My Migraine Story
As a younger person, migraine was somewhat simpler – neater – more containable (although I didn’t think so then). I always knew when it was coming. It was heralded by a sharp pain to my left eye, lightning strikes in my visual field, nausea and then intense throbbing pain. The vomiting – while painful- brought relief – and signaled that sleep awaited if I could just be patient enough – if I could just ride the waves of pain. There was no medicine that would reliably take care of it, but I knew that if I laid still enough on my back in the middle of my bed in the coldest room possible with ice packs and prayed for sleep as I listened to and felt the constant throbbing, that eventually I would ride the pain into sleep and then awake. I always awoke to a phantom pain of sorts – a hangover if you will – a fear of movement, of sound of smell, of light.
There also always seemed to be fairly predictable predecessors for these migraines, although I didn’t realize it at the time. The most reliable of these was a scent that just be smelling it seemed to stab an ice pick into my eye – not even an unpleasant scent necessarily – just a scent that seemed to carry with it some kind of toxicity for my system. Of course, there were always the ‘weather” migraines. I was more reliable than any meteorologist in predicting the weather – tornado season was a nightmare and I generally knew when the sirens would blow before they even began. There were also the fatigue migraines – when I woke up tired with pressure in my eye that grew until the migraine fully emerged – a time when I could seem to hear and smell everything – no matter how distant.
My migraines generally lasted one to two days and, as I said, when they were over I was exhausted, worn-out, cautious, but ready to move on. They didn’t always come at the “best” times. I will always remember being a Disney world with a good friend and sitting on the curb and just praying for relief of any kind – even to throw up – driven to tears because of the pain but also because of the presumption of migraine to invade this special time and place. Migraine robbed so many special times and places from me from the time I was a ten year old until now as I write this as a 51 year old woman.
However, those migraines now seem almost benevolent having morphed into something which I don’t understand or know how to control – something I can no longer expect relief from – something I no longer know how to predict – something even doctors seem baffled by. It’s a multi-dimensional, ever morphing battle that goes on in my head. It’s so pervasive that there are no longer simple words to explain – one day it emerges one way and the next day it morphs into another form.
Lying in bed listening to my own heartbeat echoing off my temples – off the pillows – louder, louder, LOUDER – no way to get away from it.
A kaleidoscope of grays with ever changing shapes – ones that become even more pronounced and vivid when my eyes are shut – so that there is no way to get away from these visions.
The sound of my ow voice reverberating throughout my head and causing me to shrink away even from myself.
The grappling hook that grabs the orbit of my left eye and won’t let go – digging in tighter and tighter – a claw that I can’t escape as if some evil bird has perched on my head and has rested its claws in my eyes and then sat upon my eyeball itself and with each passing moment squeezes tighter and tighter until the pressure becomes so intense that I am sure my eyeball must be ready to burst or at least to be torn from its socket.
The tenderness of my scalp where my own finger, even my own hair, is like needles penetrating my scalp. A warm shower feeling like shards of glass falling on my head.
The fear of physical movement paralyzes me because it sets the world into motion – a sense of vertigo – of being unstable on my feet, a weird distortion of time and space configuration which makes no sense.
The pain of light moving in a room – shadows, glares, changes in light – which start off a fireworks show in my brain – sometimes in hues of gray – other times with bright reds and yellows – ever changing shapes – sometimes moving ominously and slowly, sometimes blocking my vision as if I am looking at the world through a blurry glass – the sense that I am losing my vision – that I’m actually going blind. But other times, there is an incessant strobe light that won’t stop no matter where I look – twirling and twirling – never still – making me nauseous, dizzy, afraid for my own sanity.
The lights that fill a house and can’t be turned off even at night. The glow of a night light, the glow of a clock, the lights on the alarm pad, the light the comes in from outside street lights – panic because I can’t get away from them as they torture and mock me.
Red eyes, hollow eyes, eyes that burn and ache, eyes that hurt to leave ope and hurt to close. Eyes that tear for no reason. The twitching of my eye – the drooping of my eyelid.
Then there are the smells – ones that may be far away or ones that done even exist – am I hallucinating? The scent of a fragrance that pierces the eye, the inability to escape the smell of cigarette smoke – the hyper alert nose that smells any and every thing – things no one else smells. Congestion and sinus pain even though the CT scan says there is none. The fear of going into a store or another person’s home, of even sitting in church, and being assailed by smells that immediately send me into a downward spiral from which I cannot ascent.
Sash…. The sounds of the world are so loud and grating. My watch mercilessly ticks until I have to bury it under the mattress so I cannot hear it. . . .my dog’s breathing becomes drums which drone on without ceasing nearby. . . High pitch sound that seem to have no etiology, no source and therefore no way to turn them off. The ability to hear through walls – to hear every word of the television, the radio, the people talking even though they can hardly hear themselves.
The sense of having a stroke. Even tough I’ve never experience one, I know it intimately. The numbness of my lips and face; my fingers and hands becoming numb and tingling; a sense of weakness; my face is so hot – it’s on fire. The sense of dissociation – of not quite connecting with the world – of things not quite making sense.
I open my mouth to speak and words fail me – my vocabulary has been stolen or even more disconcerting – it has been twisted and words are now backwards and jumbled. I go to do a task I’ve done a thousand times and cannot remember how to do it – the skills I base my living on seem elusive and I don’t know when I can count on them. The sense that I cannot be understood.
Why am I so clumsy – why can’t I judge distance – I run into things. I drop things – my two hands become ten but none of them work.
At times, there’s the vise the grips around my forehead – around my temples and gradually tightens, squeezing more and more – closer and closer – my temples become cymbals which clang against each other. Who turns the crank – how do I get it to stop.
Other tie, the pain creeps up the back of my neck, seizing the back of my head, coming down over my forehead – like a shroud of Spandex pulled tightly against each nerve and muscle in my whole head. My neck and shoulders seize up with the pain which then send messages to the rest of the head and the rest of my body to hurt even more. It travels down the sides of my face and forms knots at the jaws which recoil from touch – my teeth clench, my jaw aches – surely others can see the visible manifestation of the throbbing I feel all over my head. It’s like a balloon that keeps being blown fuller and fuller – I cringe as I wait for the pop – the explosion – but it never comes – it just toys with me.
And then there’s the constant nausea – the rush of bile to my mouth but the inability to throw up – the delusion that if I eat or drink something – anything – it will chase away the nausea and the pain – the craving for coke, for break, for crackers, for chocolate – surely tees are the things that will rescue me. But they only pretend to be friends and their vile effect on my body just makes everything worse.
The fatigue, the overwhelming exhaustion, the lack of energy, the constant fog. Just keep putting one foot in front of the other. I sit, but not to read or watch TV or talk but just to sit – to try to muster up the energy to get through the next moments of life.
And the emotions – irritability, sadness, the need to cry. I want to just tell everyone and everything to leave me alone – to not ask me questions – to not bother me. But I also want to beg for company, for someone just to sit with me while the war plays out – someone to tether me to hope, someone to make sure that nothing bad really happens; someone to chase the lights and the sounds away; someone who will authoritatively sat it will be okay; someone to proclaim the presence and peace of God in the midst of what seems to be hell.
Another one of the emotions is insecurity – is this real? Am I really feeling this bad? Am I making this up? Am I a hypochondriac? Why can’t I make it go away? Where is my faith? Where is my work ethic? Where is my strength, my character? Is there no help because no one wants to help; is there no help because there is nothing to help; is there no help because it is helpless? Am I dying? Am I crazy? I’m destroying everything that is precious to me.
Lord, hold my hand. I’m shaking like a leaf. You’ve been my king of glory – won’t you be my prince of peace? (Rich Mullins)
People try to understand for the most part but they want it to go away. They wonder how it can be this bad – this disabling. They become a fan club telling me how good I feel, hoping it makes me feel good, but instead it reinforces the question of whether or not I’m sane. Maybe I’m not. After all, I live in a world where my constant companions are things no one else sees – the ice pick, the strobing lights, the fireworks, the lightning, the smell of cigarettes and fire, the vice, the cymbals, the needles, the pain, the invisible obstacles – a world of illusions.
After all, everyone has headaches. You deal with a headache by taking Tylenol or Excedrin Migraine and get on with your life – move on. So why is Cyndi so stuck – why has this emerged as a daily shadow – a ghost presence that lives within me 24/7 – never letting me forget its presence – keeping me from the things I love – family, friends, work, activity, laughter, play, commitment, dependability. Why does it seem to want to rewrite the very essence of who I am?
Can you hear it? The background music to this missive – be dup, be dup, be dup, be dup. Can you see the movement of my temple as it dances to its constant accompaniment?
And yet, I know that if I stop and really listen, I can also hear the promise of hope. There is always hope. I’ve lived my whole life believing in hope, and I can’t stop now. Even when it’s like a feather you try to catch that keeps being moved b the wind – it’s there -it’s real – and it’s been there all along.
So I choose to stop listening to the constant be dup and to listen for the sounds of hope – no it doesn’t come as loudly as the clanging cymbals in my temples, it comes in quietness and I have to open my eyes and my ears and choose to look for it – in the community of others who are experiencing similar things, in the encouragement of friends, in laughter, in the freshness of children and puppies, in the beauty of song and nature. There are so many things for which to hope.
Yes, I hope to manage my migraines but I know that won’t happen overnight and for me it is a long process. But with the help of my friends, family and faith, I am not going to stay focused on the someday when my migraines are under control. I choose to listen for the sounds of hope and contentment in spite of migraines today. . . And tomorrow. . . And the next day. And when I forget to, I trust there will be others around to remind me to do so.