Seeing The Magic Doughnut
Sometimes, I doubt your commitment to sparkle vision.
First things first: if you missed Monday’s announcement, the Erin Endeavor is moving homes from Substack to Buttondown. If you are currently subscribed at any level, you don’t have to do anything different to continue to receive newsletters.
As I said in that announcement, I will be posting regular updates this week to give everyone as many chances as possible to get the memo before the switch over next week.
I had intended to do them at least daily, but yesterday I was laid up with a migraine right at the point when I was getting down to business, and didn’t accomplish much with the rest of the day, beyond identifying what was happening as a migraine.
I don’t think it was the first migraine I’ve had and in fact I think I’ve had them off and on for most of my adult life. I just lacked the context to identify them as such. Before yesterday I just was aware, occasionally, that sometimes my vision would "just go” and I wouldn’t be able to see well for a while.
I always chalked it up to fatigue, as it’s not infrequently that my eyes will not focus correctly when the muscles that control them get tired, and I figured that the weird jangly light show that would sometimes obscure a portion of my view was just another permutation of that because, honestly, any other possibility was too terrifying to contemplate, and it’s not like I could afford to go to the doctor for a problem that comes on unpredictably and passes quickly, something I could barely describe and that probably wouldn’t be happening when I managed to get seen.
But then I saw something on Twitter one time between the last spell of that and the most recent one, something like but not exactly identical to this tweet below:
References to seeing a cursed, phantom, or magic doughnut turned me onto the existence of visual migraines, aura effects that don’t necessarily herald or coincide with the painful and particular headaches that are more strongly thought of as migraines.
Having a name for what’s happening might seem like a small thing, but it helps me in a few different ways.
First, it gives me some reassurance that it’s not a completely alien, inexplicable phenomenon that must portend something worse. Knowing these are migraine symptoms let me research diagnostic criteria, and learn that if I could only see the effect in one eye it would be a potentially more serious condition.
Second, it helps me find other symptoms that go along with it, that I might have otherwise missed or not understood. When I tweeted about this yesterday, other people who have them mentioned being drained, slightly fatigued, or even exhausted in their wake. Which… I mean, I have a mitochondrial condition where fatigue and exhaustion are my frequent companions, but yes, yesterday’s spell did leave me feeling very unaccountably tired when it passed, and I otherwise would have just chalked that up as a mystery, another part of the magic of being me, that sometimes I can even tire myself out doing nothing.
And as a potential third thing… maybe now that I’m thinking in terms of migraines, I can figure out some commonalities between the times when it happens and thereby learn if I can mitigate or avoid them. To that end I have downloaded a symptom tracking app recommended by people on Twitter, called Migraine Buddy.
So even with nothing I can act on now, I am armed with knowledge, and that may make all the difference in the future.
Auras were the key piece to cracking my understanding of my migraines, too. I'm glad it's armed you with some knowledge, too. I think I will adopt sparkle vision my vocabulary for the phenomenon!