What I'm saying when I say I have a migraine

I want to talk about migraines. A couple of days ago, after an awesome vacation with dear friends and their hilarious baby, I got a migraine ten minutes into a 45 minute car ride to the airport after that hilarious baby had a little bit of a breakdown. I got out of the car at departures and managed to wait until that baby and his mom went to check in before I broke down and bawled my eyes out. Right there, as my boyfriend watched helplessly, I couldn’t keep it together. And I felt so guilty about it.

I say all this because migraines have cost me thousands of dollars over the past year. And I think that they are much more (painful, confusing, overwhelming, inconsistent, and on and on) than people think they are. And I think they’re a lot less “headache” than people assume.

When I say I get migraines, I am not saying that I get really bad headaches. I will never refer to a migraine as a “migraine headache”. I try to refer to it as an attack, which feels way more accurate than headache, but also doesn’t quite capture how a migraine can sort of sneak up in the background for hours or even days before it fully arrives.

When I say I get migraines, I’m saying that the base of my skull (specifically my post-occipital lobe) is aching, I’m very light sensitive (and maybe wearing sunglasses indoors), I’m scent sensitive (so your pickle with lunch is especially hard to be around), and I’m nauseated.

When I say I’m getting a migraine, I’m saying that every muscle and nerve in my body is sore (seriously, my hair and tongue hurt). I may be especially giddy (real symptom). I may be sweating like a pig (new symptom). I may be dizzy. I may be especially emotional, and you may only be able to distinguish that from regular emotional Ila only by the presence of an ice pack, an eye mask, and a diet coke.

When I ask you to stop whistling, it’s because I feel like I have supersonic dog hearing and your whistle makes me feel like I’m going to puke. Please know that I’m not asking you to stop being happy. I’d be more than amenable to singing, humming, snapping, or dancing.

When I turn off my office light, close my office door, shove in earbuds (usually without sound on the other end), and wear my sunglasses in front of my computer, it’s because I have a migraine. I’m not trying to be anti-social, though I may not be very good at holding a conversation.

When I say I have a migraine, it means that I’m already taking steps at abatement. If I’m at work, that means drinking tons of water and increasing caffeine intake. It means I have taken a prescription migraine pill. I’ve probably also taken some kind of over-the-counter anti-inflammatory. I may have even taken a quick break to find something really cold to drink to force a self-induced brain freeze (best choices for that drink are Diet Coke or iced coffee, btw). I may also find really cheap, greasy, salty food to eat. A migraine is close enough to the feeling of an alcohol hangover, and we all know how good Taco Bell is on an angry stomach.

If I’m at home when I get a migraine, which is rare, I would do all of those things except I’d trade the sunglasses and ear buds for my bed, a cool fan, and an eye mask.

The following day, I can count on having a “migraine hangover” where my senses are still sensitive and I’m terribly exhausted.

When I say I have a migraine, I am saying that I have spent thousands of dollars on specialists and tests and medications and physical therapy and acupuncture. I had a really bad time last summer where I was getting a migraine every day or two (including one attack that lasted ten days and required an injection of anti-inflammatory drugs to chill me out enough to function). Very little is known about migraines, despite their prevalence, and there are only two headache specialists in my amazing city of over half a million people. As a result, treating them is about 20% prevention and 80% treatment. I do everything I can to avoid getting a migraine (sitting up straight to avoid putting pressure on my post-occipital lobe, doing breathing exercises, and avoiding triggers like loud noises), and then I throw all my cures at it when the attack inevitably shows up.

It hasn’t all been for naught, though. When my boyfriend sees me crying on the couch, too exhausted to get myself into bed, and gets frustrated that the doctors didn’t fix this, I’m reminded that getting one or two attacks a month is a huge improvement from not that long ago. Physical therapy helped me fix my posture and given me tools to stretch the nerve at the base of my skull where my attacks usually begin. While I’m not sure the acupuncture needles helped, the sessions gave me the chance to lay down on a full-body heat pad in the dark and focus on being still and calm and practice meditation without any distractions.

The other day when I was trying not to cry along with my friends’ baby, I knew it was an attack caused by the awful posture of a skiing vacation, thin air, and cramming in an SUV next to skis. I could remind myself that a second migraine in a month was not adorable Marty’s fault, and that it probably wasn’t going to be a big deal or a new regular thing.

When I say I have a migraine, I’m asking for patience and understanding. I’m asking for you to give me some space. I’m asking for you to pardon me not jumping at your suggestions to cure me. Please trust that I deeply appreciate you wanting me to feel better, but those efforts would be more appreciated if they come with coffee or a diet coke or permission to leave your gathering early.

Writer’s note: It turns out that it’s really hard to write about migraines while getting them. After a couple of attacks over the last week (and a couple of close calls), I’m finally ready to edit and post. I’ll call this one a win, even if it took me so long to actually publish. Oh, and check out Migraine Buddy for an awesome tracking app and a huge community of people who understand all this. I cannot recommend that more. It's helped me understand my attacks, but best of all, it's given me tools for anticipating and preventing them. Seriously, check it out.