Visual Migraines

I’ve had migraines since I was in high school, and while they’re bad, they’re never super bad–both of my siblings, for example, get far worse migraines than I do. (Both of my siblings are in far worse health than I am, in general, and both of my siblings make fun of me for eating wacky health food and using alternative medicine. I make no explicit connections between those two facts, I’m just mentioning them. No reason.) A migraine, for those blessed readers who don’t know, is a seriously horrible headache, going far beyond “my head is killing me” to reach such levels as “my head is hanging me upside down in a basement and mailing my toes one at a time to my loved ones.” Whereas most headaches are caused by pressure (blood or sinus), migraines are neurological, so the odds are that you either get them repeatedly or you don’t get them at all.

“Repeatedly,” for me, is usually about twice a year, and I can always tell one’s coming because it is preceded by an aura: a visual effect, basically a local, temporary degeneration. This takes different forms for different people, and for some it doesn’t happen at all; for me it manifests as a Scintillating Scotoma, which is an awesome way of saying that I see bright jagged lines interrupting my field of perception:

That’s not a perfect representation of mine; rather than a cross-hatch of color I see actual jagged lines, usually neon-bright, like a flickering explosion effect from an old video game. I used that image to show you how disruptive it is to my actual vision, getting in the way of things and blotting out words, objects, and faces. In terms of shape and color, they’re a lot more like this:

They don’t last long, maybe 40 or 50 minutes, about half that if I can drink some caffeine as soon as they appear. Drinking caffeine early will also usually scuttle the pain, but only if I can get to some in time. Since I don’t always drink a lot of Coke, this is sometimes harder than others.

Last night, and the reason for writing this post, I had the scariest migraine experience I’ve ever had, for two reasons. First, I was driving, which meant I didn’t have any caffeine near at hand–and since my kids were home alone under their older sister’s rapidly degrading supervision, I couldn’t really take the time to stop and get any. In hindsight, I should have, because what happened next was freaky as all hell: the scintillating scotoma stayed, but then I also started to get negative scotoma on top of it. Whereas a scintillating scotoma is just a patch of wacky colors, negative scotoma is a patch of nothing at all:

Again, this is not a perfect recreation of what I saw (or didn’t see). It’s kind of like there were patches of blurry vision, but it’s really more like there were patches of nothing. I wasn’t see black spots or anything, just places scattered here and there where my brain simply didn’t process anything. I could look at a fast food sign, for example, and while I was peripherally aware of the entire sign being there, I had to look at each part of it in turn to actually see the whole thing. The creepiest one was a car in front of me, where part of the roof was gone–it wasn’t actually missing, and it’s not like I perceived a giant hole in it or a deformed shape, I just couldn’t see part of it. It wasn’t there.

Yes, I should have gotten off the road, but I wasn’t thinking clearly. I knew I needed to get home to help my kids, and I knew that if I didn’t get home quickly and take some medicine the pain part of the equation would kick in and I might end up completely useless on the side of the road, waiting for my wife to finish her meeting and come pick me up, which wouldn’t happen for another hour. I should have done it anyway, because it’s stupid to drive under those conditions, but I didn’t. Looking back, I suspect that my judgment may have been fuzzed by the same effect, but I don’t know. It was just really freaky and weird, and you can tell it affected me because it’s a whole day later and I’m writing a blog about it, despite just having blogged yesterday. Two blog posts back to back? That’s crazytown.

I write a lot about mental disorders, and with THE HOLLOW CITY (coming out in July) I delved even deeper into the subject of neurological disorders, and the many, many, many ways your brain can just screw you up, sometimes for no reason at all. My little migraines and my little scotomas are a teeny tiny part of that, a bare taste of what people with schizophrenia or anxiety disorder or depression deal with on a daily basis. It opened my eyes a little bit to a subject I thought I already had a pretty good grip on; I understood the causes and the symptoms and the direct effects pretty well, but that drive made me realize the kind of helpless feeling that comes as a secondary effect, knowing that you’re essentially a prisoner to an perceptive and cognitive organ that nobody really understands. It shook me up, and at the end of the experience I’m kind of glad that it did.

22 Responses to “Visual Migraines”

  1. Courtney says:

    I’m with you on the migraine train, and Migraines with auras? I can’t even describe it to people who don’t suffer from such things, because they look at me like I’m crazy!
    I know I’ll be having a migraine because a rush of exhaustion will hit me at around 2 or 3 in the afternoon. It isn’t the sort of fatigue one suffers after a big lunch and no sunshine while at work, either–it is an invisible weight sitting on my head. Then comes the lack of comprehension and the degrading filter of things I think versus things I say, or what I call the Stupid. The Stupid sets in and I talk about the most ridiculous things, and that’s really all I can do, because any other activity is too complex for my collapsing brain.
    When the migraine hits, it brings with it tingling, nausea, and the lights. Oh, the lights. I close my eyes and it’s like someone is turning the lights on and off in a corner of my brain.
    Unfortunately, when such a migraine hits, I hesitate on taking the pain killers. I can take an excedrin migraine and the pain in my head will fade, but everything else still remains: the dizziness, the tingling, the numbness, the Stupid, and the nausea. I’ll sometimes forget that I had a migraine coming on a few hours ago and panic about all the other symptoms. This leads to irrational thoughts of dying, which brings on panic attacks, which keep me awake into the late hours of the night watching Disney movies to try and calm myself down.
    So, I feel for you. I think visual auras are scarier than the emotional ones and the tingling ones, though–impaired eyesight is the worst thing! Knowing my luck, I’d think I was going blind!

  2. Karen says:

    My mom puts a small pill bottle full of no-doz in the glove compartment of the car for migranes, and for occasional night driving. It would be very easy to keep that, and your preferred pain meds there, and have them at least marginally accessable wherever you go without having to take up room in a pocket or wallet or whatever.

  3. Bryce Moore says:

    When I get migraines, I always get the negative scotoma type. If I knew that mind-shattering pain didn’t always follow, it would be interesting to analyze it when it occurs. The first time I got a migraine, I was in church, looking for my scriptures. They were on the bench, right where I had left them, but I looked right at them, and all I saw was bench–nothing else. It’s like my brain fills in the missing pieces. I can look at something and see not just nothing–but see the area behind the nothing. Does that make sense? It’s like Adobe has broken into my brain and magic erased the item from existence. Yeah–like that Back to the Future picture. That’s the ticket.

    My condolences on the migraine. They’re evil. Glad you’re okay.

  4. That’s so scary! I’ve never had to drive with my migraines, for which I am triply grateful after hearing about your experience. I’m glad you got home safely.

  5. Dan, you’ve written some scary stories in the past but I think this is about the scariest stuff yet…

  6. admin says:

    Bryce, are we exactly alike? The similarities scare me sometimes.

  7. Wm says:

    Stuck on our old iMac are a series of images my wife made on MacPaint to show me what kinds of auras she got. They were quite jagged and colorful. She’s now progressed to the point where she doesn’t even get an aura, which used to provide a bit of warning and window in which to take medication. Now they just sneak up on her and arrive full blown.

    I’m sorry to hear it was so bad. I agree that you should consider carrying something with you. My wife used to take Excedrin PM/Migraine (obviously may not help if you are going to need to drive), but now she usually just washes some acetaminophen down with a Coke Zero.

  8. Robin Weeks says:

    I get the Scintillating Scotoma (so THAT’s what it’s called!)… but it doesn’t usually herald a migraine. Annoying and hard to read through, but otherwise harmless for me. Sometimes I’ll get a mild headache afterward. The kind that goes quietly away without meds.

    Hubby, though, HE gets the full-blown, please-shoot-me-in-the-face migraines. Like his father before him. We have three sons who are already starting their share in the legacy, dang it.

  9. stacer says:

    Scotoma, huh? I never knew there was a name for it. I don’t get the lines–mine is more of the last one, where things go blurry on me. For me, it’s mostly related to my sinuses–it’s definitely sinus-related for me, not neurological, but so *bad* that I get a similar effect. It’s also related to my sinus-related vertigo, for me–things go blurry because my vertigo gets bad enough and my eyes start to flicker and are unable to focus. When it’s bad, it freaks me out. The first time it happened, when I got the infection that started the vertigo problem, I was driving as well, and I had a similar thought process–”if I can just get home…” What a nerve-wracking drive on the Seattle viaduct.

  10. admin says:

    Robin, a scotoma without a headache is called a silent migraine, and they’re not super common. You’re the first I’ve met who has them, actually.

  11. Wow. Scary! I thought my headaches were bad. They last for three days and pound and make it hard to do anything, but they’re nothing like that, and i don’t think they’re migraines. Mine come from too much eating sugar. Once I cut back on it my headaches stopped. Reading about mental illnesses is interesting because it helps me understand them better. I’m currently writing a story about a girl with a disorder and it’s fascinating to research and learn about it and get inside her head.

  12. Alan Horne says:

    My brother-in-law had migraines for years. Turns out they were caused by a tumor. He had it surgically removed about a week before it could finish killing him, and his migraines stopped.

    I’m sure your migraines are different than his; but still, when was the last time you had an MRI?

  13. Raphael says:

    For me, it’s usually aura without pain, too. It starts right at the center of focus so it is nearly impossibly to read anything. Then it slowly spreads outwards over the course of 30 to 60 minutes before disappearing. While there is no headache, I feel fuzzy.

    Once, during a lecture, half of my field of vision grayed out much as you describe it. That was scary, and has not happened since, thankfully.

    Can you tie it to specific triggers? I know I am more likely to have migranes when I have not been drinking and/or sleeping enough. I am fairly certain sodium glutamate triggers them, too.

  14. Jake says:

    Dude. Missing vision isn’t just a sign of a migraine, that can mean actually be a mild stroke. If for instance the left field of vision of each eye ever goes away so you see something like ___X ___X when it should be XX XX then you’ve got a serious problem.
    Hopefully that was just a migraine, but if it happens again, especially if your ability to process a thought seems fuzzy, call 911. Right then.

  15. Abbe says:

    1) Scintillating Scotoma is the coolest name for a symptom I’ve ever heard. Almost makes having them worth it. I’ll have to save this picture to show my husband because it’s a perfect representation of what I see.
    2) I used to think a visual disturbance was always a precursor to a migraine. I would take medicine and lie down then feel relieved that I’d caught it in time to avoid one. But once, I couldn’t do that and I was surprised when the scotoma eventually went away with no headache following. Now you’re telling me I have silent migraines? I really hope there isn’t anything weird going on inside my brain. (Or any weirder than what I already know about, anyway.)
    3) Glad you got home safely.

  16. I get both the Scintillating Scotoma and the negative Scotoma. The first are more like rainbow geometrics than jagged lines and they float across my field of vision. I went to the eye doctor the first time I ever had them and he showed me pictures an artist drew of his own and they looked just like mine! I thought I was going crazy or blind or something, but he was totally calm about it. I’ve had migraines since high school, but that was my first visual migraine. I’ve gotten them somewhat frequently since then. My negative ones usually are in my dead-center field of vision so I really can’t see except peripherally. I can’t read a book or watch tv or anything because the minute I try to look at something I can’t see it. I end up just listening to calming music with my eyes closed. It’s actually kinda fun to watch the blurs or geometris move across the black backdrop of my eyelids. I always take medicine right away, so I’ve never actually gotten the pain of my other migraines with the visual auras, but now I’m wondering if that’s because I don’t get them. Weird. I don’t think I’m going to skip pain meds just to check though…I wouldn’t want to be wrong and not be able to get rid of the pain for a week! I’m glad you made it home alright. Make a plan for next time.

  17. dawn says:

    I’ve had migraines since I was about 10 years old, off an on. Nothing worse. I’ve gotten to the point of trying to find the drill, so I could put holes in my head to let the little guy with the pickaxe out and make him stop stabbing me in the brain. And I was very serious about it.

    Had my first visual migraines just a few years ago. Very very strange feeling. I have the colored lines across my field of vision. Like starbursts of rainbow colors…beautiful, but really creeyp, lol.

  18. Thom says:

    Your first picture I recognized the moment I saw it. It’s not QUITE what I see, but darn close enough. Mine seem to be a combination of scotomas–I start to not be able to see things I’m trying to focus on, but if I look elsewhere they’re visible again.

    I used to get them more often, but coicidentally or not, they diminished in frequency from about one a month to one or two per year about the time my doctor put me on Niacin for my cholesterol. I’ve not heard of any medical proof that it helps, but I swear by it nontheless. I still take Niacin every day even though recent studies have suggested it doesn’t make any difference with cholesterol.

    I do feel fairly fortunate, though, that mine aren’t nearly as debilitating as what others get. After the aura stage I mainly just have a bad headache and I can function if I need to. It’s better if I can go take a nap for awhile, but it almost never sticks with me longer than the next morning.

    I’ve never seen a doctor about them, and your description is the first I’ve seen that matches what happens to me closely, so I was relieved to see that it’s not just me.

  19. Ronda in Ohio says:

    Hey, I just had my fourth migraine with an aura last night. I have primary progressive MS. This kind of creepy thing happening is just like you described. But before my zig-zagged color wheel on the side of my vision shows up, I first have that blank spot you talked about… that’s how I know one’s coming. I am thankful to the Lord that I do not have severe headache pain along with these. The headache I have after the vision thing are usually not too bad (I pray that doesn’t change). I just feel a welcome relief of knowing I’m not the only one who has to deal with my brain taking over and me feeling helpless. Having this kind of MS is a promise that I will continue to degrade physically. You wouldn’t believe all the things that has effected… my entire life… not much of a life now, and honestly, I am glad to have found your site and post. Not glad you have to deal with the aura’s also, but glad that someone else understands a little. Than u

  20. Rebecca says:

    I am 68 y/o female and just today…this very day….did i find out what was happening to me. I get the colorful scotoma, but only half ( arc). I found out thru my eye doctor, then once i had a name i googled it to find out more. Glad to find out I am not the only person in the world with it.

  21. James says:

    wow, freaky to say the least with all the detailed experience that you all have gone through. This just happened to be my first one and it came fast with a vengeance, but no headache or pain, just the visual scatteredness, then confusion and the nervousness chatter of what the heck is going on here followed by a rather dizzy spell that left me confused and a bit shaken to say it true! My sister found the link to this page as I was describing what was going on and I will say…thanks Dan for your input on this rather wild subject!

    James

  22. Wayne says:

    Hi

    I have been suffering from a permanent scintillating scotoma now for 6 months, it hasnt stopped for even one minute, had MRI and ct which were clear, doc has put me on Tegretol Retard, been on meds for 4 months now, still no change, does anyone else here have this permanantley, i feel like i am slowly losing my mind, the scotoma is present eyes open or closed, only slight headaches, i did suffer a stroke 6 years ago, any info would be great

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