I read quite a few articles about migraines because I live with the blasted things and it’s nice to know I’m not alone. For the same reason, I tend to read the comments on said articles, and I’ve noticed something that disturbs me. There’s a lot of more-miserable-than-thou crap in those comments, with people dismissing and invalidating other people’s symptoms, experiences, and effective treatments. I don’t like this. Don’t we all suffer enough without being cruel to each other?
It’s true that the term “migraine” gets thrown around far too easily, and many people misunderstand that it’s more than just a bad headache. But it’s also true that each person’s migraines are different – hell, the migraine I had last week was different from the one I had the previous weekend.
So, right now, I want to talk to all the migraineurs out there.
Think about when you were first diagnosed, when you were figuring out your triggers. Didn’t you find that some things were triggers for you but not for other people, and vice versa? Some migraineurs swear by caffeine to take the edge off, but for others, caffeine will jumpstart an attack. Some people can’t handle strong smells, others aren’t bothered. Aged cheeses, cured meats, chocolate, wine – they’re all common migraine triggers, but they’re far from universal.
Symptoms vary by individual, too. Not all of us get aura – my sister does, but I don’t. Visual aura runs the gamut from spots or lines to distortion or even partial blindness, or your aura might affect other senses, as in cases of phantom smells. Then there’s light/sound sensitivity, aphasia, allodynia, Alice In Wonderland syndrome, and any number of other unaccountable weird things that can occur during a migraine. Even nausea isn’t a universal symptom. I rarely got nausea with my migraines for the first 15 years, but after that, it became a regular thing, and it’s getting worse with age.
When it comes to treatment, most of us have long lists of ineffective meds we’ve tried. We know what it’s like to try some prescription that everybody swears by, only to get no relief at all. If one more person tells me that sumatriptan will be my magic bullet, I think I’ll scream – that was the first med I was given over 20 years ago and it never did a thing. I mean, really, if the same treatment worked for every person, would we have all the myriad options we do?
And can we PLEASE put an end to the idea of “if you can function at all, it’s not a migraine”? You’ll find this over and over in comment threads and forums, and it annoys me to no end. “If you can look at a screen long enough to post that you have a migraine, you don’t really have a migraine”, “If you can get out of bed without throwing up, it’s not a real migraine”, “If you can drive yourself home from work, you don’t have a migraine”, etc., etc., etc.
This. Is. Crap.
Migraines are debilitating, no doubt, but not always 100%. Chronic migraine (defined as 15 or more headache days per month) forces you to choose between fighting through the pain and giving up your life. Many people simply have to work or have no access to treatment, and so they learn to cope as best they can. Yes, looking at a computer screen hurts, but you can turn down the brightness and wear sunglasses indoors and squint and thereby kind of manage. When you have no choice, sometimes you just do what you have to do, even if that means staying at work while functioning at only about 40%. And if you’re in near-constant pain anyway, you become kind of inured to it and you develop a higher tolerance. For years, I didn’t even notice any headache that wasn’t at least a 4 or 5 on the pain scale, because I spent most of my life at a 7.
Another thing you hear in the migraine world is “If [insert OTC med of your choice here] fixes it, that’s not a migraine”. Here’s what I have to say about that.
I don’t know anyone who lives with migraines who claims to get 100% relief from an OTC pain med, but I know plenty who use OTC meds to regain some functionality until they can get their stronger prescription meds, or to avoid side effects like drowsiness while driving.
When I had no access to treatment, I kept Excedrin Migraine on hand (yes, I know it’s exactly the same as regular Excedrin, but I started buying the migraine labeled stuff and now I keep doing so). It was something, at least, and it was all I could get. Lo and behold, it took the edge off the worst of the pain most of the time and made me able to function. I keep it around now because it really does help some of my headaches, even when they include nausea and light/sound issues, which are normally hallmarks of a migraine. I’m also prone to tension headaches, which can turn into a migraine if left alone. For those, three ibuprofen are more effective at cutting it off before it gets bad. I keep naproxen on hand, too, because I live with more than one chronic pain condition and I need a variety of options based on the pain of the moment.
Also, I had both chronic migraines and chronic daily headaches for a long time. Having both conditions (and no aura) posed a problem: the symptoms were nearly identical. The only way to tell the difference was to try the OTC meds and see if it worked. If the pain lessened by at least half, it was just a headache; if not, it was a migraine and I was in for 72 hours of hell, like clockwork. My migraines have since gone back to being episodic and the daily headaches are mostly gone, but I still use the same process of elimination before resorting to my nausea-inducing narcotics.
Needing bigger and badder treatments is like a badge of honor among migraineurs – as if we have to prove how tough we are by complaining about how untreatable our pain is.
But it’s not a freaking competition!
And nobody who actually lives with migraines wants to be in intractable, disabling pain. We all want a reliable, fast-acting cure that doesn’t take us out of commission for the rest of the day or give us awful side effects. If you’ve ever had a migraine or cluster headache, you know that you’ll try anything, however weird, to stop the pain, and once you find something that works reliably, you will stick to it forever (or until it stops working). Lots of us have entire protocols involving medication, heat or cold, darkness, caffeine and/or salt, etc. While I’m the first to say that if a couple of ibuprofen cures it, that probably wasn’t a migraine, if your go-to is three ibuprofen plus 12 ounces of caffeine and then lying down for an hour with a towel under your neck and an ice pack over your eyes, well…that sounds familiar.
If someone can get relief from that sort of treatment protocol with an OTC med, it doesn’t mean their pain isn’t “bad enough” or isn’t a “real migraine”. It just means they have something easily accessible and inexpensive that works for them.
You are totally allowed to be jealous of that or bitter about the fact that they don’t need a prescription like you do, or they don’t have to pay as much as you do, or that they have found an effective treatment while you’re still searching. Those feelings are valid and you have every right to them and I am right there with you! But don’t lash out at them and say those people don’t have real migraines. Knowing how bad it can be, wouldn’t you be glad for any person who suffers with these things to have found relief?
We can all agree that migraines are evil. They make you wonder what you did to deserve such a curse. Let’s try being kinder to each other and supporting one another, instead of invalidating everyone whose experience isn’t like our own. After all, we’re all just trying to get through the attacks the best we can and hoping to avoid the next one.
Want to compare notes on all the meds you’ve tried, what worked, what didn’t? How about the weirdest symptom or trigger you have? Let’s talk about it, kindly and compassionately!