Open letter to those who don’t have migraine

Migraine. I have come to loathe the word. Almost as much as I loathe what it does to me and as much as I loathe what having the condition has wrought on my life.

If you have migraine, you know what I mean. If you have not experienced migraine, you likely do not have a clear understanding of all it entails.

Here is the first thing to understand: Migraine does not equal headache.


Although crushing pain is the hallmark of my particular brand of migraine, it isn’t the only thing. Let me paint a window into my migrainous world:

A day or two before I get a full-on attack, the warning signals begin to appear:
• my vision gets blurry
• my ability to focus starts to falter
• any smell seems 10x stronger than it actually is
• waves of nausea hit randomly at any time of the day or night

Then the day before or just before the pain begins, the next batch of fun starts:
• any sound seems like it’s being blasted through an amplifier at AC/DC concert
• light feels like shards of glass penetrating my eyeballs
• my frontal lobe feels like it’s been replaced by thick mud
• my neck is so stiff it feels like it could break with the slightest touch

And then the full-on attack descends. By this time, I’ve already taken medication that is supposed to “abort” the migraine. But that rarely happens. I am, however, still fortunate enough that it lessens the impacts. What happens is still debilitating. Here is my attempt to describe the pain:

First, light the surface of your brain on fire. Then, surround your brain with barbed wire. Now, put your head into a large vise and have someone tighten it until it feels as though your head will crack. And then, just for good measure, have a friend drive a large curved spike through the top right side of your skull, and have them keep hammering until the spike emerges from your right eyeball.

Oh, yeah, it’s a rare kind of fun.

As I mentioned, I’m one of the more fortunate people whom the “abortive” medications help. So, eventually, the pain levels get turned down to more of a flicker of flame, less pointy barbed wire, less pressure and only insistent throbbing to remind me where that spike is located.

But that is just the pain component. I still have to try to manage the other aspects of migraine: my vision is blurry, my eyes are sensitive to light, my ears to sound, my nose to smells. My brain is such mush that it’s exhausting to focus on anything – conversations, reading, grocery-shopping, anything.

Knowing that I am the no-fun girl when I’m in the throes of migraine, I’ve bowed out of meeting up with friends and family. I’ve tried to explain why, but oftentimes, I get the sense that friends and family think I’m just making excuses. It couldn’t be that bad, could it? (Fellow migraine sufferers, you’d recognize the unspoken it’s-just-a-headache-take-some-ibuprofen-and-get-on-with-it approach.)

Over time, as the migraines have become more frequent and more debilitating, I hear less and less from my friends and family. My boyfriend also seems to have given up.

I ask myself why? I think that the people I know are fairly enlightened compassionate individuals. They took the Ice Bucket Challenge; they take part in the Ride to Conquer Cancer; they grow facial hair for Movember, they support causes such as Alzheimer’s research, diabetes awareness and Crohn’s disease. So, why do they seemingly check out when it comes to supporting a loved one who is flattened regularly by migraine?

My hope is that it is a lack of understanding.

I will do what I can to improve their lack of understanding. But I also know that there is much stigma when it comes to migraine. (Good article on this at HuffPo http://huff.to/lfvcST)

At the moment – day two of a migraine attack – it all seems rather daunting to deal with. But, one thing I have learned from migraine is the ability to soldier on, manage what I can and try to move forward, if only by inches.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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