My Experience with Scintillating Scotoma (Visual Migraine/Aura)

I recently experienced a Scintillating Scotoma. Here's what it was like, and what I did to mitigate the symptoms.

For more information:

[Caulkhead]

I remember the first time I had one of those, I was in biology class and told my teacher I can't see properly in one eye. After describing my symptoms she told me I was about to have the worst headache of my life, she was not wrong!

[BellaRainDrops]

I'm stunned by how accurately you've managed to recreate the Aura, it's spot on, First time it happened to me I thought I was having a stroke, it was so frightening.

[gailolson]

Yes, that is exactly what the experience is like, although I never have headaches afterwards.

[michaeljackson]

My partner had a head injury when he was young and has had these almost daily ever since. I have tried to support him as much as I can over the past 7 years but seeing this really made me realise what he's actually going through. So thank you, for heightening my empathy. I wish there was more study on migraines. It seems to be a poorly understood and treated phenomenon.

[etaoinshrdlu]

You animated a great representation of the phenomenon; it's so hard to describe or show something that's only happening in your own personal head. This is similar to my experience, especially the part about how terrifying the first one was, except that I also get nausea with the headache. Same independently-arrived at treatment regimen, too, although I haven't tried changing focus during. Something to look forward to for the next one!

My triggers are the combination of short-term sleep deprivation, stress and (tested) low blood glucose. I've given myself an ocular migraine from getting up early for something I was worried about, then going home and putting that nervous energy to use digging in the garden until whoops, there goes my vision. (I have executed this exact sequence *twice, * almost as if I were following a recipe, so I felt pretty dumb the second time.)

[escapetime]

That's an impressive depiction of the visual effect, which I occasionally get but without the headache. In my case it's not severe enough to stop me reading, and usually fades away in half an hour or so, but the twinkling crescent shape off to one side is pretty much exactly what it looks like. I'm not even sure what circumstances bring it on; maybe tiredness but I'm not always tired when it happens. It's reassuring to know that it's nothing to worry about.

[AUSJK]

I’ve suffered with this since my late teens, usually getting a couple a year. I’ve found that as soon as I notice the disturbance of vision, or lack of as I also get that initial strangeness followed by a missing section of vision, putting on sunglasses can really help lessen the extent and duration of the migraine. Not sure if that will help you or not but definitely worth trying. My usual approach is to get into the darkest room of my house whilst wearing the sunglasses and just sitting reminding myself that this is temporary and nothing I need to be worried about, and that getting anxious about it will only make me feel worse. That and some painkillers so far has been my best option, mine usually last 1-1.5 hours but with this approach I’ve managed to get them down as low as 40 minutes. Keeping calm and keeping your blood pressure down seem to make a huge difference. I hope this helps someone, I know it may sound like common sense but initially the fright of this happening sends rational thought out the window and it’s easy to forget that this is only temporary and not anything to get worried about.

[JagoHazzard]

Many thanks for this. I never get the bright pattern, but the "blind spot" in the centre of vision is very familiar. I've not found any treatment that works other than rest. Eating and drinking seems to make me feel a little better, but that might just be because I'm doing something other than feeling sorry for myself.

[martinwyke]

I had a series of these several years ago during a period of high stress. I'd never experienced or even heard of it before and the first time was quite scary so I went to A&E. They were concerned it might be a minor stroke and I was sent to a neurologist. I was fortunate and don't get the migraine head ache and eventually came to sit back, relax and enjoy the 'show'.

[spicychickpea]

My sister recently got one of these for the first time, and she was terrified and really upset. Once she figured out what it was, she felt a lot better, but we were all really worried about her for a bit. I'll be sharing this video with her in case she gets anymore in the future, thank you for this video!

[nannymouse]

This is fascinating! And very useful information for those who might experience this and don't know what it is. Thanks for sharing.

[bexp]

You my friend are a legend these are perfect instructions, my mother will love the fact that someone else knows these tools work. Thank you many people will benefit from this info.

[Toebex]

I was always way too scared to look up what this was in case it was some form of early something-or-other, this video is not only a huge relief but came at a pretty perfect time.

[randomlifeunit]

Wow! The visuals you put up, and progression of the scotoma, is exactly how it looks for me! I love being able to "see" it somewhere other than in my head. So great! Thank you!

[mdus.trollns]

Thank you for making this. I have basically these exact symptoms and have struggled to describe them well. I've also through trial and error landed upon almost the same strategy of dealing with it. I got a prescription for sumatriptan but it seems to work about as well as ibuprofen. I also get nausea and dizziness with the headache which makes closing my eyes feel even worse, so I still tend to watch or read something on my phone, just in a dark and quiet room with the brightness and sound turned as far down as possible. It also means my work day is pretty much over.

[aaaarchy]

I've had this for years and years, and no one has ever given me this name. I've talked it through with two eye doctors, my primary care, and many other folks. It's mind blowing to me that none of these people had the name for it, or even associated it with my admittedly unusual migraines (they don't seem to follow the expected patterns). Now I have the words for it AND a video to go along! I usually just stop everything for an hour or three when it happens - there's not much else I can do, and the headache doesn't arrive until the next morning.

[Elise-yupe]

Omg you've illustrated something that I've never been able to describe

[zorgonak]

Thank you for this! I've had this happen a few times and it's always been very concerning. Knowing that it's more of a temporary malfunction is very reassuring. Also, as others have said, you got the visual representation spot-on! I was amazed.

[svarun]

Thank you for sharing this experience. I never usually comment on Youtube but this is the one exception, I want to share my experiences with migraines with aura;

When I was 14 years old, I hit my head really hard during summer vacation on an open window still, it bled and everything. For the next 3 days, I had 3 consecutive migraines with aura. I had never had them up until that point, so it was a really scary experience for me. Over the next few weeks, their intensity kept decreasing, until a few years later I would only get them about once a year. Nowadays, I only get them when I'm extremely exhausted, such as after a long flight (I travel long distances every summer), or after a grueling workout.

My migraines are almost identical to the way you describe them in your video, and in fact I believe that the visual representations you provide in the video are excellent for conveying the visual aspect of how it looks. Apart from the visual symptoms, I usually experience a loss of ability to speak or understand for a brief period of time, moving numbness in my arm, leg and/or face, vomiting and very painful pounding headache. Interestingly, this only occurs on one side of my body/brain. Whenever the left side of my body is affected, the right side of my head hurts, and vice-versa. That is just a confirmation of the theory that one side of your brain controls the opposite side of your body. Interesting how the human body works...

I believe the proper name for these types of migraines is "Ocular Migraine". As far as I understand them, the way these migraines work and the reason that all these strange effects occur is because of a hormonal imbalance, that causes a wave of increased neuron activity to travel across your brain, starting from the very back. In fact, the reason that the visual symtpoms are the first to be noticed by people who experience this type of migraine, is because the very back of your brain is the center for vision. As the neuron activity wave moves across your brain, you will start to sense unusual activities and/or effects on other parts of your body. As mentioned, for me it includes inability to speak or understand language very well, and numbness. It is extremely fascinating how I can personally feel the neuron activity wave, as the numbness always starts in a certain part of my arm (the thumb finger), and then proceeds to move up my arm, all the way to my face sometimes. I would almost describe it as a ring around my arm. In fact, historically, people with these migraines were used to study what parts of the brain perform which functions, it is an extremely interesting (and painful) subject of the human body.

Thank you for this video, and keep up the good work on your channel!

[hollygumballs]

I had one of these a few weeks ago and thought I was going blind. I have one right now and stumbled across this video after some panic googling and this perfectly describes what’s going on, thank you!