Migraine is the 3rd most prevalent illness in the world and affects about 28 million women in the U.S. alone. Nearly 1 in 4 households include someone with migraine and 85% of them are women. More than 90% of sufferers are unable to work or function normally during their migraine and is a public health issue with social and economic consequences. The cost of healthcare and lost productivity associated with migraine is estimated to be as high as $36 billion annually and more than 157 million workdays are lost each year in the U.S. due to migraine disease alone.*
The story that follows is a personal account of the migraines I have experienced. Although each person experiences different symptoms, the shame, guilt, pain and anxiety felt is common to us all.
I write this down for a number of reasons, one of which is to have a fairly decent record of what I experience prior to, during and after migraine episodes. I also write this down as my own form of therapy, as if by writing it down I am giving myself permission to have missed yet another of my son’s school plays or games, another few hours with a friend, another bedtime story, another sunny day, another rainy day, another day of simply going out for a walk amidst the world… There are these, and so many more that I consistently miss. By writing this down I give myself permission to cry and to mourn for the lost times, and for the times that will undoubtedly come in the future.
Pre Migraine State
It is a perfectly lovely day and I am enjoying not having a migraine. The sky is brilliant blue the color of forget-me-nots and the sun shines warmly on my skin. I smell the subtle hints of warm roses in the air mixed with the clean, delicious scent of freshly cut grass. Even the sun drenched ground smells earthy and ripe to me. Then I stop… I become acutely aware that my sense of smell is just a little too sensitive right now and my mind reels thinking of what I need to do the rest of the day, and tomorrow, and the next day. What do I need to cancel? What can I miss? What can I postpone or do I need to get covered? I monitor my other senses and make a mental note of how much time I have before the migraine hits. Off in the distance, black clouds are gathering. They are forming a heavy blanket of darkness that will become my migraine. I begin to yawn. Then yawn again. And again. It repeats over and over for almost two hours. Those around me who are unaware of this early telltale sign make comments like, “Am I boring you?” or my favorite, “You should get some more sleep!”. During this period I notice words getting mixed up in the sentences I speak. People look confused at times, but mostly they ignore the improper grammatical errors that saturate our conversation. After the yawning period I know I have about 2 hours to get home and in bed. I notice the sunny sky I really enjoyed not long ago has become blistering shards of razor sharp beams striking my eyes. Even donning a baseball cap and sunglasses does not completely reduce the slicing glare. The smells that before enticed my senses become nauseating, too overwhelming for my stomach to handle. The muscles in my upper back begin to tense. As the tightening moves up into my shoulders and neck, the muscles become vice like grips, hard as rebar and just as unyielding. Two hours. My multi tasking skills in high gear, I accomplish as much as I possibly can within this window of time. I pray as I get close to the end of this two hour window, that I do not begin to experience the tell tale signs of hemiplegia being added to the mix. If all goes well, I will be home in bed, stomach filled with water and a dose of migraine cocktail (a variety of medications prescribed to help manage the pain and other symptoms of migraine), ice pack filled to the brim, with the covers pulled up to my chin in my darkened bedroom like someone who is waiting out a storm. A migraine storm. If I am lucky, that is how it goes.
Then there are the times when I am not so lucky. In those times I cannot stop the threat of hemiplegia creeping into my body. It begins with my tongue. I notice how full it feels and how it seems to have become swollen in my mouth, filling it up and rendering it useless to do anything but aid me in swallowing. I am always confused, or perhaps transfixed at these moments, because I never seem to relate these symptoms with the oncoming paralysis and subsequent migraine. I always face them as if I have never encountered the experience before. It reminds me of what a deer must think as it stares into oncoming headlights on a dark country road, mesmerized by the glare that is approaching. It knows it should run, but it cannot or maybe it thinks it will pass so it just stands still. Confusion ensues. WHAM! It is struck by unimaginable pain and the inability to move. THAT is my migraine…
After the tongue, I begin to feel a gnawing in my left arm and I rub it to make the dull ache go away. I generally notice that I cannot feel parts of my face, and though I know I am touching it, I can only imagine how it must feel. Slowly the numbness creeps down my left arm into my hand and fingers. As I sense the numbness there, I also notice how it is flowing down my left leg, into my foot and toes. It feels a bit like water streaming down my body: cool with a little bit of tingling just ahead of the wave. Once it has hit my toes I look at a clock. I have roughly an hour to wait and do nothing except think… and wipe the drool that comes out of the corner of my mouth that is numb. Think and drool, and try my best to concentrate on anything other than the pain. I practice gratitude thoughts, that I am not always this way. I try and imagine the lives of those who are not as fortunate as me.
During my last episode with hemiplegia, I passed the time thinking of what other paralyzed people are going through. Are they as conscious and aware as I am? Although my thoughts are confusing, commingled with pain, I try and focus. Those with strokes, are they fully aware? Can they, like me, hear the world shuffling around them but unable to move and be acknowledged? Do they feel the intense pain and the explosion in their head partnered by the numbness in their body? Generally I also say a little prayer of thanks for getting these symptoms while I am safely at home. But that is not always the case. These are the ones I fear getting out in public. Though it has happened. The shame and embarrassment I have felt goes far beyond what anyone should feel. This is what it must be like for someone who is paralyzed all the time, someone who does not have the voice that I do nor the luxury of going into and out of these states of consciousness and bodily control.
Here is what happened one day when I was not at home. I lay propped up in the back of a room not long ago, half my body lifeless and limp, the other half restrained but almost useless while I waited for time to pass. My head felt like a twisted rubber hose on the brink of bursting. I was happy I took my migraine cocktail when I did! It helped to alleviate the excruciating pain I normally go through when half of my body goes numb. I had on my baseball cap and sunglasses as my migraine was very intense. Some people stood outside the room looking in through the glass pane on the door. The room was empty and dark except for filtered light streaming in from behind the shaded windows, the tables, chairs, and of course, me — slumped over in the corner. I hear a girl say “Hey look! Do you think that person is alright? She looks passed out or dead!! Hey look!!”. I hear chattering about how maybe I am dead and maybe someone should go in and check on me. Not wanting to make a scene, I raise my right arm and give a “thumbs up” indicating I am OK. They see it and begin to laugh, “She can hear us! Look that person looks dead but she can hear us talking! She looks reallycreepy… I would not want to go near her”, and on and on… I begin sobbing uncontrollably, feeling a mixture of shame and pity for my current condition. I am thankful though, that no one else is here. I do not want to explain what I am going through to anyone, nor do I want anyone to see me in this condition.
One time I looked at my face in the mirror as I went through this stage. It was so odd for me to see half my face looking so peaceful, relaxed and beautiful, while the other half of my face looked ravaged by pain and fear. It was scary, and yet something I try to focus on now when it happens. I try and focus on the right half of my face, and attempt for it to become as relaxed as the other side. If only for awhile.
During the migraine phase I am able to accomplish only the simplest of tasks, and this is usually judged by whether someone will die if it does not get done. My son is very responsive when I have a migraine and we generally head to bed early on those nights. I let him read for awhile in his bed before he shuts off his light, and try not to think about how another moment is passing us by for the chance to share a bedtime story. He is growing up so fast, and these sacred moments of time are a blissful experience of parenthood. Another missed opportunity for me to make a memory for both of us. I am across the hall from his room and even though I am burrowed under my covers, I am scarcely asleep. I hear every sound with heightened senses, and wait out the pain of the migraine as best I can. I monitor when he turns his lamp off and once it is, I focus on relaxing as much as possible in order to tame my migraine, until it finally succumbs to the cocktail flowing through my veins allowing sweet slumber to finally overcome me. This takes hours at times, and I lay awake wishing how I could get it over with sooner. I wonder what will happen if this migraine does not end the way all the others have? What if this time I do not fully regain all my faculties? What if this time my memory does not completely come back? What if this time something happens and I actually die? Then darkness falls across the scenery in my mind, and I see nothing but black. Ebony clouds, heavily laden with pressure seem to blanket the space inside my skull. The migraine storm has set in and I must lie in wait for the passing of the squall. I realize I do not really care what happens next because anything is better than this torture, the pain, the pressure. Once I think I cannot stand it anymore, I begin feeling the numbing of the medication finally winning the war against the migraine. I am past the peak and know I am moving through a tunnel in the storm, slowly being transported by gentle winds of medicated compassion.
When I awake the next day, or night, or two days from when I fell asleep, I am sore and tired. My thinking is murky like a ship sailing out of a fog bank at sea. It is all I can do to get my son off to school, or place that phone call to a friend to say I am okay and through the worst. As the day goes by, I sleepily move from prone to an upright position. I may sit on the couch or just lay in bed. I am waiting… waiting for time to pass and for my body to arouse from the anesthetic that was both the migraine cocktail and the migraine itself. My thinking is hazy and I am in no mood to do a whole lot other than what is absolutely necessary. As time goes by, I become more and more myself. When my head begins to clear I know I am almost there. One more good night of sleep and I will be back to me, I remind myself. One more night of sleep and I will be able to interact with the world until the next migraine storm approaches…
Teresa Lodato, CPCC is a Conscious Leadership & Relationship Coach and the founder of Becoming Aware™ Coaching.
As a former stressed-out financial services executive with over 20 years delighting clients, Teresa now guides individuals to unleash their sixth sense to level-up their professional and personal relationships while reducing stress. Her clients learn to effortlessly create inspired and motivated relationships that drive results while creating a stable, meaningful work/life integration. Teresa is an author and speaker in addition to being a highly sought-after coach for forward-thinking individuals and organizations. For more information or to learn about the work I do, please visit: www.teresalodato.com
*Statistics from the Migraine Research Foundation