In the midst of a migraine, taking medication needs to be as easy as possible
This weekend, I had the worst migraine I’ve had since November. It was a real nightmare; the type that had me crying and anxious, as well as in excruciating pain on one side of my head and neck. I was very close to throwing up, clutching a dirty wastebasket on an uncomfortable bed in an Airbnb in Encinitas, where we were staying for a family occasion. I kept thinking of Mum, who died exactly a year ago as I type this, almost to the minute, and how she would look after me when I had migraines as a child. I’ve always thought there’s a sort of spiritual element to really severe migraines, or at least some brain chemical interaction that replicates spirituality; certainly there’s some mental thing going on beyond pain that makes you feel trapped in a sort of eternal prison, like you’ve always had a migraine and you’ll always have one. This is part of what migraine sufferers mean when we say it’s not just pain, not to minimize how bad pain is. You pass into another realm, where misery mediates every sensory experience.
To summarize, this was a Really Bad One. I categorize my migraines in various ways that are never really adequate, and are probably incomprehensible to other people, but mostly I define the migraine by what type of medicine I end up taking. Maybe this doesn’t make sense—how I’m feeling determines which drug I pick in the first place, so why define it by something that happens down the line?—but I think it’s the clearest way of helping me and others understand how severe it is, which is something I worry about more than I probably should.
A headache that I take ibuprofen or acetaminophen for is plausibly still ‘just a headache’ and not a migraine (a distinction I mostly hate); a headache that I try to treat with Nurtec is one I think is a migraine but isn’t too severe yet. Nurtec has no side effects and is free, thanks to a copay program, so I can be pretty liberal with taking it even for mild migraines. Thanks to the massive reduction in the number of migraines I’m getting, my medication regimen is much simpler than it used to be. In the past, I’ve used rizatriptan and naratriptan as rescues for milder migraines, or ones that I catch early. For more than a decade, my rescue for the Really Bad migraines was the zolmitriptan nasal spray, though I also had tablets for that for milder migraines; the nasal spray is a better method of delivery for when you’re already nauseous, though it often ended up running down the back of my throat, which tasted awful. (I am pretty sure that when you have a migraine, your stomach just pauses operations for a while, so taking oral meds is a bit pointless.)
Zomig stopped working well for me, so I replaced that with Migranal. This is an old migraine drug, a nasal spray that sucks and is very expensive (almost no one takes it, so the people who do take it are desperate enough to pay, I guess). I actually took a generic form, dihydroergotamine mesylate, and my insurance was still paying roughly $2000 a month for it.
One of the things that made DHE suck so much was that the nasal spray mechanism was awful. It came in a little bottle, to which you would attach a plastic spray device. The little bottle had a metal and plastic cap that you had to rip off in exactly the right way, pulling your thumb in the correct direction with just the right amount of force. If you fucked this up, the metal bit would stay put, and you—in horrific pain from a migraine, possibly crying, certainly weak—would have to peel the metal off before you could pull the plastic stopper out. At least once I cut my thumb pretty badly on this metal, and had to rummage, bleeding, through my medicine box for a band-aid while every movement and breath made my head pound harder. Worse still, the spraying mechanism itself was just not good. You had to do one spray in each nostril, then wait fifteen minutes and do it again; waiting fifteen minutes before I could lie down and go to sleep was itself interminable. I would often miss the small hole in my nasal cavity that I was aiming for, and the liquid would dribble right back out of my nose. Even when it did seem to all go in, or I snorted it back up, or even tried rubbing it in my gums like a desperate addict, it didn’t always work well. I sometimes felt like I had just snorted water.
I brought this up, sheepishly, to my neurology nurse practitioner, in self-critical terms: “Sorry, Laura, but I’m just sooo stupid that I can’t even do the nasal spray right.” But actually, I was not just being sooo stupid: She said the Migranal nasal spray is notoriously shit, and I was probably finding the drug (and Zomig before it) not very effective because I wasn’t getting most of it. This is not just because I have big clumsy dumb hands: A recent review of DHE in the journal Headache noted that DHE medications’ “low bioavailability and high variability that limits its efficacy.” Specifically, if you’re interested, the spray delivers to the lower nasal cavity, which has a “thick, ciliated pseudostratified columnar epithelium along with a mucus layer,” leading to the poor results. Worse, “the cloud‐like plume of the liquid spray in the lower nasal cavity can lead to drug loss as it runs out onto the upper lip or down the back of the nasopharynx.” Yeah dude! The plume is bad, not me! It’s not getting through my frickin’ columnar epithelium, like I said all along!
It was then that Laura suggested I try sumatriptan injections instead. I had asked a neurologist about injectable meds years before, and was told those were mostly for people who got one really bad migraine every few months. This is not correct, it turns out. I had been suffering through poorly-delivered sprays dribbling down my face for no reason, for years. Haha, oh well!
The sumatriptan injections, which come in a prefilled autoinjector pen, work much better. This makes sense, since the whole lot is definitely going in. They are still awful; they make me feel extremely tired for 24 to 48 hours, and give me an incredibly stiff neck immediately, as if someone just pulled a drawstring on my neck muscles. They actually make the nausea worse, at least at first, and have made me throw up a couple times. I don’t use them unless I absolutely have to, when the pain is unbearable and clearly not going to go away without it. You can take two, an hour apart, but I’ve never been able to face a second dose. Still, the relief is more consistent, and I am yet to receive an injury from it.
I’m not especially bad with needles, and I have used many of these autoinjectors; Aimovig, which I took for about 18 months before switching to Vyepti, is also an autoinjector. I got pretty good at treating it like a very short chore, quicker than taking out the trash. I found a spot on my leg that sometimes didn’t hurt at all, though sometimes it did, and I swear it was the same spot. I thought about getting a little tattoo to mark it.
But when I have to use sumatriptan, I have to steel myself. This fucker hurts, and I find myself quite scared of it. This weekend, bracing myself for another stab, I tried to sit and listen to the ocean, and imagine a pelican gliding above it, unbothered. It didn’t really work; I’m pretty shit at calming down, and especially shit at focusing on chilled-out thoughts. Eventually, I just did it. I heard the click, and felt the pain. A bead of purplish blood, like juice from a slightly overripe cherry, bloomed out.
As I was lying down to let the medicine take effect, the waves of nausea crashing over me like the waves of the ocean below us, I thought about this little needle pen. The sumatriptan injector is simply worse than the Aimovig one was, and I don’t really understand why that should be. These autoinjectors have a little mechanism that shields the needle and presses down into the pen, which allows it to sit flush against your skin, and the Aimovig autoinjector was very good at that. It went all the way into the pen, smoothly and reassuringly, and you felt confident that the pen was in place correctly. The sumatriptan injector, meanwhile, really half-asses it. The needle shield presses down a little bit, but not all the way, and frankly it doesn’t care. I don’t get any of the tactile feedback that tells me it’s going well.
It’s not just me: A quick Twitter search confirms other people really hate this little pen.
I wondered if the fact that my sumatriptan is a cheaper generic and the Aimovig was an expensive brand name explained the difference in the injector’s quality. The generic version of EpiPen, which launched a couple years ago, is reportedly a little harder to use: The generic must be held against the skin for a full 10 seconds, compared to just three seconds for the brand name, and the needle doesn’t automatically retract. But it’s more likely that there’s just something about this pen that doesn’t work so well for me; some people find Aimovig very painful. Still, it did make me think that, like the Migranal cap that tore my thumb open, there is perhaps not enough care being taken to design a device that is as easy and pleasant to use as possible.
I am very lucky that all of this is increasingly less relevant to my life, though my luck could change. Lying on the bad bed, in the nightmare realm for the first time in six months, I thought about how many hours of my life I’ve spent cringing and sighing and crying over tiny little barriers to medicine during a migraine. The blister pack of a naratriptan that was so hard to peel open, I’d eventually keep an old orange pill bottle and pre-peel them all. The cap of a Migranal that breaks off like the ring on Chief Wiggum’s pudding can. The Zomig nasal sprays that ran immediately into my throat, so frequently that I’d always bring an orange juice to bed with me.
What benefit has it brought me that dozens of different companies make migraine drugs, some of them with good autoinjectors that don’t hurt and nasal sprays that you don’t have to screw together through tears, and some with fiddly little pieces of shit that make you cry? I wish someone, ideally the government, would simply make one good version of all of these; competition does not seem to be doing much to speed us towards innovation. At the very least, I wish that someone would find the guy who invented the metal cap that cut my thumb, so I could just have a little word with him.
Below the jump, a longer-than-usual roundup of healthcare news from this week. If you’re not a subscriber, consider subscribing to access posts like this, and more.