On Migraine Scintillating Scotomas
clairelevans.substack.com
clairelevans.substack.com
I didn't feel the pain of a migraine like I usually do but the zigzag pattern started as a very small point in the middle of my vision, got home, lay down on the couch and the circle grew and grew. I'd say around two third of the outline of that circle was a zigzag and I vividly remember that there was a checkboard pattern around the part that wasn't zigzag.
It was hard to see at some point as it became bigger and bigger and I was beginning to panic. But there was an inner circle inside of it of clear vision and once the zigzag circle became so big that it was outside of my vision, I was back to normal vision.
I did some research back then to figure out what happened and saw all those medieval paintings and drawings that people with similar experience did. I would enjoy the experience much more today with that knowledge but it never happened again.
The experience last between 30-60 min.
I get migraines without the aura that are painful, but the ones with an aura never hurt but are very distracting.
The auras always start the same way - at first I think I just have an afterimage from looking out a bright window or lamp. But after a few minutes I realize that’s it’s not going away and moving into the periphery so I decide to go sit in the dark.
My first one happened at work during a very stressful period in my career. It was very scary and I took a sick day to go to the hospital where they hadn't had much experience dealing with this. Bright lights, many questions later and finally getting here's some migraine medicine I was let go to research this on my own.
Mine tended to happen in clusters, with weeks or months with none before the first in what's usually a series.
Based on some research, hunches, and a sense of harmlessness, I started taking magnesium when I notice a first one and rarely (never?) have another anytime soon thereafter.
As time passed, the zigzag pattern appeared and the hole became more obvious. I thought I was going blind and wondered if I had somehow burnt my retina. It wasn't until later that I thought to google the zigzag pattern. It didn't occur to me that other people would have experienced the exact same, very specific pattern.
I also never had a scintillating scotoma again. It happened a couple of weeks after I started ADHD medication so I suspect they're related. I often get bad headaches and that made me wonder if my headaches had been migraines all along.
First time I had one, I thought it was a stroke because I couldn't read anymore and I had paresthesia (numbness and tingling) in my hands and face. I believe the paresthesia is mostly brought on by anxiety/hyperventilation as I don't always get it.
My scintillating scotomas don't look very bright though. In fact, the first few times I had them, I didn't notice any color at all. I just noticed that part of my field of vision was missing. It's weird. You could be staring directly at someone's face but you cannot see part of it and yet you can see everything else normally. At the same time, there is no noticeable gap or hole or discontinuity in your field of vision. Just like the article mentions, it's like a distortion of space-time within the field of vision.
I don't think it's possible to accurately convey the experience through art but you can get a vague idea by looking at altered photos of human faces with 4 eyes and 2 mouths. You can feel your brain trying to create blind spots in order to make sense of what it's seeing. It's a bit like that except your brain isn't trying to hide specific features but a fixed portion of your field of view.
I was told most people susceptible to migraines get either these ocular ones or the painful kind, rarely both. I’m not sure how true that is but I don’t think I’ve ever gotten the painful kind.
Frequency is once or twice every two or three years since the first one a dozen years ago. It’s easy to imagine people in the past attributing mystical meaning to such a strange and oddly beautiful phenomenon.
Mine was very colourful, and as the arc/spiral/ring grew, most of the inner part retained the unusual visual effect. I made an animated GIF at the time.[1] I remember distinctly that the edges were the pseudocolour that flickers rapidly between yellow and purple, like my perception of pressure phosphenes.
I'm still very curious why it has such a specific appearance. Does it have something to do with the pattern of receptors on our retina? I know there are more numerous, closely-spaced receptors near the middle and fewer spaced further apart the closer to the outer edge, so I've assumed there was a connection, but haven't seen information either way.
[1] Imagine a growing spiral made of thousands of triangles like these, with triangles closer to the middle smaller in size and larger toward the edges. Or alternatively, imagine the painting by Hubert Airy in the article, but made up of these triangles.
>>> WARNING: not for people with sensitivity to rapidly flashing light! <<<
If you had a spreading pattern of bad data in VRAM, it's unlikely that the physical arrangement of the bits would map well to the current screen resolution and give a circle or box shape on screen, for example.
Drs have referred to this as “pre-migraine”. I’m glad that they don’t go on to full migraines as other members in my family have experienced debilitating episodes over the years.
I have tried to explain what I see to others but never had much luck.
The best example I could come up with was this: imagine sitting in a cinema where the screen is what you see out of your eyes (an obviously bad metaphor). Then imagine that someone behind the screen has stabbed thru with a knife and slashed a portion of the screen so that there is a flap that no longer holds any image.
That’s kinda what I see when I get one of these.
Interestingly, it seems to trigger for me when I’m staring closely at a bright computer screen, with my neck strongly arched. Usually that happens with a non-ergonomic position like sitting on the floor with my laptop.
I have a couple silent migraines a year. When I was a teenager, an aura was followed by migraine headache and nausea which could last hours. These days, an aura lasts ~30 minutes and is annoying but no big deal. It ends when the visual disturbance leaves my field of vision (which I find quite interesting) and afterwards my head feels a little sore.
I didn't realize the way scotomas grow mirrors the cortical spreading depression in your brain, but it makes sense! Explains why the scotoma doesn't really "vanish," it just gets bigger until expands past your field of vision.
I also wonder whether this proves that the scotomas I've had in dreams were real migraine auras and not just... dream artefacts or whatever.
Unfortunately, nearly two decades on, smaller weird visual artefacts are now just daily life and I seem to be very sensitive to glare (and I break into a cold sweat pretty often because that's how an aura looks when it starts). I only get a few migraines a year, but they seem to have rearranged the furniture in my brain a bit.
I had them frequently until I was in 9th grade, and they stopped, then returned again in my very late 20s. They're not as frequent when I was young, but I get them still about 2-3 times a year now.
The emergency rooms gave me Benadryl, Morphine and Ibuprofen. It does nothing. If I can get an Ambien (Zolpidem) in me before I throw up, I will sleep it off.
I don't wish these on anyone.
I read about it on some obscure forum that I'm unable to find right now. Many people commented that it works for them. I tried it, and it definitely lowered the intensity of my ensuing headache. I used to use the time during and right after aura to do the most important things I had to do for the day before the headache took me out of commission for the next 6 hours. But now, on the first sign of aura, I try to close my eyes and go to a dark room. This makes my headaches much more bearable and shorter.
A few people claimed this allows them to stop the aura from spreading (it slowly fades for them as it moves and completely disappears before reaching the edge of their vision) and they don't have the headache at all. I wasn't able to do that, but it makes me wonder if the visual inputs coming from our eyes somehow intensify the wave that is spreading in our brains. And maybe closing our eyes and stopping the inputs from our eyes deprives it of some stimuli that it needs to progress?
This specular, colourless arch in the center of my view that slowly grows into a ring, grows larger and larger until it's just around my peripheral vision, and then is gone and that's that. No symptoms other than a kind of blindness where it is in my vision.
None of the artwork in this page really describe it well for me, though maybe they're trying to be more abstract. The example on Wikipedia is almost a perfect rendering of what I see, now that I've looked it up.
The blindness is a fascinating experience because the brain is clearly trying hard to fill in the blanks. I can look at text in a book and I see text in a book... but if I try to read any of the text it just kind of isn't there. I have to read by looking slightly away from the text.
I never heard of it when it happened to me for the first time so I nearly freaked out as I thought I was having a stroke.
I'm not sure if it's the caffeine in and of itself or downstream of something like higher blood pressure, but the correlation is extremely strong.
Though I won’t look at the images, I can say that the auras I experience don’t all look the same. Some are blurrier than others, and some have more structure. It got to the point I could predict how painful and how long they would last by the shape and speed of the aura’s onset. The most painful ones had the most clearly defined structures, while I was much more likely to throw up if they were especially blurry.
And now I’m starting to feel that particular sort of sick just discussing it, so I’ll stop there!
Note to non-migraine-enjoyers: the grey blob in the video isn’t grey, it’s just an area you can’t see in. Your brain tries to fill it in the best it can, as it does with any eye damage, so you might see a blank region on a page when there’s actually text there, for example. This means the shimmery bit isn’t at the edge of a grey blob, but a strange nothing-zone of fuzziness where things that “enter” the zone may or may not vanish, and which feels distorted and wrong, like a fun-house mirror and a kaleidoscope at once. If they get big enough they kinda go blank, but still aren’t really grey—I’m not sure what color you’d call them.
(At least for me—maybe some people really see a grey splotch?)
It's just like the after-image you see after glancing directly at a bright light (like a light bulb's filament) then looking away or closing your eyes. Now imaging that after-image with a colorful scintillation along the edges, sometimes wrapping around a blind spot in your vision (not necessarily a black spot).
The cilia of a lobed comb jelly are close to what I'm talking about (video: https://youtu.be/LPu1juezWeg)
Auras are beautiful little harbingers of debilitation.
It was quite fascinating to observe it from the very beginning. But now I freak out every time I see any kind of white dot in my vision when I close my eyes at night. And actually, when you really focus, you will realize that there are many tiny white dots and weird shapes popping out when you close your eyes at night. We just never pay attention to that, but the "idle" activity in our brain and nerves generates some artifacts when we close our eyes.
Takes about 20 minutes to expand out of sight.
It wasn't unlike how I felt on mushrooms, 20+ years before it happened. Only one, immediately saw a GP, got put on hypertension meds, never had another 30 years on.
The really weird migraines are the ones where you get aphasia, now that’s scary.
Hasn't happened much, maybe 4 times in my life.
The thing that got me each time were the purity of the red-green-blues of the scintillations as well as the triangular geographical shapes that seemed to reveal the foundations of cognition.
I've had dozens of these over years and learned to live with them. They seem to be triggered by stress and possibly caffeine, as others have noticed. Thankfully (?) they have become less painful over time.