[This video, created by the Mayo Clinic, shows one representation of what a visual migraine, or scintillating scotoma, can look like. Not all scintillating scotomas look like this, and they are not always associated with a migraine.]
WARNING: If you have no history of migraine headaches and you experience a scintillating scotoma, you should see your doctor, as this can be a sign of a serious health condition.
Scintillating scotomas are pretty trippy. I’m glad I had read about them before one ever happened to me, or I might have been very concerned the first time I had one.
For people who have migraine with aura, there are other physical symptoms that go along with the excruciating headache. A migraine is NOT just a “really bad headache” – it is a neurological event that can manifest in many different ways, such as cognitive impairment (brain fog) or dysfunction (unable to remember words); numbness, weakness, or tingling of body parts; balance and coordination problems; nausea; vomiting; fatigue; sensitivity to noise, light, odors, or touch; etc.
Please do not violate Wheaton’s Law and tell someone who suffers from migraines that you “sometimes get really bad headaches too.” But I digress…
One symptom of migraine aura that some people are familiar with is visual disturbances. These can be pretty spectacular. [See some examples here. (No product endorsement implied.)]
Although I have had migraines for more than 15 years, I have only had 4 scintillating scotomas. (In other words, it is not a common part of my migraine aura symptoms.) The last two I have had happened while I was using my computer. They began with slight blurriness – I wasn’t sure if my eyes were just tired, or my glasses were smudged, or something. The blurriness starts out in a very small area, maybe the size of a dime in my field of view (but just on one side).
As I am determining what is causing the blurriness, I begin to notice that it’s actually a small blind spot. And then when it begins to shimmer (usually at the same time I’m noticing the blind spot), I know for sure that I’m beginning to experience a scintillating scotoma.
Again, everyone’s experience is a bit different, but mine typically begin near the bottom of my field of view, and gradually the affected area expands and also moves slowly from the bottom of my field of view to the top of my field of view, then moves so far up that I can’t see it anymore.
I have experienced scintillating scotomas in each eye (they’re actually happening in my brain, but I’m describing the visual representation I perceive), but my scotomas never appear to be in the center of my field of view, or as if they are affecting both eyes at once.
In addition to the increasing blind spot and surrounding shimmering, I typically see jagged, zigzag designs around the perimeter of the spot. My last scotoma was more bold geometric shapes than zigzags. This portion of the image is colorful (reds, blues, greens, yellows), whereas the shimmery part is white/silver.
People who experience scintillating scotomas often describe the shape as a “backwards C.” And I have had scotomas shaped like that. But I think the shapes can vary. My last one seemed more circular, with the shapes all the way around it, rather than just on one side.
The scotoma itself is not painful, in my experience. Of course, it does disrupt whatever you are attempting to do visually. (I had my first one right after sliding behind the steering wheel of the car one day – just sat there at the side of the road until it passed.)
The first two I experienced only lasted 10-15 minutes, but the last two have been closer to a half hour. I find that I can see them better in the dark, and they’re really entertaining to watch (I guess I’m easily amused), so I now go into a dark room, lie back, close my eyes, and watch the show.
Of course, I typically get a raging migraine headache afterward, so I also take my migraine treatment medications at the beginning of the scotoma experience. That’s trippy too – try walking through your house to get to your medicine cabinet with a blind spot in your field of view and possibly some balance issues too. Then try finding your meds and taking them when you can’t really see what you’re doing due to an enlarging blind spot.
After a scintillating scotoma, some people get migraine headaches, some people don’t get the headache every time, and some people feel very weak or tired.
After the event, my vision returns to normal, although everything may seem a little blurry for a little while right afterward. Since it’s actually happening in your brain, there are no effects on your actual eyes.
During my most recent scotoma, the headache actually started during the scotoma, and my tinnitus got very loud as well during the scotoma, but then decreased significantly afterward. After the shimmering part and the colored shapes had disappeared, I still had a blind spot for about 5 minutes. Then some general blurriness, and then my vision was basically normal, although I was very light-sensitive due to the migraine.
Again, blind spots can be caused by other things, such as a retinal or optical nerve issue, so please talk to your doctor if you experience a scintillating scotoma, or a non-scintillating scotoma.
But if you experience scintillating scotoma as part of a migraine prodrome, you can probably just take your migraine treatment drugs, relax, and enjoy the show before the headache begins. That’s been my experience, anyway.
What have your experiences with scintillating scotoma been like?
It’s actually relieving to hear someone who enjoys watching it happen. My first visual disturbance happened 3 years ago, when I was 24. Thankfully, my boyfriend and best friend were around when I started to panic and say that I “couldn’t see their faces anymore” and that instead there was this “weird fractal self-collapsing claw that was slowly growing into my vision”. They were a little horrified by my lovecraftian description of the thing, as they had never heard of scintillating scotoma either. The one that came after that was maybe a year and a half ago, it was less disturbing, as I was used to it (and I remember the claw being smaller that time around, too.
The last one I had was yesterday. That one honestly triggered my buried anxiety.
I was alone at home, trying to measure the distance for a curtain rod. My hands were up high, with the measuring tape. Looking up, I started getting a rushing feeling to my head, very similar to a pressure change. There was an instant halo of headache around my skull. I put down the tool, wrote down the measurement, took a tylenol and sat back down at my computer. And there it started. The scintillating claw of doom crystals. At first, I took a deep breathe. “Okay, we’ve been through this, just meditate through it and you’ll be fine.” But when the shape reached my peripheral vision, it started spreading around upward, enlarging the claw and its dreadful fractalness. My heart started beating faster, I was nauseated. And then it started waving. That’s when I almost lost it, haha. I had to concentrate so hard, and dart my eyes around to blur it. It had never /moved/ before. And there it was, ondulating in my vision like a death snake. As per usual it ended about 20 minutes later, leaving behind a mind melting headache. I had to call someone and talk, and I was barely able to think or formulate words after the matter.
I often notice a pressure change when I look up. And although it (obviously) doesn’t always lead to scintillating scotoma, it still gives me pressure all around the head. I’ve seen my family doctor about this, had a CT Scan of the head (which only revealed a tiny calcification on the inner side of my forehead), and an MRI of the neck and general area (which only revealed a herniated disc in my mid-upper spine, between my shoulder blades). So far, no conclusions to be had, apparently. So hopefully, this is no death omen, just a very non-euclidian experience.
Gaya,
Sorry for the delayed response. I have been dealing with some health-related major life changes, as will be revealed shortly on this blog.
I can see (no pun intended) how a scintillating scotoma could be a very anxiety-inducing event. I consider myself very fortunate that I had already read about scintillating scotomas before I ever experienced one myself – it would be a frightening thing to experience one and not know what was happening or why.
If you continue to experience anxiety when you have scintillating scotomas, you might try some of the breathing exercises I recommend in other posts. I have found them very helpful during some rather painful medical procedures.
Since one of my earliest and most intense symptoms of migraine was powerful vertigo, scotomas seem pretty tame in comparison (to me). The vertigo has been so intense at times that I have lain on the floor and tried to convince myself (logic arguing with perception) that it was not possible to fall off the floor and go flying into space.
However, as you indicate, scotomas are just one of the symptoms that can occur with migraines. Assuming that other possible causes for the scintillating scotomas are ruled out (for example, my initial work-up included ruling out inner-ear problems, since I had vertigo), head pain, pressure, transient aphasia (https://migraine.com/blog/migraine-symptoms-transient-aphasia/), cognitive dysfunction, and even a sense of foreboding (https://migraine.com/blog/weird-symptom-a-deep-sense-of-foreboding/) would not be uncommon as migraine symptoms.
I think it’s fascinating that your scotomas didn’t move the first two times. I don’t think I’d find them nearly as entertaining if they didn’t change while I was “watching” them. Are your scotomas black & white or color? Mine are a combination, but predominantly black & white with bold geometric patterns.
In addition to Botox injections as a migraine prophylactic, I have found it very helpful (after nearly two decades of trial-and-error) to treat my migraines as a symptom of histamine overload and to medicate accordingly. HOWEVER, there can be multiple causes for migraines, and it is essential that you determine whether your symptoms are due to migraine and, if so, what is triggering your migraines. I have one friend who can tell when her migraines are due to mechanical issues, and she treats those migraines by having a chiropractic adjustment. There are some very good migraine resources available online. If you do receive a diagnosis of migraine, I would encourage you to explore them.
I would be very interested in hearing how your journey progresses. And know that the next time I experience a scintillating scotoma I will medicate and then entertain myself by evaluating how “lovecraftian” it is. 😀
Crew Dog