by Larkin Vonalt
A neurological journey
A quiet ride on a summer afternoon explodes beneath me, the little red horse rearing violently as a lawnmower starts up nearby. I only remember thinking “take your feet out of the stirrups.” The next thing I am lying in a bed, not my own, looking at my mother and searching for words. All of the other hours in between–crashing to the pavement, the horse returning to the stable without me, the paramedics, the ambulance, the eventing helmet now so much fiberglass mush in a velvet bag, the ER, the exams, this room in intensive care– all of that has been compressed into less than a single instant.
Only much later did my stepfather tell me that they didn’t know what kind of brain damage there might be until I resurfaced more than a day later. They didn’t know if I was really coming back at all. I’d had one hell of a concussion, a blow that would have broken my skull like a melon, he said. Good thing I’d worn the helmet. In the hospital, I struggled to tell my mother that I was riding through the subdivision on my way to the bridle paths that criss-crossed the woods beyond. I could not say the word “trail,” so I tried to spell it for her.
Once awake, I wasn’t permitted sleep, and sleep was all that I wanted. Every fifteen minutes, all day and all of the night , a nurse came in, shook me awake, measured my blood pressure, pulse, oxygen, reflexes and peered into my foggy green eyes. As soon as she stopped, I was diving, dreaming deeply, submerged in a place where it didn’t hurt. Then my fifteen minutes elapsed, and I was hauled back, thrashing like a marlin, to the surface of the world again.
When they let me go home, I went on sleeping. Relatives came to visit on the island, I remember them like a silent parade. It is not enough to say that my head hurt. It felt like my brain was caught in a vise, the pressure unrelenting. Every time I tilted my head to one side, it felt like someone punched me from inside my skull. If I moved very gingerly, slowing shifting that orb on its axis, I could do so without sharp rebuke. The only true relief was when I slept.
A friend of mine drove me to the stables one afternoon, but the horse’s stall was empty. I went to the tack room to collect my saddle. The leather was scuffed and scraped along the pommel and the cantle. I knew he hadn’t landed on me, but he must have kept falling too. I asked after him and one of the girls pointed to a lone horse in a distant paddock. “No one’s to ride him, Don said,” she called after me. My friend put the saddle in her car and I walked over the field to see the horse. He wasn’t mine, just a school horse, misunderstood. They couldn’t even remember his name.”Ch- something.”
I slipped between the rails and into the paddock. “Chesapeake?” I asked and he looked up. I fished a carrot from my pocket and he ate it. I leaned against him, trying hard to remember, tears sliding down my face. He sighed, as horses do, and stepped away to graze. I pulled a burdock from his mane and started back for the car. The next time I went out to the stable, he wasn’t there at all. ”Gone to Dr. Ballard’s,” one of them said. Dr. Ballard’s was a pet food company; the horse had been sent to slaughter. Years later I heard that Don, the owner of the stable, not-a-very-nice man, had gotten in trouble with an underage girl, and shortly thereafter was decapitated when he drove his sports car under a lorry.
I was sixteen and a half years old. I’d been dumped by my boyfriend; home from his first year of college, new girlfriend in tow. Our beautiful old dog died. My summer job teaching riding and mucking stables had come to a crashing end. They’d killed my favorite horse, no more would I run my finger down the long white stripe on his face. I spent most of my waking hours in a pain that ranged from dull ache to exquisite agony. Still, that summer felt strangely like watching newsreel footage of war crimes. It was uncomfortable, it was ghastly, it was sad but it was removed somehow, I was not connected to it. I stayed in my room playing Harry Nilsson’s “Without You” over and over and over again, trying to feel something, until my mother made me stop. Only when I slept did it all slip away like the tide.
School started, my senior year, punctuated with awful headaches and an overwhelming desire to sleep. Then something new: a smell. A smell that was not quite a smell. I knew that no one else smelled it, it was inside my head. And even so it wasn’t quite a smell exactly. It was the smell of the taste of kerosene. Not that I had any idea was kerosene tasted like. It wasn’t the smell of kerosene, but some other essence of something acrid and dangerous. And with that, came syncope.
I was there, then I was gone. I remember walking down the school corridor to the water fountain to try to clear the smell that wasn’t a smell. I don’t remember falling, or even thinking I was going to fall. I just remember opening my eyes to a clutch of my schoolmates gathered anxiously around, and shouts for Mr. Callbeck, the chemistry teacher. My mother was summoned and I went home. When they drew blood for tests, I was gone again, akimbo on the polished tile floor. The tests were negative. ”Idiopathic syncope,” it said on the lab forms. Fainting for no known reason.
It happened again, and again, and again. I began to understand the smell as a signal to seek refuge. If I tried really hard I could sometimes hang on, and not faint. When the diagnosis came, five years later, it all seemed so painfully obvious.
They were seizures.
We moved to Florida, I went to college. I worked at the independent student daily and often didn’t bother much with going to class. Ate when I was hungry, slept as much as I wanted. Newspapers are produced overnight, you don’t have to be a morning person. Sometimes I’d get that faint whiff of kerosene, a sense that the earth was askew for a moment, and I’d be very, very still and wait for it to pass.
But then I moved to Boston to go to art school, and the episodes came back with a vengeance. On a city bus. In the Star Market. Running up the stairs to my apartment. One morning in an improv class, the professor led us in a classic “exercise in trust”, where we were to fall backwards into the arms of a classmate. “Just let yourselves go,” he sang out.
We don’t fall backwards too often. Sometimes our feet slip out from under us and we land on our asses. But mostly humans fall forward onto their hands and knees. When I let myself fall backwards that morning, it all blew up again: kerosene, gasoline, terrified horse, shattering against the pavement, and out. This time, when consciousness ebbed back to me supine on floor of the studio, I was convulsed with fear and hysteria.
The neurologist wore those terrible 1970s glasses with big, plastic rims. Did I sometimes have a problem with words? Would I describe myself as paranoid? Did I have rages? Did I feel like I had a sixth sense about some things? Had there been an increase in sexual activity? (For real, Holmes?) Yes and yes and yes and yes and yes. He had many tests for me. I copied a complicated set of figure drawings. I counted backwards from 100 by sevens. I recognized a pencil and a watch. He told me a word and fifteen minutes later, I remembered it for him. I still remember the word: candelabra.
There was an electroencephalogram. It showed nothing. The good doctor was impatient. He believed he had the key, but he wanted empirical evidence to back it up. He ordered a sleep-deprived e.e.g. with nasal leads, and yes, that is just as barbaric as it sounds. I stayed up with friends all night, drinking coffee and smoking Balkan-Sobranies. By the time the I took the Green line subway to the hospital I was loopy and nauseated from lack of sleep.
A nasal lead is a very long rigid wire with a sensor on the end of it. The technician carefully threads it up your nostril until the sensor is resting on the base of your brain. Then she does the other one. My nose is not exactly straight and one of the leads bounced every time I drew breath. The technician came in, carefully pulled it out of my nose, changed something and painstakingly threaded it in again. Then she turned out the lights. It didn’t matter that my head was covered in electrodes and I was on a gurney in Beth Israel hospital. Just like I had for the previous five years I found refuge in sleep.
That test showed six abnormal brain waves. He had his diagnosis by golly: temporal lobe epilepsy, as a result of head injury. Over the years, other doctors have referred to this as temporal lobe seizure disorder, or by only naming the seizures: simple-partial, where I stayed in the world of the conscious; and complex-partial, where I left.
The neurologist began to prescribe. Phenobarbital. Depakote. Dilantin. Tegretol. Klonopin. I’d have to go into the lab to have my blood checked every six weeks to see how badly I was poisoning my liver. I watched each little glass tube fill up with blood. Light green cap on this one, purple cap on that one, the last one in red. No one had to rescue me from the floor. Each time I told the doctor that the cure was worse than the problem. The occasional seizures were embarrassing and frightening, but life in a pharmaceutical haze was worse. I gained weight. My hair started to fall out. I was agitated and confused. Where I had once been graceful, every gesture was unsteady now, clumsy. I was always sleepy, but when I slept, it was sporadic and dreamless, no refuge there. He’d prescribe a different one, and we’d start all over.
When I’d finally had enough, I changed neurologists and found Dr. Herzog, a self-described asthmatic marathon runner. He taught me how to manage the seizures by understanding the triggers, and how they accumulate. I had learned to cultivate that stillness before, and with his guidance I did it again. I went home after that first appointment and emptied every bottle of anti-seizure medication into the toilet. No more fucking little pills! I kept a notebook, and recorded every detail of all the tiny dramas in my life, measuring sleep and food, gin, sex and cigarettes. In time, I learned to anticipate the electrical storms inside my brain, and how to quiet them. In time a sense of grace returned.
Then one day something different happened. I’d been poking around in a church thrift shop north of Boston. When I tried to look closely at something, I couldn’t quite see it. It was a bit like the after-effect of a camera flash, maybe just from the sun in my eyes while I was driving. But it continued. The harder I tried to focus on something the harder it was to see. It was not that there was ”something” in my field of vision, but there was ”nothing.” I could see around the edges, but whenever I tried to look directly at something, there was only an absence there.
Frightened, I drove back into the city, trying to not look too hard at anything, praying that the rest of my eyesight didn’t fail. At Harvard Community Health Plan, I tearfully told the receptionist what was going on and she had me take a seat while she found an ophthalmologist to look at me. I sat there with my eyes closed, afraid. When they called my name I opened my eyes and stood up and I was . . . fine.
The ophthalmologist did not think I was crazy. “It seems you’ve had a migraine,” he offered, peering into my eyes.
“But there was no pain.”
He sat back and looked at me. “Aren’t you the lucky one then?”
For years, it continued like that: occasional episodes where I could not see what I was looking at. They’d last for twenty to forty minutes and then gradually ease off. It was unnerving, but there was never any pain, just fatigue afterwards. I didn’t know how to count my blessings.
Discontented, I walked away from the art scene, Boston and all her denizens, and moved lock, stock and barrel 2000 miles across the country to a place I’d never been. I had no job, no health insurance, no safety net. I was enjoying a glass of wine one evening with a new friend, Evelyn, after a soothing hour in the hot tub on her deck. The aura overtook me like a wave. I had only time to set down the glass and say “I think” and I was gone. Evelyn was hovering over me, cordless phone in hand, when I came back. I did my best to reassure her that the cavalry did not need to be sent for, and that I was okay. A little shocked at the seizure, and a little sad as it had been so long since I’d even had an inkling, but basically okay. As it happened, that was the very last one, though I couldn’t know it at the time. Once in a great while, I’ll catch just the scent of an aura for a moment, like a ghost .
In time I got married, settled down, bought a lovely Thoroughbred mare I was a little bit frightened to ride. She was young and green and misunderstood. Her name was so awful I paid the Jockey Club a hundred dollars (I could ill afford) to change it. She became “Pilgrim Soul” after W.B. Yeats’ poem “When You Are Old,” and I called her Abbey. I rode her in a simple snaffle. My old saddle fit her, so I polished it up, bought a new pad and girth. She was and is a kind horse, and she would stand quietly for me. I checked the stirrup length against my arm, gathered the reins in my left hand, put my left foot in the stirrup, swung my right leg over and settled lightly into the saddle as she began to walk away. We’d putter around in the fields near the house, never raising more than a trot. I was only good for about 40 minutes and then my nerve would give out, and we’d walk back to the barn and I would cry. I missed it so much, that glorious sense of fearlessness, the almost-flying sensation of sailing over fences, galloping along with my arms flung open from the sheer joy of it. That was gone forever. Abbey never once dumped me, and that’s a funny thing, because a few times other people asked to ride her and she unseated each one of them in turn, generally before ten minutes had passed.
When I was eight months pregnant with my son, I walked out to the pasture to see Abbey, and I fell. I didn’t faint, there was no aura, nothing sinister. I just tripped and landed hard on my pregnant belly. They reassured us at the hospital that everything was just fine. Weeks later, our son was born by caesarean section because the fall had pushed him up out of the pelvic girdle and he didn’t drop again. My obstetrician was keenly aware of my seizure history and charted my course through childbirth ever careful to maintain the threshold. Morphine, as it turns out, is my friend.
The headaches though, had gotten more furious through the pregnancy and continued at a ramped up pace. Those had developed another peculiar component: the black holes would start in my vision, and after about half an hour of that, I found it very difficult to talk. Everyone knows what it’s like to not be able to come up with the right word. “Not ‘convoluted’,” you might say, “but something like that.” Except that the words I could not think of were words like bowl. Dog. Car. Face. Baby. Run.
Sometimes I could spell them. Or with great effort, write each one, but it was hard, like dredging something up on a long rusty chain. Then the words would come back, one by one, and then the pain would start, and I would creep away to bed.
At a check-up with the obstetrician I asked if it was okay to continue taking oral contraceptives if I was having migraine headaches.
“Oh sure,” Dr. Peters said. “Many women do.”
“Okay,” I said. “Even when they’re focal migraines?”
“What?! No! Absolutely not. Do you see a neurologist? Let me call the neurologist.” Before I could say “Yes, I have a neurologist” he had reached for the phone on the wall. “Hi, this is Dr. Peters. Is Dr. Prussack in? Yes. Thanks. Herb, hi this is Bill Peters. I have this patient I’d like you to see.”
And so I got dressed, and walked downstairs, right now, to see Dr. Prussack, who was already my neurologist, and never took another birth control pill again.
Herb Prussack was a man built like a fireplug. He had bushy eyebrows and though I never saw him in a fedora hat, I’m sure he wore one. His office was dowdy in the way that every neurologist’s office is, with the exception of framed “Blondie and Dagwood” sketches and comic strips: he had counted cartoonist Chic Young among his patients.
He put me through my neurological paces: close your eyes, stretch out your arms, bring one hand in to touch your nose, and now the other. Walk on your toes, walk on your heels. He patted the examination table. Hop up here. Do you feel this pinprick. Yes? Here? And here? Okay, look at that spot on the wall. He peered into my eyes with his tiny flashlight. Okay, hold your arms out. I’m going to lean on them, don’t let me push your arms down. When he tapped just below the kneecap with his little hammer, my lower leg obediently swung out. First one, then the other.
“So, what did you do to make Dr. Peters so worried?” he asked. “You seem to be fine.”
“I asked about taking oral contraceptives and having focal migraines.”
“Ah,” he nodded. “Well the young wife of one of our colleagues had herself a stroke this week. It’s made everyone a little cautious. But probably you shouldn’t take them if you’re having more problems with migraines.” He wrote me a prescription for Imitrex and scheduled me for the annual MRI.
Turns out, boys and girls, that if your migraines are focal migraines (that is, migraines with aura, migraines with dysphasia, migraines with numbness or other sensory involvement) your chance of stroke is greatly increased. How much the greatly is depends on who you ask, and how much of an alarmist they are. Oral contraceptives make it more so for us. Though birth control pills are sometimes prescribed for women with certain kinds of migraine, for others of us, they are strictly forbidden.
There’s no way to describe an MRI really. I’ve lost count now of how many– more than five, less than a hundred. A few months ago my mother was to have an MRI on her shoulder and I asked her if they had told her what to expect. They had not. Well, it’s an intense and unrelenting noise. It changes through the course of the MRI, but it never goes away. It is remarkably claustrophobic as you lay down on the bed of the MRI machine and they slide you in until you are inside a very small cylinder. You cannot sit up, or turn over, or do the hokey-pokey. I suppose you could lift your head an inch or two, but that would make the technician cross because it will blur the images of the brain. (I understand there is something called an “open” MRI, but that’s not what I’ve been subjected to.) I have squeezed my eyes closed tight for the hour that it takes. I have opened them and willed myself not to panic. Because it seems like you ought to panic, lying there with your head in a metal cylinder. Sometimes they offer Valium, like a canape, before hand. The one in Bozeman has a microphone so that you can tell the technician if you think you’re going to have some kind of psychotic break.
During the last one I had, they wanted to know if I’d like to listen to the radio. Most times I have given myself over completely to the sound of the MRI magnets clacking and banging, their incessant drumming, trying to feel the sound as if it is a color– that’s orange! This sound is acid yellow, this one murky green. Instead of trying to ignore the sound, which frankly is impossible, I have embraced it in all its ugly hues. Radio? But what do you listen to inside the belly of the beast? Nothing that might make you want to get up and dance. And not country, for fear they’d play something maudlin.
“Did you want the radio?”
“Oh, yeah. Sure. How ’bout NPR?” I asked thinking I might get lucky– it was the middle of the afternoon, maybe I could ride this out on Mozart or Chopin. Nope. It was Warren Olney’s “To the Point.” Counter to the hammering of the MRI was Warren Olney’s sensible voice talking and taking and talking about banking regulations and Wall Street.
If the results of my MRIs have changed over the years, no one has told me. There is one glaring abnormality each and every time: a significant stellate scar on my left frontal lobe. If you ask me to show you, I can point to it. I’ve seen it on the films, of course, but somehow I knew anyway. Right here. When the back of my skull hit the pavement when I fell from the back of the terrified horse, that star marks the spot where my brain slammed forward into the back of my forehead. It is a kind of injury called a coup/contrecoup and for some people it is devastating. There are whole legions of personal injury lawyers who’ve built their entire practices on its frightful effects. I got lucky.
Imitrex did well to knock the headaches down, and I tried never to be without it, carrying one tucked away in my little Italian wallet, next to the stash of Chinese fortunes. It worked best if taken at the first hint a migraine. When the headache had set in, it still worked, but it took hours and when it was over, you felt like maybe you’d been through an exorcism.
Once, as I was gathering up stuff in a motel room in Rolla, Missouri the visual disturbance kicked up. I reached for the wallet and . . . there was nothing there. I’d forgotten to replace the last one I took. There were none in my toiletries. I was in Missouri to visit my father, who was dying of cancer. I’d stayed in the motel because he didn’t allow my dog in the house. Now they would be waiting for me to come by their house for breakfast. Thank God I didn’t have to check out, as I’d be at the Best Western another night or two. But time was limited. I bundled the dog into the car and drove to Dad’s house, and explained as cheerfully as I could that no I couldn’t stay for breakfast because I had to go to the hospital to get an Imitrex, because somehow I’d managed to leave home without them.
“Do you want us to come with you?” Dad asked.
“No, no. It’s okay. I’ll probably be back in an hour or two. No point in you having to sit around the waiting room.” I drove myself over there, cracked the windows for the dog, told him to be a good boy and presented myself at the ER check-in. By the time I was called (not being in the throes of a heart attack, or gunshot wound or chainsaw accident) at least an hour had elapsed and I was curled in a fetal position in the corner, eyes squeezed shut, hands over my ears. When a nurse finally came for me, she was herself a migraineur, and she quickly led me to a darkened room– an actual separate room, where she could close the door to make it quiet. She brought me a blanket from the warmer. The doctor came and asked questions and left again. The nurse returned with the white triangular pill, 50 milligrams of Imitrex. After I swallowed it, I felt so heavy and tired. My heart seemed to be jumping around inside my chest, but I didn’t really care, I was just out of it, so tired, so very tired. Curling up on the gurney, I slept. I was aware of the nurse coming in to check on me, but I could not quite pull myself out of the fog.
By the time I’d slept it off, it was dark outside. I found my cardigan, and carefully buttoned it. My shoes were under the chair. I didn’t remember taking them off, but I must have. I pulled the laces tight and tied each set in a double knot. My jacket was hanging on a hook. When I opened the door to the corridor, it was quiet. My headache was gone, but I felt strange, like I was the last person on earth. When a nurse spoke to me, I jumped. Orders had been left that I was free to go when my headache had abated. I signed the forms that advised me to see my regular doctor and walked back to the car where the dog was very glad to see me. I arrived at my father’s house in time for dinner.
The advice is always the same. If you have the worst headache you’ve ever had in your life, go to the hospital. This was certainly the worst headache I’d ever had in my life, but it didn’t feel catastrophic. Still, I was afraid. It didn’t feel like any headache I’d ever had before. I couldn’t take an Imitrex, I was out of them. Herb Prussack had died the year before and I didn’t have the energy to find a new neurologist and go through it all again. Our family doctor sent me for a referral to Great Falls, to see a Japanese neurologist who was supposed to be a specialist in temporal lobe issues. He put me through the neurological song and dance, made me count backwards by sevens and told me a joke I was supposed to remember 15 minutes later. I still remember the joke. “Why don’t they have any ice in Polish restaurants? Because the guy who had the recipe has died.”
But this headache was bad. It seemed to be coming from the back of my skull and wrapping around to somewhere near the top of my left ear. I woke my husband, and told him I thought we’d better go to the hospital. The Young Turks there were quite animated by my predicament. They didn’t want to give me Imitrex, since this was not like my previous migraines. They couldn’t ring up Herb and check, because he was beyond the realm of the telephone. They were Deeply Concerned. Vials of blood were drawn. I was sent for a CT scan, though I argued that it rarely shows anything. There was no one in yet to run the MRI, or they would have. Their Concern finally coalesced into a Plan, and I was sent up the hallway for a lumbar puncture. They threaded the needle into my spine by watching it on a kind of x-ray television screen. “Much better than the old days, when we just had to do it by feel,” one said to another. Ha. It was beautifully clear. No blood in my cerebrospinal fluid, thank you. I knew they wouldn’t find any. I knew it wasn’t a bleed. But I felt like I wanted to cleave the left side of my skull. Finally they gave me a Tylenol #3 and sent me home with an appointment to see the new neurologist in town.
She was very pleasant, and told me that migraines can change their pattern, and that this one was originating in the trigeminal nerve, and would eventually reach around to the front of my face. She wanted to put me through some more tests before she decided how I should manage them. In the meantime, she suggested Motrin to take the edge off the pain. She scheduled me for an MRI, but I didn’t go. I was just too tired and fed up.
At a check-up a few months later, my dentist mentioned that a filling was loose in the upper right molar, and there was wear on the tooth, like I’d been clenching it. That clenching had set up a spasm on that side of my head and the spasms had triggered a migraine in the trigeminal nerve. He fixed the tooth and those strange and horrible headaches stopped. But I still had the other sort to contend with.
There are no more seizures. My neurologist says it is likely that the brain has healed finally. Just that occasional aura, like a ghost passing by.
The migraine headaches are another thing altogether. Since our move to Ohio, they have taken up residence in my left frontal lobe. If I place the palm of my hand over the left side of my forehead, the headache extends to the end of my fingertips. There is a part of me that wants to pull away at the brain there, discard it.
I go through the leftover meds from other minor calamities. Tylenol #3. A ten-year-old bottle of Percocet. Tramadol, which only made it go away for a little while and come back more fiercely. Motrin, by the handsful. Once I made the mistake of taking the store brand Ibuprofen and was knocked over by gastritis. It felt like I was on fire from my belly to my uvula.
Since my husband’s retirement, I have no health insurance. Because I am otherwise healthy, I have no regular family doctor. I pick a Dayton neurologist with good “reviews” and try to make an appointment. They say I have to be referred by my family doctor. I explain my history to the receptionist. She says she will ask the doctor and call me back, but she never does.
I know the weather is behind some of this: barometric pressure is not such an issue at 5000 feet above sea-level. Humidity is low in the mountains. The fertile river valleys of Ohio grow not just grains and flowers but all kinds of pollen and probably every mold spore known to mankind. I start to recognize other things that set me off. The smell of Harbor Freight, for instance. Aspartame. Or cold-cuts from the deli, chock full of preservatives and nitrates to keep them shelf-stable for the temperature changes of moving them in and out of the cooler.
When I sense one coming, I reach for the Motrin. I drink several cups of coffee, I lie down in a darkened room with an aromatic face mask. Sometimes the headache eases off after a day or two. Generally by the third day I can function again. I read that migraines are clinical “oversensitivity” and while I can see that’s true– the sensitivity to light and sound and smell is nearly unbearable, it also makes me laugh. People have accused me of being oversensitive my whole life.
On Memorial Day, I am in the fourth day of a migraine and I am weeping from frustration and fear and pain, and finally (though I know it will cost us a ridiculous amount of money) we go to the hospital. I expect that they will give me an Imitrex, let me sleep for a bit and send me home with orders to see my regular doctor.
That is not what they do. This is the chief trauma hospital in our fair city, and while I am apologizing to the nurse for how difficult it always is to insert an IV rig in my hand, she does so without my even noticing. It’s a complicated cocktail they’ve hooked me to: Toradol, benadryl, compazine. I know from a story I did years ago that Toradol is an anti-psychotic, which makes me a bit concerned. Did they think I was psychotic? No, no, not at all, the doctor reassures me. It’s also an anti-imflammatory, and in combination with the other two– an anti-histamine and an anti-nausea medication is state of the art treatment for prolonged, severe migraine. Well, then. It’s not my favorite way to divest myself from a migraine. It lacks that moment of ease– where you realize that the damn thing is really ending. The particular combination of drugs creates anxiety. I sat up. I lay down. I sat up again. I felt compelled to leave, but did not. I wanted to pace, but tethered to the IV, I could not. It’s a huge amount of IV liquid and after a while I really had to pee. So the nurse came and arranged the tubes so I could wander across the hall, dancing with the IV pole, a quiet little mousey wallflower waltz.
But the headache goes. And it stays gone for a while.
There’s not another one until well into September, and that’s the longest period I’ve been without a headache in several years. The bill is $1700.
In the calm of midwinter I think to call another neurologist, this one a specialist in migraines, a practice of two women just outside of Cincinnati. When I call to make the appointment the receptionist asks who the referring doctor is and my heart sinks. I give her an outline of my situation, and she says “Okay.” Okay? Okay! They don’t need someone who knows a fraction of a percentage of my history to assure them that I need a neurologist! She cautions that they don’t accept health insurance. I laugh ruefully.
“That’s okay, I don’t have health insurance.”
A few days later a packet arrives in the mail. It is 20-plus pages of forms. Circle the medications you have taken, ever, for headache. List the doctors, dentists, acupuncturists, horticulturists and witch-doctors you have seen for the treatment of your headaches. How happy is your marriage? How stressful are your hobbies? What percentage of the time do you wake feeling rested? Describe the headaches you’ve had this month and their frequency. That one stumps me for I have nothing to write there. I leave the page blank but scribble on a post-it note that this is an atypical month.
We drive down through the rain to a very ordinary looking office in a very ordinary office park. They share a vestibule with a driving school. Inside, it’s pleasant., more so than many. We talk for nearly two hours about migraines. She is astounded that I say I wake up feeling rested 80 percent of the time. Most of her patients, she says, report feeling rested 30 percent of the time, 20 percent of the time, never.
“Why do people do that to themselves?” I ask. She shakes her head, a shrug. I’ve learned Dr. Herzog’s lessons well: you have to sleep.
We talk about the cumulative nature of migraines, this is familiar territory to me from managing my own seizure thresholds. She holds her hands horizontally in front of her to explain the threshold concept. “Say your migraine threshold is here,” she moves her hand in front of her neck, “but you eat something that is a trigger for you, your threshold drops to here, and then if there’s a change in the weather, it drops some more, and if you add something else, then you can trigger a migraine.”
I nod, wondering silently if a camel wouldn’t be a better analogy. People understand about the last straw. Your brain will put up with the insult of a and b and c, but add in that one last thing, and you’re down for the count.
She talks about the ways to raise the threshold: vitamins, butterbur, the migraine diet, biofeedback, acupuncture, more sleep, keeping a migraine journal, better choices. She agrees that my case is not severe enough to warrant a full course in biofeedback, but suggests that there are contemplative techniques useful for all migraineurs. Yes, I think, the stillness.
I understand this approach. It’s the way that a someone with asthma runs the Boston Marathon in April. It’s the way twenty-three-year-old artists wean themselves from anti-seizure medication. Why hadn’t I thought of this for migraines? Why did I think there would be one quick fix? No, it needs to be addressed from many fronts. There is something oddly reassuring in this, the familiarity of approach is comforting to me. She writes three long pages of notes as we talk and points out that I didn’t answer the question about what I take for migraines now.
The E.R. physician had sent me home with prescriptions for Fioricet, a very old-fashioned medication for migraine, and Zofran, which is an anti-nausea medicine used for people in chemotherapy. “But I don’t get much nausea with migraine,” I had said. That wasn’t why it was prescribed: something in the receptors in the brain responds to the Zofran and helps knock down the headache. For the amount of money they charge for it, it ought to get up and do a little song and dance too.
There are preventatives, she says but she thinks I am not a good candidate for them. Having been down that road with temporal lobe epilepsy, I agree. She suggests Triptans, and that’s what Imitrex is, but I’m concerned about heart issues. What’s the point of curing your headache if it gives you a heart attack? But apparently I don’t really have those risk factors, so I agree. Of course I agree. I would probably agree to take it if there was a risk of developing a third eye. Those headaches are really bad.
No need for tests at this point, though she’d be interested in seeing the MRI films if I can get them. She hands me samples stuffed in a little shopping bag, it is the glossy pink of nail lacquer and lipstick. Women seem to suffer more from migraines, but men do get them. I wonder if men get their samples in a plain brown lunch bag. There is Relpax and Maxalt and Cambia. Did I still have some Zofran? Yes? Good, take that too. But throw away the Fioricet, it causes rebound headaches. See you in three months, call sooner if you need to.
On the way home, I obediently buy a little notebook, a red Moleskine, to map the geography of my headaches.
My friends want to know everything she said. They want to know because they care about me. But they also want to know because many of them suffer too. We trade advice, everyone looking for the One Sure Thing, everyone hoping that the cure lies in something their doctor forgot to mention, or didn’t know. My friend Donna calls from Connecticut and we compare notes. I wish that there had been something weird and wonderful to serve as a great reveal: “Put toothpaste between your third and fourth toe on your left foot each night before you go to sleep,” or “You’ll never have another migraine if you drink two cups of dandelion wine on the last day of March on alternate years.” Alas, the advice is so normal, it almost defies reporting. I guess I could have made something up.
Yes to sleep, yes to eat, note the triggers, take antihistamines in the spring and fall, meditate, keep a journal, take care of yourself. But the larger gift is this: I feel reassured. The lack of absolutes makes sense to me. I have done this before, I can do it again. And no one is making me give up red wine, chocolate, brie cheese or ciabatta.
And two days later, a tickle. There’s no visual disturbance, no aura, just a whisper. It could be just a regular headache. I am not keen to experiment with the Maxalt or the Relpax yet. I have a look at “Cambia.” It’s powdered non-steroidal anti-imflammatory medication (kind of like Motrin or Aleve) to augment the use of the Triptans, like Maxalt. I’m suppose to dissolve it in a little water and drink it. While I’m looking at the directions, my eye lights on “aspartame.” Aspartame makes me ill. Aspartame has triggered migraines. Dammit.
So I take another handful of Motrin. It depresses me that I am back at this starting point. I get out the little red notebook and start to write. I’d indulged a long nightcap of bourbon, well-watered, the night before. I’d been irritable during the day. My husband was grumpy. I felt a little congested. When I look at the list of things consumed there is no protein to speak of. The Motrin eases it a little. I’d rate this one a three out of ten. Not too awful. We go out for Chinese food, it’s a place we haven’t tried before and it’s not very good. By the time we get home I am in a full-blown ten out of ten migraine. I swallow a Relpax and go immediately to bed. After three hours, my husband awakens me, it’s one in the morning. “How are you doing?” he asks. I shake my head. It still hurts. But when I sit up, it hurts a little less. I pad downstairs in my sock feet. and curl up in a quilt in front of the computer. I did a little research on the effectiveness of Relpax.
You know what? Don’t read about the medications. If you read about the medications, you will be torn. For some people, this works, for some it makes it worse. For some it did nothing. I am frowning as I read, but the headache is easing. I wander into the kitchen and make a little tea, bring it back to my desk. Maybe Relpax doesn’t work when you’re sleeping. Whatever. It’s working now. The headache recedes, just like the tide drawing away. And for now, it’s gone.