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scintillating scotoma

image from myaspiebrain
Nothing like experiencing a medical condition first-hand to really help a doctor understand it from the patient's point of view.  After all these years, I had my first (and hopefully last) scintillating scotoma while sitting on the couch playing "words with friends" on my ipad and watching TV.  A scotoma is a partial loss of vision in a normal visual field.  Scintillate is flashing, sparkles.  Put them together and you have moving, flashing sparkles with a blind spot in your eyes.

This visual aura was first described in the 19th century  by a Dr. Hubert Airy who had migraine headaches.  The visual sparks and flashes are in a zig-zag pattern and they can precede a migraine headache or occur without any pain.   The scotoma affects both eyes and closing one or the other does not make it go away.  Sometimes the term "ocular migraine" or "retinal migraine"  are used to describe this phenomenon but these involve only one eye, not both.  The terms are often used interchangeably but they are not the same.

The cause of these migraine auras are not understood.  Only 20-30% of people with migraine headache experience them.  The visual defect occurs not in the eyes, but in the visual cortex which is located in the back of the brain in the occipital lobe.

My scintillating scotoma lasted about 15 minutes and it took me awhile to figure out what it was.  I went outside and gazed into the distance and it persisted.  I closed one eye and then the other and it was still there.  I never got a headache or any other symptoms.  Then it just went away.

The next time a patient with classic migraine with aura comes in,  I will have a better understanding of the prodrome before the headache.  I hope I don't have to experience the entire headache.  I could do without that.


Scott said…
I’ve been suffering from scintillating scotoma since I was about 15. I am a 51 year old man. Migraine headaches accompanied them in my youth but not as an adult. I have been tracking them the last few years as they have increased from a few a year to every few days - infrequently two or three a day. Since the first of this year, I have experienced scintillating scotoma 34 times.

In scanning these posts, I found interesting the number of people who report scotomas migrating to the left and out of their vision. Mine always move to the right. I am predominantly left handed and wonder if that could explain the difference.
Ian Wardell said…
Scott, have you tried to identify the triggers i.e what it is that brings them on? I'm averaging about 8 episodes a year (for past 5 years or so) so it's difficult for me to identify these triggers, but for definite exercise is one of them. I also strongly suspect eating smoked mackerel and kippers. Also I think, thus far, I've only ever had these scintillating scotoma on an empty stomach. Also worrying about my long term future might also be a trigger. Finally, I kinda suspect 2 or more triggers might have to occur together before bringing on the SS.
Anonymous said…
Ian, I lost the bookmark to this and am just now seeing your comment. I have not tried to identify the triggers. I would not know where to start. I drink coffee daily, for example, but do not experience scintillating scotoma every day. I intermittent fast and eat a clean diet. I eat the same sorts of things regularly, and am doubtful there is a pattern between foods and these episodes.

I used to think it was triggered by backlit devices. Usually I am looking at a computer or phone screen when these occur. But on the other hand, there are plenty of times I do these things and don’t experience scintillating scotoma.

Anonymous said…
I've been searching the Net for over a decade related to this and while I've found many sources I've never stumbled across this thread before, and this looks to be the most useful of all. I'll add my data point. I'm 63, male and I had my first event of this maybe 15 years ago. The first time I was so terrified I thought I was having a stroke and called 911. By the time they got around it had subsided and I sent them away. That day I had two -- one a C that expanded out to the left and then a reversed C expanding out to the right. Since then there's no pattern I can find. I think I've gone years without any. Then suddenly a cluster. More recently there tend to be months between them, though I've had two full duration and a possible one that aborted quickly in the last few days -- the most recent just now. Triggers? I don't know. Caffeine? Maybe. It's hot right now too. Lots of stress but that's typical. Always all day spent at the computer screens with an old eyeglasses prescription. Duration with mine is typically 25-35 minutes but there have been longer ones and rarely shorter. Never any headaches or notable other effects. I haven't been to a doctor in years so I've never mentioned this to any medical folks, but from what I've heard complaining about these usually results in lots of expensive drugs and tests that don't accomplish anything. I have read that there may be an increased stroke risk for people who have these, but even that seems not entirely clear. Overall, there doesn't seem to have been a lot of research put into this at all, but there sure is a lot of misinformation.
Anonymous said…
By the way, I'll add that I've also never seen a pattern in the specifics of the events. E.g., the full duration one a couple of days ago was a C that moved off to the left, the one today was a reverse C going off to the right.
daler said…
As I write I am experiencing yet another SS episode. It both troubles and baffles me that the cause or causes have been completely lost on
the medical community. There does seem to be a lack of curiosity out there, at least among the medical professionals I'm consulting. I have to wonder if it's because the phenomenon affects such a small segment of the population.

I have also been logging my episodes, for a number of years now. Far and away, most of my SS episodes occur mid to late morning (10:30am-12:30pm).

It's pure speculation on my part, but I wonder if caffeine is a contributing factor.
Unknown said…
Hello all! I have had scintillating Scotomas for years! I am now 49 but have had them since I was 24. The first time I was so scared, I was driving and lost most of my visual field with the flashing line or sometimes forming a circle. I have suffered from panic attacks since I was 18, so let’s just say the first episode threw me in panic mode. Since years have passed I do still get them some are followed by migraine some are not. I wanted to share my experience with all of you in hopes to relieve someone’s mind new to this horrible experiences. I find it in both eyes like the doctor said closing one eye won’t change it. The best thing for me has been to just close my eyes and as you close your eyes you can still watch the scotoma doing it’s thing. Eventually I can see it closing off to the right side of my eye and eventually disappearing out of sight. I have found that most episodes last 15/20 minutes but over time I found that once I see it coming on If I take a baby aspirin it cuts the time almost in half and ending without the headache. Good luck to all and try not to freak out! Thanks for letting me share my story
Unknown said…
Hello all! I just wanted to share my experience in hopes of relieving any anxiety for someone suffering. I have had sintillating scotomas since I was 24, I am now 49. I suffer from panic attacks so the first one was while I was driving and it threw me into a full blown anxiety attack. They aren’t always accompanied by a migraine and over the years I have found that once it starts if I take a baby aspirin it cuts the time in almost half. Normally they would last 20 minutes. I find just laying your head down and closing your eyes is better as you can still see the scotoma in your eyes as they are closed. I can eventually see it disappear off to the right. It is very scary if you are not familiar with these horrible scotomas. Thanks for letting me share my story.
Anonymous said…
I first noticed my SS when I was a child. I’m now 60. I had not had any SS from about age 10-12 until about 8 years ago. I have been having severe SS over recent months on a regular basis, sometimes up to 4 SS events a day. I noticed one comment in this blog from someone who though that their SS was related to using Flonase. I have been using Flonase regularly for the last 6 months which does coincide with my SS events recently. I decided to see if there was a Flonase connection so I stopped using it about a week ago. Within 24 hours of discontinuing Flonase my SS symptoms have stopped entirely. I have not had one since I stopped using the Flonase. I had recently read that hormone changes stimulate SS and increase the number of SS events in some people... from what I understand, Flonase is a hormonal medication. At this point I see no reason to use Flonase again. I hope that this information might help someone else.
balance said…
It is wonderful that you have this site to share and learn on. Scintillating Scotoma is frightening if you can't find a plausible reason for the event other than a paralyzing stroke.

I want to add to the blog. I have had these Scintillating Scotomas for 10 years. Sometimes as often as twice a day. The vision is always affected. Sometimes with headache. Sometimes with speech problems. Almost always following the use of E D medications like Viagra or Cialis. I KNOW that this is a causal effect of the ED pills but I choose to take the chance of a problem rather than live without love making. Imagine some idiot choosing sex over vision loss? Has he lost his mind? The answer, of course, is yes he has lost his mind. I am 75 years old my wife is 29. We have been together for over 5 years. We thoroughly enjoy love making and I would not be able to perform as well without the aid of Cialis (actually Tadalafil is the active ingredient and generic name for Cialis).

Anyway, I wanted to possibly put some minds at rest AND invite anyone to share anything they know about this strange and troubling condition.

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