Bursting the Migraine Bubble

This last week I had a migraine. I decided to take mental notes as I went through the process of coping with the nasty headache and this strange blog is the end result. I always think it is hard for someone who has never had a migraine to understand  what a big deal it is. Today you can put on my shoes and get an idea of what it is like when my world is suddenly turned upside down by a blinding migraine. Migraine sufferers live in an isolated bubble of pain that is often miss-associated with general headache sufferers. Misunderstanding makes pain worse. It’s time to burst the Migraine Bubble!

4:10 P.M. – I am reading The Maze Runner. I’m only a few chapters from the end. I have strained my eyes in a marathon of reading since I picked up the book only the day before yesterday. I shouldn’t have pushed my eyes so hard but I really like this book. Suddenly the words and letters seem to be bouncing around. I realize I don’t remember anything I read from the last two paragraphs. I squint and blink but it does not help to clear the fogginess and confusion in my eyes. Then I notice a flash of light in the bottom right corner of my eye and with it comes a strange sensation that something is pressing down on my head. It’s not pain, just weight pressing down on my neck from above, like my head just gained fifty pounds.

I look up from the book at my stark wall. Instead of plain white paint I see blotches of gray and black scattering across my bedroom like little spooky dancing shadows. My heart begins to race and I hear ringing in my ears, I am instantly sweating from head to toe. My hands are glistening with the beads of sweat that have risen on them. I know what is coming.

4:13 P.M. – I take a deep breath and try to get up calmly. I am getting a migraine and in spite of having had them since I was a young teenager I am terrified. I never get used to how suddenly they start, how quickly my day and all its plans get ripped away with a single event. I stand up and steady myself with one hand on the wall. My vision is filled with smears of darkness that wobble and bend with every turn of my head. It is like trying to watch television through a screen with a severe glare on it. I can kind of see, but not really, but wait maybe, and no not so much. Because the shadows move, I constantly feel as though I am about to be able to see better, like the shadow will get out of the way, but the reality is my sight will get much worse before it gets better.

4:15 P.M. – I find my way to my purse that is at the bottom of the stairs. I breath calmly and rhythmically as I walk to contain the anxiety that is surging through my body. I reach my purse and unclasp the tiny metal cylinder that holds my migraine medicine in it. I am never without it. By now the shadows have filled up my entire right eye and I am terribly disoriented. Five minutes ago, I could see fine. Now, it is a challenge to see how to open the bottle and count out the five pills I need. I count them out loud to keep my thoughts grounded. “Two white, three blue”. I go to the kitchen and take the pills. My left eye has started filling with shadows around the edges. I keep having the sensation that I am falling, so I steady myself on the counter.  I am left with only a narrow tunnel of vision in the center of one eye. I feel overwhelming claustrophobia as the bouncing darkness closes in on me. Again, breathing calmly, slow and steady. If the anxiety gets out of control and I have a panic attack now it will make the migraine pain that is coming incredibly worse.

I have a fifteen minute window to take the pills.  After that the medicine will reach my blood stream too late to keep the pain controlled. An un-medicated migraine is painful enough to make me truly wish I was dead. I have taken my pills early in this migraine but it will not entirely stop the pain that is coming soon. I tell my boys what is happening and they look at me with sad eyes. They always ask the same thing; ‘Did you get your medicine fast?’. They are relieved that I did. They know to be quiet and leave me alone now, and their willingness to help me is so sweet that it breaks my heart. I kiss their heads and go to my room.

4:20 P.M. – I shut the shades, having to grab at the pull string a few times before I figure out how to catch it with my limited depth perception. I go to the bathroom. I get into bed, and wait.

4:35 P.M. – The pain starts just above my left eyebrow. It is migraine pain, and there is nothing else like it. Since the aura and shadows had started in my right eye I know the pain will be focused on the left side of my head. Doctors don’t know why this happens but it is 100% consistent for me. The pain is always on the opposite side of where the aura begins. Having the pain on the left is a relief to me because migraines on the right side of my head are much worse and always accompanied with vomiting.

4:40 P.M. – The pain on the left side of my head grows and stretches out with needle-like fingers that stab behind my eyes and into the base of my skull. The pain is hot and sharp and makes me feel nauseated. It is the kind of pain that pins me to the bed and I feel trapped. As the pain gets stronger I feel the dark aura in my sight retreating. Instead of dark bouncing shadows, now my eyes feel like they are filling with light. Even the tiny slit of glow that creeps under my door from the hallway seems stunningly bright. The light causes pain even through my eyelids. I cover my head with a thick blanket but I still feel like light is getting in.

4:50 P.M. – As my eyes shift quickly from the crowded darkness to the overwhelming light I am hit with another wave of disorientation. I feel confused. My brain is freaking out because migraines are neurological and cause the brain to fire in weird ways. I have a difficult time lying still. I have a random, overwhelming and almost laughable desire to open and close the refrigerator door repeatedly. I remember back to one of my first migraines where I kept getting out of bed to take the folded socks from my drawer and started stacking them neatly at my foot board. It was very painful to keep getting up and down to retrieve socks but it seemed strangely relieving to me at the time. I did not have enough experience to know I should ignore the impulses my brain was sending. Now, I laugh a little at the memory but then groan and regret the giggle as it sends serious waves of pain through the left side of my temple. I never know if I am fortunate to be someone who can laugh when I am in pain or I am just a real sicko.

4:54 P.M. – I wish I hadn’t laughed. Now I want to cry, but I know if I do, the strain on my eyes will make the pain get worse so I fight off tears and try to relax. I tell myself the same words I have told myself since I was a child whenever I have been in pain. “You won’t feel this tomorrow.” That thought always comforts me. I find peace in the idea that whatever I suffer, once it has passed, that moment must never be lived through again.

5:00 P.M. – My motion sickness medicine begins to kick in and it eases my nausea but even better it makes me sleepy. My anxiety quiets down, my mind slows and I start imagining things. I drift in and out of a gray haze of pain and woozy sleep. Little noises send ripples of pain across my skull and wake me but I am able to fall back to sleep. My sleep is shallow and I am constantly aware of the pain. Hours pass slowly, but much more quickly than they would without the medicine.

9:30 P.M. – The worst of the pain is over after five hours. I lay in bed with the blanket still over my head. The pain has lifted enough that I can think logical thoughts again. I stop thinking about opening and closing the refrigerator door. I begin planning the next few days, rearranging in my mind what I will be able to accomplish. This residual headache will leave me crippled for who knows how long. I will have to cancel plans tomorrow with friends. I dread the next few weeks. My eyes won’t be normal for as much as a month. It will be hard to read, I cringe realizing that I won’t find out how the Maze Runner ends until my eyes clear up. I will have to manage the anxiety as well. The lights and glares of driving, looking out the window, even watching TV are enough to trigger an anxiety attack. Coughing, sneezing, loud noises, all lights, and strong smells will also be anxiety triggers as I recover from the migraine event. I will spend the next month coping with fear of another migraine or a cluster of migraines. Migraines back to back or in clusters are devastating. I lay in bed still and calm, I remember this is not my first rodeo. I have survived before, and I will never have to survive this particular migraine again.

9:45 P.M. – I very very carefully and with absurd slowness, get up from the bed. As soon as I sit up the pain screams in my head and then slowly calms down as I wait for the blood to finish rushing around. I put on my robe and sunglasses and head to the living room.

My little boys see me coming and smile. They think it is funny that I am wearing my sunglasses at night. They smile but they do not laugh. They come over and give me soft hugs and whisper ‘Are you better Mama?’ and ‘Was it a bad one?’ I feel so incredibly grateful to have these children in my life. Grateful for their understanding but also sad that they have had to develop such understanding. I imagine how difficult it would be to have a migraine and not have someone there who understands that this is so much more than a headache. I decide right then to write something about migraines and hope it benefits someone.

Three days later, I put on a big pair of sunglasses and write a blog little by little. I take long breaks when my head starts to hurt from looking at the screen. I read it and re-read it and think, ‘no one will like this’. ‘You will lose all four of your readers!’ I stare at the screen. I hesitate. I doubt. I hope. I take a breath and hit the ‘Publish Blog’ button…..