Yesterday I was writing about some recent spectacular nuclear fuckery in the news when my headache flared up. I’ve talked about my headaches before, but let’s delve into the science of what happens when one facial nerve goes all “fuck you mom, you’re not the boss of me.”
Today’s Moment of Science… This headache is getting old.
Do you know what you were doing on March 7th, 2010? For better or worse, unless something life altering happened, you likely don’t remember that it was a Sunday.
I was driving to work (because first rule of the lab: the lab is never closed) and it was like my peripheral vision on my right side shorted out for a few seconds in a jolt of pain. Ever since then I haven’t woken up a single day without a headache screaming in my face.
I’m not gonna torture you too much with the story of how it took nine and a half years to get a proper diagnosis because it’s Friday and you’re probably already some version of not sober. But man, I was diagnosed with everything from migraines to makingitupforattentionitis. I was told “lose weight and cut down on caffeine,” which I tried. But gadzukes, my head still felt like there was a particularly ornery cassowary attempting to roundhouse kick its way out. After I lost weight, more than one doctor told me I looked “so young and healthy,” so they doubted it could be too serious. One neurologist said they thought I’d read about these symptoms on google and refused to treat me for anything other than migraines.
When a doctor who lacked courage finally stumbled dick-first into the right diagnosis years before another doctor would properly diagnose and treat me, he said “it can’t be that though, it’s really rare.” Motherfuc-
So, hemicrania continua (HC).
Hemicrania meaning ‘half your fucking head’ and continua meaning ‘all the goddamn time,’ half your head hurts all the goddamn time. In my case, it’s the left side. It mostly feels like a constant dull ache around the eye socket (and really, that entire side of the head) along with anywhere from dozens to upwards of hundreds of jabs through the eye every day that feel like being stabbed.
Stabbed by an electrified knife.
Stabbed by an electrified knife that’s also on fire.
There are also autonomic symptoms, meaning sometimes my eye droops and tears, my ear aches and my nose will run, all on the left side only. Which isn’t at all a nightmare of constantly thinking “is my headache flaring up or do I smell burnt toast?”
HC is a primary headache disorder, meaning that there’s no known cause. It’s one of several headache disorders like cluster headaches and paroxysmal hemicrania included in a group called the trigeminal autonomic cephalgias. They cause a similar type and intensity of pain, but they last for different amounts of time and some have different treatments. These medications are also used for migraines and include triptans, antidepressants, NSAIDS, and anticonvulsants.
Oh, you thought some of the worst pain known to medical science meant you would be prescribed the fun drugs? The funnest shit you’re getting for this is gabapentin. NyQuil will fuck you up harder than anything that works for these headaches.
A major diagnostic criteria for HC is complete response to a therapeutic dose of indomethacin, a prescription NSAID that causes bleeding ulcers. Because god only sends you what you can handle or some horseshit I ready at Pottery Barn.
The trigeminal nerve headaches present with overlapping symptoms, so it’s not uncommon for HC to be misdiagnosed as one of several other disorders. Only two percent of patients at headache and neurology clinics are diagnosed with HC, and it’s thought to be under-diagnosed.
But other headaches also respond to indomethacin, and it typically takes about eight years from when a patient presents with symptoms until when they’re diagnosed. There’s no set standard for when to bust out the indomethacin test for patients with these symptoms, and that has to change.
Maybe, and hear me out, health care providers should consider an indomethacin test as one of their primary diagnostic tools for these types of headaches.
After twelve years, my headache is managed about as well as it can be. That doesn’t mean it doesn’t suck. I still have bad days and flares, and I still wake up everyday with a headache. But now I know as soon as I get out of bed and take an indocin (with breakfast, goddamn always with food, do not test this), I have a good shot at reclaiming the day. Pain can be tiring, a distraction, a thief of joy. But for now at least, it’s a scream on mute.
This has been your Moment of Science, asking what your longest headache was, and if it was longer than a month, what did it do to you mentally?
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SciBabe, thanks for all that you do. We appreciate you.
Just a thought, have you considered the CEFLY device, which is a trigeminal nerve stimulator?
145 days. I think, also 111 days, and a bunch of 70-90 days ones. Have lost count of the 4-day or less ones, have journals of the last few years and so can populate the information from them and maybe extrapolate a pattern from that too, but probably not. Used to be in the 22 pain days a month range, and is less now, but also on so many meds i forget about them all. I saw the picture on the blog roll(?) and thought it might be something like what it is, hemi for sure and triamgiminal too, continua is a new word. Sucks to have that exist, and therefore that you get to have that experience too. I have been doing this migraine life pattern since 2012, with periodic ones before that and they were nothing like the current ones. Wishing you the best possible.