On Migraine Scintillating Scotomas

https://clairelevans.substack.com/p/brighter-than-a-cloud

by arbesman • 2 years ago

70 60 2 years ago

clairelevans.substack.com

Beautifully written little piece, on an interesting niche subject. Recommended!

As a migraineur, just about the last thing I want to look at is migraine art. That said, none of the pieces shown in the article are particularly good visual representations of the scintillating scotoma that I experience.

nippoo• 2 years ago

As a non-migraineur (and neuroscientist) I find this absolutely fascinating! It's so wild that these are visual enough to draw.

billy_bitchtits2• 2 years ago

Another very perfect looking simulation:

https://www.youtube.com/watch?v=AVYjbthGk2s

klyrs• 2 years ago

Hah. As somebody who first experienced this a few months ago, I was quite relieved to discover this sort of art. None of it looks quite like mine, but after seeing enough of the variety in others' experience, I feel comfortable positively identifying that symptom.

tiltowait• 2 years ago

Same. I used to get migraines weekly, and sometimes even more often than that. I had to visit the ER twice because of them, and one was so bad, the doctors thought it was a brain aneurysm. Just thinking about migraines makes me feel antsy.

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!

TacticalCoder• 2 years ago

I d describe mine as some kind of a stroboscope. I don't t know if there s any pattern: I d say is more like parallel lines blinking. If I have that, I know the migraine is coming.

xattt• 2 years ago

I, too, have suffered the impending feeling of dread as part of my field of vision disappear into nothing, only to re-emerge accompanied by the scotoma.

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.

starburst2• 2 years ago

That is what I wondered too after it happened to me, if what I saw was a glimpse into the inner working of how the final image gets to our consciousness, like it was missing some steps / processing.

starburst2• 2 years ago

I still remember when that happened to me, it was quite a bizarre experience. It started after coming back from a meeting where the room was all painted white and had some of the brightest light I had seen and then it started while I was coming back home in the car, it was a sunny winter day with bright white reflected snow.

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.

parpfish• 2 years ago

Sounds similar to me.

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.

swatcoder• 2 years ago

Same here on all counts.

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.

tmm84• 2 years ago

For me my most powerful migraines have an aura attached to them. The visual distraction is nothing more than an omen of the pain I will be in for when it goes away. For me my auras always have some hippy 60s trippy oil smear going on in them which is just scary to me.

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.

noodlenotes• 2 years ago

For myself, I suddenly lost the ability to read. Then I realized that the real problem was that the words were missing. I wasn't conscious of a hole in my vision, it was just that everything in one part of my vision was gone. Kind of like when you see a star in your periphery but when you look at it straight on it's too faint to see.

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.

jongjong• 2 years ago

I've been getting migraine auras with scintillating scotomas since I was 16 though it only happens about once every few months and they last a few minutes to a couple of hours so they have not been too debilitating. This article provides a great description.

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.

foobarbecue• 2 years ago

My migraine always comes with zigzag colorful ribbon, tingling in my right hand and the right side of my tongue, and disappearing areas of vision as you describe. My speech is also affected -- incorrect words or garbled words come out of my mouth when I try to talk. The symptoms are quite stroke-like -- it sounds like there's actually a bit of a continnum between migraine and stroke, with TIA (transient ischmeic attacks) in between. I did get scanned after my first one though and no damage was visible. Thankfully, mine only last about half and hour, and only seem to happen once a year or so. It's such a weird experience that I tend to forget how strange it is between occurrences because it's hard to believe the memories.

Kaibeezy• 2 years ago

Yep, I thought my first one was a stroke too. I just happened to be driving past my doctor’s office, went in quite panicked, and was told to sit down, chill out and observe it. She was completely calm, so that’s what I did. It really is a fascinating vision.

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.

blincoln2• 2 years ago

I've only had the experience once, years ago, but I thought it was my retina detaching (based on the vague descriptions opthalmologists have given me my entire life). It was the middle of the night, so I went to the ER. They thought I was on drugs, then got angry with me for "self-diagnosing using Google" when I showed them an artist's impression of a scintillating scotoma and said that's what it must be.

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! <<<

http://www.beneaththewaves.net/aura.gif

deviantbit4• 2 years ago

I have the vision issues and the pain. I thought everyone experienced the pain. Light brings pain that I can't really describe. It is this cold, incredibly sharp pain. If it is a bad one, I would honestly be okay with dying than to have to experience the entire thing.

Angostura2• 2 years ago

For me its like ripples of water on brightly lit glass.

deviantbit4• 2 years ago

Yep. That is what I get. I was unable to describe it, but that is pretty close. Do you throw up? I have to fall asleep to get rid of them.

Angostura2• 2 years ago

No, I get no other symptoms. I just have to wait for it to gradually shit through my visual field. Occassionally, at work I've had to say - 'can't do much for the next 30 minutes because I can't really see - anyone want me to make a cup pf tea'

thrill• 2 years ago

If you want to see one then just keep reading that black text on a white background of that page.

matthewsinclair• 2 years ago

I get these regularly, but luckily they don’t go on to be actual migraines.

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.

slibhb• 2 years ago

They're called auras (https://en.wikipedia.org/wiki/Aura_(symptom)). An aura without a migraine is called a silent migraine.

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.

bicx• 2 years ago

Same with me. I don’t get a full migraine, just an aura. When it first happened, I thought I had a detached retina and started freaking out a bit.

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.

billy_bitchtits2• 2 years ago

It looks exactly like this:

https://www.youtube.com/watch?v=qVFIcF9lyk8

colordrops• 2 years ago

Pretty similar but it's a bit more jagged, at least for me.

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.

deviantbit4• 2 years ago

Mine are white, and have almost a sparking sensation to them.

SkeuomorphicBee• 2 years ago

Interesting how it can be different from person to person, mine looks nothing like that. For me it is not colourful, the border feels more like gray TV static than the rainbow in the video. Or sometimes it feels like a black and white stripe pattern, or sort of zigzag stripes that flash between black and white.

fallingfrog2• 2 years ago

I should say, to get the real effect of what it looks like, keep your eyes pointed at the center of the screen (the shimmers are often in your peripheral vision and you can’t look directly at them)

bufordtwain• 2 years ago

As of about 5 years ago this started happening to me for some reason. I can confirm what another poster said - it comes as quite a shock the first time ! It happens to me about once a year now and it's painless but weird. I've never suffered from conventional (painful) migraines.

andy800• 2 years ago

When this happened for me the first time, about 6 months ago, I initially thought it was the start of "geographic atrophy", a syndrome that Henry Winkler (The Fonz) does a commercial for, which is very scary, and irreversible. A bunch of web searching eventually led me to scintillating scotomas and realized that's exactly what I had, so I felt quite a bit better. I've had perhaps a half-dozen total. I'm also fortunate that it has not been accompanied by migraines.

JeremyHerrman2• 2 years ago

Here's how I usually describe what a migraine aura looks like:

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.

JeremyHerrman2• 2 years ago

One other thing to note: although auras move and change over time, unless they appear in the center of your vision (fovea), you won't be able to directly "look" at one.

Twisol• 2 years ago

Right -- they happen in "screen space", not "world space", to use a graphics analogy.

spondylosaurus• 2 years ago

As the scotoma’s shining edges recede across your field of vision, they trace a corresponding wave of electrical activity, a “spreading depression” crossing the cortex at 3 millimeters per minute.

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.

cadence-6• 2 years ago

I once saw an aura in my dream. The dream went on for a while, and then I woke up. It turned out the aura was real, and somehow, it embedded itself in my dream.

Analemma_• 2 years ago

If anyone gets these and is in the dark as to a cause, I have found a very strong correlation with excessive caffeine intake. I have been wrestling a caffeine addiction under control, and have found that these always occur on the days when I relapse and have many cups of coffee or energy drinks. It isn't bidirectional-- lots of caffeine doesn't always cause the migraine-- but the migraines always happen only when I've had a lot of caffeine. Whereas when I'm on the wagon and consuming none, or normal amounts, I never have them anymore.

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.

tsujamin• 2 years ago

Heat stress is my trigger, although I went a couple years without an aura until I had one recently

takklz• 2 years ago

Same here! Especially if I have multiple days of caffeine abuse. Weirdly, if I have too much caffeine and go exercise I get one of these guaranteed. I’m guessing some sort of relationship between caffeine and electrolyte depletion? No idea, I try to stay away from caffeine now.

tpetr• 2 years ago

I feel seen! For me it’s some combination of too much caffeine or sugar and too little water or sleep.

cadence-6• 2 years ago

I have been looking for my trigger(s) for many years, and I still haven't found it. However, I definitely get more migraines when I experience periods of stress and/or sleep issues. Eating unhealthy snacks (candy, chocolate, etc) tends to increase the odds of me having a migraine.

zachmu3• 2 years ago

I get these, but there's no pain associated with them while they're happening. Hours later, there's a kind of "sore spot" in my brain that I can feel if I cough or sneeze, or shake my head quickly. The spot corresponds to where the spreading depression was -- so if the aura was on the left, I feel it on the right side of my brain and vice versa. Usually hurts for about a day before subsiding.

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.

Waterluvian• 2 years ago

Huh. I think this might be what I get maybe 3 or 4 times a year since my 20s.

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.

ggm• 2 years ago

Mine was more like lightning. So no field behind it, a leading edge but only a leading edge and since it was outside the core field of focus it caused me to scan the field, which became tiresome.

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.

deviantbit4• 2 years ago

I understand migraines. I lose my vision almost completely, and see only white. Sometimes I can make out things on the edges. It starts with my vision going wonky. I have these spots that show up before the migraine has hit me full on. I then start throwing up, and can't see, the light and sound are incredibly painful. The closet is the best place for me, with a towel stuffed under the door.

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.

qubyte2• 2 years ago

The general shape is the same as in these pictures for me, and it expands in the typical way and direction, but for me it's like shards of broken glass strobing various colours. When I first got migraines I didn't even realise I was seeing them. The first sign something was wrong was when I was watch the TV and suddenly it was hard to understand what the actors were saying. When I focussed, I realised that it was because I couldn't see their mouths!

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.

cadence-6• 2 years ago

I'm the same here. I freak out every time I see a small dot of glare in my vision. Worse yet, I have floaters in my eyes, which often look like the start of a migraine since they obscure some of the vision — this is especially noticeable when reading text on a computer screen.

qubyte2• 2 years ago

Yeah, I get that too. Fortunately the floaters are per eye, so I can eliminate them as a migraine thing using a sequence of winks. This looks in no way peculiar to people around me.

hn72774• 2 years ago

Mine is a shimmering rainbow zigzag shape that starts as a point and expands into a halo with the center open to my normal vision until it goes out of my field of vision. Then the headache starts. A dark room and sleep helps me get through it.

Hasn't happened much, maybe 4 times in my life.

fallingfrog2• 2 years ago

Yeah this happens to me fairly often, you get the rainbow zigzags with a hole in reality in the center.

The really weird migraines are the ones where you get aphasia, now that’s scary.

https://youtu.be/IG7NuH5QTdE?si=L_h1SVbjMoowvo0A

cadence-6• 2 years ago

A few months ago, I was able to witness my aura from the very beginning. I was trying to fall asleep, and I suddenly realized there was a very faint tiny dot a bit below the center of my vision. It looked like a dead pixel on an LCD screen, but super tiny. It was very faint, almost black, at first. But it quickly became brighter. I focused on it, and I noticed that it wasn't a solid dot. Instead, it looked like it had the shape of a rectangle that was sort of morphing into another rectangle that was rotated by 45 degrees. A bit like a wireframe of a rectangle, actually. Then, the bright rectangle started pulsating and changing rapidly between very bright white and a dimmed white. That's when I realized that it must be an aura starting. It then followed the usual pattern of getting bigger and slowly moving out of my vision.

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.

cadence-6• 2 years ago

To those who suffer headaches after the aura, not many people realize there is an interesting trick. When you notice the first signs of your aura, try to close your eyes and either go to a dark room or cover your closed eyes with your hand (to make it as dark as possible). In many cases, this will result in a less visible aura and less intense headache.

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?

beej71• 2 years ago

For me, it looks like this. Scroll down on this page to the Two Dimensions section and let that run a bit. When it starts swirling, imagine just taking a curved 1 cm wide slice of it, and overlaying it on your field of view.

Takes about 20 minutes to expand out of sight.

https://en.wikipedia.org/wiki/Cyclic_cellular_automaton

On Migraine Scintillating Scotomas

Related Stories