Scintillating scotoma (Part 2)
Thursday January 1, 2004 – 10:05 amUpdate: Comments are closed on this post; the discussion continues on this newer one.
Tonight (=last night) I had another ocular migraine, the first one I’ve had in three years. I was driving; we were on our way to the store, stopped off at the money machine and there it came. It was pretty mild in comparison to others I’ve had… only lasted about 15 minutes and was only in black and white zig-zags, no colors that I could detect. By the time I noticed it, the C-shape "porthole" was wide enough that I didn’t have to stop driving, and by the time we got to the store it had expanded all the way out to my eyelids so I couldn’t see it anymore. It was only in my left eye like always. (That’s my "good eye"… the other eye is totally wacked-out and lumpy with astigmatism.)
I can’t imagine what brought this on now of all times; I’m not nearly as stressed out right now as I have been in the past month or so. I feel as healthy as can be, overlooking the lardass. ;-) And jeez, I’ve had all sorts of stress over the past three years and never got a single SS attack. Maybe my diet’s a little off right now… I’ve had virtually nothing but Mexican food for the past week, maybe I oughta break down and eat a banana or something. Or maybe I was on the computer too long today… the aftereffect was just a teensy headache which seemed more like eyestrain than anything else. I can still feel that, hours later.
Hey, this seems about as good a time as any to close down comments on that whopper of a post from three years ago (Scintillating scotoma), and start up a new one here… that old page is getting waaaay too huge to download in one gulp! There’s also one more post with a couple of comments (Seeing spots again) — I’ll point both of those over here so people will know, and hopefully everyone will resume the conversation here. (I always wondered how many comments you could possibly put on a single Movable Type blog post — I guess the answer is: "more than you’d ever want to download at one time!" ;-)
If you’re new here and/or have no idea what I’m talking about, here’s my best attempt at a short explanation: A scintillating scotoma is a type of migraine, a (usually) painless headache that happens to affect your vision in strange ways. The problem is not in your eyes, it’s all in the brain, in the visual cortex or whatchamacallit. When the attack happens, you’ll get a dark or blurry spot in your vision. The spot is usually only in one eye but may be dimly visible in the other as well. Over the course of the next 15-45 minutes the spot will expand into a larger shape, like a circle or an arc, or a pointed caret shape. The shape might be just blurry, or it might shimmer in a zig-zaggy pattern, with a hole in the middle where the vision is normal. The zig-zags might be flashing in black and white, or they might appear in very brilliant pulsating colors. Eventually the arc-of-zigzags will enlarge until it disappears outside your vision. You might feel a little funny afterward, maybe a slight headache or feeling of spaciness. At least that’s how it happens for me. And more than a hundred other people have commented with very similar descriptions… my weblog is such a teensy corner of the internet that I can only assume there must be millions of people out there having ocular migraines, whether they know it or not.
As you can imagine, these auras can be really unnerving if you don’t know what’s happening! It’s like a hallucination that won’t go away when you close your eyes. For me, it took a long time to put a name to SS or even realize that it isn’t a normal thing everyone experiences from time to time. I’m sure I’ve had hundreds of them, and guess I was young enough when they started that I pretty much grew up thinking it was a perfectly ordinary thing. I always assumed it was happening because I’d glanced at a bare lightbulb, or because I was oversensitive to lights in general. I was prone to getting migraine headaches in my twenties, but back then I never put two and two together, to associate the visual auras with the headaches. I don’t get the headaches anymore, thank goodness.
Anyway, if you want to read further, visit the above links and check out all the comments. Talk to your doctor if you’re still concerned about your health after reading what everyone else has said, especially if you’re having symptoms that don’t match up with the ones we’re describing. But if you’re pretty sure it’s "only" SS, please do tell us your own story and/or give us more info or URLs that might be helpful. I’m sure we’d all love to know more about what’s causing this phenomenon, and what if anything we can do to prevent it. Unfortunately nobody seems to have a sure-fire answer to that just yet… but hey, at least we know we’re not just seeing things! :-)







January 5th, 2004 at 9:04 pm
I use to get migranes once in awhile years ago. Lately I have been getting them more often. It starts out with a little distrurbance in the middle of my sight and grows into a big zig zagg with flickering colors. I take avabro for high blood pressure and since I have been taking it, the auras are more often. My blood pressure is 138/80. Maybe I don’t need the medication. I notice a disturbance in my digestion and colon. Like too much acid in my system. I know bright light sometimes triggers one or flickering light and stress of any kind and getting over tired. I really think that the colon has a direct connection with migranes also. If I take OPC’s it really helps because they cross the blood brain barrier. I had stopped taking them for a few months and migranes increased. I am back on them. I also wonder about the blood pressure medication also. Some thing is triggering them I feel. I feel acid forming food help trigger migranes also like milk, wheat bran, certain vegies broccoli to mention a few. They scare the daylights out of me. I did draw a picture of the auras and later saw a picture of one that looked the same as mine. Sometimes I get the headache or just a dull one and sometimes not. I hope they are not related to stroke. I am 60 years old but also got them while I was much younger like in my twenties, thirties ect. Migranes run in my family. I hope I was of some help.
January 6th, 2004 at 1:12 am
I have had 3 days of SS out of the last 6. I am keeping my fingers crossed that today will be a good day. This is the first time that I have had SS’s so close together…they usually had years between occurences. I should say that one of the 3 days I actually had the headache, but the other two were pain free. I am a breastfeeding mother, so I am sure that hormones are playing a role. Something that has been bothering me is that between incidences, I feed spacey and disconnected. I haven’t had an SS for nearly 48 hours, but I have been feeling extremely sensitive to light. I feel that if I look at even the faintest light and then close my eyes, I see the image for a while…almost as if the light were blindinly bright. Reading black & white print is bothersome, so as this computer terminal. Have you ever been outside in the bright, bright sun and then come into your darkened house and had trouble adjusting your eyes to the darkness? That’s how I’ve been feeling since my last SS. Just can’t feel normal. I haven’t seen a neurologist yet, as I can’t get an appt. for 2 weeks. I have gotten a lot of comfort from this website, as these incidences are truly frightening while they are happening. And also when they are not happening, I am sitting in wait for them to occur. Boy this sucks.
January 7th, 2004 at 8:29 pm
Man … I am soooo happy to be here!
I love and feel with you all!
I am a 33 year old female who had my first SS approximately 1 year ago. The frequency of these are alarming. I didn’t have a name for it until I read all of the threads posted here, but I did do an internet search on "flashy light syndrome”… needless to say, it came up with hundreds of hits saying it is a side-effect for a anti-depressant drug. I don’t take them, but did briefly take Wellbuterol (sp?) to quit smoking. I temporarily freaked out thinking I’d been "poisened"! My first thoughts when this started was my job (I am a computer programmer) and we actually worked for a week with the lights off thinking that would help. I have never gotten a headache following my aura and it has happened several times while I was driving and I don’t have trouble concentrating on the road (no loss of vision…. just annoying!). I was in a car wreck 6 months ago and ended up with a pretty intense concussion and unfortunately that didn’t "cure" it. (I was kinda hoping that might be a positive effect!). Anyway… I just wanted to say thanks for having this site… I just spent 30 minutes reading the old threads and finally printed them off for further review at home. I think that I am going to start a diary just to see the frequency of them. I probably get 2-3 per week for several weeks and then nothing for a month or so … a vicious cycle. I guess for those of us with no headache pain, we can be thankful!
April
St. Louis, MO
January 9th, 2004 at 7:49 pm
i have posted a couple times, i have not had an attack(as i call them) since june. my 18 year old daughter now has them. i went to the eye doctor yesterday because i now have a problem with floaters in my eyes, i was wondering if anyone else has this problem too? i have had the ss problem for 20 years.
January 11th, 2004 at 9:52 am
Hello to you all, and thank you Edith for making the effort to research and support S/S victims.
My first episode was when I was around 20 y.o. I’m now 47, and they have been a regular occurance of my life. Just about every doctor I have seen has related the S/S to migraine, and recommended "dropping" one thing after another.
To avoid triggers I have dispensed (over time) with fish, chocolate, wine, spirits, cheese, manufactured meats (hot dogs, salami, etc), milk, Chinese Food and any other possible MSG carrier, most food items with flavour enhancers, and the list goes on.
The S/S continue, and I’m wondering if it is all wothwhile to allow losing the enjoyment of so many wonderful things in order to avoid something that no-one seems certain of understanding or controlling.
One day, with research, I’d love to learn just what is the most common cause (genetically) of scintillating scotoma. Some, like me, tend to treat it as a "sentence". Following each attack, I feel so lousy that I vow to give up anything and everything that may contribute to another.
I’m so glad to be discussing this with people that know and understand this unique disease.
Michael.
January 11th, 2004 at 12:44 pm
To Linda: I’m not sure how you classify "floaters", but I do frequently see objects moving around the lens of my eyes. I’m not sure if they relate to ocular migraines or s/s, but such is the sensitivity of S/S sufferers, there is almost a paranoia when any part of the vision is obscured or interupted by somehting appearing to be abnormal.
Sun or light spots are a constant annoyance…looking out of a window only to be blinded by a flash of light or the Sun’s reflection.
This is a guarantee of an imminent scotoma.
What are the floaters you refer to? Does anyone else have such experience?
January 11th, 2004 at 12:54 pm
I notice floaters sometimes. Mine are translucent little hot-dog or circular shapes, sometimes connected to each other. Looks like something you’d see in a petri dish under a microscope. They’re probably always there to some extent, but I hardly ever notice.
January 12th, 2004 at 12:25 am
my floaters are caused by age (or so my doctor says)he says it is caused by the vitreous gel that may start to shrink as we get older, causing clumps or strands inside the eye. the viterous gel pulls away from the back wall of the eye causing a POSTERIOR VITEROUS DETACHMENT he said the floaters (which for me are lines and spots that i see when i look from side to side)
are something i am gonna have to learn to live with. i have one big one in my left eye, that he said may finally sink to the bottom of my eye. i sure hope so because they annoy me so bad epecailly when you go outside on a cloudy day.
January 14th, 2004 at 12:35 am
This is the first link I hit after searching Google for "blurry spot in vision" My symptoms are pretty much exactly as described above. I just got one of these as I am sitting in front of my computer. This is the third one in probably 5 years. Very strange. I was quite alarmed when it first happened, thinking it was eyestrain from staring at the computer. I suspect that might be related as I have always been staring at a computer screen when it happened.
I am somewhat relieved to know it is fairly common, although I will look into further having found this site. I also have quite a bit of floaty stuff swimming around in front of my eyes. When I had laser surgery the doctor said not to worry about it unless I had cascades of them obscuring my vision.
January 14th, 2004 at 4:01 am
I’m a 47 year old male who has "suffered" from migraines for about 35 years. Over the years, the typical course of my episodes has changed quite a bit.
Early on in my history of migraines, the first perceivable symptom was always flittering or scintilating scotoma. Usually one eye was affected but I can recall bilateral episodes where the affected area appeared in different areas of the field of vision for each eye. The scotoma would begin as a small spot and gradually expand to encompass the entire field of vision before going away as abruptly as it came.
The second and third stages of my migraine were equally classical. After the scotoma subsided, I’d get a crashing headache followed by nausea, mental confusion and other typical migraine symptoms.
As I got older, I became aware that an oncoming migraine was signaled by an "aura." Typically, the early auras I experienced were feelings of grogginess and irritability. In the past 10 years or so, my auras have shifted to feelings of unfounded elation. Usually, the aura episodes last about 5 minutes before the scotoma starts.
About 6 or 7 years ago, the basic characteristics of my migraines have taken on two very distinct patterns. Most often, I have an aura, then scotoma for about 20 mins, after the scotoma subsides, the aura shifts to a dopey groggy kind of thing and may last an hour or so after that. I rarely have pain any more and never get nauseous.
The second track is a more recent development and considerably more frightening. About 6 or 7 years ago a new type of aura evolved. This type can best be described as thousands of "deja vus" all happening at once. I am unable to remember names, phone numbers, passwords, and similar things. I remain alert and aware of what is going on around me…able to hold conversations, etc. This aura lasts 20 minutes and may be followed by a headache and irritability. Another aspect of this second type of episode is sensory seizures. Typically these seizures involve perceiving odors that are not there…usually odors like bread baking. They also manifest themselves with one sided tingling or crawly feelings on my skin. Another is the feeling that my right sock is wet and there is water between my toes, but upon inspection, my foot is dry. One manifestation of the seizures is almost funny. One day, I was standing on a street corner in downtown Chicago and I felt warm liquid running down the outside of my leg. I was convinced that the guy standing next to me was relieving himself on my leg. Of course, there was nothing amiss.
Over the years, I have had all manner of medical exams in an effort to diagnose what I was experiencing. MRIs, CAT scans, EEGs, blood tests, ultrasounds, etc, etc, etc.
The bottom line has been: migraine. The last neurologist I was treated by went a step further to diagnose them as "complex migraines."
What triggers my events? Most often, it’s a change in my sleeping habits – usually too much sleep (if that is possible). If I sleep more than 7 hours, I get a migraine. Other culprits are chocolate, wine, and processed meats. Processed meats will quite often trigger the second type of migraine.
Over the years, the docs have prescribed everything from ergotrate to beta blockers. But, to be honest with you, plain old asprin taken just as the aura or scotoma commences is the best medicine.
I’m not sure what the point of my post is here other than to tell some of the newbies to this situation that they shouldn’t worry about what they are experiencing. Sure, it can be disconcerting, but it won’t kill you. You have to learn your triggers, and know what you are physically unable to do during an event. Don’t drive or do close work like brain surgery LOL.
Certainly you should see a doctor at the outset so that you can rule out tumor, MS, type II diabetes, stroke, or other serious problem.
The biggest enemy you will face is your own anxiety. Don’t let scotoma or migraine change your life. If you do, this phantom disease will, for all intents and purposes, kill you.
Now that I’ve lulled you all to sleep…
January 14th, 2004 at 5:41 pm
This is the first time I have come across anything like these postings and I’m happy to know that I’m not alone. I have been a painful migraine sufferer since I was a child. My first episode with loss of vision and zig-zags was in college. I thought it was caused by looking at the sun because right after I did, I started losing my vision. Then my left arm went numb. I totally freaked out and called my mom and she took me to the doctor. By the time I got there the vision was back but I got the crushing migraine pain and it lasted for two days.
Ever since then I have had episodes with auras 2 or 3 times a year. I’m now 30 and this year after the birth of my second child and starting grad school, I have had them almost once or twice a month. The doctor had me try Imitrex and it made me feel really sick. Lately, I have had a few with an aura, but no pain or just dull pain. They aren’t too bad.
My triggers that I have so far discovered are bright light, sleeping changes (like if I’m up all night with my kids), starring too hard at the computer monitor for too long, and sometimes changes in barometric pressure. I have been on and off birth control hormones during the years I’ve had migraines with no apparent change in frequency.
I’m going for an eye exam in a month because recently my vision has also gotten much worse. I’m afraid something is wrong in my left eye because I have noticed a blank spot that is always there.
It’s a relief to know that this is more common than I thought. Doctors never tell you that.
January 19th, 2004 at 4:34 am
Hello to all. I’m not sure if this type of info is permissible on Edith’s site, but just in case, the following weblink relates to a news article that appeared on an Australian TV http://www.todayshow.ninemsn.com.au/minisite/today/migraines.asp
It covers a wide range of causes, preventions, lifestyles, and general info that has linked people to migraines. It is commonly believed that these items and factors are also linked to scintillating scotoma.
I hope some may find it useful. Michael
January 20th, 2004 at 8:43 pm
Hi all. I too am happy that this site exists because it relieved a lot of fear and anxiety for me. My scotomas started recently, in August, after cardiac surgery. A few years ago, my doctor discovered that my heart was enlarged, and after a few years of watching and testing, we discovered a septal defect (hole in the wall between the two upper chambers of the heart). I’ve had it all my life, but never knew it. Over the years, my ventricles have thickened and the heart was becoming inefficient, so I needed to fix the defect. Turns out it is a good thing I didn’t find it earlier because new surgery was developed in the last few years in which surgeons thread a catheter into the atrium, and push through it a little flexible "plug" (Amplatzer device for anyone interested) that fills in the hole. It was only a 3 hour surgery, I was semi-awake thru it, and the only wounds to heal were incisions to my femoral arteries. Three years ago, it would’ve meant cracking open my ribcage and cutting into the heart. Thank God for medical research.
Anyway, heart cells grew right over the plug and 4 months later my heart has returned to normal size, better than ever. The only lasting effect I have is scotomas. The first came 2 weeks after the surgery, and I was so scared that I went to the ER. That is where I learned the term scotoma, and learned that there really isn’t anything to do about them. I have had them at times daily, at times weekly since then. I don’t get headaches, but I do sometimes feel a little woozy. They started out as full scintillating scotomas – small blind spot that started scintillating, then the spreading crescent, disappearing within 40 minutes. But it is changing. Now I rarely have the progression, just a scintillating blind spot that may move a bit. They come frequently, a few times a day, and can occur any time, and anywhere in my visual field. And now I’m getting occasional floaties that swim by. I have talked to my cardiac surgeon and a neurologist and they can’t figure out how cardiac surgery could cause this. Unless, the neurologist joked, they left a sponge in there and it made it’s way to my brain. Ha ha, that wasn’t too funny to me.
So the lastest is that I am going for a brain MRI to make sure there isn’t a clot (or a sponge) in the brain vasculature. I am not too bothered by all this anymore – it is such a minor affliction that really doesn’t affect my day to day life, nor prevent me from doing anything. I mean for a while, before the doctors found the septal defect, they didn’t know why my heart was enlarged and started using words like "transplant". So this is not so bad. And for me, since there was no change in my daily habits before and after surgery, I am not going to try changing diet, eliminating activities, etc. Hopefully I will not develop headaches. If so, then I will work on eliminating these episodes. Until then, I guess I’ve accepted it as part of me, like having blue eyes and thin hair.
January 23rd, 2004 at 2:49 am
Hi Everyone,
Thanks Edith for giving everyone the space to post. I found everyone’s post very interesting.
I had my second SS experience last night and today decided to look it up and see what people had to say about it. This second episode seems to have a possible trigger caused by Chinese food which I ate last night and was feeling pretty stuffed and gassy so I took some antacids. Was watching a DVD when suddenly noticed some interesting flashing lights to the left of my vision. One was a hexagon shaped double black and white zigz zag pattern which gradually grew and merged into the other flashing zig zags to create an arc that eventually curved over the entire 14′ length of the room. It eventually expanded and disappeared out of my field of vision in about 20 min. Didn’t see any colors though it was a nice geometric pattern (I am an artist too LOL) Sort of Native American I thought. Wasn’t fond of the strobe effect. Could see it with both eyes although it was located over the left and could see it whether the eyes were open or closed.
Still have left over Chinese food so I will be curious to see if it occurs again. Had some Chinese food for lunch and noticed a little pulsating light on my right field of vision but then I used acupressure on the trigeminal nerve on the right side of my face and it stopped immediately. (Had Bell’s palsy about 12 years ago which is a virus that inflames that nerve and causes a temporary paralysis to one side of your face. Usually lasts about 4-6 weeks and then subsides but may leave some residual defecits. I have an occasionally shooting pain from that nerve to the jaw causing a 40 second spasm which is relieved by using acupressure so it was interesting to note that it seemed to stop the pulsating light.
The first ss experience I had was last summer going from bright sunlight into a dark room. That was blue flashing lights that subsided in about 10 min.
I wondered about the cause of the problem and thought it might be related to some genetic eye problems I have with my corneas and retinas. Despite these eye problens I have very good daylight vision. In reading about the blind spot I did not really notice that since the room was dark and I have night blindness anyway caused by a genetic retinal eye defect called CHM or choroideremia. Women with the disease usually are carriers but have some night vision problems. Men are not so lucky and usually go blind by age 60 if they have the disease. The corneal problem is called map, fingerprint, dot dystrophy and means that the top layer of the cornea has a more jigsaw puzzle pattern surface rather than a smooth surface cuased by the cells not seamlessly adhering to each other. Occasionally some can fall off causing a corneal abrasion but that usually doesn’t affect vision. So with my eye history I figured it was some weird eye phenomena caused by one of those problems.
Since they now seem to have a migraninal cause I will be sure to report any more Chinese food effects if that should occur.
That’s been my experience so far.
Kathy
January 24th, 2004 at 3:01 am
kathy
funny you should mention the chinese food.my last SS occured last june, right after coming home from a chinese resturant?
Linda
January 26th, 2004 at 1:00 am
Hi,
I’m 34 and have had two of these episodes in my entire ilfe. One in about 1991 -ish (which i didnt realise was an "ss" because I was actually on LSD at the time LOL), and the last one on 12th nov 1999, which really freaked me out cos I thought I was having a stroke or something. Anyway both these occurances have one thing in common in my case – extreme stress. When I was on LSD and experienced one it wasnt the drug that brought it on, it was the fact I got into a fight and was knocked sparko. I was unconcious in the dark for about 20 secs but at the same time was aware I was unconcious and thought I was gonna be killed by this nutter (LOL its funny when I look back on it). When I came round I noticed this weird thing in the corner of my right field of vision, has anyone seen a mandelbrot set? one of those fractal patterns that when you zoom into it is the same pattern repeating itself – well thats what i saw. It lasted about 20 mins but you try coping with that when your out of your nut on LSD bwahahah :). The last time I was playing a computer game and was getting very pissed off cos I couldnt get past the end boss, then noticed this thing growing in the corner off my left eye – Lo and behold it was my old friend the SS. After 20 mins it went away but I was left bewildered as to what the f*** I had just experienced, fearing the worst – as this time it definately wasnt LSD induced. Anyway my point is this, in my case the only triggers I felt were extreme stress, which I believe caused the blood vessels in my visual cortex to swell, compressing the neurons within. Have a look on the net for how the brain processes visual information and you will understand why these ss patterns are like they are, different parts of the visual cortex process different aspects of vision, such as diagonal lines or horizontal lines, colour etc and the various degrees between the two. These neural processing centres lie very close to each other so when a localised blood vessel swells it will compress many different parts of these visual processes simultaneously, causing these weird patterns.I eat chinese japanese u name it – nothing triggers mine so dont put it all down to this n cut out all your favourite foods lol. As for floaters these are totally unrelated and are just as stated before anomalies in the vitreous fluid that is in your eye. SS is just one of those weird things that can happen under the right circumstances, if youve had one it doesnt mean you are prone to getting them and may never have one again…well I havent touch wood! Oh yeh avoid LSD also hahahah….
January 26th, 2004 at 11:32 pm
Hi Linda,
I did notice that a lot of the posts referred to eating Chinese food which is why I mentioned it too. Interestingly enough the leftovers really did not trigger any additional ss episodes so I am conjecturing that the first days meal was the spiciest creating more gastric upset so maybe it was more the gas than the msg that caused it causing some type of temporary vasoconstriction triggering the ss. That’s my current theory anyway:)
Kathy
January 27th, 2004 at 12:35 am
I experience SS about once every 2-3 weeks, and have done so for many years. Mine are never associated with headaches, as they are for many people. I even keep a record of them—date, what I was doing, which eye, duration, severity, time involved, brightness, etc. The only pattern I can make out is that mine are caused by (a) light extremes, such as going from relative darkness to a bright computer screen, or going outdoors from a relatively dark house to a bright sunny day, etc, (b) bending over for a few minutes, such as searching a lower shelf–then straightening up, and (c) lately I noticed they seem to follow consuming caffeine.
I suggest keeping records, or at least being very aware of what may have triggered the scotoma—then avoiding the cause, and sharing any apparent causes with readers.
My opthamologist seems to play down the importance of ss, especially when there is no migraine or other side effect, as is my case. Obviously, they cannot be too serious for most people. I kind of find them fascinating, and when they start, I am very aware of their shape, colors, brightness, duration, and especially mentally note where I am and what I am doing (or what I have eaten) they may have caused them. Let me know if anyone can associate them with factors or foods other than what I have mentioned (I have read than monosodium glutamate, which is common in Chinese food, can cause them, but I wouldn’t know, as I dislike Chinese food).
Good luck to all, especially those who have migraines with their SS—gosh, that would be terrible!
January 28th, 2004 at 11:56 pm
I am 14 years old and i get migrains at leas 4 times a year. first when my migrane starts it looks like a wierd flickering silver spot in my right eye. it grows larg enough so i can only read the first ltter of a word on a paper. when that goes away about a half an hour later the pain hits. that lasts for a bout 2 hours than stops.
January 29th, 2004 at 12:32 am
I just have had my 3rd SS. Once last week. Once yesterday and once today. Very frequent. All 3 happened at 8:00 in the morning and lasted about a half of an hour. I happened to come across site. I get no headache..nothing. Just the bright lights and then the semi circle arc of bright lights. Why is this happening????? I called an Opthamologist today and made an appt but can get in until March. Should I be concerned?’
January 29th, 2004 at 12:35 am
Hi ya’ll! Like so many others. I’m comforted in finding this site. My s/s began last summer. At first I thought I was having a stroke, I ran and took an aspirin. Next time I was reading a paperback, thought maybe I needed glasses. I had probably eight of them between Thanksgiving and Christmas. I went to an eye guy, nothing remarkable there. Went to my internist who asked if I’d gone off my Zoloft. I told him yes, and so in his opinion that was the cause, I didn’t think so. I was only taking 12.5 mg a day anyway. I thought maybe it had to do with me trying to give up caffiene, guess not since it happened the other morning after a cup of joe. I have an appt with a neurologist on 2/24/04. just to make sure it’s nothing serious. (I hope) Just seems strange to me that I’d begin having such a strange thing at 38 years of age. My internist thinks its stress/anxiety related, maybe so, but Zoloft can’t cure everything. Edith, Thanks so much for this site. It’s so good to know I’m not alone. Have a great day ya’ll.
Carolyn
January 29th, 2004 at 4:22 am
i have just found you miss frost and this ss you describe is disturbing to say the least.
Have you tried sand?
There are many overrated solutions to your particular problem but the one i have found most useful is living on a beach and digging my toes into the sand every morning and every evening watching the sun rise and set respectively.
Since i have taken to this life of enriched nothingness all my issues have faded away with that evil state i was always in, of course i am talking about stress.
The stock markets of london to the beaches of northern australia, there is no better cure for all those ailments you suffer from.
I’m not just talking stress but greed, guilt, ambition and lonelyness.
We can all live the live we want for our children just make it happen.
January 29th, 2004 at 10:22 pm
Do any of you guys use aspertame as a sweetener? What do ya’ll think of the possibliity of "aspertame poisoning? I’ve been reading alot about it, but you know maybe those folks are just really radical. I’m trying not to be paranoid and keep an open mind.
January 30th, 2004 at 4:01 am
After 40 years of having optical migraines (no headache) — probably about 600 of them (both eyes, 22-25 min. duration, royal blue + orange zig–zags, and pretty ordinary in size and behavior) I now have something happen that is a bit scary that I just took to a super opthalmologist and he couldn’t answer. At 6:00 pm Jan. 4 one of these optical migraines started, and got stuck, and has not gone away. It is still an arc hanging there, just off-center, no change these 26 days. Makes reading a bit messy but otherwise I am dealing with it. Any one have any (scintillatingly) brilliant ideas?
January 31st, 2004 at 10:25 pm
48 yo female
I have had a few SS in the past without headaches, i have no problem with any type of headaches. My opthomologist passed them off as not a concern. The other day i had a doozy SS that lasted about 15 minutes (bright, zigzaggy lines, visual disturbance) I was shopping with a friend (having fun, no stress). The reason i write is regarding the comments about Chinese food. I had Thai food about 5 hours earlier…. never thought of this connection before. Interesting. Thank you for this site.
February 1st, 2004 at 3:28 am
Oh, what a relief to find this site.
Like SC in NC, I had an amplatzer device put in about a month ago. I saw another post of someone that had some titanium put in his heart, maybe this could be part of it(?). So when I found out about my heart defect I quit smoking. Now reading your posts, I am going to have to give up my much loved Diet Coke, too. Like many here, I do think caffeine is making them worse. Bright lights, too. And to answer someone’s question, occasionally I feel like I’ve lost coordination, feel tired, or just generally dumb around the time I have the SS. Activity makes mine worse and I got really mad the other day – woah! I couldn’t see anything.
This is causing difficulty, I have been having these daily since the amplatzer was put in on January 6 and I cannot stay on the computer long – they often precipitate the attacks. I have a pretty constant problem reading text on the computer or even on a page… this is pretty weird.
SC in NC, I would love to hear from you – or anyone else with a device in their heart. It’s either due to that or the increased blood pressure I have, now that my heart’s working right (was 105/65 before, now runs about 120/80). Please contact me – I use yahoo and the first part of the address is annworkman.
Edith, bless you for this site. I have been keeping the SS a big secret in hopes it would go away – I am so tired of going to the doctor. Does anyone have any good ‘cures’?
February 2nd, 2004 at 6:38 am
Bobcat – what you have may be migraine aura status. I’d check with your regular physician or a neurologist about your symptoms.
As for me, I have been a migraine sufferer since the age of 12. I am now in my mid-20′s. I love researching the phenomenon and this page is terrific. Sometimes I go months without them and other times, I will get 3 or 4 in the course of a week or two. I used to have the migraine headaches following the s/s more frequently and still have them occasionally, but more often have the silent migraines with the s/s only. The s/s often alternates sides from one event to the next and when I do get a headache afterward, I frequently experience it on the opposite side of my head from the s/s. The other thing is that I will sometimes feel out of it afterwards when there is not a headache- as some of you have noted as well. I can also tell one is coming from mood swings, weird sensations, etc. On very rare occasions – about a handful of times – I’ve had two s/s events in a day.
My triggers are similar to those already listed by other posters – aspartame, MSG (when there’s a lot of it), caffeine-withdrawal, barometric changes, hormonal changes, bright lights (especially glare off of water and snow) and changes in sleeping and eating patterns. I am most fascinated by the hormonal changes – because of the risk some doctors associate with the s/s and the Pill (namely increased risk of stroke), I am currently using a modified form of Natural Family Planning/Fertility Awareness for birth control. My s/s happens consistently around the same parts of my cycle, even when the length changes. Also, while I was on the Pill, I was rarely affected by the s/s – presumably this is because my natural hormones were suppressed by the drug.
Others in my family have experienced migraine with s/s, so I can only assume genetics played a role. My mother’s pattern seems similar to my own.
BTW, I also have floaters in both eyes! It’s so interesting to see what commonalities we all have beyond the s/s.
I have found magnesium (Slow-Mag specifically) to be helpful in decreasing frequency and severity. I take six tablets a day, or about 400 mg.
If any of you haven’t read or browsed through "Migraine" by Oliver Sachs (the same author of "Awakenings”) I highly recommend it. Good luck to all of you in enduring this!
February 2nd, 2004 at 4:42 pm
I never had floaters until the SS started – about a month ago. By floaters I mean tiny luminous dots that move across my visual feild quickly. Maybe they’re related?
Some of you have been to a SS specialist – did she/he have any good suggestions other than avoiding triggers? I am getting these almost daily and it’s affecting my ability to work (when I get on the computer, the screen flickering starts an SS a lot of times). Anyone else have these as frequently? Did you end up stabbing yourself in the eyeball in frustration? ;)
I will try the magnesium, thanks for the tip, Mare11.
February 3rd, 2004 at 6:42 am
Thanks for having this site. I’ve had the scintillating scotoma since I was in my early 20′s, and I’m now 49. My dad had the same thing. I remember him mentioning an article about it in Scientific American magazine when he described it to me (probably in the early 1970s). A few years later I started to experience it also, but could never remember the name of it. I’ve searched the internet for some clues a couple of times in the past, but finally, today, I found your site, which seems to have more information than any other. I was never too concerned about having these, since I did remember my dad saying that it was something that happened in the brain. Mine don’t come too often (at the most once a year) and I’ve never had any pain or other uncomfortable feelings along with it. I have suspected that stress or fatigue contributed to it, but wasn’t always sure. After reading some of the other posts, I feel thankful that mine are very innocuous.
February 5th, 2004 at 12:21 am
I have had classical migraines since I was 18 years old…I am going to be 48 this year…a long time! For about 6 years now I have had what I now know is ss w/o headache. Just about everyday I have some kind of visual experience..usually a silver flash that produces a blind spot. I feel that I am having a nervous breakdown because of this. I was going to make an appointment with a Neurologist once again (I haven’t been back to one since 1979) but then found this wonderful site and, after reading all your comments, I am feeling pretty confident that "I am not dying". Although I still do feel like I am having a nervous breakdown, having to combat this "demon" on a daily basis. It must be absolutely wonderful to be someone who can live their life w/o experiencing what we know as scintillating scotoma.
Lois
February 5th, 2004 at 7:22 am
The longest I’ve gone without an SS for the last month was one day. I stopped drinking caffeine and stopped consuming aspartame 4 days ago and haven’t had a single episode. I hate to jinx it but I think this is really working.
February 8th, 2004 at 6:19 pm
Hi Guys, My neuro appt is approaching and I’m getting really scared. Went to my Gyn appt last week, I was told I’m perimenopausal, Ha ha, at 39! Talked to him about my s/s, he’s afraid they may actually be TIA’s. His nurse suggested some form of epilepsy. None of these sound good. Just wondering if any of you guys smoke? If you did and quit, did the s/s stop? How have ya’lls appts with neuros gone? I guess my anxiety is getting the better of me.
February 9th, 2004 at 10:01 am
Hi-Thanks for the site. I have learned more here than my Docs have told me. I have scotomas followed by flashing chains of B/W triangles. Only last 15-20 min, no big problem. I wonder if anyone may have mentioned any memory problems either after or at other times. I have had an attack of TGA (transit global amnesia) where my brain stopped making memories for about 1.5 hrs. I gather that S/S is really a brain problem rather than ocular and I just was curious if anyone had mentioned amnesia in connection with S/S.
……thanks……….. Jim (age74)
February 9th, 2004 at 12:40 pm
What a fascinating forum.
I have discussed S/S with many people that are unaware of the problem, and recieved almost no response, and little real interest.
It is a fascinating dissorder, and the input from everyone is providing hope and interest to fellow "sufferers".
Jim…I have not heard amnesia mentioned in any other reports of S/S occurances, but so little is known about the scotomas that it is impossible to rule anything out. My diet has changed dramatically, I wear sunglasses 90% of the day, I avoid Chinese food, and take a steady dose of various vitamin supplements daily. The total result…blah! I have an incident of S/S almost fortnightly, often followed by a blazing headache and mild nausea!
I would love to see something definitive. A book, a research paper, a medical journal?
Edith’s site has enabled a genuine open forum, and I am extremely grateful. All of us have the same desire to find out what it is we are experienceing, and how can we prevent it?
I would truly welcome a definitive answer…if there is one.
I’ll begin research, and welcome the same from others. I don’t think I’ll die as a result of Scintillating Scotoma…history tells me that. But I would not like to die wondering.
regards,
Michael.
February 9th, 2004 at 1:10 pm
Hi, sorry for my english but I’m writing from italy and i’m italian.
I’m very happy for having found a site like this..it’s important to know that I’m not the only one.
I suffered migrain since I was child but I had never had S/S .
In the december of 2002 I had my first attack (similar a moving scintillating zig zag lines in an half of my eyes..both). Than nothing till april 2003.Than nothing till last tuesday. Since that day I’ve had an attack every day or more, sometimes with pain sometimes with nothing.
I have had a visit with a neuro and He told me it’ s probably a migraine with aura.
I’m worried…It’s normal have five attacks in a week after a period a 10 months?
Could you help me?
Thanks!
A great embrace
Davide
February 10th, 2004 at 8:38 pm
Hi,
I have read carefully through all the comments in Page 1 & this Page (2) and I have only noted the following contributors saying that they have any kind of permanence to this thing.
Posted by Tess on July 4, 2003 05:54 PM
Posted by hedgehog on August 1, 2003 09:07 PM
Posted by Karen on September 16, 2003 02:50 PM
Posted by Janette on September 17, 2003 10:14 AM
Posted by Mark on December 18, 2003 12:20 AM
I post this because I have had an SS for about 5-6 weeks now 24×7. Its there all the time. I do not have a painful headache/migraine with this.
My ophthalmologist has just told me that it is nothing to worry about. But I am not quite happy – because other medical articles + most peoples experience is that it should go away after 30 minutes ish.
Is there anybody there that has found anything on the web about �permanent� SS?
Thanks in advance.
Dave
February 10th, 2004 at 10:21 pm
Dave-
I don’t know enough about SS to say, but I think you should request an MRI if you can afford it. Most of the posters here don’t have a constant SS. And since your opthalmologist ruled out retinal detachment, you should rule out brain problems just to be sure.
Cutting caffiene has decreased my SS from one per day to one every 3 days. Anyone here have heart implants? If so please contact me
annworkmanAT yahoo
February 13th, 2004 at 5:53 am
Dave,
How long has the ss persist? I went throught at the testing and found nothing. Usually this type of ss takes months or years to go away. Mine took 2 years to completely fade out.
February 14th, 2004 at 12:45 am
First, thank you so much, Edith, for making this space available for us to communicate with each other and maybe start to solve the problem. The doctors sure don’t seem to be getting very far — obviously, no doctor has the problem.
Second, thank you, Mare 11, for directing me to search for "migraine aura status" for discussion of these irritating phenomena that last for months. By the way, I just saw that Google picked up your note that suggested I look for that topic, Wow!
Third, Dave who posted Feb. 11, – you missed some, including me, who have an aura that "got stuck" and hasn’t gone away, what I now know is called "migraine aura status."
The few of you who do have this long-lasting type might be amused to know that it is not listed by the International Headache Society apparently "because the commitee members were unaware of this condition.
Keep posting what you learn, everyone – and welcome to our new friend, Davide, from Italy.
February 15th, 2004 at 9:49 pm
I’m glad I came across this forum. The first time I had an SS has to be when I was in college, in 1993. It has been extremely intermittent..and I have probably had 6 or 7 episodes since…so it averages less than 1 SS/per year. I had one today, and was almost certain a headache..or migraine would follow, but surprisingly, it didn’t. The way I know it will start out is I will be trying to read something, and then it’ll be hard to make out the words. Soon enough, the shimmering lights will follow. Sometimes a headache will set in, but often not. It could be a glare thing, or a sensory overload in the occipital lobe…I don’t know. What are everyone’s thoughts on this?? Should I see a doctor for a cat scan or MRI?
February 17th, 2004 at 8:33 am
Hello Dina, and welcome.
As you read through the comments on this sight, you will notice 2 things in particular. 1. Everyone that suffers from scintillating scotoma has different degrees of extremity. 2. There is no single solution or known cure.
I would recommend a visit to the doctor, but the usual response is "pain killers" and/or "change your lifestyle". In my opinion, one of the best solutions is constant referal to Edith’s Website! This is where I have learned more about S/S than any book, doctor, journal or neurologist.
Anyone considered a Global Support Group? Edith Frost as Patron? I believe it has merit. With numbers, we could encourage a formal research program into the disorder.
Best to all, Michael.
February 18th, 2004 at 1:21 am
Hi everyone. I just discovered this site, and just today learned that what I’ve been experiencing my whole life is actually scintillating scotoma. It’s really striking to read so many descriptions that fit so perfectly with my symptoms.
I’m 27 years old, and have had an SS episode 3-4 times per year for probably ten years (visual symptoms, no headache). It’s always on the right side, and mainly impairs reading and other detail-oriented tasks.
Each time it happens, I’ve tried to think back to what I’ve done or eaten recently to narrow down the cause, and the one thing that seems to be always present is lack of sleep. Whenever I have an SS episode, I’ve had less than six hours of sleep the night before.
I consume caffeine, chocolate, cheese, and MSG all fairly regularly, so who knows how much those contribute as well. Perhaps now that I know about it, I’ll change some habits. I’ve never liked aspartame because it tastes like poison to me (maybe my brain was trying to tell me something).
Anyway, thanks to everyone for your stories. I feel better about it now that I know what’s going on, and I’m now confident that (to quote the governor of California) it’s not a tumor.
February 18th, 2004 at 3:37 am
Hi.. Glad I found this place… comfort in numbers, I guess. I had first s/s when I was about 20, scared the crap out of me.. I thought I was dying. My very kind optomolgist reassured me it was bacially a migraine with no pain. The next one I had was a year later. And then I think I recall having another 2 years after that.. but then I had not had one at all until last weekend. I am 44, and have NO idea why all of a sudden this would just start up again. I, of course RAN to eye Dr.. and he did a very through exam.. and told me what my previous Dr had said…s/s. so.. I was elated came home.. happy it was just a painless migraine and figured I wouldnt have another one for at least a year. however I got one 2 days after the first. Even tho the Dr assured me it was a benign albeit annoying and scary condition, I cant help but worry. I guess my main questions are:
1. has anyone had a long period of absolutely NO s/s, to have it suddenly appear again after 20 years?
2. How do we really differeniate between a s/s and a TIA?
3. I know everyone’s ‘triggers’ are different.. but I am curious about how caffiene can actually ALEVIATE headaches/migraines but also CAUSE them?
I guess exactly HOW a Dr can differentiate between a s/s and a TIA is what is worrying me so much. CAN they really tell JUST with a thourogh eye exam?
Any HELP/ADVICE is so appreciated.
February 18th, 2004 at 6:50 am
Well, I have had one of the worst days of my life. This morning I awoke and noticed a grayish spot on my ceiling…kind of like when you stare at a light too long…but this one started moving. It was mostly in my left eye, but when I closed that one, I could kind of see it in the right one too, just in different places. Anyway, it started getting worse…it was like a seeing a fan in my peripheral vision but there wasn’t one…just squiggly movement (kind of black and white) that moved into a (semi)circular pattern around the center of my vision field. I became terrified. I jumped up and tried to decide what to do. Finally after about 10 minutes or so, it faded away into a sort of filmy whiteness and was gone. I went to the opthamologist immediately and every one (receptionist, nurse, doctor) said it was an "ocular migraine". I did have a mild headache, but not what I would ever classify as a migraine. Anyway, they all acted like it was no big deal..he checked my eyes and said they were fine, but I am not. I am terrified. What is going on? This can’t be normal. Now I am living in fear of when it will happen again. I am 27 years old, mother of two small children and in excellent health. I feel somewhat silly for reacting this way to something that was so shortlived, but I need to know that I am not going crazy here.
Has anyone ever had only one episode? Does this mean I should expect this in the future? Am I dying? Some help would be appreciated.
Thanks!
February 18th, 2004 at 7:03 am
Jana, by your description it really sounds like the same thing we’re having. Please don’t worry so much, you are not dying!! Well, eventually of course, but SS is not going to kill you. I feel for you, I know how scary it can be when it’s happening and you have no idea what’s causing it. Glad you found our little cubbyhole and hope you get some useful info here.
February 18th, 2004 at 5:11 pm
To Scared…
Since I am so scared myself, I am hardly one to be giving out advice. However, I do know a thing or two about TIA or mini-strokes (just from obsessive internet purusal) and I don’t really think that they produce anything very similar to S/S. It is more of a loss of vision in one eye rather than a movement or flashing lights, etc. ALso, there would be other symptoms resembling stroke such as numbness, slurred speech, etc. I also think that having another one so soon is actually evidence that they are s/s. It would be unusual to have two strokes causing the exact same isolated symptom that close together…in my opinion, anyway.
Thank you Edith for your post. I do feel better knowing I am not alone. I slept restlessly last night, expecting to awaken to the same thing, but didn’t. I won’t be surprised if it happens again, I am just glad it hasn’t so far.
Good luck to us all!
February 18th, 2004 at 8:50 pm
The zigzags started about three years ago, occuring about once a month or less. They began with a small greyed-out area in the middle of my field of vision. This was followed by the arched shaped zig zag lines (black and white) They move accross my field of vision in waves. They form near the center of the eye and then move to the right out of sight…to be followed by another arc that forms and then goes off to the right. They gradually form closer to the right edge of my vision and eventually go away. I have timed them and 19-20 minutes is the duration.
They have become more frequent. I have had perhaps ten in the last month. My doctor is not alarmed, but I am starting to be. I don’t mind the episodes, I simply sit down and wait for it to be over, but I don’t like the dull headache that follows, and the washed out feeling that lasts for several hours.
I am having trouble reading small print…my eyes want to jump from line to line. I am 72…healthy…walk 2miles a day. Active in my church and community. Do I need to do more sitting and less doing?
What is the role of stress in this whole business?
Phyllis
February 18th, 2004 at 11:36 pm
Hi everyone! I found this website yesterday after finding out that I had an SS ‘attack’. When I was in high school, the corner of my right eye would go dark or ‘blind’, and I would see stars (bright spots) flying by my head. It really looked like that flying stars screen saver! I never knew what it was; I just figured it was stress. I’m in graduate school now, and yesterday I had one of the scariest things happen to me. I was sitting at my computer, and I noticed that I couldn’t see some of the words on the screen. There were just blank spots in my vision. I thought something was wrong with my contacts or something! Then I noticed a really bright, wavy line in the corner. It was very colorful, with red, purple, yellow…you get the picture. That had never happened to me before. I decided to go home and take a nap. After driving home, which, yeah, that may not have been such a good idea, I walked to my room to let my dog out of her kennel. My right arm went completely numb in a matter of less than 20 seconds. I completely freaked out! All I kept thinking was, "I’m having a stroke or something!" Well, I drove to the student health center, and my doctor asked if my head hurt. He told me that he was pretty sure that I was having a migraine with aura. Ok, when I think of migraine, I think of someone who can’t get out of bed or open their eyes because of the pain. My head really wasn’t hurting bad, so I questioned him. I didn’t know that a migraine could cause one of your limbs to go numb. I had a head scan anyway, which came back normal. My doctor asked me if I had been under a lot of stress; I was thinking….hmmm, I’m a grad student in engineering…stress is a daily part of my life right now. I went home and did a little research. When I came across this website and read the posts, I was comforted by the fact that others have had experiences very similar to mine.
I recently went on a diet (Weight Watchers…not a fad diet), and I completely quit drinking soft drinks. I’m from the South, and I even quit drinking a lot of sweet tea…can you believe it!? This past weekend, I consumed a good bit of diet dr. pepper (not caffeine-free, I might add), and the vision problems and headaches came a few days later. So, I think it may be safe to say that caffeine and stress are my two biggest triggers. I’m supposed to keep a headache diary, so if I come across anymore ‘triggers’, I’ll let you know.
I do have a question for everyone. My doctor gave me some medicine to take at the first signs of vision problems. It’s supposed to allieviate the headache pain. It’s called Maxalt, 10mg orally-dissolving tablets. It’s supposedly just the opposite of an anti-depressant. Has anyone else used this or heard of it?
Thanks!
Mandy
February 19th, 2004 at 1:50 am
Mandy
You quit sweet tea? I am from Alabama, and I can’t seem to break the "habit." It is my one addiction. I swear, they ought to make a patch or something…
I take an anti-depressant. That wouldn’t have anything to do with this would it?
Jana
February 19th, 2004 at 5:17 am
This morning at work, I was suddenly frustrated by a disturbance in the center of the vision in my left eye. At first I thought it was the halo effect from looking out the window at the snowy scene outside, but the spot didn’t clear up, but became more pronounced. It also took on a shimmering, flashy appearance, with iridescent colors and a zigzagging texture. I couldn�t see anything in that part of my field of vision � it was rather like trying to look through obscure glass.
Anyway, the spot gradually took on the shape of a crescent moon, getting larger and moving higher and further out into my field of vision. As it did so, the motion that was associated with it became more pronounced, and took on an almost watery quality, like the reflection of the sun on the surface of a lake when the wind is blowing. And then it was gone.
While this was happening, I was really freaked out, and fascinated at the same time. I did an Internet search and found this page that clearly described exactly what was happening to me. WHEW! I took some ibuprofen immediately, as I am susceptible to migraines. I still got a mild headache and had an overall feeling of malaise that kicked in about an hour and a half after the vision thing, but feel like I dodged the bullet of getting a full blown migraine. I am 42 and have never had anything like this happen before. I am clueless as to what could have triggered it.
February 20th, 2004 at 5:52 am
HAVE ANY OF YOU NOTICED YOUR PUPILS PULSING OPEN AND CLOSED DURING YOUR SS EPISODES? I plan to see an opthomologist asap, but in the meantime, I’m comforted by reading your experiences. Thanks for maintaining this blog. Would not have thought about a possible relation to migraines otherwise. I was finally freed of my awful menstrual migraines when I had a hysterectomy over a year ago. I had tried IMITREX, MAXALT, FROVA and others with only some relief. I was and am also on meds for high blood pressure, high cholesterol, thyroid cancer suppression, and depression withour any side effects. Never had SS with my migraines before and didn’t have headache pain today. For about 40 minutes I had an angular crescent shape refracting part of the field of view of both eyes. Kind of like looking through a cracked glass window. At first I just thought my reading glasses had broken. I had just sat down with a hamburger and cup of coffee. Have used aspartame in my coffee for years. Don’t know that I’m allergic to anything, including MSG. When I looked in the mirror, both pupils were pulsing like that and continued pulsing even after the the SS went away for a few hours. My husband took me to a clinic and they suggested I go to an emergency room next time so the opthomologist on call can see me during the event.
February 21st, 2004 at 4:55 am
Hi…
Just wanted to join in the fun! Today I had my second s/s thingie. I had no clue it had a name untill ten minutes ago when i stumbled on this site. How amazing! My first one happened when I was driving…freaked me out. Today when I had the second one I began to wonder if i was about to have a stroke or aneyurism. Todays s/s was followed a few hours later by a horrendous migraine. I have suffered migraines all my life but not these s/s attacks. If they werent so scary they would be quite a neat display. For me, it starts with wavy lines on the outter edges of my field of vision… kind of like the ‘vapors’ that come off the road in the dead heat of the summer. Soon it turns into a curved C shape that resembles the colors of an oil slick floating on a puddle. This blocks the outter edges of my vision… almost like when you stare at the sun and go into a dark room. Its freaky as heck. Seems to last about 10 minutes or so. If someone could tell me they werent harmful…. I would sit back and enjoy the light show. But it worries me that its a stroke or worse… and I really have to talk myself down sometimes LOL
~shauna
February 22nd, 2004 at 1:54 am
I am 46 years old and just recently started having these wierd sensations. I’ve been experiencing migraines for about 3 years now and I’m pretty convinced they are hormone related. In the past few months I’ve been having these things that make me feel kind of sick to my stomach and tingling on one side of my head or the other. My vision is also blurry but not colorful or geometric that I can tell. I also have these deja-vu things were I feel like I see people that I know but can’t remember who they are or their name. It feels like it only lasts fo a brief moment but leaves me feeling sick to my stomach and tired. I don’t always get a migraine following it. I am not sure if this is an SS or not??? I also take thyroid medicine and Lexapro.
February 22nd, 2004 at 7:00 pm
Mandy,
my doctor gave me the same medicine, maxalt 10mg orally-dissolving tablets . Also for me it’s supposed to allieviate the headache pain….but I really don’t know…
As I have said in my last post…I have never had migraine with this type of problem…one last year and a lot this febraury..the last one (or better the last three) today after a period a calm (ten days) followed by an horrible migraine.
I really worried about it…tomorrow I will do a RM (in Italy we called it Risonanza magnetica I don’t know what is the term in american) but my doctor said that I don’t worried about it because the only problem is a migraine…
I would like escape from this strange and horrible situation…
thank you edith for the opportunity of thi forum!
Ciao
Davide (from Italy)
February 24th, 2004 at 10:09 pm
Hi all, Had my neuro appt yesterday, he "thinks" migraine equivalent, but is sending me for an MRI, MRA and MRV next week. I’ll post the turnout. Scary Stuff. My thoughts are with us all.
Carolyn
February 24th, 2004 at 11:59 pm
This is amazing. I had my first ss a couple of nights ago. I had just finished a four mile walk and I noticed my rental house had a black light bulb in the fixture. I walked down to my house and came back with a regular white light bulb. It took me a while to change it…..about 5 minutes or so. I went home, did a load of laundry and took a phone call in my home office. As I talked on the phone I stared at the computer screen for at least 10 minutes. When I hung up the phone, I lost vision in my left eye. All I could see was a black hole with little colored light surrounding the bottom of the hole. I turned on the light and that’s when I noticed I couldn’t see the top left part of the computer screen. I sat there a minute "playing" with the notion that I was going blind at 38. I went upstairs and told my children that I was having trouble seeing. I couldn’t see their faces…..weird. After 10 minutes of that, I started seeing the wavy lights in a huge circle to my left. I called my husband, who works at a hospital. It was suggested that I come in and get checked out.
Long, long story short. It was ss. I did develope a dull head ache over my right eye. I’ve had these "eye" headaches before, but I marked them up to be sinus headaches.
My neuro doctor thinks it has to do with HRT’s that I take. I had to have hysterectomy last year and I’m on Premerin 1.25 mg. She seems to think this high dose of hormones triggered it. My GYN is lowering the dosage.
Has anyone else taken HRT’s and experienced this? I also thought I was having a stroke….you name it. Scared me to death. I have certainly found this site helpful.
I had another ss this afternoon followed by a dull headache. I think I’ll start a "aura" diary and see what maybe triggering this. I’ve had three in a row.
Karen
February 26th, 2004 at 3:41 am
My first SS happened about age 26. I am not on any HBP meds, I am a careful eater and in pretty good shape. So I strongly believe my SS episodes are primarily due to stress and/or sleep deprevation. My worst period of time is when I was out of work for 3 months. Frantically looking for work and running out of money, I was getting SS’s about every 3 days. The classic 20 minute colored coronas, light headache then back to normal – really annoying when you are try to watch a movie. Incidently, I actually had an SS in a movie theater on a blind date – that was a quite a mood-killer. Dramatically, once I was working again the SS occurances dropped to maybe one in six months. Before I found this site, I had no idea it was so common.
Cheers,
David
February 29th, 2004 at 9:29 am
I am so glad I found this site. Have just spent a couple of hours reading all the posts and found them fascinating. I just had my third SS in 15 years or so today. This is such a frightening and bizarre event, but I never had a name for it before and, just to know so many others have the exact symptoms is some small comfort.
I don’t remember much about the details of the first episode other than being scared to death. The zig zag lights came on very suddenly in black and white. (I don’t know if it was one eye or both.) I have never had migraines in my life and am a healthy female (65 years young) and not on any medication of any sort. I hardly ever take an aspirin. I do take vitamins and supplements, however.
About a year ago I had the second episode (about 14 or 15 years after the first one.) This occurred out of the blue while driving. It seemed to be in the right eye and it looked like I was seeing triangular flags waving in the breeze out of the upper corner of my eye. (Like the flags they use at car dealerships to advertise their sales.) But when I looked straight on I realized there were no flags. It lasted about 15 or 20 minutes. I did think it might have been triggered by a strong sun reflection I had experienced a few minutes earlier.
Today I had the third episode. This occurred while I was reading a newspaper in a grocery store. All of a sudden I couldn’t read the paper. Letters were blocking out and I couldn’t seem to focus right. Then the zig zags occurred and I realized they were blocking the letters and moving around. Finally they moved off to the peripheral vision. I was scared and wondered if I was having a stroke. It seemed like this was in the left eye primarily. However, I closed first one eye and then the other and I could see the shapes in both eyes. I did drive home and had no difficulty with that. By the time I got home the SS was gone. (About 15 or 20 minutes.) I have no idea what triggered this one. I got on the internet, did a search for "zig zag lights in the eyes" and here I am. I’m so glad to know I’m not alone in this.
One thing scaring me now is that I’m a professional musician and I’m worried that this could happen when I’m playing in front of 500 people and I might not be able to read the music. Guess I have to put that thought away and hope for the best. I’m not planning on running to a doctor. After reading all the posts it doesn’t seem like that’s the answer.
Trudy
March 2nd, 2004 at 7:56 pm
I experienced my 4th ss in the past 9 months just the other day. I went outside where the ground is still snow covered and the sky was very white. When I came back in I noticed I was having a hard time ajusting to the light. About 5 minutes later the ss started in my left eye.( they have all been in my left eye). No colors just the zig zag shape in black/white.I know people say bright light can trigger migraines. I had a dull headache later on, kind of like a sinus type headache behind my nose/eyes. I know I was mid cycle and wonder if it could be hormone related. The day b4 this happened, I had a dull headache also. Mine seem to coorlate with stress. Once in a while I have been feeling very anxious and stressed I had red lines across my field of vision. They only last seconds. Once it was blue. I have had this happen about 3 times but all 3 times I was extremely stressed out. When I think back I have had my share of headaches which I always called sinus headaches. Pressure behind the nose or forhead. Could these have been a kind of migraines?
March 2nd, 2004 at 10:58 pm
Sharon, I think my ss was triggered by lights. I changed out a black light and then went inside and stared at a computer screen. (you can read my story above) About an hour later I had a dull headache. The neuro doc said it was caused by a high dose of hormones. I think it had to do with a sinus infection that I have been fighting for several weeks. Actually…I think it’s a combination of several things.
I had 3 ss within 3 days. I’ve had no re-occurances. After reading all of these posted messages……it looks like I’ll have more.
I’m in the process of lower my hormone dosage, so we’ll see how that works.
It’s all so bizarre!! I really don’t know what to make of it.
March 4th, 2004 at 2:28 am
I’m so glad to see all these postings.I’ve had these lights for nearly four years.I can’t work because of them,they appear a few times a week,though not necessarily with a headache.At times one bangs off inside the ring of another-multiple SS’s.They cause me severe depression, I’ve gone from being Mr Happy-go-lucky to a withdrawn near- agorophobic.I can honestly say that they have changed my life for the worse, I seem to live my life waiting for the next one.I feel that the medicos left me out on a limb as not one of the specialists or consultants I’ve seen ever mentioned the name ‘scintillating scotoma’ to me…..I only found out last year via a USA website!!
Thanks for all the interesting reading.
March 5th, 2004 at 7:43 am
Thank you for such an informative site! I had my first (and only so far – I’m 26) SS approximately two weeks ago. I was eating lunch in the middle of a very stressful day, and the SS started out in the shape of one of those gold stars you got on your schoolpapers as a kid.
The star enlarged little by little, and everything inside it was swirly. It sorta looked like the scene at the end of "Tomb Raider" where the semi-see-thru blob is floating through the air. I couldn’t read anything or focus very well. It really started to freak me out, so I did a test to make sure it wasn’t a stroke or anything (I held both arms out in front of me and closed my eyes…during a stroke I’ve been told that one arm drops after you close your eyes even though you think you’re holding both up.)
That checked out OK, so I just waited it out. Although I could see the SS with both eyes, even when they were closed, it seemed to be more prominent in my right. At the end of 20 minutes, most everything in my right eye was swirly, and it looked like there was a ceiling fan going just out of my periphery. I kept wanting to turn around and look to the right because it totally felt like something was there.
There wasn’t any pain associated with my SS, but I still drove to my eye doctor just in case. He confirmed it to be an SS and said that he has experienced a few in his life…usually around times of stress.
Anyway, I was relieved to read these posts, and I appreciate everyone for sharing their experiences!
March 6th, 2004 at 4:44 am
Hello! I have visited this site many times now, and I am so happy I’ve found it. I am from Norway, so please excuse my "bad" English….
I had my first s/s 10 years (I am 52 years no) ago, and it scared me to death…At first I thought there was something in my eye, and I rubbed and washed it. This was in my right eye, as it allways has been ever after. It started out as a small, blind, yellow spot, just as if I had been dazzeled by a lightbulb. Then it changed into a semicircle that grew and grew, and after 20 min. disappeared out in th right side of my field of seeing. I saw no colours, or black and white – just yellow bright, flimmering lights. I went into a dark room, and hoped that this would remove my seeing scintillating lights, but they appeared even more obvious in the dark. It was scaring…and I allmost paniced.
During these 10 years I have had probably 7-8 attacks of s/s, and allways in periods when I am feeling very stressed and have emotional problems. I did not have them in periods when I was feeling "lucky and satisfied." From 1996-2002, I had not a single episode of s/s. This last Christmas was painfull to me in many ways, and I had 2 s/s during one week. The first one on Christmasday, and the second on January 2. These were hard attacks, where I felt dizzy and weak afterwards. Since January 2. I have had no s/s, and that feels good!
I am not really sure what triggers my s/s, but I usually get them during autumn and winter. When the difference between light and dark are outstanding here in Norway, and where lightbulbs give the most important light most of the day, when we are awake.
I did not know that this eyedisorder was migrainious, before I read in my encyclopedia in Norwegian a few weeks ago – about "Flimmerskotom". It was here described as undangerous. I have never experienced headache after s/s. I was so happy to read this :-) and felt so reliefed.
Thanks to this site and to everyone sharing their experiences!
March 6th, 2004 at 11:40 pm
A million thanks for your site (no pun intended) that has helped me understand that I’m not alone with this S/S phenomenon. I’m 49 and have been experiencing this off and on for not quite two years now. An aura involving the left visual field will start with a small flashing zig-zag pattern exactly as described by others, which intensifies while radiating outward over about a ten minute time-period. A blind-spot in the left visual field accompanies this. Usually after 15 – 20 minutes or so, the entire process clears and I am invariably left with a generalized headache, sometimes accompanied by a minor degree of nausea. I’ve never resorted to medication as the headache that results is tolerable.
My stress level is generally quite low, I’m not at all overweight and am reasonably fit, and I have a rather mainstream diet that embraces all food groups. I note that S/S’s have occurred on a few recent occasions (including one just a half hour ago) as I’m gazing at a laptop computer screen. However, I tend to doubt that this is the trigger since I’ve experienced them in a car while driving, or in other settings.
Having read about so many similar experiences reported here by others, I can’t tell you how reassured I feel. While something is perhaps neurologically "abnormal", at least I feel that it is not "uncommon" and, like others, I’ll just have to live with it (which should not be too difficult as long as the occurrences remain relatively sporadic).
Thank you all for your extremely informative comments.
March 7th, 2004 at 9:12 pm
Thank you very much for this great information. My name is John and I experience these Scotoma’s
as they are called. I thought I was going crazy because I experience and attack about once a month. I’v had them for about 3 years know and have not known what the they are. This is unbelievable that I finally found a site that explains what these things are and that other people actually get them. I am going to see an
eye doctor again because they have seem to be getting worse. When I went about 3 years ago they were not able to tell me what this attach was. They are very scary because you dont have
any control over this attach of shining light that
because like a clound and blocks your vision. I finally am able to gather up this great info and bring it with me to my appointment.
Thank you
March 8th, 2004 at 11:17 pm
I was just reading dodgyox’s post about his/her disability from this and am scared. Though I find that the more I get angry about it, the more SS I get. I went to the eye doctor yesterday, I feel like everyone’s putting me off on everyone else. This is such a frustrating experience, I’ve had an SS every 3 days for 2 months now. I don’t think it’s being caused by stress but I know that stress is making the frequency increase.
If I drink caffeine, I will have an SS. When I exercise, I often get one. Then I feel washed out and kind of gross afterwards. Sometimes it’s hard to read text, it sounds like others have had that problem too.
I can’t tell if depression is making this worse, or this is making depression worse. I feel frustrated with the medical community – it seems that since this isn’t life threatening or really common, not a lot is being done about it. Last week I went 5 days without a SS. When I got 3 in a row starting Sunday I got really down about all this. I can’t seem to cheer up and wonder if someone could offer some reassurance. Thanks.
March 9th, 2004 at 10:57 pm
First of all, thank you for hosting this thread. Like everyone else who’s discovered it, I appreciate the knowledge it has given me about what this scary thing is that happened to me.
I am a 54-year-old male. I had a mild migraine all day yesterday, which I treated with acetaminophen with limited success. Finally, just before sun-down I boarded a west-bound commercial flight. The day had been bright and sunny, and I was enjoying watching the sun set through the aircraft window. When I drew away my attention from the setting sun and I tried to read a novel I was carrying with me though, I noticed a poorly-defined pulsating distortion of the extreme left side of my field of vision. The distortion seemed to be rolling and boiling, and reminded me of an animated fractal.
It was too distracting to continue reading, so I just tried to relax in my seat, and in a short time, it was gone – and so was my headache.
And now that I’ve discovered your site, so is my anxiety.
Thanks again.
March 13th, 2004 at 12:18 am
Hello – I find this site very helpful. I too have ocular migraines ( I assume this is the same thing as SS?)…I had them infrequently as a teenager ( they started with green flashes and then a severe headache with vomitting) – they went away in my twenties and I didn’t have another one until the second trimester of my first pregnancy. These were the zigzags described on this site lasting 15-20 minutes and followed by a mild headache. They went away briefly after the birth of my child and then came back every now and again. Six motnsh ago ( I am 38), I moved to a sunny area – this is the only thing I can imagine which has changed in my life – and I have these ocular migraines several times a week, sometimes every day and sometimes more than once a day…does anyone else have them this frequently? Last week, I went on vacation and did not have a single ocular migraine. The first day I got back home, I got one immediately.
3 years ago ( after the birth of my child), I had MRI and Eye exams and there were no problems found. I have also been on and off SSRI’s (antidepressants) though I was on these for a long time and never had any of these migraines. I also take 400mg of magnesium and 400mg of B2 daily…I find these often keep these headaches at bay but lately nothing seems to keep them away. I also have noticed that not onloy do I have the zigzags/zebra stripes – but often, when I close my eyes, I have entire visual imprints of the last thing I looked at ( especially windows or mirrors etc…)
Any comments/suggestions/similar experiences would be appreciated..thank you
March 16th, 2004 at 10:58 pm
Hi Guys, I’m kinda responding to Sydney. I’ve had headaches all my life, but had never had an "aura" til last year. I never thought my headaches might be migraines. I never had a headache while I was pregnant, that was when I was 33. I’ve since had a hysterectomy. I’m now 39. I think it must have to do with fluctuating hormones or something. I’ve had an MRI, "basically normal", and MRA, normal and a MRV normal. The main trigger I’ve pinned down so far is the aftermath of stress, NOT while its happening mind you, but afterwards, once I’ve relaxed. I probably get 6 – 8 of these a month. Since my neuro doesn’t believe this is lethal, I’m just gonna try to relax and enjoy the pretty, sparkly, lights. Good Luck everyone.
Carolyn
March 18th, 2004 at 8:24 pm
Aspartame in it – mentioned above – and I did not feel well afterwards, followed by SS the following day. Thanks for all the info Sue
March 20th, 2004 at 9:05 pm
Wow. I’ve been having ocular migraines since 1995. I was 24 and pregnant with my second child, and at about 6 months pregnancy, started seeing "flashing lights" and booked it to the doctor in a complete panic. I got them 3-4 times more during the pregnancy, and still get them, almost 9 years later. They change in frequency, I can get them a lot and often, and then go months and months without any. For instance, last Jan., Feb., March I was getting them almost weekly, sometimes twice a week, then I didn’t get another until almost Christmas time. This past week and a half I’ve gotten 3 of them. They usually start as a blind spot and move either to the left or right of my vision, but I can see the lights in either eye, and I can see the zig-zag when my eyes are closed too. It gets bigger and brighter and into an arc and usually lasts about 35-40 minutes. I find I am more light sensitive, in general, since starting to have them. I get after-images a lot easier, that kind of stuff, my eyes just seem more sensitive to light since having ocular migraines. I do take Zoloft (which I went off cold turkey when pregnant, and doctors think that may have helped trigger the OM’s). Anyway, I do notice them more around PMS and such. I usually get no headache or a dull headache on the opposite side that the arc was. Glad to have found this site.
March 22nd, 2004 at 5:37 am
Oh well I had another SS tonight after my previous post i thought id have no more, maybe I shouldnt of posted on here I tempted fate! The last one I had was november 12th 1999, luckily I came across this site in jan so I had an insight into what they are and was prepared, well your never prepared but at least I knew it would be over after 20 or so mins. Wasn’t in the same place this time, it started as a blind spot/anomaly to the left and below my central field of vision. Even though I have only had 2 b4 and one where I knew it wasnt drug induced, I knew this was gonna turn into an SS. i didnt even bother shutting the pc down properly i just turned everything off and sat in the dark. The zig zags were not as pronounced as the last time but seemed to move slower, then the right part of my visual field was screwed up for about 20 mins when it moved across it, and was also blind in that part. Now this is the weird thing. I downloaded some extras for yahoo on pc and one of them was this trippy mouse pointer. I had only put this on today, and I remember thinking how like my last SS it was, and was playing pool on yahoo and staring at this when the SS started. Surely this cant be a coincidence seeing as my SS episodes are 5 years apart. You talk about triggers on here, can the memory of a previous SS when reinforced with the visual appearance of one trigger another? maybe there is more to an SS than just interuptions in blood flow and chemical/stress triggers. Maybe I somehow accessed a deep memory of it which was enough to remind my brain of how it was to play out another episode of SS. Maybe the patterns caused some sort of visual feedback loop or whatever in my visual cortex. I dunno it sounds too far fetched, but im certain the memory of the previous was the trigger for the present one, that reinforced with the visual cues I was giving it. The brain is a mysterious organ. Food for thought methinks…
March 22nd, 2004 at 9:46 pm
Hi, Guess I should of read the previous posts before I posted the last one. This is in response to the post I have just read from Sydney. You say that when u close your eyes you still have the visual imprint of the last thing you looked at? Is this only when you are having an SS/Migraine? I have had this since 1989 and have had many tests done to ascertain the cause. Its continous with me and not migraine related. I was ill in 1989 and ever since I have had this problem with my eyes. MRI’s showed no problems. You say it is mainly with mirrors and windows? thats true because I have this also and that is down to the brightness of the image falling onto you eye. Do you get trailers, or a ghost image of say your arm when you move it across your field of vision? mostly it happens with high contrasting colours like a white mouse pointer on a black screen, like when you turn on mouse trails on the pc only not as pronounced as that, just like a shadow that is following it, but brighter than such. I have discovered that there is only 8 other people in the UK with this condition, well back in 96, its called persistance of vision and everyone has it to some degree, its why films which are a series of still images blend together into one continuous image. The brain takes a while to refresh the image currently being processed, but mine is a bit like a visual echo. But i dont even notice it now its part of me, the freaky tripped out part! Interesting to find someone else with this…..
March 23rd, 2004 at 2:34 pm
This is in response to Steve about my last post…thanks for telling me your epxerience. The visual imprints I have do not necessarily happen at the time of my migraine and I do not get them all time, but I probably have stopped noticing. I just tried raising my arm in front of my eyes – but this did not produce any kind of image or shadow..but this persistence of vision intrigues me, especially the comment that most people have them to some extent…my brain has always been very visual…I seem to retain things, commercials, posters, images I have seen at some point in the recent past, and then notice they flash across my brain later in the day or the week. What I am beginning to realize is perhaps I am just more tuned into my subconscious than the average person…but am also wondering whether that is not related to the SS/migraines and vision persistence.
In the last few days, I have had SS several times a day . I did have an MRI 3 years ago but get anxious about these SS’s. Do I need another MRI? Are these SS really harmless. Often, I just look at the pretty lights too, but then sometimes I start to worry, especially when I get these SS all the time. Thanks everyone…
March 24th, 2004 at 5:45 pm
Hey Sydney!
Glad you read my post, interesting the points you made about recalling things you have seen previous in day/week at a later date, kinda like a photographic memory but u actually see the image flash across your brain, I was asked whether this happened to me when I was having tests done in 96, was asked if I could recall what the person doing his research on me was wearing a week earlier, apparently many people with this can do so. I think its happened to me on occasion, like after the tests were done on my eyes with various test cards, hours later the image would flash across my brain, not a memory, the actual image, kinda a mish mash between memory and vision. With regards to your worrying about the SS, I can tell you this in all honesty, im kinda glad I had another one cos it layed a few ghosts to rest regarding the previous one i had which really scared me because of my ignorance as to what they were. I was surprised how laid back I was during this one haha, but I am fortunate to have only had 3 in 34 years. I wouldnt worry Sydney, but im not a doctor, so maybe you should get it checked out anyway if only for peace of mind. Im sure if you read the posts you’ll appreciate these really arent that big of a deal, dont waste your time and effort reading more into them than they deserve! With regards to the MRI, I was told they only gave me mine because I was so worried, they never thought it was anything sinister from the start. Check your diet and try and avoid aspartame ive read this can contribute to the frequency of SS, well some people think this – no proof either way. Good luck Sydney I hope they become less frequent for you, lets hope they stop altogether for us both :D
March 24th, 2004 at 6:08 pm
In reply to a few people who have these after images in their sight. I was told by my opthomologist that this is common especially when looking at something bright. On a sunny day, when looking at a bright orange outdoor extension cord that was lying on the grass, I will look at other areas of the grass and see red lines. ( an after image of the orange extension cord) It’s really weird but it only happens on a very bright day. If I look at the extension cord in the shade, it does not happen. I don’t really worry about this; and the four ss that I’ve had don’t really worry me anymore either. I’m convinced they happen during times of stress or coorelate with my monthly cycle. My neighbor gets the ss often and never gives it a thought. She has been a migraine sufferer for years but now mostly just gets the ss.
March 24th, 2004 at 7:56 pm
In reply to Sharon, (dam ill have to stop posting haha)
Yup thats right what you say about this being common especially when looking at something bright. I think you failed to appreciate mine is a little more pronounced than just this. For example, if I read a web page that is white text on a black background, the difference in contrast is such that after I finish or look away, I have lines burnt across my field of vision exactly corresponding to where the text was. This isnt just an ‘afterimage’ this will last anything up to 7 mins after I look away – a little more pronounced im sure you’ll agree. I do know what you are explaining and thought I covered the difference between this ‘commonality’ and the version I thought Sydney shared with me. What you are explaining everyone has, its due to the cones and rods in the eye becoming excited and taking a while to return to their normal state, hence the afterimage. My condition is more to do with the way my brain processes the image, the image doesnt just fade in my case, when objects move across my visual field they leave a trail behind them, as stated before an entirely different kettle of fish. Also the way the image fades is a little more freaky, it consists of swirls of colour and other strange things I cant put into words. I also get this if I look at something bright for less than 4 secs, the central part of my vision goes off like a sparkler when I look away, but if I look for longer than 4 secs and repeat this, I get no sparkler effect in the centre. I think this is entirely unrelated to the SS, if not ive had a migraine for the past 15 years!
March 25th, 2004 at 1:14 am
I have had these occurrences for about 16 years (I am 35.) My mother suffered with severe migraines which included the ocular sensations and often worsened into what was described by physicians as "walk around seizures." I have no idea what that actually means, however. Fortunately, my episodes are not nearly as severe. I almost always get a pretty serious headache after having SS, although occasionally it is just the flashing and no headache. When this occurs, I will get the SS several more times in the course of a day or two. The bad news is that eventually, the headache comes along. The longer the buildup, the worse the headache.
I often feel a little odd in the day leading up to these episodes. A little hyped, strange body sensations, etc. I have tried immitrex, didn’t seem to do anything. Over the counter pain reliever at the onset of headache seems to ward it off for a while. And, I am having some success with playing soccer or some other rigorous activity while experiencing the migraine. I fel terrible at the start, but the endophins kick in and it helps immensely. It is a whole lot better than lying in a dark room with a washcloth over my face. All that does is allow me to focus on how bad my head hurts.
March 25th, 2004 at 8:19 am
i have been having this problem for 22 years, i haven’t had an ss occurence since june of last year. but i thought one was starting today but it went away within 1 minute. it’s wierd because i use to have them everyday for years, and then i never had one for about 10 years until feb of last year. i just never know when it might start up again.
Linda
March 25th, 2004 at 9:42 pm
I AM 26 AND HAVE BEEN HAVING THIS ONCE OR TWICE A YEAR FOR 4-5 YEARS. TODAY I HAD AN EPISODE WHILE DRIVING TO WORK, WHICH PROMPTED ME TO LOOK IT UP ON THE INTERNET. I HADN’T TOLD ANYONE ABOUT IT BECAUSE I THOUGHT IT WAS WEIRD. I DO NOT HAVE MIGRAINES, BUT I DO HAVE SINUS HEADACHES PRETTY REGULAR. IT IS REASURING TO KNOW THAT OTHER PEOPLE HAVE THIS S/S, EVEN THOUGH THERE IS LITTLE EXPLINATION FOR A CAUSE. IT IS ALSO AMAZING THAT EVERYONE HAS THE SAME EXACT EXPERIENCE. THERE WAS TIMES WHEN I WAS AT WORK DEALING WITH CUSTOMERS AND I COULDN’T DO MY JOB BECAUSE I COULDN’T SEE. I THOUGHT IT HAD SOMETHING TO DO WITH SMOKING.
THIS WEBSITE HAS RAISED MY CURIOSITY ON ONE OTHER THING, WHO IS EDITH FROST? I ASSUME SHE IS A MUSICIAN, BUT FROM WHERE AND WHAT KIND OF MUSIC. I GUESS I COULD BUY HER ALBUM AND FIND OUT, RIGHT? WHAT A GREAT IDEA FOR A TOUR, THE EDITH FROST-S/S TOUR.
ANYWAY, I FEEL BETTER NOW ABOUT THIS.
March 25th, 2004 at 10:05 pm
I live in Chicago but I’m from Austin/San Antonio originally. The music is kinda folky countryesque rock maybe. There’s lots of press stuff on the site where you’d get a way better description than I can give.
http://www.edithfrost.com/index.php/weblog/C96/
Also a few MP3s to download, and a lot more coming soon.
http://www.edithfrost.com/index.php/weblog/C96/
March 29th, 2004 at 1:44 am
i had episodes like this when i was in my twenties, i actually forgot about them. now im forty-three and just had another.went to the doctor today- he sending me to have an eeg and a mri. i noticed on the report he wrote the word Scotoma-which led me to this website.feel much better knowing whats going on- almost certain mine is stress related. i used relaxation excersises and xanax to control nerves when i was younger- i will start excersises again to see if it controls it. will update.good luck everyone
March 29th, 2004 at 7:45 pm
I have been getting migraines since I was 12 years old (I’m now 43). First, without auras, then for a while, there was always an aura and I would always get an excrutiating headache afterwards (the spots usually lasted 30 minutes). Just like everyone describes here. Starts out as a spot like when you get your picture taken, then grows to a C or backwards C with zigzag lines. Up until I was pregnant in my 20s, the aura was always followed by a headache. Ever since I had kids, I get the aura with no headache. They are very sporadic now, but I just returned from a ski vacation in Colorado, where I got the first s/s in a year, and have been having one every day for a week, 2 last night. Today, my head feels a little achy but not like a ‘real’ migraine. I have been to doctors many times over the years for migraines. My father gets migraines, but never an aura. My sister gets migraines with and without aura. I have been taking Excedrin for 20 years (usually 8-10 per day) because I get daily headaches. I know, they are rebound headaches from the caffiene. So, I know that aspirin will not keep auras away. I can’t pinpoint one exact cause of the auras but I’ve gotten them from not eating, from bending over, from too much exertion and from stress. Other times, there is no apparent cause. This morning, I had one while sleeping. I’m hoping that my migraines will end when I go through menopause as they started at puberty. My migraines with pain seem to be mostly related to hormones. The auras are very annoying now, but they used to scare me, not because of the actual aura, but because I knew that a terrible migraine was on it’s way. Anyways, glad to find this site and share in the misery!
March 29th, 2004 at 8:23 pm
I forgot to mention in my precious post, I think that sometimes fumes can cause my auras, such as when I’m cleaning the bathroom. Or maybe it’s because I’m bending down! I don’t think for me that anything I eat causes the spots (ie. Chinese food, aspartame, caffiene). I also have floaters, although I’ve never thought that these were related. I do however, when I look at snow or the sky if its white, see what I can only describe as shadowy groups of circles that appear to be moving very quickly away from me. These are not anything like floaters, but more of a ‘brain phenomenom’ since it is in both eyes.
April 2nd, 2004 at 6:04 pm
At age forty two, I have just had two ss episodes in the last two weeks. When trying to describe them to my husband, (before knowing what they were) he said maybe your glasses are the cause. I told him, no it wasn’t eye related because it was still there when I closed my eyes. I told him that it had to be originating in the visual cortex (occipital lobe) of my brain. I also felt that it might be migraine linked, although I have never had a migraine that I know of. The ss is left centered in the visual field and looks like you smeared a window with vaseline. It is surrounded with a moving zig zag line that reminds me of electricity or a neon light. I had my second one while driving yesterday. I did read in my Merck manual that migraines occur due to a sudden constriction and then dilation of blood vessels in the brain. It said that high doses of caffiene can sometimes help to constrict the blood vessels and give an improvement in symptoms. The only unusual life circumstance occurring right now besides caring for my severely disabled daughter with cerebral palsy, is helping my sister in court with a messy divorce relating to custody of her children. My life if rather complicated caring for my daughter without worrying about trying to see to drive. Both episodes have been relatively short (under 10 minutes). I also read in Merck that migraines have been linked to low serotonin levels. When explaining all this to my husband, he wonders if it is stress related.
April 3rd, 2004 at 9:12 pm
Thankfully, I haven’t had a SS for a couple of years now, but I was getting them regularly every couple of months or so. Mine would last for about 20 minutes then my vision would return to normal. Then 20 minutes after that I’d start to feel ill with a bad headache, nausia and vomiting. Only after about 3 hours of laying in a darkened room would I feel better again, but I wouldn’t feel 100% until the following day.
I’m not sure what I’m experiencing is a migraine attack, as most people I know who get migraines say they get excrutiating headache. My headache after SS isn’t that bad, it’s the nausia that’s really uncomfortable.
I’m pretty sure mine was related to an intolerance of a certain food type. Believe it or not, I steer clear of chicken liver pate and that seems to have done the trick!
April 5th, 2004 at 3:14 am
For many years I have had zig zag rainbow-colored pulsating lines that grow from small white zig zag lines and get larger and disappear out of the corner of my eye. I think I started having them when I started having menstrual periods in my teens. I am now 54 and still have them but they are rare. I had one at the beginning of the week that may have been caused by lack of sleep. Alcohol such as wine can cause them also. I did have a blood tumor in my left eye that had to be frozen to get rid of it, but I don’t think that had anything to do with the zig zag lines. I think the main cause may have been hormones since I don’t get them much now. Maybe every few years. They are scary and I don’t like it when I get them, but I am glad I never get migraines afterwards. My mother used to get migraines, and I may have inherited the tendency from her. She says she gets zig zag lines now, she is in her 80s but doesn’t get migraines anymore.
April 6th, 2004 at 7:59 am
For the second time in 4 or so years I too had this wierd and frightening experience. It started with a blurry shimmering small zone in my vision just off centre then grew to form an arc like a "C" around my vision until it felt like it went over the top of my eyeball. It seems like I’m looking through crystals, the image is there but multi-faceted. No headache as such but I did have one an hour earlier so I took a panadol. The first time it happened I saw my GP who said it might be low blood pressure or migraine related, though I don’t get them. Today I rang my GP as it was happening and she said go to the A&E;clinic and get it checked in case it is a retinal detachement. Riding my motercycle with this vision was a challenge. By the time i got to A&E;it was just fading out so the diagnosis was again probably migraine, after reading these postings I think, Scintillating scotoma must be what I’m suffering. Wish the docters new more about it.
I have always found bright light uncumfortable and at times if I go out into sunshine after being inside I get a small shimmeing off centre that goes away after 10 mins’ or so, but when you get the full growing arc it sure freaks you out. I don’t seem to get a bad headache with it and no dark patches, just a shimmering area wether my eyes are open or closed, I’m pretty sure it’s in my left eye but can’t tell for certain as it’s there even if i shut them.
I’m very prone to hayfever etc and have a slight dizziness at times, abit like one drink too many. But stress has been high the last couple of years, so that is probably a factor.
Take care out there and thanks for your info’ as it helps knowing I’m not the only one.
April 8th, 2004 at 5:19 pm
I’m delighted to have found this site. I’ve had 2 episodes of SS between 1996 and 1999 (none since) and they worried me terribly as I knew they could be migraine related, but as I had had no headache with them I wondered if I had something much more sinister, like multiple sclerosis or something. What a relief to find others with the exact same thing, and know it really is a painless migraine phenomenon! Thanks guys, and Edith for keeping this site going.
April 13th, 2004 at 8:15 pm
The first time that I remember this happening to me was about 7 years ago. I came in from outside and noticed this big glare that kept me from being able to focus straight on. I just thought it was a glare and would go away within a few minutes, but stayed with me for about 50 minutes or so. As time progressed I noticed the shimmering, colored lights were in my periphal vision(can’t remember which side)and I couldn’t see any images past the shimmering spectrum. These shimmering lights eventually moved out of my field of vision and I felt fine afterwards, after about 50 minutes.
The next time I remember this happening was about 2 years ago, when I was going outside. Same kind of thing – not being able to focus straight on, then the shimmering affect moving until it was out of my field of vision. This episode lasted about 40 minutes or so.
I just experienced 2 more episodes 2 weeks ago. Same thing, but lasted only about 20 minutes each. This time I had mild headaches afterwards. I think for me it’s related to the change in light – going from light to dark or dark to light in a quick amount of time. These last two episodes happened after opening up the refrigerator and I must have looked right at the light bulb or something? Then, it happened again after being on the computer and I quickly got off and went into my kitchen, where it was darker. I don’t know what caused them for me. I just hope it’s nothing serious. I visited my opthamologist and he referred me to a neurologist, but my eye doctor says it’s "probably" migraine related, even though I’ve never suffered from migraines, just ocassional headaches from time to time.
This site has helped me trememdously because it’s calmed me down, knowing that others experience what I’ve experienced. But I won’t be totally calm until I talk with the doctor. I hope he doesn’t want an MRI. That freaks me out a little.
Thanks for your help!
dz
April 14th, 2004 at 11:20 pm
Just a comment. I saw on the previous page -someone mentioned having a condition that called for the use of Prednisone. Then she got ss. She seemed to think her condition triggered the occular migraine. Last year I took prednisone for Poison Ivy. When I finished up the prescription I had 3 spells in 2 days. The Opthomologist thought it was Occular Migraines from the prednisone. I just wanted to mention that for the lady who took prednisone.
April 15th, 2004 at 4:49 am
Thank God I found the description of someone’s migraine attack!
I had exactly the same pattern as her – the grey dot which grew just to the left of central vision, into a circle which expanded, then the right hand side of the circle began to disintegrate as the circle grew bigger, until the circle now like a "C" covered the entire periphery of my vision except for the right hand side.
I have NEVER been as frightened in my life – I thought I would be spending the day in hospital! It was all over in 15 minutes but I was so scared. I thought it might be a stroke, and took 2 Aspirin.
To me the outer edge of the circle was full of shiny "bars" like the sides of trianges with one of the 3 sides missing, so some sides were horizontal, some angled to the right, some to the left, and the most amazing colours like prismatic silver paper with red, gold, purple. The outer cirle of bars flickered like a heartbeat but much faster. When the circle was about a quarter of its eventual size, I could not see properly, faces, or to read, adding to the panic.
I am 56 years old, female, and had migraine at puberty with flashing zig-zags in right eye. I would then get headache, vomit, and then the headache would go. My left hand would go numb and have pins and needles.
This attack – just a small bit of discomfort afterwards. I went to optician and doctor in the afternoon and nothing wrong was detected.
I am so glad I found the lady’s description – and this site as both the optician and the doctor were unsure what was happening, although the optician said it could be "visionary migraine". Although I was afraid, afterwards I wondered if I had another attack so that I could see the lovely colours and draw it rather than the sketches as the attack was happening, with my alarmed husband and sister looking on, flicking through my medical book.
Heather (Moongoddess)
April 18th, 2004 at 1:33 am
I’m having another attack right now; and have no idea what if anything triggered it. It’s pretty intense, I’m having a really hard time typing this! The only unusual thing about it (for me) is that the C-shape is inverted, it’s sitting on the right side with the points facing left instead of right. This one’s in black and white, no colors and no headache.
April 18th, 2004 at 6:17 pm
I thik it might be related to high blood pressure having read all this.
I myself have had one and had hbp @ 164/94.
On meds now.(lisinopril)
April 19th, 2004 at 5:13 am
I too am grateful for this website, and post a message in the hopes that my account may be helpful to another.
My first scintillating scotoma was a couple of nights ago — after an exceedingly stressful week. It occurred as I was reading and began with my not being able to make out the words and then sort of blossomed into the moving light thing. It was late and I went to bed after checking my pulse rate because the thought of a stroke came to mind on the basis of something somone once said casually — the pulse rate was only 60. Also I closed my eyes and still saw the lights so I decided it was either in my brain or resulted from looking at lights too long — though I couldn’t remember having done anything of the sort. I slept badly and woke with a headache which I put up to the bad night. Around noon or one o’clock I experienced the same thing again the sole difference being that the first aura was in my right eye and the second in my left. A furious headache then follow with some queasiness of stomach, nervousness, and generally feeling quite punk.
The headache is still with me, though now it is only dull, and I feel like one does after being sick — it is not quite 48 hours since the first ss.
After the second ss, I went on-line to see what I could discover. I was greatly helped and relieved by finding a cartoon of the very thing I saw in my own visual field at a med school website and by this message board. Thank you.
Lastly, I say these two incidents were my first ss experiences, but about two months ago I became dizzy and unable to see clearly when I was teaching a class. The dizziness passed quickly and the bluriness or inability to see in part of my visual field went away after just a few minutes. There was no light thing and I have no recollection of whether a headache followed or was present when it happened. I never thought about it until this new thing happened.
April 20th, 2004 at 6:34 am
Well, I had an MRI, due to my opthalmologist’s suggestion. Everything is normal, which relieves me a great deal. And getting the MRI was a piece of cake! If anyone needs one, go for the open one – I didn’t freak out once! Now, I’m just waiting for the next migraine to come. And when it happens I won’t panic!
God is good!
dz
April 20th, 2004 at 9:06 pm
Hi Guys, Have any of your doctors warned you of a aura that doesn’t go away? He said there is such thing as a migrainous stroke, they are rare, but if I get an aura that doesn’t pass I should go the the ER and call him right away. Oh Great, now I’m scared again!
Carolyn
April 21st, 2004 at 12:07 am
I’m having another one now. sigh. whatever, at least my head doesn’t hurt.
April 21st, 2004 at 6:18 am
Carolyn,
Yes, my opthalmologist did say that if I get a blurred vision that doesn’t go away, head straight to the ER because it may be the start of a stroke. But he said BLURRED vision, which isn’t the usual problem I’ve been getting. Don’t worry. Doctors just need to cover themselves and make sure they cover all their bases and tell you EVERYTHING – sometimes too much!
dz
April 21st, 2004 at 9:22 am
I’m having yet another one! This is getting annoying.
April 22nd, 2004 at 1:45 am
Hey Edith, me too same as yesterday. Darn hard to mess around and shop on the internet while having one. while at work :)
Carolyn
April 27th, 2004 at 1:41 am
Glad to know I’m not the only one who lives with these!
I’m a 40 y.o. female who has gotten s/s once or twice a year for the past 25 years or so. My mother suffers from migraine headaches, and when I described the visual distortion to her she called it a migraine "precursor". Luckily I never have gotten the migraines that follow.
Mine start on the left of center as a small bright spot, and are norally "C" shaped, although I have had more angular ones. They expand out to the left and are a variety of colors. While irritating, they normally only last about ten minutes and are gone. I sometimes get a bit nauseous during the last couple of minutes when it’s right on the edge of my vision and try to put my head down and close my eyes until it’s done. Then it’s over, no lingering blind spots. For me they have always seemed to be stress related – until two weeks ago.
I was scuba diving in Turks & Caicos (BWI) on a liveaboard dive boat. I have been a certified diver for ten years and normally go on at least one, usually two dive trips a year, with repeat dives each day, although I am a very conservative diver. The water was quite cold, and after the third dive on the first day I started having some lower back pain. I went to lie down in my cabin and had an s/s. As usual, it went away after ten minutes.
The next day I did three more dives with no problems. The third day I again did three dives, and after the third one, the pain in my lower back came back, along with pain in my left arm. I went to lie down again and had TWO s/s one right after the other, very quick moving. My thighs began to ache, I began to cough and felt extremely weak.
Long story short, I had decompression sickness (DCS), otherwise known as "the bends". Thanks to quick action by my boyfriend (he’s a trauma surgeon) and the boat’s crew, I was immediately administered oxygen and transported back to the mainland to a facility with a hyperbaric chamber.
The doctor on staff felt that this was an "undeserved hit" – i.e., my dive profiles were conservative, I adhered to all safe diving practices – and felt that the cold water temperature might have been the trigger for me. He also advised that many people with DCS experience visual distortions along these lines. Perhaps it was the stress that my body was going through trying to absorb the excess nitrogen that sparked them? Hopefully it will not mean an increase in the frequency of my s/s episodes.
Anyway, thanks for letting me jabber on.
April 28th, 2004 at 10:11 pm
I had an S/S about two years ago for the first time. It was on a Monday after a weekend during which I had done a condiderable amount of applying finish (Minwax polyurethene) to wood.
On Saturday, April 17, 2004, I spent the morning applying floor finish (Varathane). The next day I had the second S/S of my life, and the day after that I had two – one right after the other.
All four occurences were very similar in size and length (20 minutes). I attribute mine to breathing something noxious in those wood finish fumes.
April 29th, 2004 at 5:55 am
Hi,
I have been having SS for about 12 years now. They usually come and go at random, sometimes for a year or so in between, then all of a sudden I will get several within a month. I have been to my doctor and ophthalmologist and they say it is nothing to worry about. I now have been having some eye floaters surfacing and am told by my ophthalmologist this is age related and not related at all to the ocular migraines. I work for a doctor and he suggested taking a beta-blocker. I haven’t tried this because mine are few and far between. I also noticed that I will get one after eating chocolate. Who knows. has anyone tried a beta-blocker?
April 30th, 2004 at 1:56 am
finally……………people who understand how frustrating this can be . Mine started after i had a bad fall as a kid.I went to the er after the fall and expierienced my first episode of "word salad". A few days later i was at dinner with my grandparents , we were sitting at the table with candle light between us , and then all of a sudden i could’t see my grandmother sitting on the right side of me anymore. It scared the crap out of me and I went for some more testing eeg, ekg and so on ….. to no avail. I then expierienced them off and on maybe one every year or so . Then I grew up got married and the frequency of the ss with head pain became more regular, every 3months or so . I am now 38 and in Jan I quit a job I have had for ten years because I thaught the stress of it made my ss way to regular. I was having them every other day for two months. I was of no use to my co workers because I get what I call a "hangover" after the ss goes away. It lasts about 24 hours or so. The wierd thing is that the older I get, the less pain there is involved with the ss . I thaught that it must be a tumor or something because migraines usually come with pain. I am greatful for the lack of pain, but am curious if my age and hormonal changes could have anything to do with it? I am so grateful to this site, and to the relief it has given me to know I am not alone anymore. Thanks for everyones honesty. Oh and yes , if they weren’t so scary , they would be pretty cool art.
April 30th, 2004 at 2:27 am
i commented earlier, but didn’t mention that recently i figured out that i am hypoglycemic and have been on a diet with little or no processed sugar for aprox 3 weeks and will happily say no ss. And for those of you wondering about aspertame, I can honestly say every single time I have ingested the stuff, weather in soda, candy or as a sweetner in a packet I have deffinatly gotton an ss right after (within a half an hour). I am constantly reading the lables on everything!
did you know it is in childrens vitamins too. Read the lables on everything . Look for msg too, also a culprate(for me anyway).
May 3rd, 2004 at 12:53 am
I’ve been experiencing jagged lines of colored lights and sometimes blurred vision for the past week . . . sometimes several times a day . . . most comments by others seem to relate the left eye — mine is always the right eye. Yesterday I had a frightening experience while driving with my three children and sister in the car. I yawned wholeheartedly and all of a sudden the lights were distracting me to the point I warned my sister something is wrong with my vision . . . it seemed like I was seeing double and when I closed one eye I could see fine. I was about to pull over; I was terrified that something major was about to happen, but it was over seconds later. It scarred me enough to search the web today. I’m thankful I did . . . it is somewhat comforting to read all the comments. One thing that concerns me is I do not have a history of migranes and reading briefly through some of the suggested links, that without a history of migranes, could possibly indicate something neurologic? I consider myself a fairly healthly 42 year old woman — although I’ve been nursing a stiff neck/muscle pain for about two weeks . . . my husbands initial thought was the driving incident was possibly related to a muscle spasm?
May 11th, 2004 at 8:52 am
DIAMOND SHAPED…DOES ANYONE HAVE S/S THAT IS DIAMOND LIKE IN SHAPE??? I EXPERIENCED AN EPISODE THE OTHER DAY…MY FIRST…THAT INVOLVED THE RIGHT HALF OF MY RIGHT EYE. LASTED ABOUT 7 MINUTES…WAS GEOMETRIC…LIKE IT HAD BEEN CUT OUT WITH PINKING SHEARS ON ALL 4 OUTER EDGES. VERY BEAUTIFUL..ALMOST RAINBOW LIKE, EXCEPT THAT THE COLORS WERE VERY DISTINCT AND DID NOT MERGE OR BLEND INTO ONE ANOTHER. THEY WERE RED, GREEN, YELLOW, BLUE. I COULD SEE THROUGH THE MIDDLE OF THE DIAMOND…SO IT WAS AN OUTLINE OF THE DIAMOND SHAPE.
May 17th, 2004 at 1:08 am
I am 18 years old and have been experiencing S/S daily for about two weeks. I remember experiencing them every once in awhile throughout my early years, but they went away for awhile. I am scared that I am now getting them every day, although there is a bizarre catch to them… They only come if I look at something that is white in color. The computer screen, white cars, clouds, anything white. If I look at something black, it goes away instantly, but comes back if I look at something white again. Anyone ever experience that?
May 17th, 2004 at 1:14 am
Noah, I had to repost your comment, sorry about the funky date and time — not sure how to change that. It didn’t make it over with the migration of the rest of the database, dunno why.
May 21st, 2004 at 4:31 pm
Am a bodybuilder – Experimented with SMALL amounts of steroids.(Sustanon-basically testosterone).
Anyway injected .125ml(1/2cc)aweek for 4 weeks.
After this I had a scillilation.
Have put it down to a change in the bodys natural hormone (Mine would be carryng approx 300 times that of the average man.)and a combination of high blood pressure – mine was around 154/94 at the time.nomal now..This is my conclusion.
Never had another one since…
Just throwing this in the mix..
May 26th, 2004 at 9:00 am
well , it happened again. On Monday i had another ss , this time in my right eye. Normal time frame of 20 mins or so.Also it was accompanied by head pain on the left side. I layed down for a while and got up in about a half an hour. When i woke up I had another one still in my right eye. Tuesday came and went with no event. Now it is Wednesday and i got another one, back in my left eye like usual. Just thaught i would share. I have been free of ss for almost a whole month untill the last few days.This is sooooo frustrating.:(
May 26th, 2004 at 12:42 pm
Hi guys, I’m back. Jen, my neuro says these things come in clusters so you can go months or for the really fortunate years between them. Just wondering does anyone notice other strange neurological symptoms in connection with their s/s. Like dizziness, tingling in fingers, sudden feeling of anxiety for no reason, feel like your arms are heavy and can’t seem to concentrate? Last night I felt as if, I’d had 47 cups of coffee, absolutely wired, this morning I woke up and it was like a million tiny black dots in the vision of my left eye, kinda like looking through a fine screen, right eye was fine. It cleared up. When I got to work about 8am, there came the s/s, a whopper but only a mild headache afterwards. We’re obviously dealing with a migraine type occurence, I almost think I’d rather have a devastating headache than all this really weird stuff. Just really hard to comprehend I guess. Everyone can understand a headache and not have much concern over them. Oh well, I ramble.
Good Luck to all,
Carolyn
May 26th, 2004 at 1:15 pm
Hey everyone… very glad y’all made it over to the new URL. Just fyi, we have a new membership system in place — if you join as a site member, the main benefit (so far!) is that your comments will be posted immediately, without being moderated. Of course if you don’t mind waiting for me to approve ‘em, that’s cool too! Anyone can post freely, but comments by non-members will be moderated.
BTW I’ve never gotten a spammy or hateful comment on *this* thread! But unfortunately I can’t turn off moderation on a post-by-post basis, and I really need that capability for the rest of the site.
Oh, another thing you probably noticed is my new avatar? That’s another silly perk you get when you join. :-)
June 2nd, 2004 at 3:11 pm
Thank you so much for making this information available. I’ve been to a few doctors and opthalmologists and they all called it "phenomenon"! I didn’t even know what it was called until now or that it was associated with migraines. I learned more here than I did in all my doctor visits combined!
I’ve had SS’s 3 times in the last 30 years, roughly 10 years apart.
The first time was when I had a very bad skateboard accident in the 70′s. I severely bashed my head and as I was lying on the ground waiting for the ambulance, I noticed that I couldn’t see the faces of the people who were looking down at me. I told the emergency room doctor about it and he was almost totally uninterested and shrugged it off since the SS had passed.
The second time was in the 80′s and I believe was the result of an opthalmologist’s exam. I was there for other eye problems, including floaters. He dilated my pupils, said everything was fine, and sent me home. On the way home, the second SS happened. My eyes felt very tired from the dilation and were very sensitive to light as a result. I believe that was the cause.
The third time was just last week, the first time in the age of computers and internet, so I decided to look it up. This time, there was no clear cause that I know of with the possible exception of job stress and a bad cold.
My scintillating scotomas are similar to the ones everyone describes here. They start with a point of light or a spark, progress to a blind spot, then to a sawtooth "C" shape that grows bigger and flutters with color and black lines, and is over in about 30 minutes. I can see inside the "C". Rather than growing bigger, a more accurate description for me is that it is moving closer and closer and that it eventually passes through my eye and out the back.
The last one is the only time that I ever had a slight headache afterwards. I hope that doesn’t mean an upcoming migraine problem.
I’m relieved to know that it’s a common problem…but it’s still unnerving when it happens.
June 4th, 2004 at 7:34 am
Dear Ms Frost, I am a migraine researcher from the University in Aachen, Germany, and I am currently constructing a website devoted to Migraine Art, i.e. the paintings and drawings whereby migraine sufferers express the many signs, symptoms and experiences related to the migraine attacks and the various forms of migraine aura. The URL is: http://www.migraine-aura.org/EN/Migraine_Art.html
Migraine sufferers who have depicted aspects of the migraine experience are welcome to contribute to the images displayed on this new website. Dr. Klaus Podoll, University Clinic, Aachen
June 4th, 2004 at 9:43 am
“migraine-aura.org"?!? Omigosh, I never thought I’d see the day. Thank you Dr. Podoll. I remember you very well from before, and I was always hoping you’d come back with something like this.
So… that’s it, I think my work is done here. ;-)
I’m kidding. Seriously now: I really don’t want your comment to get buried in another sea of comments! The next time I get an SS attack I think I’ll start a new thread and feature your link in the body of the post so people won’t miss it. It doesn’t matter anymore how many posts I make on this topic, since I have a whole category now for SS.
The funniest part of your site is this:
Etiology (the cause of a disease)
[PENDING]
…ha ha. The suspense is killing me! ;-) When that page gets filled in, that will be HUGE news for all of us.
Oh yeah, I also forgot to mention before that y’all can now subscribe to get notifications whenever a new comment is posted on this thread. You have to post a comment to subscribe; I haven’t figured out a way to let people JUST subscribe without saying anything. But it is an improvement. I know I keep changing things and confusing people by moving stuff around, but hopefully the changes are for the better.
Again, thank you Dr. Podoll for sending the link over, it’s quite amazing.
June 5th, 2004 at 7:55 am
Dear Ms Frost, thank you for your supportive comments. The "Migraine Aura" website (migraine-aura.org) was created by Markus Dahlem, a migraine researcher from Magdeburg in Germany, and to the best of my knowledge it’s the first ‘medical’ website devoted specifically to migraine aura or SS. Of course, your website, and some others out there in the internet, have been pioneering in this field, and so I strongly hope that you were just kidding when you said your work is done now… As the result of a lucky cooperation, we’ve joined our efforts for a better understanding of migraine aura phenomena by implementing, on the forum of the "migraine-aura.org" website, a special section dealing with "Migraine Art", for which I sign responsible. Among other features, this part of the website presents a selection of webpages devoted to single artists and their migraine related works. The word "artist" is here understood in the widest possible sense, i.e. in principle anyone who has tried to depict / represent / transform a migraine experience in a piece of graphical art (a drawing, a painting, etc.) would qualify for being considered for inclusion. In fact, it would be a great pleasure for me if I could include a page … about YOU, I would strongly appreciate if I could include some of your descriptions of your own auras and a link to your site, so I would like to ask you whether you have any image which you could send me for the said purpose (… the zigzags at the top of this site, is this a depiction of YOUR SS ? …) Thanks again for your support, Klaus Podoll MD
June 5th, 2004 at 10:09 am
Oh I didn’t draw that image Dr. P, I stole it off the web somewhere like a thief in the night. I checked out y’all’s whole site yesterday, the artwork section is great! And the animations, WOWWWWW. I didn’t get an attack by viewing them but it sure gave me an uneasy feeling, like "oh Edith you’re beggin’ for it now…" ha ha.
Of course I *was* kidding about the "my work is done here" comment; most of my communication with others is done through a series of lame jokes. :-) So don’t worry, this page (or site-section, now!) isn’t going anywhere. It requires no additional work on my part, and indeed it came to being on its own and developed a life of its own over the last few years. If it dies it’ll be due to natural causes. And I’ll definitely leave the posts archived here as long as I’m able to.
That said, I probably need to start a new SS thread soon, since we already have over 100 comments on this post. The server gets unhappy when it tries to cough up a supersize entry like this, it tends to give out Server 500 or "connection refused" errors when the traffic’s too heavy or some such. I still don’t know a better solution than to just close comments and start a new thread, but I try to leave navigational breadcrumbs whenever I do that. It’s not the ideal setup for what we’re doing here, but it’s better than nothing.
June 7th, 2004 at 1:29 am
Hi all.
Interesting stuff here and really useful I must congratulate Edith Frost for a very informative site.
My episode began after a real hard 7 months developing software for my dyslexic kid on the pc.
I have had 2 attacks the first of which was very frightening and much more sever that the current one I had on a family picnic yesterday. In the first I lost half my left field of vision and the growing flashing wriggling ‘lightening’ prevented me seeing my kids faces which was terrible. They even persisted when my eyes were closed and moved when I tried to look at them whcih made me think these werer no floaters or eye issue but something different.
Apparently attacks can be linked to chocolate caffine and red meat all of which i endulged in a plenty yesterday in the second attack.
However I am interested to know what other people have in the way of body problems for example I have Sjogrens Syndrom which is where the white blood cells in the body attack the glands that produce oils for lubrication. This is because I found links with my kids Dyslexia and Psoriasis and my husbands Ankylosing spondilitus which the docs never linked for me. At least I am prepared for what may occur to my kids, I would like to know what possible conditions may be linked to this as its a brain isssue and not one of sight.
What does everyone else think?
Oh yes and if there is black spots that may be a detached retina so you should get to a specialist for the poeple that have mentioned this.
I am looking forwards to enlightening my doctor tomorrow on what I have ..
June 8th, 2004 at 12:33 am
I just read all the posts here tonight, and I thought I would share my aura as well!! :-) I have had migraines for probably most of my adult life..and I am now 46. I experienced my first aura 4 1/2 years ago, and quite frankly, it scared the s^*& out of me!!! It started in my distant field of vision…and gradually over the course of about a half hour became what I describe as "kaleidescope" vision. It consisted of geometric shapes that danced in my peripheral vision.I thought..”Oh my GOD!!! Do I have a BRAIN TUMOR???? I had NEVER experienced this before..and only did again a few times after that. I haven’t had any since then. So now, I call myself..”The Girl With Kaleidaescope Eyes!!!" LOL……
June 8th, 2004 at 6:52 pm
My husband has these. he did a lot of Karate as a teenager and was also a bouncer. Some dr.s think he might have "Boxer" migraines, or a partially detached retina from being hit in the head too much, but the S/s has more of the right symptoms
Does anyone else with the ss, have head injuries?
June 9th, 2004 at 6:11 am
I’m so relieved to find that I’m not the only one with the symptoms of ss. Some of the descriptions fit mine to a "T". It’s interesting that many of us are around 40.(I’m 43). I had my first episode a few weeks ago, but after my ss faded out, I had some other strange symptoms: I couldn’t read or find the right words to speak for about 20 minutes. I tried reading out loud, and I couldn’t do it – my brain wouldn’t let my mouth form the words. I sounded like a first-grader. When I tried to speak, simple words wouldn’t come. It was so scary. I thought I was having a stroke, but am pretty sure it’s a painless migraine. I’m seeing a neurologist soon.
June 11th, 2004 at 10:51 am
Hi, thanks for this space so that I am able to share things with you. I had my one and only (so far) ss 4 months back and the weird thing is (I have not read anyone mention it here), I immediately had seizers (with delusion, memory loss, fatigue) following the second ss, the first one went away soon. I’ve had both forms of CTScan but nothing besides a vasodialation rupture. MRI was negetive, I’m still scared of what this could be, I did not mind the ss as it went away within an hour but both together on after the next, getting another of that gives me the creeps. If you know anything about this please post or write me an email, I would really appreciate it.
Much thanks, Gayuti.
June 12th, 2004 at 8:28 pm
I’m moving the thread again due to having too many comments on one post… please go here to continue. :-)