Chronic Migraine Headaches: An Invisible Illness

I’m in the exam room of my new neurologist. This is the third doctor I’ve seen for my migraines just this year. They pass me around like a strange new toy. They poke and prod and narrow their eyes in confusion, and when they’re at a loss for what to do with me, they send me on down the line.

“What would you rate your pain, on a scale of 1-10?” I hate this question. How do you quantify something, when you have no idea how other people experience it?

How do I tell you that my pain has become a large object, with sharp corners, residing behind my eyes? If I tell you that my pain is not a 7 or 8 today, but that it’s weighing heavily on the part of my brain that knows when and how to smile, will you understand? What if I tell you that yesterday my pain had more edges, more corners, but today it’s weight is damaging relationships.

You say we need to get “a better picture” of what’s going on. I tell you I’m not very photogenic. We go get a CT scan. I don’t mind this one, as it appears I may even get a nap in. A combination of nausea and exhaustion has made me dehydrated. My veins aren’t cooperating and it takes several tries to inject the contrast. One nurse has a habit of chasing the vein around a little after she pokes and misses, and I smile because she smiles, but really I’m imagining poking her back…with my front bumper.

The CT is “unclear”, and you send me for an MRI. Then another. Then another. They make me remove my underwire bra and my bobby pins. Isn’t it strange that when we’re freezing, our veins bury themselves deeply, but our nipples absolutely do not? SEVEN attempts with the needle, and I haven’t even cursed yet. They bring in an EMT who is “gifted” at starting an IV. We all have our gifts, right? Mine? I’m a medical mystery with terrible veins and a great sense of humor. I’m also incredibly intelligent and insanely humble. They try my feet, and I ask if they can suck some fat off my ankles while they’re down there. The EMT gives me a half-smile and says that’s not how it works. They finally find a vein, and I consider tattooing an X over it so we can avoid all of this next time. I don’t say that aloud, as the gifted EMTs (now plural, because he phoned a friend) seem like they’re growing weary of my jokes.

The MRI shows my brain is normal. I’ll agree to disagree. You say you can help me. We have options. Pain is just a message. You touch a hot pan, and the pain sprints up your arm and into your brain, which sends a “SHIT!” back down to your fingertips, allowing you to yank your hand back, suffering only a minor burn. Chronic pain is different. I can’t yank my hand away, but you say we can fool my brain, easy as that.

We try all the magic potions, each one a trade off for side effects that require their own chemical remedies. I nickname the first one, “the divorce drug”. It turns me into a complete monster. We give it two months. It’s a very dark time for my marriage, and I win exactly zero parenting awards. I’m not even nominated. The headaches are worse, which I didn’t know was possible. I wean myself off the divorce drug and try something different.

I spend a night in the hospital, wishing I could be anywhere else. It’s no spa. I rate my pain every hour. The worst pain of my life is still just an 8. As a realist, I know to factor in the potential for future pain, as well as the pain of others. I’ve never been shot or stabbed, so I have to leave room for that.

You have another idea, which comes in the form of six pills a day. We shrink the pain, making it easier to move around, letting it rest in the back of my mind, where the lights are dim and the dust is thick. This magic trick comes with a lot of smoke and mirrors. The fog settles in, and suddenly I don’t know alphabetical order or my anniversary. It floats inside the birthday party planning, the weekend to-do list, and the unchanged loads of laundry. It rests thick between my family and I, threatening the ground I stand on. I throw this potion away. I need to be mom.

I try another. Waves of nausea like roller coasters and first trimesters shackle me to my bathroom. My pain is a glass marble, rolling around bouncing between my temples and the grocery list. I call this Hell a fantastic way to lose weight and my mind. You say we can treat the nausea. I give it a try and sleep for three days. I wake up and toss my lunch and both prescriptions. Months have gone by and we’re getting nowhere. You tell me we aren’t done yet.

You call this new one “nasty”. The bottle says “as needed”. The sharp edges are back and I decide it’s needed. Almost immediately, the pain is soft and weightless. For the first time in weeks, I can think… and think, and think. If only I could sleep. I lay awake for hours, listening to the clock ticking. I replay random social interactions from the last twenty years, shop online, become an amateur Pinterest nutritionist, decide to start exercising, check the deadbolts four times, eat some ice cream, clean a closet, and watch the sun rise. Three nights in a row, and I throw these devil pills away.

I google natural remedies, try yoga for five minutes, meditation for thirty seconds, give up caffeine for a full day, and consider moving to Colorado. The google spits back a suggestion, and I pay an obscene amount of money to freeze my face with thirty-one tiny pricks administered by one big one. For all I know he’s a perfectly nice person, but since I’ve never accomplished any small talk between needles, I’m going to go with prick. I’m no longer discouraged, surprised, or annoyed. At least, that’s what my forehead is telling you. I worked so hard for those laugh lines. The lines are gone, and the pain remains. It’ll take time, you say. We have more options, you promise. I take a nap and brace myself. I guess my pain is a 5 today. It could always be worse.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s