rooms, or allow others to, as they've done historically, and be too ashamed when we emerge to face our Migraine Self. The Other. The one we aren't at peace with. The one who drives us, whip in hand, to beg for cures and treatments. The one that is cruelty, or its shadow, punishing us for an unspecified, unforgivable offense.

No. No. Not that. Not that at all. We mustn't allow migraine to have Moral Meaning. We mustn't accept the counsel of the well-meaning, who tell us that if only we could solve something broken about ourselves, something spiritual or, maybe worse, psychological, then our pain will go away. That our unique pain is a fiction, or corresponds to a deficit of the soul.

No. We must reject this as a dogma of those privileged with good health, which they deserve neither more nor less than we do. They don't understand the strength and courage and patience and forbearance we exemplify every day that we live and struggle with this disease. They have no idea how "good" we are. How healthy we really are inside. How hard and sincerely we try, even so, to get better.

Pain

When people think "migraine" they often think "headache," even though many peoples' migraine attacks do not include a headache. For me, the pain of migraine is the part I feel least inclined and able to describe. It's difficult because pain like that leaves something akin to trauma behind. It's also difficult because the pain, for me at least, is dynamic, not static. It's not only one thing.

(Pain is also not necessarily most of what happens during migraine, even if it is the most reckognizable attribute. Migraine has four phases. They aren't all present in every attack or person, and they can overlap somewhat: aura, prodrome, headache phase, and postdrome. The strange visual and sensory symptoms experienced by many, though certainly not all, before the pain sets in is aura. I think of prodrome as the body fixin' to get ready to go into Dire Emergency Mode. That's the headache and nausea and other fun. The last phase, postdrome, is often called "migraine hangover" because it's common to feel you've come off a terrific bender — without the fun.)

migraine

a temperate afternoon menaces
from the sliver between the curtains:
the scowl of a weary lord.
obedient, i lay perfectly still
eyes closed, blindfolded, a pillow on my face for good measure.
if i wait here long enough, maybe i will not offend it,
and growing restless, it will leave,
i say, of the day, of the pain.
and yes, unless i move in any way,
or any sound or tickle of light reaches me,
i can almost drift off under my pillow
almost imagine this is not another token on the scale
whose balance threatens to say: she is of the Sick

i have reached into my "rescue" bag,
fumbled for a pill or four.
i am reluctant to put my mind in the hands of these stony, enigmatic gods
born under fluorescents in a too-bright lab.
but the pain, unabated, makes trenches in my nerves.
they become the lowland every sense must swim beneath to tell me, harried, of the unwelcome world.

just yesterday, i explained myself to a doctor, bracing for a different glare.
no, i told him, i would not take the medicine he'd prescribed
i would not be the pig at the trough of addiction.
he nodded, pensively, weighing his options.
he offers, as a compromise, more of the wretched same.
i leave empty-handed, narrowly avoiding all of it.
an adventurer in the wilds of pain.

August 19, 2010

Chimerical Migraine

Even within my one, small body, migraine pain takes different forms. My headaches usually take a long while to really ramp up, indulging a variety of volumes and intensities along the way. At their worst, they are...consuming. It's pain on the outer limits of what I imagine my body can endure. It's pain so intense I am struggling for breath and in a place beyond words.

Fortunately, that is not the norm and, more recently, is a mostly fading memory. Now, the migraines are better controlled with a variety of tactics I have learned the hard way over the years. More often, a headache now is a manageable pain. I am muddle-headed. My head feels like a cave crammed with musty old furniture, stacked haphazardly, pushing their bulk against the sides and ceilings. I find myself wincing and cowering from a pervasive pain, but I'm still able to speak and move about.

These monsters like to sneak up on me, especially in my sleep, or if I'm in the middle of something deeply engaging. Then I'll shift positions and realize something fell is brewing at the base of my skull, or over my temple, or in my forehead. I will stumble into a dark corner and try to figure out what to do against it, before it overtakes me.

The Omen of Grump

It also happens sometimes that I'll find myself, with no apparent reason, having slipped from one moment to the next into a foul mood: irritable, with a feeling of being pinched inside, my face even screwed up a little into a frown. I'll often realize this after I am struggling overmuch to do Something Easy, like find the paper I just had in my hand, or a matching sock, or make a cup of tea. Or I realize I have been pacing around looking for something that, I will later discover, was right under my nose, where it usually is.

This much, of course, is a familiar sensation to all of us when we're having an off day or moment. Being out of sorts doesn't mean you are having a neurological event. And this is one of the reasons it has been hard to intervene early enough in an attack to abort it with a triptan (the class of migraine drugs that can sometimes be effective to this end): I'm tempted to just write it all off to absent-mindedness or a rough start to the day. But then I'll take a trip to the bathroom and have an unhappy experience, or find myself stooped crookedly away from the light while I'm there. And I'll begin to suspect I've been fooled again. My body is trying to slip into Dire Emergency Mode.

(Read Under Attack for a fuller account of one migraine attack, from beginning to end.)

Symmetry

The worst is when I go all the way through the phases of migraine up until I've just started to get some relief from the headache and am settling into postdrome, when the headache switches sides. It starts up again, rewinds to the beginning of pain, and launches into it again from the right, instead of the left, or the left, instead of the right. This is often accompanied by very intense strobe lights flickering in my eyes, so that everywhere I look in the dim light of my bedroom is an unwelcome, rapidly flashing light show. And then the headache kicks off its shoes, puts its feet up, and settles in again for hours or days of reruns.

These long, bleak days of pain leave me wary of being in my own skin. It hurts here.

Live from Migraine Land!

(Here's a poem that came to me when I was too sick to write it down, in bed in a dark room. You'll hear a voice I hardly recognize as my own, spilling words into the recording app on my phone.)

Invertebrate 1

Sometimes the pain doesn't limit itself to my head, or even my neck. It travels down into my body, knotting itself and lodging here and there, or molds tough sinews out of tissue that should be soft. Sometimes I can run my fingers along a ridge in my flesh that should not be there, and if I could trace it fully, without the obstacle of skin, I know I could hunt the pain as it burrows down into the soil and through the roots of me. I don't know where the pain is going, nor everywhere it has been.

Am I apart from my pain? Other than? Or am I one with pain?

More Than Headache

Migraine is, for me, about much more than headache. It is also about a neurological experience that can be bewildering, disorienting, and frightening. It is always involuntary.

Breaking in Different Places

Migraine has broken different parts of me at different times, including
  • the (temporary) loss of sight in one eye
  • slurred speech and trouble finding words
  • difficulty standing, walking, and handling objects (including medication)
  • flashing lights that I know cannot be real outside of my brain (though sometimes I ask someone just to be sure)
  • days and days of deep pain in my eyes, even when they are closed
  • appetite loss, nausea, and/or successive bouts of vomiting
  • tingling that lasts for hours or days in a foot
  • the sensation of all of my teeth being mildly electrocuted at the same time, and, of course
  • profound fatigue.
(I'm sure I've forgotten some.)

Fortunately, these don't all happen at the same time, though I've often felt several simultaneously. And, I fully recover from each with no lasting damage.

Electical Storm in the Brain

Most disconcerting is the mental confusion that is associate with rapid and dramatic changes in my brain. There is a phenomenon documented with fMRIs in migraine brains called "cortical spreading depression." (It's not the same as depression as in depressed mood.) They spotted it decades ago, first in lab animals, and later in human subjects. (All hail the migraineurs who volunteered to have an MRI during an attack. Hearty souls, to be sure.)

My understanding is that cortical spreading depression is a wave of chemical and electical changes happening in the brain. This wave starts in one place and ripples slowly across the brain tissue at the rate of between 3 and 6 millimeters per minute. This is something scientists can see and map using various measurement and imaging techniques.

It's called "depression" because the electical activity associated with important biological processes is dramatically, temporarily reduced. This phenomenon isn't exactly what hurts about a migraine — there are no pain nerves inside the brain like there are in, say, the skin. (The headache pain we feel is mostly from the trigeminal nerve that spans across much of the face and scalp.) Nor does it exactly coincide with the pain phase of the attack. Researchers still struggle to understand CSD's significance to the felt experience of migraine.

Whatever it is that is happening, the net result of this altered condition of the brain is, in my case, an altered, somewhat dim-witted, semi-hallucinatory state that I get to have simulatenously with the related, but separate, crushing pain. It's probably akin to a really bad trip with a mild hallucinogen, after a car crash. I know where I am while this is happening, and have never seen flying elephants or anything like that, but reality seems to be a very bad, peculiar-seeming dream that physically hurts and I cannot wake from. At least, not until the attack is over.

Invertebrate 2

(Another poem recorded during migraine.)


On days like this I have no bones.
My skull forgot to be a fortress
and threw wide the gates of invitation.
The rabble entered.
A flea market is happening.
The goods for sale are the tokens of Order
that had been diligently installed
up to the point of the crowd's arrival.

It may seem dark to you
but I see the lights are flashing.
I will drag myself through the raucous halls,
one eye open
in search of a dark cavern
where I might curl up and go to sleep.

Driving While Blech

Nor is it a good time for me to be making decisions. I got lost once driving home on my usual commute route when I had to leave work early because a migraine was starting. Had to pull over and wait for a ride. Took me a while to find my phone and remember how to use it. It was even more of a struggle to identify where I was. (I've written elsewhere about trying to drive with migraine. I've grown very cautious about driving with migraine over the years.)

Once upon a time, I used to try to "work" through my milder migraines. This was before I found effective medicine. On one particular occasion, I spent a determined afternoon trying to meet a deadline at work while experiencing what was really quite a lot of pain. Staring at that screen and thinking as hard as I could for hours only worsened the headache, and it exploded that night into a full-blown attack, the kind that leave me completely disabled for days. When I finally made it back to the office, imagine my frustration to find the document I had heroically written during the "mild" headache was, to put it bluntly, almost unreadable. I made big mistakes in logic and facts, and it was poorly written. Fortunately, the deadline I had been so severe with myself about wasn't a hard one. It slid fine, I reworked the document, and averted disaster.

We See...Everything

The point of these stories is not to imply that migraineurs are stupid and can't be trusted with important work. To the contrary. Migraineurs, my doctors have liked to remind me, tend to be more likely to be very conscientious, reliable, and meticulous (OK, OK, perfectionist) in our work habits. It is exactly our excellent sensitivity to detail that makes us vulnerable to too many inputs of the wrong kind for our bodies, sending us into an attack. I have known brilliant lawyers and professionals of many kinds with migraines who I would not hesitate to trust with the gravest, most urgent problems in my life or anyone else's.

Rather, we are a tribe whose bodies, perhaps more sensitive than others', can rebel against us in particularly disconcerting and creative ways. We MUST, then, learn as much as we can about the parameters of this rebellion, forgiving our accidental mistakes along the way, in order to make the most of our talents and keep our symptoms in check. This is why we must be very kind to them. So that they don't kick us in the head.

If you are a non-migraineur who for some reason is reading this, know that in all likelihood, the migraineur in your life is trying very, very hard to live up to — and probably exceed — expectations. It's possible you don't notice, because that person may be working overtime to hide both the extent of his/her effort and the ordeal s/he goes through during an attack. We are especially vulnerable to hiding in shame because of our condition, even though it reflects on our character and capabilities not at all.

But you can be bigger than that. Consider asking yourself how that person's greatest skills and talents might be delivered to your family or organization or group with less effort and cost to him/her. If you aren't certain you have the right answer to that question (and maybe even moreso if you are), consider asking him/her. You are likely to be rewarded handsomely with loyalty and excellence from someone who is, in all likelihood, heroically brave just for showing up.

(Read my partner's perspective on living with my migraines to get a sense of how a loved one's kindness can itself be healing.)

Suffering

My lowest moments occur when I've emerged from many days of successive attacks, with few or no healthy days in between, and migraine has sucked up all my happy juice. It's not during the full-blown migraine, because I am in such an altered state then that I don't really have the ability to evaluate my situation. It's afterward. It's when I've lost days, or weeks, of my life to pain and misery and I'm just well enough to know how bad it was, but not well enough to remember that's not all there is to life.

Finding the Bottom

There was one occasion when it was just too much. I made the mistake of looking into the future. I tried to imagine enduring the cycle of attacks indefinitely, all while endlessly experimenting with ineffective treatments. I couldn't. I couldn't imagine going on like that. I couldn't give the universe what I thought it was asking of me: my persistence in the face of unrelenting anguish. I wasn't strong enough. So I started to think about stopping.

I didn't, obviously. I'm still here. Migraineurs have higher suicide rates than other people, and the reasons are fairly obvious. In my case, I told my partner that I couldn't go on, and he intervened in a way that was, fortunately, available to him, and that probably saved my life. And I was left with a new understanding of my limits.

It's a good location to be aware of, the bottom. It's important information. It's okay to know it's there. It is its own kind of helpful boundary: I will do this, not that. I will live with this much pain, but not that much. It can help a body sharpen, find focus. The goal becomes very simple: to never again be that miserable. Priorities fall into line.

Learning Intolerance

Looking back, I realize that part of what got me to that point, of hitting bottom, was that I had actually been too tolerant of suffering in my life up until then. I thought I should have been tougher, and I beat myself up for being weak. I should have worked harder. I should have been able to endure more. I shouldn't have let anything limit me the way migraine had.

With the help of time and effort, this mindset now seems entirely ridiculous to me. Of course nobody, not even myself, has the right to tell me I should be willing to suffer more. It's a ridiculous position to take. We aren't wired for limitless misery. It's not what life is for. As organisms, we did not evolve to live in a state of unbounded suffering. We evolved to thrive.

Reaching bottom helped me recommit myself to honor my nature in this way. To commit to suffering less.

Now, I know my job is not to bravely endure as much as possible. Sure, bravery is good, but it is neither a reasonable nor kind standard to apply here. The standard is to avoid the needless harm that requires bravery. This means that, as much as I can, I prevent attacks, but if and when they happen next, I endure them with as little suffering as possible. Because pain and suffering are, it turns out, two different, if related things.

Meaning as Suffering

This brings us back to the head game. I can have two identical migraines, in terms of physical symptoms at onset. But if one of them includes cataloging for myself all of the ways the migraine is evidence of my failing at life, letting people down, or missing opportunities, that is the path of greater suffering. I cannot afford to go there. The attack itself is enough. All this Meaning I give it is me piling on to the physical process in the body. It's unnecessary and unhelpful.

So I don't give migraine Meaning now.

In other words, part of being a healthy sick person is refusing to extrapolate from the illness. Keeping it something that means very little. Migraine isn't failure. It isn't disappointment. It isn't my comeuppance. It isn't a fait accompli. Migraine is what my body does when it is struggling to deal with certain inputs it has, unfortunately, received. So I try to remove those inputs, and when I can't or don't, I let the migraine happen, doing what I can to minimize its impact on my peace of mind.

Not surprisingly, this approach has the additional benefit of reducing the actual duration and severity of the attack. Stressing out about an attack is good for migraine, and bad for me and my happy juice reserve. Refusing to let it get me down helps keep the attacks more manageable. The professionals call this approach "not catastrophizing."

It requires discipline and mental flexibility to have a strong head game during a migraine attack. I've listed a few of the books that have helped teach me how. It isn't necessarily easy. I don't always succeed. I still get in my self-blame spiral sometimes. But mostly, now, I see that I am as strong as I can possibly be. Nobody else has lived my life or weathered exactly my attacks. So the only meaningful metric I have to judge my progress is myself. And I can see that I am suffering less and, not incidentally, accomplishing more in the process.

Returning From the Shadows

Sometimes the weirdest thing of all is being not-sick. When an attack finally subsides after a particularly long ordeal, or a succession of attacks without any truly healthy days in between, I will often find myself standing around, staring into space, in awe of the world. Colors I could not see in dim light radiate at me with a luminescent glow. Sounds I might never have noticed — the creak of that one floorboard, the breathing of the dog, the ticking of the watch in the other room — appear lush, unique, fascinating. And, when I venture again into it, the buzz of city life and vibrant humanity hit me with a new force, a new triumph. The mere act of listening, of seeing, painlessly, seems a fantastic vindication. Life is amazing, and beautiful, again. Life is worth living.

With this, often, is a sense of profound fragility. I feel I am a diaphanous creature, a snail without its shell. I find myself viewing the vital world as a living thing in its own right, beautiful and frightening. By turns, it hurts me terribly, and intoxicates my senses. It is as if all of the sensory me has been unbottled, and my skin removed. I am vulnerable. I am pulsing, and wary, and glad to be blisteringly alive, whatever the cost.

The best is when I have successive healthy days. You know, like normal people. I start to feel that little bubbling brook of inspiration inside me again. Waking up again and again with the same fully-functioning cognitive abilities is like sailing on smooth glass after years of squalls. It's unnerving and wonderful and hopeful. It's beautiful. When this happens, I tend to stay vigilant for a while. It takes time to settle into normalcy. I'm still keeping an eye out for the next storm — which I must assume will come, or else I'll get sloppy and start courting my triggers — but meanwhile, wow, look around. This place is amazing. It's nice here.

Next up...
Tending the Body, Tending the Mind


More Migraine Island!