It's 12:29 PM. I just got up. No, I wasn't up late last night and no I am not depressed.
I felt a slight "tinge" yesterday while in the car going to the doctor for a TB shot to update my vaccination. There it was again around dinner time. Again before bed. I should have known better.
Not all the hints and feints are precursors of the real thing. You don't want to waste your medicine, which taken in time, can be quite effective.
I didn't take it in time.
I know people who suffer from claustrophobia, or anxiety with a claustrophobia component. They tend often to be thinking, "Now how do I get out of this place if I need to." Even the prospect of being stuck with no escape creates anxiety. It's a little bit like that with migraine. You're always thinking, 'What will I do if one hits? Is there a place to go? How far am I from a dark room and a bed , or a tent, or some private place to be horizontal?" Ah, a tinge of nausea, a small little throb behind the eye - "is it going to be a migraine? Should I take medicine?" This is the migraine life .
Mine woke me up around 5:30 this morning. I am not sure if it was the nausea or the pain. The race to wrest control my brain had gotten started in earnest while I slept, while I was not paying attention. The bad guys had won.
As I write I wonder: is this too private? Should I say anything? If it were you, would you? When such a thing so impacts your life and renders whole days useless and sends you alone into a world so dark and unbearable, would you talk about it? I blog about other things. Is this off limits? Is it too trivial compared to the truly terrible human suffering in the world?
I don't know the answer.
It is hard to describe acute severe migraine. I liken it to a cloud of darkness descending, and oh what a painful darkness! You want to cry, or cry out, but it doesn't help. You lie totally still. Or you writhe. You cover your eyes from light and your ears from sound and your nose from smells. You wrap yourself into a cocoon alone and try to remember that this darkness will in time pass. You pray. Inwardly you are screaming. You feel like "The Scream" looks, but the hell isn't the sorrow of the world it's the dark throbbing in your own head.
Dark and bleak and and horrific as it is inside the cocoon, it's better inside than outside. The few yards to the bathroom seem like a WWI no man's land. Bad things are out there, things you don't want to write about. You crawl, you run, you walk very very slowly - choose your method. You get there just in time.
Nausea is terrible in the best of circumstances. I hate it. I used to get sick every year at the state fair after rides that went in circles. I always thought "it won't happen THIS time," and it always did. No nausea is fun. I've never had morning sickness. I hear it is particularly terrible.
You make it to the bathroom. Sometimes as if to play a joke, the nausea abates. Just sometimes.
Usually it's all you can do to get the lid open. Once it starts you have no control. The muscles in the abdomen squeeze like a boa constrictor. Masses of air shoot through your vocal chords. You make noises to make anyone think you're dying or worse. You hope the windows are closed. The heaves roll one after another like waves. Two, five ten, twenty, you never know.
There are no satisfying chunks of anything because the stomach is empty. Just acid and slime and sometimes a little blood. You look in the bowl and thing, "Damn, all that work for nothing." Well, I look, and I think that anyway, even after thirty years of knowing better.
There are no words to describe what is happening inside your head during this time. You worry. Migraine sufferers are more likely to have stroke, and the pressure during a round of nausea is immense. It's kind of like when you keep you mouth closed and exert all the energy you can muster to blow air out, and your face gets all red and swollen looking. It's sort of like that, like an explosion in your head - with grapeshot added for good luck.
After it's over, the pain subsides, the breathing slows down, and you lie down on the bathroom floor. A short lived peace comes over you. It does not last long but you'll take it. Your throat feels like you swallowed a bottle of HCl, well, because you did, sort of. There will be more. Sometimes I go to the kitchen to drink milk to counter the acid, and to make the next round a little easier on the throat.
It creeps back swiftly. "Swiftly" and "creeps" don't seem to go together. I think of Gollum.
By this time drugs are useless. The triptan medicines are vastly more effective when the migraine is caught early. But I take a Maxalt melt anyway. I would take anything within reach, legal, illegal, good for me, bad for me. The typical migraine answer to "Can I bring you anything" is "Yes, a loaded gun." It's a joke. Kind of.
Back and forth - every 45 minutes to an hour - the same thing again and again. You never know if you've just been through the last round or not. At some point you're so exhausted you fall asleep, and the nausea does not return. You've still got the headache to deal with, but it starts to abate. With the sleep comes some relief. You wake up. The black mist has crawled out of your brain to come back another day.
Three five, eight, eleven hours of your life gone. But you're alive. And until the next one hits you feel perfectly normal. Well, I do. Some people have these things for days. I don't know how they do it.
Migraine brains are hyper sensitive. By that I don't mean in the way that a person is "sensitive" as in easily offended. Migraine brains are sensitive in that they do not respond well to biochemical changes. These changes may be brought about by changes in barometric pressure, certain smells, changes in sleep or eating pattern (too much or too little), bright lights, loud noises, hitting your head, too much exercise, or certain foods like chocolate or red wine. It could be one of a thousand things. Nobody knows why or how such a diverse array of "triggers" can cause the same symptoms of expanding (and contracting) blood vessels in the brain, which then bear upon nerves the way they do.
The reason I bother writing this is to help you love and understand the people in your life who suffer from this debilitating illness. Take it seriously. They're not faking, exaggerating, or lazy. And they don't have the words for how they feel. It's usually worse than they describe.
I started writing this today because I had a TB shot yesterday and when my six hours of hell ended I was curious about whether TB shots have migraine as side effects. They don't. But in the process of looking it up I stumbled across a web site devoted to the subject of migraine, and which had had a
migraine poetry contest. Some of them are really quite good. Poetry has a superior way of speaking as compared to prosaic stuff like I write. Read a few of the poems. And if you have a loved one who suffers from migraine share it with them - ask them if that's what it's like. they will probably say yes.
I liked this one:
Mystery of Misery
by Betsy Blondin
after all these painful seconds, minutes, hours, days
of desperately searching to discover your secret
all these weeks, months, years
of steadfastly seeking the key to you
to open you wide for me to understand, for all to see
your hideousness, unbearable pain, sickness and grief
that drive me to darkness
all the minutes, hours, and days of my life
you have stolen, for nothing
while I tried to pierce your heart with needles
destroy your soul with potions and pills
follow the firing neurons, blood vessels, chemical stew
that create you
I stop struggling, experimenting, hating
and instead surrender, accept, live around you the best I can
do what I can when I can
until you attack again with fresh fury, leave a new clue
or I read of more brain science, studies, promising treatments
and wearily, grudgingly, resentfully reach for my sleuthing tools
to begin again my Sisyphean challenge
of solving you
my mystery of misery
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