Did you know the tooth fairy has a sadistic cousin called the migraine fairy? Her wings are scaly instead of glittery and she wears spiked combat boots instead of slippers. The tooth fairy visits everyone in their youth so we’re all familiar with her. The migraine fairy is more selective in her clientele, and no one really knows why she picks her victims. For the good of fairy investigations everywhere, here below is a letter describing one person’s encounters with the migraine fairy. Additionally, it may also serve to explain to those who do not have migraines what the experience is like.
There’s this sensation at first that something is vaguely wrong. Almost like the creepy feeling of someone watching you: hairs standing up on the back of your neck, a prickling between your shoulder blades, a vague sense of unease. As strange as the sensation is, I’m actually grateful for it: I like to imagine it as a friendly ghost, hovering just above and behind my shoulder telling me that a timer has been set and I have until it goes off to get somewhere safe before a lightning storm starts in my brain. The scientific name for this stage is ‘Prodrome’ which sounds to me more like a futuristic military weapon than the first stage of a migraine. Although, on second thought, maybe that’s accurate too: “Prodrome launched! Prepare for impact! Battle stations! Battle stations!”
<<Editors Note: It is likely that the ‘ghost sensation’ is caused by the proximity of the migraine fairy. She can be tricksy and is known to cloak herself with illusion, making her incredibly hard to spot>>
Depending on the sensation, I know I’ve got between 1 and 3 hours to stop the migraine or get home. If the ghost is sort of vague and wispy, I’ve got 3 hours and a possibility that I can stop the migraine. If the ghost is more solid and sort of urgent, I’ve got an hour and I’m not going to prevent the migraine, I’m just going to manage the pain.
The ghost analogy may sound a little odd if it’s a sensation you’ve never experienced, so I’ll tell you that science isn’t entirely sure what’s going on in the brain during migraines. Since your brain is how you interpret all the world, when something interferes with it even a little, you get, well… bad data. And you try and use it, because it’s all you’ve got. Think of it like being on a runaway train just outside your home town. You can control how fast you’re going by adding or removing fuel, but you’re on rails, so you can’t control where you’re going. You’ve been on the route a thousand times before, so you watch the shapes whizzing by outside the window to get a sense of where you are. Maybe the green blur that you just passed was a water tower, or a group of trees, but either way, you know you’re about 5 miles from town. The ghost sensation is a just like that: a sensation you’ve experienced enough times to be able to guess how far from the migraine you are.
When I was a kid, my prodromes came with auras. They appeared before there was any pain and made everything glow in a fantastic surreal fashion. I could watch a person move and they’d leave a colorful wake of colors behind them. It made the world look magical for a little while before the pain set in. No, I couldn’t tell anything about a person from their aura: The colors were all related to what people wore. The brighter the color they wore, the bigger the aura around them was. And knowing that didn’t interfere at all with childhood fantasies of being psychic, or a sorceress or anything else while I briefly saw magical colors. Sometime in my 20s, the auras faded away and were replaced by the ghost sensation.
The friendly ghost over my shoulder is sometimes the second warning I get. Every once in a while, the night before a migraine, I’ll find myself compulsively cleaning the house. I feel great, nothing in the world is wrong, it’s just really, really important that all the dishes and laundry are done and none of the detritus of a busy life is on the floor. Don’t get me wrong, I like a tidy house, but I’m no Martha Stewart and I always have better things to do than the dishes and laundry. Shoes get scattered on the floor, books are left in piles and the laundry basket sometimes overflows while we try to get the most out of any day. Half way through one of these compulsive cleaning jags I’ll realize what’s going on and do what I can to prevent a migraine. I don’t have any science for why this almost OCD episode happens, just a guess. Something, somewhere in my brain knows that a migraine has been triggered and that I’ll be visited by the migraine fairy’s combat boots before I wake up in the morning. So, I’d better do what I can to make my future sick room safe and comfortable while I still can. For me, that means nothing in the house is out of place and in particular, there’s nothing unnecessarily on the floor to trip on.
Why is tripping a concern you ask? Excellent question. Just about everyone knows that migraines come with a pounding pain around your brain. What most people don’t realize is that the pain is only one jagged piece of the whole messed up migraine puzzle. There’s a whole bizarre raft of symptoms that can come with migraines: blood shot eyes, shaking limbs, difficulty breathing, nausea, photophobia, it’s a long and terrifyingly varied list. And to make it really adventurous, every person gets their own special set of effects. No two people react exactly the same to migraines. So we all get to learn our particular set of circumstances and no one can tell us what they’re going to be ahead of time.
Photophobia is one of my migraine gifts: it literally means fear of light, but it’s less fear and more agonizing pain. Even small amounts of light feel like knives being jabbed into your eyeballs. Fun, right? So to avoid that, I walk around the house with all the curtains drawn, the lights turned off, sunglasses and a ball cap on. To complete my outfit, I’m in whatever felt soft and warm when I was getting dressed: sweat pants, pajamas, my husband’s’ sweatshirts, mismatched socks. You get the idea: colors and shapes are totally irrelevant. As an added bonus, I’m white as a sheet for the duration of any migraine. It’s really sexy if you’re into vampire zombies. I’ve answered the door that way and scared the bejeezus out of petition canvassers. Tragically, the LDS guys in their crisp suits and earnest smiles have never come by when I’m dressed in this fabulous style. Occasionally, to amuse myself, I’ll moan ‘Braaaaaains’ and attempt to bite my husbands head. Because humor is really important when you have a migraine, but actually laughing could make your head explode.
Another fantabulous symptom is a general shakiness and weakness. A typical spoon goes from a negligible weight to at least 5 pounds during a migraine. Everything feels like it weighs far more than it actually does and the effort to move anything is almost overwhelming. Just walking up a flight of stairs at home leaves me panting for breath and physically exhausted. The day before, I might have run down 6 flights of stairs at work humming the Mission: Impossible theme without changing my heart rate.
With my adapted vampire light control kit on and extra special shakiness, you can see why it’s so easy to trip. I move very slowly around the house more or less by Braille. If anything is out of place, I’ll find it with my toes and take a head first tumble into the kingdom of Everythingsucksmorenowvania.
The base layer of the migraine cake is the pain. Not just the stabbing sensation that feels like knives going through your brain. Any kind of pressure anywhere on my body hurts – being hugged no matter how gently is incredibly painful. Which is crap, because when you’re sick, you want hugs and people concerned about you want to hug you. And it’s awful.
The filling in the migraine cake is a layer of nausea that makes everything except crackers and cheese sound revolting and impossibly hard to eat. Since crackers and cheese are both migraine triggers for me, that circumstance led to an unfortunate several months of triggering a new migraine before the previous one had even ended. Now I choke down a piece of lunch meat while my brain perversely screams that I’m going to immediately throw it up. 10 minutes later, not only have I not thrown up, the nausea is pretty much gone for a few hours: If it comes back, I repeat the experience. I’d love to know what the chemistry is for this ludicrous effect, but I haven’t found any explanations for it yet.
During the very worst migraines, I get a layer of icing on the cake that my husband finds particularly disturbing to watch: I get dumb as a brick. If I wasn’t dumb as brick during the episodes, I’d be disturbed too. I lose the ability to think through something simple like: “I’m hungry, there’s food in the kitchen, I’ll get some food”. I know all of those things, I am capable of walking, but it doesn’t occur to me to get up. And it applies to everything while it’s happening. Anything more complicated than a yes/no question is just baffling. And really, sometimes that’s too complicated. To be clear, this is not the same as pain making it hard to concentrate and answer a question. This is more like someone walked up to a section of my brain, closed the doors and hung up an ‘Out to Lunch’ sign before walking away. For me, ‘Flowers for Algernon’ isn’t an academic exercise from High School. It’s a terror in the back of my head every time I start a migraine.
Now that the cake is assembled, we’re at the hideous waiting part of the migraine and sleep is only sort of on the menu as an option. I set up the adult version of the sick nest we all had as kids, because once I lay down and the pain ebbs, a burglary couldn’t convince me to move and start the pain up again. Take whatever you want, just don’t make me move and close the door on your way out. The necessary supplies are a bottle of water, a plate of bite size snacks, a giant pile of pillows and some blankets. The pillows are really a placebo, I always feel like if I can adjust the pillows into the perfect position and get comfortable enough, then the pain will stop. It doesn’t work, and I know that, but it makes me feel like there’s something under my control in the moment. Now, it’s time for distractions. No one understands me like my iPod about now. It makes noises I can control, doesn’t make light, tells me funny things or sings me to sleep and it never gets tired of distracting me. Even the best husband in the world will eventually have to stop reading out loud to you so he can do trivial things like eat or sleep.
Every hour or two, I’ll slowly sit up and look suspiciously around for the migraine fairy. If she’s still around, she’ll sneak behind me and kick me in the head with her giant combat boot when I get too close to standing up. If I’ve out waited her, she’ll have gone to do terrible things to someone else and left me alone. So I’ll stumble up and see how much she roughed me up before she left. On a mild one, I’ll be a little tired for a couple of hours. After a bad one, I’ll spend an entire day feeling like I just got over the flu – tired, achy and wanting real sleep.
The day after I recover fully, I will try to do everything, all at once: because I am so deeply grateful for simple things like being able to take a step without pain or count past 3. Really. The lack of pain is like a miracle that first day afterwards: It borders on euphoria and everything is beautiful.
<<Editors Note: Considerations for future investigation: Is it possible that the migraine fairy’s’ job is to ensure that moments without pain are valued? Does her intervention cause pain free times to be valued more highly after her presence has been removed? Experiments to prove or disprove this hypothesis may be problematic>>