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Living with Invisible Pain

May 20, 2023

Many people live with some sort of ongoing invisible pain or struggle. I thought I would write about my own journey.

Migraines are debilitating "headaches" from which 14% of the world's population suffers, and 2% suffer from "chronic migraines," meaning they have migraines at least 15 days a month [AMF]. I am sad to say I am part of this unfortunate 2%, and I thought I would talk a bit about my experience, as well as some of my techniques for coping, in case there are others struggling with chronic migraines as well.

(Note: Unless you are also a chronic migraine sufferer, please do not write to me with advice—I have been seeing doctors and neurologists, identifying triggers, doing the whole nine yards for over 10 years, so it feels quite silly when someones suggests something they've just seen in a commercial or that they otherwise don't know about. See this tiktok sketch for some idea.)

I write "headache" in quotes, because a migraine does not feel or act like a typical headache. During my migraines, I usually don't even mind sound, but they're different for everyone. For me, a migraine is typically characterized by severe pain in one particular place on one side of my head, typically my temple or my eye, that I might describe as stabbing, throbbing, or pounding, but that feels like it would feel better if I were to hit or stab it. It is also accompanied by severe sensitivity/aversion to light. You may have seen me over the years wearing sunglasses or tinted glasses indoors, sitting in a dark room with no lights, or ranting about "darkmode," etc—this is why.

I actually know a fair number of others with frequent migraines within academia, mostly women, which makes sense, since women are 3x as likely to suffer from migraines.

Until very recently, here's what my migraines meant for me. Whenever I had a migraine, I needed to be in the dark, not using screens, often not reading at all (not even paper), often having my eyes closed. I get nauseous from motion once I have a migraine, so if I suddenly get one while I'm out, I can sort of get trapped somewhere. This can mean that all of a sudden during a PC reviewing period, I can't look at papers for an entire week. This can mean that I have to cancel classes or research meetings last minute and appear super irresponsible and unprepared, because my body strikes and makes me go from a normal human being to an incapacitated one in no time, and my period of incapacitation can last anywhere from a few hours to 4 days. Migraines can pop up at conferences, and suddenly I can't schmooze with people.

And until about two years ago, I told almost no one about my migraines. I tried to make excuses and cover for my cancellations and reschedulings, and make it seem like I'd been working the whole time when I'd really been incapacitated.

Another frustrating component is that even close friends don't realize how serious and painful it is. They see you sitting in the dark or wearing tinted glasses, and that looks funny to them, so they make a joke. It doesn't occur to them that you're going through unbearable pain and doing your best to continue to function with it, because you get it too frequently to peace out and lie in bed every time it occurs. I've had people see migraines listed as a disability (and I am registered with the disability office at work, because the lights in my building induce migraines or make existing ones worse, and there are no rooms where you can block the hallway lights), and liken that to listing having children as a disability. Yet simultaneously, people complain to me the one day a year that they get a migraine. Or when you have to cancel on plans, people get frustrated with you. Others are much more sympathetic and forgiving toward one-time occurrences than toward chronic illness. It's similar to how some people complain about gluten-free people, when many gluten-free people are literally just allergic to gluten.

My Story

I think that I've probably been getting very infrequent and mild migraines throughout my life without realizing. But starting approximately senior year of undergrad, I started to get really awful headaches that were mostly just throbbing in one spot and complete aversion to light that would knock me out for a day once every few months. It was also around the same time that my anxiety began to present itself, for the record.

As I began grad school and delved further in, my migraines became more frequent and I began to understand what they were. Suddenly I had a migraine once a month. Twice a month. Once a week? I started to understand certain things about them—if I let myself go hungry for too long, like skipping a meal, it would definitively result in a migraine. The day that Trump was elected, I got my first migraine in a month, so I learned that maybe stress is a cause. I started seeing doctors and trying prescription pills that can be taken when an attack comes on, a class of drugs referred to as "triptans," starting with Sumatriptan (or "Imitrex"). Usually, these pills help neutralize an attack, although they tend to knock you out. Unfortunately, it didn't work for me. There's about four different kinds of them, and none of them seemed to work for me. So I tried higher doses, and got some effect, but the effect seemed to just make me sicker. So no luck.

And the migraines got worse and worse. At some point, I knew I either got evening migraines or weekend migraines, but by the end of grad school, it was a free-for-all. Migraines could come at any time, and they were lasting up to three or four days now. Over-the-counter drugs like ibuprofen or Excedrin Migraine were now pointless. My doctor in Seattle sent my file to the neurologist clinic at UW, and they recommended starting to work my way through the course of potential-migraine-preventatives and trying higher doses of triptans.

Potential migraine preventatives. Until about two years ago, there were no medications designed for migraines. Now, there are approximately two, and they're extremely expensive and hard to get your hands on. If you want the migraine-specific medications, what insurance makes you do (and not just in the US! I found this out when on the job market and considering living in other countries with socialized medicine!) is work through all of the potential migraine preventatives which are not designed for migraines, and if none of those get you out of the 15-days-a-month chronic migraine definition, then they'll consider letting you try these new actually-designed-for-migraines medications.

So what are these potential migraine preventatives? An anti-seizure drug, an anti-depressant, and a drug to lower blood pressure. Those are the big three medications they'll ask you to try because they're known to potentially help with migraines, plus it's always fun when your other doctors get confused. There are all sorts of other fun ideas that get prescribed to you too because maybe they'll help out, like, hey!, why don't you try take 400x the daily recommended dose of vitamin B2 and maybe in 90 days you'll feel slightly better? Cool?

If you try all of the prevents for some time without losing your chronic status, then you get to try the serious business, like Aimovig, a once-a-month injection at home actually designed to prevent migraines. Or, Botox. Yep, like the kind that people get for wrinkles. Except injected into 31 locations around your head, neck, and shoulders every three months to paralyze some muscles that might be causing migraines. And no, insurance is almost definitely not going to cover both attempts at once, so better pick one.

Okay, so those are the preventatives. If triptans don't work for relieving pain during attacks, you move through extremely strong pain killers that can destroy your stomach and wind up causing headaches on their own: fioriscet, ketorolac, tramodol. I'm still struggling to find something that works for me.

Other Kinds of Invisible and Chronic Pain

I'm writing about migraines not because I think they are ultimately debilitating, but because they are my own personal experience, and one example of serious underlying sometimes-debilitating pain that people may be living with. I also have friends living with many other types of pain that they also feel they have to cover for, so I thought I might give a few of theirs as examples.

(Non-Medical) "Tips and Tricks" for Handling Migraines

My migraines lead me to avoid screens and light a lot, so the following are tips for how to do just that.

E-Ink Technology: E-Ink is the technology behind kindles, that doesn't have the same brightness-and-pain-into-your-eyeballs feeling as regular screens and feels kind of like paper. For the purpose of my photo(light)sensitivity, e-ink doesn't feel like a screen at all.

First, some Tablet/iPad-substitute options, for writing notes, reviewing papers, reading papers/books/articles. All are approximately $500. For monitors, the only company that really manufacturers legitimate monitors is Dasung. They're already on their third iteration (with backlight) of their 13" monitor(~$1000), and their 25" monitor has JUST begun to be produced. I just purchased two at an obscene price (~$2000 each) from their 2nd batch of 100. It can be really nice to not use a screen, but I'm not sure the technology is totally there. You can use these as monitors for your laptops, ipads, phone, etc.
Audio approaches: I try to switch over to doing things via audio instead visual, since I'm so photosensitive and typically not sensitive to sound during migraines.
Darkmode etc: At least on apple devices, there are system-wide "darkmode" selectors and "night-shift" selectors to lessen blue light, which help me a lot. Then, within each app, you can just select same as system. (This is a good choice for the invert option that follows.) And some other things:

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