Scintillating scotoma (Part 3)
Saturday June 12, 2004 – 7:20 pmUpdate: Comments are closed on this post; the discussion continues on this newer one.
Yup, I’m having one again. Good thing I’m a touch typist! ;-) It’s equally intense in both eyes but is floating off to the left side a bit. Classic C-shape and pulsing very brightly. It’s mostly black and white but I am perceiving a bit of red and blue in there too. I’m having a real hard time reading now so if there are typos I’ll have to fix them later.
We have 120-someodd comments on the last SS thread, so I think it’s time to start a new one. I’ll go post a note over there and send people over this-a-way. It seems no matter what blogging system I use, it’s never really too happy when it has to serve up an entry with THAT much text on it.
Man, this is bright and shimmery. I can read now, it’s expanded wide enough in the 5 minutes it took me to type this. Eh… no pain, no big deal. Just weird.
June 12th, 2004 at 9:21 pm
First post! ha ha. Just wanted to let future readers know about http://www.migraine-aura.org, in case they haven’t read the comments on the last thread.
June 14th, 2004 at 2:48 pm
I got another one, ugh. Nothing special about it except it’s really LONG… it starts in the middle of my vision and goes all the way out to the edge on the right. And it’s barely started expanding.
June 15th, 2004 at 6:11 pm
Having another one. Where are all my spirally-eyed stranger-friends? This one is bowl-shaped instead of a C.
June 15th, 2004 at 7:20 pm
I found a good description of SS over here…
A scintillating scotoma, also called a fortification (because of its resemblance to a medieval fortified town as viewed from above) spectrum or teichopsia (seeing fortifications), is present in about 10% of cases [of people with migraine auras]. The scotoma, which is frequently semicircular or horseshoe shaped, usually begins in the center of the visual field and then slowly extends laterally. The scotomatous arc or band is a shimmering or glittering, bright, zigzag border. Most visual auras consist of flickering, colored or uncolored, unilateral or bilateral zigzag lines or patterns, semicircular or arcuate patterns, wavy lines, or irregular patterns.
Also, check this out. I don’t really get the medical lingo but it seems like they scanned somebody’s brain with magnets and saw a neat-o electrical pattern during the attack. They blame "alpha desynchronization in generation of phosphenes" (i.e. the zig-zags?) and gamma desynchronization in sustained inhibition of visual function" (the scotoma or blind spot). I would like to read more about this — wouldn’t it be great if they could come up with a better animation of what we’re seeing? The animations on Dr. Podoll’s site-section are good but I can imagine something even better.
June 16th, 2004 at 8:33 pm
‘Nother one. Every damn day. WTF?
June 18th, 2004 at 10:00 pm
I didn’t have one yesterday, but I’m having one again now. It’s not a big deal but I kinda wish they’d go away and not come back.
Isn’t it weird how the thing moves along with your eyeball? If it’s in your peripheral vision, you can never look at it directly. Also, it’s fun to compare how it looks with your eyes open versus closed. When they’re open it can get all translucent and sparkly. But if you close them, it can be more like a soft-focus neon thing. I san "can" because the visual changes a lot through the course of the attack… it kinda blooms like fireworks in ultra-slow motion. For me it’s dim, then intense at the peak of the bloom, then dim again as it starts to spread out.
I experimented a little this time — as soon as I noticed the blotch, I closed my eyes and covered them with my hands, thinking maybe total darkness would prevent the full-blown SS. It didn’t work! Though it seemed like it might have delayed it by a minute or two.
June 20th, 2004 at 10:27 am
I, like all the others, am glad to find this site. I am a 49 yo female with a negative medical history other than approaching menopause and I do not take hormonal replacements. I am a dentist with a busy private practice. I was finished with patients recently, and sat down at my desk and as I spoke with several staff members, I commented that it felt like I had just looked at the sun as I had several white outs in my visual field. I could not see the full face of the assistant in the room. I thought it would clear, but in about 5 to 7 minutes, it progressed to a multicolored jagged line primarily in the left lateral portion of my left eye and I could see a dimmer identical jagged line in the left portion of my right eye. As I was looking up the number for my opthomologist, the left portion of my left eye became a half moon fluttering wave-like image. My vision in the right eye was unaffected except for the small jagged line. At that point, I called for a staff member and began to feel hot and my pulse elevated. The latter was an anxiety response I am sure. I called the emergency number for the opthomologist and leaned my head back against the chair with the thinking that if it were a retinal detachment problem, I would let gravity help by reclining my head. My vision began to clear within 2 or 3 minutes and the physician called back and told me she "knew exactly what it was" and this is my first exposure to ss. I was glad to find that it was not a detached retina and she recommended no work up. She did not want to evaluate me clinically and stated that she would find nothing wrong with my eye as the ss is a result of a hyperactivity of the brain on the right side likely associated with vascular response. She did tell of a surgeon she knows who had to give up his profession due to the frequency, but she said this is very uncommon and it is usually not of significance. She also has ss and apparently has one episode a year and has for many years. I did not feel well that evening and felt it might be stress related as this is a very anxiety provoking experience when first confronted with it and I don’t think it ever probably occurs when it does not produce some anxiety. This episode was Wednesday and I did not feel well until Friday. Thursday, I was very tired and the day was difficult due to the lethargy, but by Friday, I was fine. I did have some minor discomfort in the right posterior aspect of my head on Thursday. Thank you for the opportunity to share my experience.
June 20th, 2004 at 11:00 am
Samantha, I moved your comment to this thread fyi, ‘cuz you’d posted it to an unrelated thread. (The one about Chicago being the murder capital of the US… which might explain the SS attacks, LOL… but this will be easier for other SS sufferers to find.)
June 28th, 2004 at 1:35 pm
I have been experiencing SS for the past couple of years although today is the first time that I have had a name to put to it. I have had perhaps 6-8 episodes over the past year. It is obvious from reading all 3 threads that there are a variety of triggers and manifestations. I am a healthy 55-yo with no diagnosed maladies. I have never had a serious surgery. I don’t smoke, drink or use any drugs other than a dozen or so Tylenol/Excedrin in a year. My caffeine intake is minimal (no coffee and only occasional ice tea). I might have Chinese food once a month or so. (I believe that the association of Chinese food and MSG in the popular mind is over-rated; MSG is frequently used in the foods of many other cultures including the US.) I am very mellow and don’t let things bother me so my stress level is low (the SS episodes didn’t even cause me any concern). I have not been (to my knowledge) subject to suffering from migraine headaches. I do have infrequent headaches which I am sure are at least 90% sinus-related. The severity of those headaches is adversely affected by light and/or chemicals (perfumes, etc).
Regardless of what other factors may be involved, I have isolated the trigger for my SS episodes. Every time that it has happened it has been the immediate result of shifting my view from the TV to the computer monitor. Consequently, a couple months ago I turned the brightness down on my monitor. Since I have SS so infrequently it will be impossible to tell if that actually helped or not.
My SS manifests itself differently from most. I don’t recall any colors. It doesn’t start in one place and expand and it’s not C-shaped. My last one (yesterday) was L-shaped with the L turned a quarter-turn clock-wise. There were a couple of spots on the L that definitely had a ceiling fan or kaleidoscope effect. It was above my focal point so I could still read. That is not the norm though. Usually it is close enough to my focal point that it interferes with reading. I have had short ones (5-10 minutes) but normally they are 20-30 minutes in duration. I have never noticed any associated headache. After reading these threads I’m sure that I will be more observant in the future.
Thanks for making this information available, Edith. Thanks also for the Hecker album. I enjoyed that. It provided a nice contrast to some of your other content ;-)
June 30th, 2004 at 1:28 am
Hi, all.
I’m having my biggest SS in years. There is no headache at all. When I do get headaches, they are mild, and are always just above my eyes. I think they might be entirely secondary to the SS, resulting from eye strain.
I just wanted to comment that when having an SS, I usually become quite sensitive to light, and my eyes try to squint themselves closed when I look at bright things. On other occasions I have noticed that my pupils seem quite small during an episode.
I have no idea what this might imply, but if otherws find this too, it might be one more clue that leads to someone figuring out what the heck this is.
Getting impossible to read and type.
Seey’all,
Neil.
July 7th, 2004 at 4:12 am
Wow, I’m having a really intense SS now; it’s been a couple of weeks since the last one. I’m totally burnt after working on music and using the computer for hours and hours on end, so I’m not surprised it’s happening now. it’s pretty far out… very well defined, intricate and full of colors like a mosaic of shimmery interlocked prism-slivers. Neato!
July 9th, 2004 at 4:21 pm
I had my first SS two hours ago, and thanks to your site, I’ve stopped freaking out about it. It began as an annoying clear spot while I was trying to read – like a water droplet, just to the left of my focal point – toward the center of my eye. Same spot in both eyes. Then it started to shimmer. Then it started expanding into a C-shape – same thing in both eyes still. Then flashing black and white, jagged, sharp edges. For a moment, took a new < shape. Then expanded to a bigger C, and eventually disappeared. Whole thing took about 20 minutes. Weird.
July 14th, 2004 at 11:40 am
I, too, am reassured upon reading everyone else’s experiences with SS. I just now had my second one ever; the first one was a few months ago. I’m a 33-year-old male, not on any prescription meds, overweight but other than that with no medical problems whatsoever.
The two were very similar, but mirror images of each other. In both cases, it started out as a blind spot near the center of my field of vision, as if I had looked at a very bright light–until I realized that I hadn’t looked at any light. The first time it was towards the left of my field of vision, the second towards the right. The first one spread towards the left, top, and bottom of my field of vision, making a "C", while the one I just had formed a reverse C on the top, bottom, and right.
Although they appeared towards one side or the other, I can’t tell if they’re in one eye or the other–the zig-zags were there with both eyes open, both closed, left-open/right-closed, and left-closed/right-open. Both times. I guess that fits with the knowledge that it’s a neurological phenomenon, and not something that’s actually in the eyes.
The zigzags appear black and white with my eyes closed, but when they’re open I perceive them as black, blue, red, and green. (The blue red and green match the colors you see if you get a drop of water on your computer screen, magnifying the image so that you can see the individual blue, red, and green phosphors.)
Both times the SS lasted about 15 minutes. Although this one seemed shorter since I wasn’t completely panicking like I was the first time it occurred. No other symptoms.
Both times happened at work, when I was working at a computer, but that’s not proof of anything as I spend most of the day at a computer. This time, it happened very shortly (no more than two or three minutes) after I took a Vivarin (caffeine) tablet, so I suppose that’s a possible cause, but it’s difficult to imagine that the pill would affect me *that* rapidly. And I take Vivarin semi-regularly without ordinarily experiencing anything unusual. Still, I’ll keep that in mind as a possible cause in the future.
The first one I had really freaked me out–called up my primary care provider, who said I should mention it to my opthamologist next time I see him, but otherwise not to worry about it.
July 14th, 2004 at 6:44 pm
Hello.
I’ve been a silent reader of this site for many months and feel compelled to provide a bit of information to other readers.
I have been experiencing frequent episodes of SS for a couple of years – with the frequency recently progressing to at least 3 episodes a week (usually triggered by sunshine or other bright lights). I am not going to go in to my symptoms, as they are the same as many others have posted.
What I would like to comment on are a couple of changes that I made in my life that seem to have stopped (or significantly minimized) these episodes.
I had been talking to my PCP regularly about these episodes, as they seemed to have grown from a migraine aura into just the auro (or SS). She wanted me to take some blood pressure medication that is actually used as a migraine preventative medication. I began taking 25mg/day of Tenormin (Atenolol) in January. I kept a diary of all my episodes of SS and they did not decrease in frequency. During a follow up visit in May 2004, my PCP doubled my dose of Tenormin to 50mg/day. I have not had a single episode of SS since 1 week after taking the higher dose. I’ve been SS free for 2 months and I am keeping my fingers crossed.
During the same time that I began taking the blodd pressure medication, I also decided to cut Aspartame out of my diet. I now wonder which of these changes may be decreasing the frequecny of my SS attacks? Does anyone have a similar story – or has anyone tried Tenormin or elimiating Aspartame from their diet?
I wanted to share this information in case there was even one person out there that this might help.
Good Luck – and Thank You Edith for allowing such a terrific ‘support’ group to exist on this site.
Amy
July 15th, 2004 at 5:41 am
My first SS episode (about 20 years ago) was whilst driving. Scared the heck outta me, so much so that I drove straight to the casualty department of our local hospital. After 20-30 minutes waiting to see a doc, the SS disappeared, so I left. Unfortunately, the associated anxiety stayed for many years. I ‘suffered’ in silence, not mentioning to anyone what I foolishly suspected was the onset of a brain tumor or stroke.
After several more SS attacks over the following 6 years I mentioned my SS episodes to one of my sisters. She told me she’d been having the same attacks for years. I needed to know more. I asked my other 4 siblings if they had ever experienced these SS’s. No they hadn’t, but I did find out my mum had been having them for more than 40 years!
Unreal!!
Just in case this was some kind of ‘hereditary’ thing, I told my daughter (then 18) to not be scared if it ever happened to her. Last year I got an excited call from her while she was out shopping…”Mum, I’ve got that thing you told me about!" She has since had two further episodes and unlike my own initial reaction of fear, she takes it all in her stride! If nothing else, my own experience shows that a lot of anxiety could have been avoided if I’d talked to my family about it.
I’m now 48, I’ve had 3 SS’s over the last 3 days. All in the early afternoon, each one whilst doing totally different activities. This is the first time I’ve had them reoccur so close, usually they’re months or years apart. So i’m off to see my doc tomorrow, hubby insists I go – just in case. :o)
I’m SO grateful to find these entries. Thank you Edith for bringing SS to the fore. Finding your site must be a wonderful relief to all these other ‘sufferers’, I know it has been for me. I bet there’s been quite a few tears of relief shed too.
July 16th, 2004 at 1:59 pm
I’ve posted my experiences here previously but I must repeat that this is a great website. I visit on a regular basis. This site provides information that doctors don’t seem motivated or obligated to give to their patients. It also provides answers and reassurance to all of those who "suffer in silence".
I recently saw some information on the web and I was wondering if anyone knows about it or if it’s true:
I did a web search on the health benefits of fresh cherries, since I love them and they’re in season now. In addition to being very good for you in general, several of the sites said that fresh cherries were helpful in preventing migraines. Since SS’s are related to migraines, I’m wondering if fresh cherries would help prevent them as well? Some of the websites also said that natural cherry juice was just as good when the fruit was not available.
Can anyone back this information up with first hand knowledge?
Thanks,
Steve
July 20th, 2004 at 4:07 pm
Just had my 2nd SS after a break of several months. The first one really freaked me out as I thought I was having some strange kind of hallucination. Fortunately I work at a hospital(for kids) and got a referral to an ophthalmologist who checked me out. Once I heard the name SS, I started to surf the net and found this great site. So reassuring to read all these other experiences and realise your neither alone nor going mad. My first experience was like watching an irregular shaped grey hole just off centre in my field of vision. The edges were jagged and ‘shimmering’ and over a 20 minute period the shape grew larger as though it were travelling towards me, and finally seemed to pass by me, almost as though I physically passed through its centre. Really spooky. There was no pain but I felt a little weird.
My second one was 5 days ago. I was visiting a friend and we were having lunch outside a cafe in the local shopping mall, enjoying the late afternoon sunshine. My girlfriend was sitting to my left and suddenly she seemed to have disappeared from my view. I turned my head towards her and realised that a large SS had suddenly appeared, like a huge C at the very edge of my left peripheral vision. I couldn’t focus on it or study it, as it moved with me but it was ‘wiping out’ a huge area of my visual field. It really upset my nerves and made me very jittery. I found that I had to turn my head completely to the left to see my girlfriend and it felt like I had tunnel vision. It lasted for 15 minutes or so then disappeared as suddenly as it had arrived. I had been reassured by the ophthalmologist that experiencing auras of this nature usually meant you would be spared the pain of an actual migraine. No such luck in this instance. As soon as the SS went I began to feel quite sick and a headache started at the nape of my neck and began to creep up and over the top. As soon as we got back to my girlfriends home I took some heavy duty painkillers and fortunately was spared a full scale killer migraine. I had thought it might be pretty neat to experience the free light show and not the headache but to be honest, it freaks me out and I feel so weird that maybe, just maybe a headache is preferable. At least then I feel I "know" what is going on inside my head.
August 9th, 2004 at 3:01 pm
I HAD MY FIRST S/S EPISODE TODAY. IT LASTED FOR A FEW HOURS?? THE NORM SEEMS TO BE LESS THAN AN HOUR. HAS ANYONE’S LASTED THIS LONG?? IT WAS QUITE SCARY. I THOUGHT : MAYBE MY EYE PRECRIPTION IS TOO STRONG OR: A BRAIN TUMOR, OR: MAYBE SOME COLLEGE EXPIERENCE COMING BACK??
WENT TO THE EYE DOC AND HE DREW A PIC OF WHAT I SAW! I COULDN’T BELIEVE IT WAS COMMON.
August 13th, 2004 at 3:24 pm
Hi everyone,
I happened across your site quite by chance while researching these crazy visuals I have been getting. I’m glad to be able to put a name to these things and to know that I am "not the only one". My migraine auras without pain are usually induced by bright lights & stress, but I think I am seeing a correllation between auras and artificial sweeteners. I tried Splenda last night, for the first time, in my coffee. During the night, I remember dreaming that I was having a migraine w/ aura attack and sure enough I woke up at 3am with the near end of an aura! They have been happening more and more frequently in my sleep! I noticed that the next day, although I did not have any pain, I am extremely tired and irritable. I have found that going to work and actually absorbing and understanding information is more difficult. When they happen during the day, I don’t get scared but I have to lay down for atleast a 1/2 hour. I can’t function because my visual field is blocked by zigzag lines. Thanks for listening.
Cindy
October 1st, 2004 at 1:08 am
Thanks for putting up this site Edith. At least I know I’m not going nuts.
I’ve been having these scintillating scotoma since April of 2000, and they appear pretty much as they are explained in these pages. At first they appeared red white & blue, but now seem colorless. Also, the boarders have changed from a "C" shape to a diamond shape without most of one edge.
I don’t get headaches, ever. The only medical problem I’ve had were three bouts with Deep Vein Thrombosis and the customary blood thinner treatments (Coumadin / Warfarin).
These things irritate me to no end when I’m driving. I’ve had a couple in my sleep as well.
Misery loves company I guess.
Thanks,
Dennis
October 7th, 2004 at 3:35 pm
Hi everyone.. Wow I had no idea that there would be a forum to talk about this. I didnt even think about talking about it other than to my family doctor to which I dont think she takes me seriously.I am 46 now and I had my first "eye thing" as I called them then in 1986. It was a Christmas morning. I was freaking. I had 3 little kids and I felt like I was having a brain seizure or something. My husband told me it was a migraine. It was the strangest thing to not be able to control it. I would just take asprin and just wait for it to go away. I couldnt drive or focus on things . It was always hard for me to descibe them since I had nothing at all to compare it to. I just said it was sqiggly lines and thats what it is to me. I get a round sqiggly area in both eyes. I do have a headache afterwards like in the temple of my head. It hurts to even touch it there. I tend to have them in bunches as I call it. I can go 3 months and not have one then for a month I get then often. I do the same and eat the same as I always have. I am a smoker and with my cold rag laying down in a dark quiet room I will have a smoke since its become so much of a part of my life…lol It goes away in about 30 minutes. Lights from a store or brightness coming in from my windows seem to trigger mine. I do see what has been called floaters. I thought it was flashbacks from my younger hippie days from my exsperimentation with drugs. lol But from reading I find out its not that. I do tend to have brain farts as I call them where i forget something that I shouldnt. I have had numbness in my finger tips and toes. I had spinal surgery ttice in the past 2 years and i thought it had to do with that but my Surgen says it does not. I have heard others with this problem say they have the numbness too. When I am going through a spell of having them alot I tend to have nagging headache that is different than a sinus headache and I seem to have a dizziness feeling alot. Like a spacy feeling in the head. There sre so many things associated with this type of migrane. I have never heard of it being called Scintillating Scotoma, I just had a book and read my symptoms and called it a Aura Migrane. I read here that their is a difference in just the Aura and Scintillating Scotoma, what are the differences?
Thanks for letting me share and I will be a frequent poster here…
November 12th, 2004 at 10:00 am
Well, I won’t bore you with my story. I will describe them as looking like a C shape chunk of stained glass, usually black, blue and orange in color, that flashes from my middle sight, expanding and off to the left until it leaves my perpheral vision, leaving me feeling wiped out.
The first time I had one, I was sure my eyes were about to self destruct or that some fatal event was taking place. This first one gave me a horrible migraine. It felt like I had some angry person beating me on the forehead with a ball-peen hammer! Since then they have been mostly painless but stressful just the same.
This was eleven years ago, just as I got pregnant for my daughter. I had them on and off and they stopped when she was born.
Then I had a couple again when I was pregnant with my son about four years ago.
None since until this past election night. Greta Van Susteren started to disappear and when I closed my eyes, sure enough, there came the stained glass again! I sat there and watched it as it curved around Greta’s face, then the TV, then filled the whole side of my living room, then my peripheral vision then it was gone.
NO, I’m not pregnant (.), but was wondering about the sweetener thing! I had to stop taking Aspartame 15 years ago because it would give me migraines (without auras). And I was drinking Diet Coke on election night and I’ve been using a ton of Splenda lately because they say there is no Aspartame in it. Darn!
So, to keep this short (too late for that!) my takes on what causes these crappy little events in our lives are three possible things. Fluctuating hormones, a dietary allergy and maybe a trigger with sun glare on the drive home. My first aura was after driving home into the western skies! And I always seemed to get them at first right after I got home from work.
Well, anyhow…for now they don’t seem to be fatal…just really, really annoying as long as I only have one every couple years now.
Hear’s to the pretty lights!! :P
Kris
November 13th, 2004 at 12:17 am
G’day.
I went to an optometrist recently to get reading glasses. I asked her if she had heard of SS, and she had! She showed me an excellent picture of the effect in one of her books. She said that many people had asked her about the problem.
This is very different from an experience I had about 20 years ago. I guess awareness of SS is finally spreading.
I told her about this website, so she can refer any other "sufferers" she sees.
I think we should all do this sort of thing as often as we can – it could save a lot of people a lot of worry.
Seeyall,
Neil
November 18th, 2004 at 7:30 pm
I had first episode 10 years ago and had only one or two a year UNTIL this year! Was getting them monthly 6 months ago and now weekly. I do get headaches each time, some moderate some severe migraines with nausea. Has anyone found a food/additive or other chemical exposure connection that may be causing these? My mother got the "light show" occasionally but never the headaches. The headaches/migraines are real killers! -eager for a cure!
December 13th, 2004 at 4:08 am
Here’s some disturbing news… a link to stroke and these symtems.
http://www.medicalnewstoday.com/medicalnews.php?newsid=17704
January 2nd, 2005 at 7:21 am
Hi Everyone,
I’m glad I found a name for this. I’ve had SS very occasionally over the last 12 years or so – most recently three times in each of the last 3 days. I’m sure it’s caused by stress, in my case: in fact yesterday, once I’d worked that out, I did a Cognitive Therapy exercise (David Burns’ self-help techniques) and even as I was doing it, the thing passed off.
Haven’t had headaches yet: I wonder if Cognitive Therapy might work on other forms of migraine, by reducing emotional arousal, tension etc?
Tim
January 3rd, 2005 at 12:42 pm
Thank you for this site as well, it was a relief to see that some others were experiencing these phenomenon. I had a vivid SS last night at about 6pm and it lasted for a good half an hour getting progressively larger to an arch that coverd both eyes flashing zig zags and wavy swirls before the headache set in and my vision started to return to normal. It had happened to me about 3 other times in my life but I never really did anything or said anything about it to anyone. Last night I decided to go to the emergency room as suggested by the local "ask a nurse". I figured it was a migraine but wanted to be safe the doctor told me it was a classic case with the aura and ss. Just gave me an ibuprofen tab. Funny how I have been to a nuerologist, and opthamologist in the past who looked at me like I must be joking when I quizzed them on this. Surely these medical professionals had at least heard of the phenomenon.
I was reading above about those who had been working at the computer when it started. I normally use a powerbook and an imac with LCD monitors. However I purchased a second monitor (an inexpensive CRT) to attach to my laptop for spanning. As I was working I could see the flicker of the CRT out of the corner of my eye but not when looking head on. Regardless this made me nauseous but thought nothing of it. Later after dinner I returned to the computer and started to have the beginning of SS. I asked the doctor if this flashing could have caused it and he said it was a very good culprit. He suggested lowering the refresh rate of the monitor, I had it at 85hz and felt better at 60hz. Also I told him that flourescent lights bothered me and he said they strobe at 60hz.In the same day I had eaten hard aged cheese,, diet caffience free chemical garbage coke, and caffienated cola as well. Think I’ll stick with LCD monitors and get rid of that trigger all together.
January 5th, 2005 at 7:04 pm
Nearly a year ago I posted here that I’d started an ss on Jan. 4, 2004. It’s still there. I’ve seen several specialists and have had MRIs. etc. One neurologist found a tiny spot on the optical cortex in just exactly the right spot, he says, to correspond to my annoying little sparkle.
However, no medical person I’ve talked to is concerned that there seems to be a physical cause for what I’ve been calling an optical migraine for 40 years (back when they went away after about 22 minutes). I guess a physical cause is better than a "mental" cause. I’ve long since given up worrying about the whole thing!
Bobcat
January 15th, 2005 at 11:10 am
Thank God I’m not going blind, or mad!
I’ve just had my fourth SS, and finally summoned up the courage to try and research the symptoms on the Web. I had my first one driving on a country road near my home in England (scary), and my second driving on a motorway in Germany (terrifying). The last two have both come on whilst reading. I’ve been too scared of what might be happening to me to talk to a doctor or optician – or my family.
I found one web-page that talks about SS as being suggestive/possibly diagnostic of glaucoma or a detached retina. Has anyone here been diagnosed with either of these?
ATB
Mike
January 15th, 2005 at 1:06 pm
I asked my doctor about these SS and she assured me there wasn’t anything wrong with my eyes that glasses couldn’t fix. She said the SS are caused by the blood flow being restricted to a portion of the brain. This kind of makes sense since I didn’t see any while taking blood thinners to treat DVT. Now I stay away from vitamin K (which is a clotting factor) and try not sit for too long. Are you taking multivitamins? Check the label to see if vitamin K is included.
Dennis
January 16th, 2005 at 12:14 am
A scintillating scotoma…I never knew what this was until I read http://my.webmd.com/content/article/66/79575.htm
and found a description of what I have been experiencing since I was about 10 years old.
I am relieved to know that there are others who have this inconvienent thing too. But I’m not exactly thrilled about us "having" them though.
I used to get headaches afterwards that felt as if my brain was ripped in two and smashed. Most of the time I would pass out. But since I’ve reached my 30′s, the headaches are so mild that simple asprin does the trick.
Just recently, I have been having my unwelcome visitor again. I used to have them about once every 6 months or so. But last month, I have had one a week. I began to back track on what it might be that would cause this SS to happen.
I love the energy drink "Red Bull". In fact, I’m such a fan of RB that I would consider myself addicted to them. AND they come in handy seeing that I work the night shift. Just in the last two months, I have been drinking them more than I should have been.
That’s when I began to notice that the unwanted SS returned. I don’t want to say that RB is the cause, but since I have went cold-turkey (really) from drinking them, my SS’s have seemed to have went away.
It would be my guess that an excess of caffine in my diet might have been a contributor in enhancing the chances for the SS’s to return.
As one know’s, caffine can speed up the heart and in result raise the blood pressure. And if there is any stress in your life, whamo! You have that lousey, stinking SS….And while you’re driving in traffic too!
But I really can’t say that stress and/or caffine would be the main source causing the SS in my brain. I’ve even dreamt that I was having one and when I awoke, yep, sure enough, it was there.
I’ve just notice that with my increase in drinking Red Bull, my SS’s have returned with a vengance.
I hope that my entry will help others determine what might be causing theirs.
Robert Chwaliszewski
Dallas, TX
January 16th, 2005 at 1:12 am
Thanks for your comments, Dennis. The funny thing is that I stopped routinely taking multivitamins some time before my first "attack" (it doesn’t feel right to call these "attacks", as it was only on the last occasion that I had even a mild headacahe for a few minutes). It had even occurred to me that perhaps I ought to start taking them again! But I think you have nailed a trigger for me – sitting too long. I work from home, but it would be more accurate to say that I work from the office chair in my study, and I often stay in the same position, hunched in front of my computer, for hours on end (and I frequently have pins-and-needles in my feet and hands when I finally stand up). The two experiences with SS that I had in the car both came after prolonged periods of sitting behind the wheel. I’ll try to adopt the routine prescribed for avoiding DVT on long-haul flights, and see how I go. Very many thanks for the clue!
ATB
Mike
January 31st, 2005 at 3:34 pm
I have had ocular migraines since I was about 14 years old. I would have the episodes about once a year. During the past year, I had two about 6 months apart and now I have had seven episodes in the month of January. I am panicked. I know that this stress of worrying about them is making it worse. Should I be panicked? Any suggestions? I am so grateful that I found this site. Thanks for listening.
February 1st, 2005 at 12:53 am
Dear Rosie,
Don’t panic! Until I found this site, I was panicking too, but here I learned that these symptoms didn’t mean I was losing my sight (or my sanity), and that if you had SS without migraine headaches, you were just a very lucky migraine-sufferer.
This may be difficult advice for you to accept right now, but try to relax and enjoy the pretty lights!
ATB
Mike
February 1st, 2005 at 3:31 pm
Thanks, Mike! I guess I just need to put it all in perspective and not be obsessing on the fact that another one may happen at any time. I recently began taking blood pressure medication for elevated blood pressure also. The pharmacist said it may help with the migraines. Any thoughts?
February 1st, 2005 at 4:07 pm
Dear Rosie,
I had another one myself this afternoon, so mine are getting more and more frequent too. Having decided not to let them worry me, I decided to ignore this one, and go to the shops. I found that they are of little real inconvenience, and they give you something to look at whilst you’re queuing to pay for your purchases…
I have no training or expertise in medicine, and therefore really shouldn’t comment on what your pharmacist said to you regarding the blood-pressure medication. Having said that, I doubt that it will have an adverse effect, as circulatory problems and aura migraines do appear to be linked.
Be happy!
Mike
February 2nd, 2005 at 3:19 pm
Well, I had another one today shortly after I got up. Got ready for work and, boom, there it was. Lasted about 40 minutes and then I went to work and it hasn’t reared it’s ugly head again today…at least not yet. If I could just get my mind in the right "mode" to not be obsessing on this stuff, I think they would slow down. When it happens, I just absolutely panic and then when they are not happening, I’m worrying that it will. Oh, my! Wishing everyone a wonderful evening!
February 2nd, 2005 at 4:20 pm
Hello fellow scintilattors, I thought I could give you an update on some healthcare options I’ve been exploring since my last scotoma Jan 1 05.
I haven’t had insurance in ages, but now that I have it through my University I decided to go speak with a doctor. Partly to reenforce what i already knew, but also to just talk about it with someone who has an M.D.
This month after my scotoma I’ve had headacches or just dull pressure on my forehead, twinges of pain, tingling in the limbs for just a second, and flashes or spots in my vision. This happens to me daily usually in the mid afternoon after a long day of studying with intensity.
The doctor immediately knew what I was talking about, and told me she has 3 other students on campus with the same problem. One of things that made me feel alot better was when she said "the ONLY THING that can causes scintillating scotoma is a migraine headache". I’ve had anxiety and panic over having them, but it can put your mind at rest that it isn’t a tumor or something vascular. If you’re having SC you have migraines! Yay! But, it’s just reassuring to know that scotomas are a sign that there ISN’T a larger problem.
The doctor went through the usual battery of suggestions for curbing migraines, and tension headaches which mine are a combination of -
avoid trigger foods
check your posture, do back, muscle excercies
excercise!
relaxation techniques (classical music, jazz will reduce your heart rate)
no smoking
sensory deprivation/escape (migraines are caused by an overabundance of stimulus (sound, sounds, smells, touch) which cause the blood vessels to start pulsating) so make some quiet time, zone out with tv, "sometimes average is ok" on an assignment or job and so forth
She also gave me a regimen of Ibuprofen 600mg at lunch and a medicine called epidrin once a night. A point that was made is that the 200mg ibuprofen capsules that you buy at the store state a much lower dose on the box then can be taken. The rule of thumb is you can take about 2400 mg of Ibuprofen max per day, compared with the 800 mg they set as a max. Lastly, she prescribed epidrin which is taken either at night and floats around in your blood stream all day until the next evening or whenever you feel one coming on. This epidrin is specifically made to halt migraine/tension headaches.
I hope this helps someone and spurs you to go to the doctor and get some meds, you shouldn’t have to deal with it!
February 3rd, 2005 at 12:22 pm
This has ahppened to me twice. The episodes were about a year apart. The second was last night. I have a terrible cataract in my left eye, so if there was a warning I missed it. I see flashing shapes, almost a circle of triangles is how I see it. I was at the computer last night when I just happened to notice it. It went from black-and-white to brilliant colors, depending on if I was looking at the lighted screen. When I tried to look at it directly, it slid to almost out of sight. It didn’t matter which eye I closed, it was always there. It’s actually a very interesting pattern … pretty. But I need to know what it is. I would appreciate an answer as ignorance may be bliss, but it may also kill.
Thank you.
February 3rd, 2005 at 3:16 pm
It sounds to me like either an SS or retinal detachment. Since you have a cataract, perhaps it would be best to have it checked by the opthamologist to make sure something isn’t going on with the retina as well. Take good care.
February 3rd, 2005 at 10:46 pm
Hello Edith,
It is several years ago now that I also had the phenomenon diagnosed by the neurologist as "migraine with visual aura".
The neurologist said he had them very frequently himself and that no treatment was needed.
I continued to analyze the situation over and over again and noticed that I had recently changed the settings of my computer.
By accident it had flipped into the normally frequncy mode of 60Hz. Because I am short-sighted, I am sitting very close to the screen, and can "see" the flickering in the eyes corner.
I theorized that if my retina can follow these disturbances, that my brain might not like them.
I switched the display setting to 75 or 80 Hz.
And never had the same problem again.
Untill one day when I got a temperary PC; same problem: zagged broken vision, etc.
Switched the computer display back to 80Hz. The problem did not re-occur since then (1 year ago).
I was triggered by your remark: "maybe on the computer too often.
Hope this comment reaches you.
Kind regards from Eindhoven, the Netherlands.
February 8th, 2005 at 4:23 pm
Call me paranoid… I renewed my drivers license today at the DPS. Of course I’m sitting there wondering "what if I have an SS during the eye exam". It did not occur… thank God! Oh yes, if anyone in Texas is wondering, the last two characters on line 5 of the eye exam is 66.
Happy motoring!
Dennis
February 10th, 2005 at 4:01 pm
No, Dennis, you are not paranoid. We all have those same fears. It’s just a part of this process that we go through.
February 11th, 2005 at 10:15 am
Hello everyone. I’m so happy to find this site! I’m 38 years old, and this happened to me for the first time last night. I’m a very analytical person, and from that point of view it was interesting. But otherwise it was kind of scary. It was amazing to come here and find such an exact description of what I experienced! :-)
I was sitting in bed playing Solitaire on a laptop, when I noticed that I couldn’t see the right-hand side of the card I was looking at. I did some searching on the Web and found that it was also very hard to read. We must really depend on being able to scan ahead. I had to simply look at each word one at a time, because my right side peripheral vision was…just strange.
I tried holding up two fingers a few inches apart. When looking at the right-hand one, I could see the left-hand one in my peripheral vision with no problem. However, when looking at the left-hand finger, I could tell there was possibly something in my right-hand peripheral vision, but I just couldn’t see it or concentrate on it. Because it didn’t make any difference which eye I used, I figured it was a brain problem and not an eye problem.
I then noticed a smallish sparkly area just to the right of my center of focus. It seemed to sparkle or shimmer in primary color lines, maybe a little like when the vertical hold is off on an (old) TV. :-) Over 20 or 30 minutes it expanded into the backwards "C" shape I’ve seen described here so much and eventually moved out of my field of vision to the right.
For about two years, I have had trouble with what my doctor thinks are migraines. Usually I would wake up with a headache, eventually almost every day. I have been completely off caffeine for a year or so, and that has helped a lot, cutting the headaches down to maybe once every three or four weeks. I have also tried taking 25mg of nortriptyline at bedtime as a preventative. This also seemed to help and I slept better, as well.
I’m currently not taking the nortriptyline, but I guess I will call the doctor today and let her know what happened. Interestingly, I have been behind on sleep for the last several days, and I haven’t been sleeping well when I do sleep. From what so many here have said, there does seem to be a connection there.
February 15th, 2005 at 1:55 pm
It’s been almost a year since my last post and a reader emailed me about the link between SS and the Amplatzer heart device that started my migraines.
I was getting SS nearly every day, mostly with an accompanying migraine. I kept a food/migraine/ss diary and it really helped me identify triggers, as well as feeling as if I had some control over the migraines.
I take feverfew every night before bed and it really helps. I stay away from the following:
- Long stints at the computer
- Aspartame
- Excessive caffeine
- Red wine
- Cigarettes
- Salt (boo.)
- MSG
- Atkins/Low Carb Diet: low blood sugar + salt = migraine
Since I’ve implemented the changes to my diet and lifestyle, I’ve seen awesome results. I was getting SS every day or so. Now I get one about once every 2 weeks. Migraines are still once a week. Maxalt works great – if you get associated migraines, take one at the first sign of a SS.
That’s my experience and I hope it helps someone! Edith, thank you for making this site available. It was very therapeutic when I was battling the daily migraine. It’s so good to see that we’re not alone in this.
February 15th, 2005 at 2:46 pm
Thank you for your post. I have a question that perhaps someone can help me with. As I stated in my last post, I have been bothered with ss since I was about 14. I am now 57. They would occur about one or twice a year after periods of stress. Since Christmas time, I have had 11 episodes and am concerned. They are the typical ss. Sometimes they are in the left eye and sometimes in the right eye. I have no headache afterward. Has any one had any help from taking ibuprofen? Also, does apply ice to your forhead or back of the neck help the arteries settle down? Any help would be appreciated.
February 18th, 2005 at 12:47 pm
Since descriptions have been so well covered here, I’ll just mention my triggers. I’m 47 years old, and have experienced numerous incidents of SS for the better part of ten years. They’ve been most irritating when I’ve been speaking in public, and couldn’t focus on my notes!
I’ve found that by cutting out coffee and tea, I can reduce them to one or two a year. However, just one cup of coffee per day for three days in a row virtually guarantees a re-occurence. Sometimes just one or two cups of tea will do so, even before I’ve finished drinking it.
Thanks for the site! As so many have said, it’s nice to know I’m not the only one, and to get some insight into the phenomena.
February 20th, 2005 at 4:16 pm
As many others, I am glad to find this sight. I have not seen a post from anyone that has had a SS last for a month. My husband, (who had a very extensive neurological work-up several years ago) and has had auras since he was young, is now having an aura that has lasted almost one month. He’s pretty hardheaded and doesn’t want to go to the Doctor fearing the battery of test they might want repeated. Has anyone had such an extensive aura? I am making an appointment for him tomorrow with the neurologist. I’ll take him kicking and screaming if I have too. He thinks it will be a real disapointment, and they will tell him there is nothing they can do to help him. I surfed some on the internet, but they seem to just deal with the headache part, not SS. I am open to any suggestions for internet reading. And am open to any other possible cause besides SS.
Thank you so much for your quick response.
Karen
February 25th, 2005 at 6:35 am
A couple of questions for everyone. I’ve posted here before so I won’t go into that, but have the same symptoms as everyone else. Yesterday, I had two episodes where the scotoma didn’t really materialize. Lasted about 5 minutes and left as soon as it came. Is this worrysome? Also, does elevated blood pressure increase SS? Thanks in advance for any help.
February 25th, 2005 at 8:48 am
> Also, does elevated blood pressure increase SS?
I took my blood pressure during my episode, and it was 153/110, fairly high. Maybe I was just worried. My blood pressure is normal otherwise.
February 25th, 2005 at 3:17 pm
Thank you! What I was really looking for was if elevated blood pressure can cause more frequent SS. Thanks again :0)
March 1st, 2005 at 9:26 pm
Interesting articles about scintillating scotomas. I am 42 and have had these off and on since I was about 19 years old. These used to really freak me out when I was younger but I have since come to realize that they are a remarkably common phenomena. Lots of people get them and don’t know that many many others get them but don’t talk about it because frankly they would rather forget about it. Now it’s just a very occasional annoyance that I have learn to deal with, kind of an old friend but they still panic people that don’t have long experience with them. There are a couple things that I have learned can trigger them however:
– Stress – like if you are stressed out about college finals or career matters or if you almost got run over by a truck yesterday and it still bothers you. If you are the kind of person that internalizes stress then these
things act like a stress discharge, they still are annoying but they strangely seem to dissipate stress. So if you are a worrier rather then the true happy go lucky type you are definitely a far better candidate for scintillating scotomas. Staring at computer screens all day while under tight deadlines can bring it on. I have found that the sort of people that are very care free / happy go lucky / devil may care types are almost never bothered by migraines and I don’t think this is any coincidence. And the periods of ones life where people are the happiest and most fulfilled are for some reason relatively free of migraines even when they have suffered migraiines at other
periods.
– Over eating certain foods – they occur more often after having a big meal or a change in you usual eating patterns. I can usually bring one on the morning after chuging a gallon of grapefruit juice. Red wine is a problem also.
But in general I have never found or heard of them causing any long term problems. And the doctor isn’t going to find anything wrong with your eyes no matter how hard he looks (and he may stare at your retinas for a while trying to figure it out if he doesn’t know about ocular migraines)…these are migraines.
March 9th, 2005 at 10:46 am
Hi. I posted some comments about a year ago about my experiences, which seem to be consistant with others’. I just experienced another aura yesterday. Just wondering, has anyone heard of an increased risk of stroke in young women with having these migraines with auras? FYI, I don’t get headaches with the aura, just the aura itself and I’m 32.
Denise
March 22nd, 2005 at 10:47 pm
Bless you, Edith, for this website. I am a new member of the "S/S club", having only experienced them three times…twice in the past 13 hours. How nice to learn so much about S/S…and so very aprreciative of dietary advice, etc. After reading these comments I am quite relieved about my new condition. Instead of worrying, I’m guess I’m just gonna sit back & enjoy the show! It is absolutley beautiful…such vibrant color and intricate patterns. Mine are backwards C shaped zig-zags. I guess I’m lucky…they are beautiful!
March 25th, 2005 at 10:40 am
Dear Ms Frost, just to inform you that we have quoted a piece from your weblog on a webpage about migraine and music, see http://www.migraine-aura.org/EN/Migraine_and_Music.html . We would like to quote some more materials from your website, i.e. your photo and the drawing featuring the many zigzags, would you permit it? Kind regards, Klaus Podoll MD
March 25th, 2005 at 10:50 am
Hi Dr. P! That zig-zag drawing isn’t mine; I shamelessly stole it from some other website, I don’t remember which. So as long you’re okay with re-stealing it, go ahead! And you’re totally welcome to use any picture of me you like, no worries.
March 27th, 2005 at 4:58 pm
I’m so glad I found this thread. I’ve been having ocular migraines for over 10 years. I’m 34 years old. I have never talked to anyone about this, primarily because I find what happens very difficult to explain. It’s nice to know that there are others out there who go through the same exact thing as me. Mine happen every few months and last for about 30 minutes. I’ve never really kept track of them, but I think I’m going to start, so I can try to figure out if there are certain triggers causing them.
April 10th, 2005 at 1:03 am
Hi, I have had SS for a long time. Yes, they appear when the adrenaline has gone up very quickly (emotions), or because of very strong light. I am 65 and have had a lot of experience with them. Taking aspirin, like in a regular headache, helps dissipate SS faster. Lying down in the dark also.
There are probably several physiological reasons for SS. One has to do with blood pressure (hence the link with caffeine or wine), another one with electrical activity in the brain (hence the link with the eyes and strong sudden light).
So avoid emotions and wear dark glasses. Or live with SS.
I have now been taking anti hypertension medicine for a few months. I have no more SS during the day but I have them when I wake up in the morning or in the middle of the night.
Nobody’s perfect.
April 23rd, 2005 at 8:14 am
Dear All,
I am doing a research project under my doctor’s suggestion on Aura Status. My doctor is Dr. Frank Clifford Rose director and consultant of the London Neurological Centre at Alliance Medical, Honorary Consulting Neurologist at Charing Cross Hospital and a Trustee of the Migraine Trust. He has also written several journals and books on migraine and introduced Sumatriptan to the world. He has agreed for me to do an internet research project to find people with a similar problem as mine so that we can all better understand it.
I am a “lay person” in the world of neurology and work as artist who has recently had this vision problem and am determined to make it stop. I plan to compile as much information as I can from the internet and then to present it to Dr. Rose. What ever he concludes or comes up with I will share with everyone who has participated, and who knows maybe will find a cure!
The project is for anyone who feels that they might have Aura Status, Scintillating Scotoma, Status Migrainous, Persistant Migraine Aura or Prolonged Visual Disturbances or has a vision problem that last for long periods. If you are interested please fill in the questions below and email it to me at statusmigrainous@yahoo.co.uk Please try to cut and paste it to your email so I don’t have to open attachments. Include as little or as much information as you like, I will make sure that all your information is kept confidential and will only contact you to let you know the results of this project.
Thanks for your help!
Sofia Greene
1. Name or screen name (optional):
2. Email (optional):
3. Location (optional):
4. Age:
5. Sex:
6. Nationality and Race (optional):
7. Do you have classic or common migraine when did it begin?
8. What do you take for your classic or common migraine and does it help?
9. What if anything have you been diagnosed with?
10. What is your visual problem and how long does it last?
11. Any other problems that you think might be related?
12. What do you take or do for your vision problem and does it help?
13. Have you found a trigger for your vision problem?
14. What tests have you had and the results?
15. Other information you want to provide?
April 23rd, 2005 at 8:24 am
Dear All,
(Don’t worry this is the last time I’m putting up this request on this website)
I am doing a research project under my doctor’s suggestion on Aura Status. My doctor is Dr. Frank Clifford Rose director and consultant of the London Neurological Centre at Alliance Medical, Honorary Consulting Neurologist at Charing Cross Hospital and a Trustee of the Migraine Trust. He has also written several journals and books on migraine and introduced Sumatriptan to the world. He has agreed for me to do an internet research project to find people with a similar problem as mine so that we can all better understand it.
I am a “lay person” in the world of neurology and work as artist who has recently had this vision problem and am determined to make it stop. I plan to compile as much information as I can from the internet and then to present it to Dr. Rose. What ever he concludes or comes up with I will share with everyone who has participated, and who knows maybe will find a cure!
The project is for anyone who feels that they might have Aura Status, Scintillating Scotoma, Status Migrainous, Persistant Migraine Aura or Prolonged Visual Disturbances or has a vision problem that last for long periods. If you are interested please fill in the questions below and email it to me at statusmigrainous@yahoo.co.uk Please try to cut and paste it to your email so I don’t have to open attachments. Include as little or as much information as you like, I will make sure that all your information is kept confidential and will only contact you to let you know the results of this project.
Thanks for your help!
Sofia Greene
1. Name or screen name (optional):
2. Email (optional):
3. Location (optional):
4. Age:
5. Sex:
6. Nationality and Race (optional):
7. Do you have classic or common migraine when did it begin?
8. What do you take for your classic or common migraine and does it help?
9. What if anything have you been diagnosed with?
10. What is your visual problem and how long does it last?
11. Any other problems that you think might be related?
12. What do you take or do for your vision problem and does it help?
13. Have you found a trigger for your vision problem?
14. What tests have you had and the results?
15. Other information you want to provide?
May 12th, 2005 at 3:23 pm
I developed occular migranes (three 10-minute episodes in the last 12 months) and the only thing I could relate it to was using Splenda in coffee, oatmeal and cereal. Since I have not used Splenda, no ocular migranes. I you have SS or occular migranes (benign temporary visual disturbances) and are using Splenda, stop the Splenda and you may get rid of your vision problems. Good luck.
June 16th, 2005 at 10:56 pm
Hi, I just found this site. I’m a 24 y.o. female with no prior history of migraine headaches. A couple months ago I started having periodic episodes of blurry vision that would last 1-3 hours each. The pattern was always the same, a blurry spot in my central vision that was donut shaped, with a clear spot right in the middle surrounded by a blurry ring. If I covered one eye or the other, it was still there, but it was more pronounced with both eyes open. I was having these episodes 1-3 times a week, but was ignoring them because I was preoccupied with other things. Then last Sunday I had a particularly bad one where I could hardly make out the words on the page, my vision was so blurry. I got scared and went to a doctor, who told me it was related to migraine. I have never had a migraine headache, although my younger sister has had them since childhood, which increases the odds that I would get migraines too, according to the doctor. I haven’t had any blurry episodes for several days now, but for the last two days I have had a persistent sensation of having a blind spot in my upper right visual field. However, when I test my peripheral vision by staring ahead and wigging my fingers off to the side, I can see them normally. Does this sound familiar to anyone else? Could something be wrong with my retinas, or is it all in my brain? I’m 24, I have no known health problems, I’m at a normal weight (5’3" 110 lbs), and I take no meds except for birth control pills, which I’ve been on for almost 5 years with no complications so far. I really appreciate this site and I’m so relieved to know that other people experience similar symptoms. I am concerned about this persistent sensation of a blind spot though, and would appreciate any input you could give me as to whether I should get it checked out again or just dismiss it as part of the migraine symptoms. Thanks everyone, and take care.
- Michelle
July 10th, 2005 at 11:14 am
As a s/s "sufferer" I wish to add the following:
1. If this is neurological, why does the shimmering C move in the direction the eyes move?
2. I am beginning to relate to the aspartame connection- I had my first as a musician during a concert about 5 years ago, with a bilateral shimmering(flaming) small "C" that did interfere with reading the music, but I could still see peripherally enough to play. The C got larger and and more diffuse, drifting off to one side (left I think).
I was left with a slight "dizzy" headache concentrating around the eyes, like a sinus headache. Bright lights were annoying after this. I’ve had these rarely, and did not have them for a year until recently (Christmas?), deciding it was time to limit my soda intake, drank diet coke.
I’ve had at least 4 since then; today’s was triggered by looking at the image of the skylight
projected by the sun on the floor as the ceiling fan flashed in shadow. And 1/2 hr before, I drank a diet Coke! Googling this site made me wonder about the Aspartame.
July 11th, 2005 at 10:12 pm
i have read alot of the posts, but i admit not all! i started with the 2003 ones and went forward, so i am not caught up on the most recent posts. I wanted to comment though because i read Pete’s description of his migriane auras that involve "several deja-vus happening all at once". This happened to me in May and it was one of the most frightening experiences in my life! I have a three year old son that almost ran into a parkinglot when this was happening to me. thank god my husband was there.
It was like dreaming and being awake at the same time. Like being in two realities at once. i felt that i had lost my mind! and then after about a half hour it started to subside although it took a month for me to feel more clear headed.
today i had an SS. it is my third. it lasted the classic 20 minutes or so. i still feel like there is a very faint "blank spot" in my vision 10 hours later. things still seem a little strobey also . i didnt get a headache but my eyes were sort of hurting afterward and i was extremely groggy. i took a nap for about two hours. oh, also , all day i have had creepy crawly sensation on my left calf, in an area about the size of a burger patty, lol. cant think of a better size example. it hasnt gone away yet. even though it is comforting to read the experiences here, i still feel fearful it is MS or stroke. i am 30 . ive had migraines since adolescence, and may have had the childhood kind where the child just gets alot of stomachaches and nausea. but i only started getting them with more frequency ( right now i am up to once or twice a week) last year. I hit my head in december and that seems to have messed me up even more.
my first ss was over 3 years ago when pregnant. the second was last summer, and now one today. i too appreciate that you have kept all these posts here, Edith. thanks
July 16th, 2005 at 11:14 pm
Pay attention to the shape!
I’m from México, 53 years old, I can have several months without SS (from little to no pain), but sometimes like today, I can have it twice. Something I noticed and I really think can give Knowledge people a hint, is that today, just like the other days I have had it twice, I have a semicircle like a C (both eyes), and the second time I get the other half of the circle. Sometimes I get ss with the whole circle, and then I know it won’t happen again soon, but when I get a semicircle, I know, I can have it again very soon,(same day or before two days). I Suggest to close your eyes for more than a minute, or to look a plain surface and notice the shape of your scotoma. If many of you notice the same, then Doctors may get a hint out of it.
I don’t relate it to Stress, Diet, smoking, drinking, sleeping, nothing!. As it is very similar to many people I guess the best we can do is push the doctors to take it more seriously and find and explain the mechanism. It’s really so strange to have so many steps almost allways the same, and nobody knows exactly why.
Thank you.
July 24th, 2005 at 6:06 pm
I JAVE TRACED MY SS TO STARBUCKS COFFEE OR WHEN I HAVE A COKE AND CHOCOLATE AND OR COFFEE.
IT IS DEFINITELY A SIGN OF CAFFEINE OVERDOSE FOR ME.
NO HEADACHES
July 30th, 2005 at 3:28 pm
Hi all. Just found this site.
I have occasionally experienced SS during the last 6 years, usually months apart, had about 4 this year. It’s never bothered me much. I have never had a headache with them and as far as I can recall I always get them in the right eye. I had put it down to being a contact lens wearer, not sure why – but my mum tried contacts for about 3 months approx 4 years ago and she experienced a couple of SS episodes then. I’ll have to check with her to see if she ever had any more since.
Anyway, I had 2 episodes within 3 days approx 2 months ago. I don’t know if there is any connection but 3 days after, I was working on my computer, when I went totally blind in the right eye. It started with the right edge of my periferal vision being blacked out, closely followed by the bottom, then the top and the left. That left me with approx 50% of my visual field remaining. At first I thought I was blacking out but realised it was only happening in the right eye and I didn’t feel giddy. Gradually the blind area grew leaving me with an ever decreasing area of sight. Tiny dots of visual field went blank one after the other – kind of like pixels on a computer photo being blotted out. For a moment I was left with a pin hole view – then nothing! Totally dark, no shapes, colours, nothing! Darker than when you close your eyes. Naturally by now I was very scared!!
I went over to the mirror and looked with my left eye to see if anything was apparent. My right eye looked normal and the pupil was dilated to the same degree as the left eye. I went and sat down, quite distressed, closed both eyes and counted to 20. on opening……no change. I closed them and counted to 30….still no change. Counted 30 again…still no change. After the next count when I opened my eye I could see out of a little strip accross the very bottom. Over the next 1-2 mins this strip gradually got wider until eventually I got all my vision back.
I have had my eye looked at, everything seems fine. My G.P. thinks it is neurological. As I have no history of migaine and had no headache before, during or after this blindness episode he is referring me to a specialist. My blood pressure is fine, cholesterol levels fine, no sign of diabetes so he now wants to rule out brain tumor.
Has anyone else also had a blind episode like mine in addition to SS?
I had another SS last night. This time it was coloured – but I noticed the colours were "borrowed" from an object (the lid to a jigsaw puzzle)in my periferal vision just below where the arc was. It lasted for the usual 15-20mins.
Following on to comments by others, I use sweetners in tea/coffee, drink diet coke and am usually tired when the episode occurs. (though I am often even more tired and have no sign of SS!!)
I am right handed and always seem to get SS in my right eye. Do others, who just get SS in one eye, favour the same hand as the affected eye?
Can’t think of any other info.
Regards
JennyB
July 31st, 2005 at 9:43 am
I had my first S/S in 1995. Nearly fell off the chair I was sitting on. Went to Opthamologist and he said it was a "brain" and not an eye issue. Ordered a CT scan for me and found a menengioma on the right side of my head right on top of sinus area. But that wasn’t causing the S/S. I do have episodes when I am not getting enough sleep. In fact, last evening, I was extremely agitated and today the aura came. I took an aspirin and hope that does it.
Has anyone come to any medical conclusions as to what the cause is, or treatment?
Would really appreciate this. I was 62 when the first one hit.
Alma
August 1st, 2005 at 7:53 am
Hi Edith, nice site, I came to it by looking up Scintillating Scotomas. I’ve been having them since I was 12. Anyhoo, Just wanted to let you know that from my research, they are very predominant in people with artistic tendencies. I was the front man for montreal’s ska band the Kingpins for 5 years and have been singing/writing for most of my life. I also had an episode during a show in front of 1000 people. Very freaky experience. The only other person I know who has them is a friend of mine who happens to have been a painter/artist all his life. Maybe we creative types are just hard wired that way. Look at it as a badge of honor. CHEERS! Paddy, Montreal Canada.
August 4th, 2005 at 7:02 am
Dear Edith,
I came back to your site looking for updates of the "Scintillating Scotoma" postings.
The more recent posts show as an error page.
After getting this darn thing twice a day for the past 4 days, I’ve now decided to go see the doc about them. They’ve also prompted me to have a go at reproducing the ‘flashing’ visual as an animated .gif file.
If you want to take a look, please go here:
It’s not quite right but sort of close. I’ll be copying it to disc for my doc to look at and get a better idea of how the SS’s appear to me.
Thanks and best regards,
Susan
August 4th, 2005 at 7:35 am
That’s weird, I’m not getting any errors no matter what URL I try. I’ll write to you privately and try to sort that out… in the meantime I moved your post to this one, which is where all the current SS posts are going (whether they like it or not, heheh!). The gif you made is great! I agree it’s not exactly what we see but it comes pretty darn close. It would be soooo hard to reproduce it exactly… I’m not a visual artist so I can’t imagine how one would do that.
August 12th, 2005 at 1:47 am
Dear Susan (post August 4, 2005), we would like to include your animated migraine aura illustration in the ‘visual archive’ of migraine auras at http://www.migraine-aura.org , I hope you don’t mind? KP
August 12th, 2005 at 2:01 am
Dear Ms Frost, could you forward my e-mail to Paddy Frost, former leadsinger of the Kingpins, who posted to your forum August 1, 2005. I would like to ask him whether his artistic work as singer (composer?) was ever influenced / inspired by his migraines ( http://www.migraine-aura.org/EN/Migraine_and_Music.html ) and whether he could mediate a contact to his visual artist friend to ask her whether she can contribute to our project, Thanks – KP
August 12th, 2005 at 8:04 am
Both Susan and Paddy (Walsh, not Frost) have notifications set for comments on this thread, so they should hear ya. S&P;and everyone, y’all should really go check out migraine-aura.org, there’s a lot of stuff over there, very interesting.
August 13th, 2005 at 5:16 am
Klaus…Sure thing. I don’t mind at all.
Edith…Thanks for the email. Sorry I’ve taken so long to reply, the last two weeks at work have been truly hectic. (I’m pretty sure the added work stress has been the cause of the several recent SS’s I’ve had.)
I showed my doc the animation, he believes ‘vitreous detachment’is causing the auras. Now he’s sending me off to see an eye specialist. As my SS’s seem to be some kind of hereditary thing (my mum, older sister and daughter have them too) I think he’s wrong but, hey, he’s the qualified one, not me! :)
I’ll check out that migraine-aura.org site, thanks.
Paddy…You might have something there, I’m an ‘arty’ type, left-handed and almost all my SS’s have been ‘in’ the left eye.
PS: thought I should mention too, I’ve never used an artificial sweetener but I do drink a lot of coffee and maybe eat too much chocolate. :)
August 13th, 2005 at 9:29 am
Edith, thanks for forwarding my messages and sorry for the typo
Susan, thank you! Please keep us informed about the other doctor’s diagnosis. I will send a note to this forum as soon as the webpage with your image will be on-line. KP
August 14th, 2005 at 1:39 pm
Hi All,
Found this web page which is a good indication ss is to do with migraine. It does list pheynalaline amongst the trigger factors(which is in sweeteners containing aspartame – which itself is in diet drinks and some foods such as prawn coctail crisps).
It may also explain my episode of temporary total blindness in one eye – although I never had a headache with that either.
Regards
Jenny
http://www.eyemdlink.com/Condition.asp?ConditionID=288
August 16th, 2005 at 1:51 pm
Dreams of chase or pursuit, falling, sex, flying, nudity, failing an examination, one’s own and other’s death, fire, teeth falling out and some other themes experienced, if only rarely, by many people all over the world have been labelled "typical dreams"? Did any one here experience any variety of such typical dreams being followed by migraine headaches after awakening? Would be grateful to learn more about these experiences for a study of the relationships between migraines and dreaming (http://www.migraine-aura.org/EN/Disturbances_of_dreaming.html), Thanks KP
August 25th, 2005 at 3:16 pm
Hi All,
Ive been off the aspartame for nearly a month now but I had another SS last night.
It was a weird experience…..
I went to bed ar about 11pm after a non stressful day. Went to sleep and then at about 5am during dream sleep, I dreamt I was having an SS and was looking for a quiet place to sit out the experience. Then I woke up to find I was in the middle of an SS for real!!
This time a piece from the tip of the arc broke away and didnt follow the main bit outward toward my periferal vision. It stayed near the middle. I was a bit worried I was going to be stuck with it but it faded about the same time the rest disappeared from view.
Klaus
If its of any interest to you the dream immediately prior was a disagreement with a family member after which I ran out the house and was searchimg for somewhere to "hide". As I was doing so I got the SS, then thought "great! now I’m having an SS attack!" so was even more keen to find a secluded spot. I woke up before I succeeded.
Jennyb
September 8th, 2005 at 7:48 pm
I just join Yahoo mail service today and happened to print out the terms of service. I was very surprised at #17, part e. which describes that a small percentage of users may experience epileptic seizers when exposed to certain light patterns or backgrounds on a computer screeen or while using the service. It continues on and then includes altered vision as a symptom while using the service.
In May I experienced a scintillating scotoma for the first time. I’m sure it happened after I had been on the computer.
Isn’t that interesting? Ann
September 11th, 2005 at 8:33 am
I have had random episodes of ss since a motorcyle accident in 1983. I just recently heard that the auras are considered as a type of migraine, and that there may be specific triggers.
September 11th, 2005 at 5:52 pm
Well how weird. I’ve been searching all evening for more information on migraines, visual aura (and dizziness), and searching for "scintillating scotoma" send me straight to Edith’s site, one of my favourite musicians. Hi Edith, I’m glad we share something in common, even if it’s scotoma, scintillating or not (mine do). My history is that I had really painful migraines when younger, but now often the pain is mild or non-existent. The aura is classic blind-spot then expanding arc as others have so well described – and I love that animated gif on the last page, it’s exactly it.
I’ve always seen it as fairly benign now that I get little pain, know that it’s to do with vascular issues and bloodflow in the brain. Did anyone comment that they think the rate at which the bloodflow constriction moves across the brain is directly related to the speed at which the aura widens into an arc and leave your vision? I used to think if I relaxed really and quickly an well, I could make the arc shrink into a dot again and not get the headache. Seemed to be true sometimes, maybe relaxing enough to make normal bloodflow resume.
The reason I was hunting again tonight is that I’ve had two disturbing "vertigo" type attacks in the last week. They "feel" migrainish to me – I can’t explain that better than one side of my head behind my eyes feels more pressured. You can get vertigo-type symptoms with migraines, but it can also be other stuff. I lost some inner ear hearing a year ago (tested and unexplained), which doesn’t help me listen to Edith so much, and I’m worried it’s associated with that instead. No pain, just head-spinning sideways feeling, sudden onset. Oh, I’m ill with all sorts of stuff, but my weblog tells the tale at huge and boring length.
I never thought I’d be posting to Edith’s board about migraines! Personally, I think for you it’s all those cars and parties, Edith.
September 17th, 2005 at 10:41 pm
O.K., I’m viewing one now as I type. But mostly in the left eye.
This is unsettling. I just started working as a letter carrier for the post office. What happens if I experience one while I’m driving? Dammit! I can’t let this interfere with my livelihood. Should I go back to taking blood thinners? I’m without health insurance, so the constant blood tests are not feasible.
Fuck it! It’s not my truck. I’ll do whatever I have to do to bring home a paycheck.
Let’s roll.
October 22nd, 2005 at 8:00 pm
I guess my experience is similar…..I had these weird C zig zags for a few years…about 2 a year. This last week I had two, the second one very long and a headache after. By coincidence, I was seeing my opthamologist on Friday and told him…a brilliant Irish doctor that I have been going to for 40 years, amazing. He said, ‘It’s migraine, etc., etc.". Not to worry and the best thing to do, if you can, is to put one hand into hot water and it will make the arteries expand and the SS will go away. Next time, I am going to try it,
Susan
November 23rd, 2005 at 1:08 pm
Hmmmmmm didn’t work for me
Jenny
November 23rd, 2005 at 7:19 pm
Nor me Susan.
I’ve been keeping a ‘log’ on these episodes and what I’m doing when they occur. Seems to be too coincidental that almost every attack I’ve had over the past 5 months occurs whilst I’m stressed out for some reason. It’s been a real bugger trying to read previous meeting ‘minutes’ out to a crowd of members when one of these things hits. That’s happened 3 times now and I think those members are beginning to think I’m nuts! Arghh.
Susan.
November 24th, 2005 at 3:35 am
One evening I reduced the amount of time during an SS episode by having a pair of binoculars hanging around my neck. Strangely, this makes sense. When experiencing the sensation of passing out, the medico’s say put the webbing between your thumb and forefinger against the back of your neck to prevent blood loss from the brain.
Sorry, no guarantees.
November 27th, 2005 at 6:17 pm
Appreciate the sharing of migraine information….it has been very helpful. Perhaps my experience will be of interest to someone.
My experiences with migraines started as early as I can remember. They were classic migraines with the aura and the pain. Over time they evolved to ocular migraines (at about age 50) w/o the pain. I am now 65 and just experienced my first tranisient global amenesia (TGA) attack that lasted about 4-6 hours. It happened while I was exercising. Exercise seems to cause the ocular migraines as well. Since then I experienced a couple of days of euphoria followed by 4 days of ocular migraines.
MRI/MRA did not show any blood flow problems. They did find a tumor on the pituitary gland…..not sure if that will amount to anything….have yet to see the doctor about it.
Thanks again for the sharing
Pat
December 1st, 2005 at 6:28 am
Hi! I have been having ss for about 7 years (I am 30). At first I was very scared and didn’t know what was happening. Then I would get anxiety too. Now I get them about once a week, about 20 min, and I don’t let it bother me anymore. I usually take some ibuprofen because after the aura is done I usually have a dull, mild headache. I think stress is a factor and I also get them a lot if I have a hangover! I used to try eating when I got them, but that doesn’t help. Luckily they usually don’t last long. :)
December 2nd, 2005 at 8:51 am
Well, I just experienced my first SS about an hour ago. At first, I was worried about a detached retina; after seeing the phrase "Scintillating Scotoma" a few times, I Googled it and arrived here.
Whew! I really appreciate your site. I feel much more at ease now. All symptoms are gone, with no headache. I just turned 50 (hard to believe!), am myopic, etc. Everything fits.
Thanks again – Randy
December 2nd, 2005 at 10:36 am
I’m having an SS right now. The left 25% of my visual field is significantly disturbed and I feel slightly nauseous. My ears are ringing with a constant hissing. It is very hard to type.
I have been getting them about every two weeks for the last six months after only getting them every few years, starting when I was 13.
It’s pretty unpleasant and I wish it would stop. They last about 1/2 hour.
December 17th, 2005 at 3:44 pm
I FELL INTO YOUR SITE WHILE SCOPING. I HAVE HAD BOXES OPEN UP IN MY LEFT EYE WITH ZIG ZAG PATTERNS , BUT THE BEST WAS WATCHING A SMALL GLOBULAR TREE RISE FROM MY GREAT ROOM FLOOR AND THE TOP TURN BRIGHT RED AND GLOW.NO STIMULANTS WERE INVOLVED, BUT THIS WAS ONE FOR THE BOOKS. IT LASTED FOR ABOUT 10-15 MINUTES AND THE WENT. I WAS TOLD THESE ARE PAINLESS MIGRAINES. I HAD A BRAIN SCAN AND IT WAS NORMAL. THE FLYING SPOTS COME AND GO. I HAD WORK DONE ON THE LEFT EYE A WHILE BACK BUT THIS WAS A CORKER UNTIL I WAS TOLD . THE DR. WAS SURPRISED WITH THE TREE BIT/ IF IT WAS NEAR X-MAS I WOULD HAVE HUNG SOME TINSEL ON THE TREE.
December 18th, 2005 at 5:17 pm
Thank You Edith
I have had migraines for 14 of 18 years ending about 4 years ago. A year later I was clubbed by a hostile tow truck driver with a steel bar. For 3 years I was on a waiting list for florescopy as my migraines came back but with neck involvement. I now suffer from Cervicogenic neuralgia. But after all these years I have developed ss but just within the last 6 months. I get the effects in both eyes or one at a time , left or rignt. It is disturbing to me as it is getting worse. What was recently the equivelent to the effect of marquis lighting on old theater signs has now progressed to white outs taking 1/5 of my vision for 5 to 10 second intervals. The Marquis effect happens daily now with or with out migraine.I do however suffer from occipital neuralgia that shoots down my right arm and is severely painful.
For all of those afflicted , be strong.
Thanks
January 2nd, 2006 at 5:17 pm
I’m about to turn 42 and had SS’s more and more frequently thru my late 30′s. Then I began taking low-dose aspirin for the much-publicized heart benefits. The SS episodes dwindled to almost zero – And they start up again if I forget to take my aspirin for a week or so.
Problem is, I believe all the aspirin causes ringing in the ears, so I have cut back on the aspirin and been putting up with the SS’s. Had one tonight which was not quite the usual C shape, but more like a forked Joshua Tree…
Thanks Edith, for creating this forum for us! Maybe they should call it a forus instead of a forum. Eww, might be a song lyric in there. Er okay I will stick to my day job.
But really, thanks, and try those itty bitty aspirin if you are tired of the SS’s.
Tim
January 10th, 2006 at 9:58 pm
I am amazed by everyone’s description of their SS that so closely matches what I have been experiencing infrequently over the last 10 years of my 49. I first had a SS after recovering in my house from strenuous cycling in the Texas summer heat. And typically they would begin either after I was lying supine or after I had gone from lying on the floor to standing again. I do not ride as long and as hard as I did 10 years ago, but I still sometime have a SS episode after laying on my stomach on the floor or bed while reading or working with a notebook computer. My head is bent back somewhat to read, which I wonder has anything to do with it. Thanks for sharing your experiences.
January 10th, 2006 at 11:48 pm
Well I just returned home from a 420 mile land drive and had to cross the Straights of Georgia to attend “ MY SPECIALIST” All of this out of a pocket that has no means to replenish.
I attended to participate in a procedure called “ PULSED NEURO MODULATION “ This is a new technique supposed to deaden nerves of the Greater occipital at C 2 , 3 . This is supposed to relieve pain and neuralgia that comes from irritation in this area. It is closely associated with migraine.The specialist inserts electrodes of sorts on ether side of the nerve but between the facets of the vertebrae . This is done with the assistance of Fluoroscopy.( a type of X-ray) He then applies either RF or Microwaves to heat the nerve to 45C. As all this happened on Jan 5 , 06 it is too early to tell if it was beneficial. I seem to be fighting battles on several fronts. Pain from the fore mentioned has been the focus until the quick onset of SS about 5 or 6 months ago. So I find my self searching for some solace . I found a site with similar topics . They refer to it as Visual Snow. I have been told that SS may be the result of changing spinal fluid pressures. I am assured that there is nothing to fear. Keep The Faith !
January 12th, 2006 at 2:03 pm
I have the S/S attacks and it is caused by low blood sugar. I bought a blood meter and when I feel an attack coming on I check my sugar and it is often in the 60′s, sometimes in the 70′s.
I can get an attack within 10 minutes of eating something sweet because of insulin rebound to remove the sugar.
If I only eat a bowl of cereal for breaksfast I will get the S/S before 11:AM.
I have a doctors appointment in a week or so and I have recorded my experience and some of these here to take to the doctor.
I went on an internet hypoglycemic diet for a couple of weeks and had no problem but gained weight.
While I know the cause of the problem, I did a google search to see if anybody else with hypoglycemia had the S/S and was surprised when I found this thread.
Gene
January 26th, 2006 at 6:16 pm
Just a brief input – I’m a 25 year veteran of SS and get it at random, typically a year or more between events. I’m a physicist/chemist with PhD in spectroscopy.
One time I got an SS event within a few weeks of a prior one. Absolutely no physical effects (beyond not being able to see!). No migraine pain, no dizziness (it’s better to sit down).
Events start at the center of the visual field – the symptom being loss of vision there. I could be walking along on the street or working at the computer. The lightning-like stereotypical black and white zig-zags – maybe 2 dozen of them all oriented in various directioins – increase in power and size eventually filling the entire visual field in the space of 20 minutes or so. Then the vision returns to the usual good vision after a total of about 40 minutes.
I have visited an optometrist during an ss event and he saw nothing amiss.
Thanks for keeping this site operating – I just informed my chiropractor about this and she had never heard of it before.
Doc2006.
February 23rd, 2006 at 8:44 am
Hi Edith,
I went searching the Internet today for what I experienced as "flickering eyesight", and apart of actually finding a name for it, no relevant information, until I found this site. I can’t thank you enough for this. I am a 41 mother of 4, otherwise in very good health – except for the neck trauma that I experienced 10 years ago and that is causing me serious, stress related problems every now and then – and have had SS episodes for quite some time now. The weird thing though, is that I rarely ever have a headache, let alone migraine! If ever I do have a headache, it is always stress related, but I don’t recall it ever being accompanied by SS. Today it happened, it happens with very irregular intervals, and today it fell together with a very abrupt start of a serious cold. The flickering C-shape was situated in the right side of my right eye, and the episode lasted for about 45 minutes, during which I started coughing and sneezing (my nose actually started running!) I moved to this country only 2,5 years ago, and haven’t seen an ophtomologist other than to have a quick check up to get my Israeli driver’s license, and now I am just hoping I will find one who will understand what I an talking about, as doctors don’t like it when you tell them your diagnose before they have even examined you… I am wondering about that though, is it an ophtalmologist that I need to see, or a neurologist? I have heart arhythmia every now and then too, with the same irreguarity of occurring as the SS, and was never checked for that either. Maybe these two things are related?
February 25th, 2006 at 4:49 am
Hi
I’m Dave a 52 year old surveyor, living in the west of the UK.
I used to get SS, with migraine headaches, three or four times a month, with other neurological symptoms, numbness in the fingers, unsteady gait, slurred speach, photophobia and word blindness. I was tested for and diagnosed with Antiphospholipid (Hughes) Syndrome, APS, somtimes called "Sticky Blood". I was put on life long Warfarin (Coumadin) and this has reduced the attacks to perhaps one every nine months.
APS is a common but not often diagnosed disease, which, because of inappropriate clotting in both veins, arteries and organs, can cause many symptoms, including strokes and miscarridges and can mimic MS.
I would be interested to hear how many of you know that you are positive for APS, now, or, after reading this have a test and find that you are positive.
I hope that this is helpful.
best wishes.
Dave Simmonds
March 2nd, 2006 at 4:18 pm
For over 20 years I have been having scintillating scotoma. They are caused by an allergy I have to certain foods. I can eat famous amos cookies or chips ahoy choclate chip cookies and have one within 24 hours. Other foods include packaged cheese crackers (cannot remember which brand). Each time I have these crazy things I go back 24 to 36 hours and try to remember what I ate that was different. I will try the food one more time and if I have one I eliminate it from my menu. Please let me know if anyone else has related theirs to food. My chiropractor suggested I was allergic to a food protein but I don’t know which one.
March 3rd, 2006 at 9:34 am
Yesterday I wrote about having food allegies that cause my SS but I forgot to mention that 2 years ago I had a gallbladder scan where they injected a protein dye through an iv as part of the tests. I immediatedly had a SS. I told the technician what was happening. She got nervous and went and spoke to a doctor about it. He said that he had heard of it but it was rare for that to happen. I told the technician my food history and how it usually took about 24 hours for me to react. She said the reason it reacted so quickly during the test was because it went directly into may bloodstream. I should have investigated it further and maybe I could have found out exactly what was in the protein dye that caused the SS. Anyone else have a clue???
March 3rd, 2006 at 11:14 am
Hello Carol,
I believe that the SSs’ are caused by low blood sugar and your gallbladder scan required you to fast for some length of time.
My doctor doesn’t agree with me but my new wife is a 30 year nurse and she says it is low blood sugar. I bought a meter and when I start feeling funny and light sensitive I check my sugar and it us usually around 70. I got up at night feeling odd and found my sugar to be 57. If I eat something every 2-3 hours I am fine but then I have a weight problem.
I can bring on the SS just by not eating and I think that is proof enough. I have had this since I was a teenager and even then I thought I was about to die.
March 3rd, 2006 at 12:31 pm
I had brief episodes of SS over the course of a couple of weeks right after going off Zoloft, even after a gradual step-down from 25 mg.
March 4th, 2006 at 9:02 am
Everytime I get SS it last 15 to 25 minutes, even if I eat something. Eating brings up my sugar reading but there is still that delay before my vision is back to normal.
I never tried to see what would happen if I had SS and didn’t eat. I am afraid it would not be good.
One day I was feeling really weak and my eyes were very light senstive but I waited 5 more minutes for dinner to be served. About 3 minutes into eating, I went into SS and it still lasted 25 minutes but was not nearly as severe as in the past.
If I feel a little hungry and eat something sweet or drink a coke I feel much better but in about 20 minutes my sugar crashes. I think it is a rebound effect because my body puts out insulin to lower the sugar and the simple sugar is quickly gone but the insulin last longer.
March 14th, 2006 at 5:36 pm
I’ve been afflicted with migraines since the 8th grade. I’m 43 now. I used to suffer from the classic symptoms – the aura, then the headache (more like someone sticking a pin my eye), and nausea. I’d be out of it for a couple of days before I felt fully recovered. The pain was always on the opposite side of the ss, too, and the symptoms would switch from eye to eye, randomly. A few years ago I was diagnosed with acute anxiety, and soon after began getting the migraines (or just ss w/no headache) in "clusters" – lasting maybe two weeks, with ss-free intervals from a few days to a few months. The episodes are much, much less severe now than when I was in my teens and 20s – no nausea, no sensitivity to light, and if I get a headache at all, it’s mild and easily treated with Advil or any sort of ibuprofen product (sp.). I’ve always had lousy sinuses, too, which also seemed to clear up as I grew older, but I always associated my migraines and ss with my sinuses, since my eyes are often watery after an attack, like an allergy. In fact, I used to take allergy medicines for my migraines and they were pretty effective, at least in treating the headache. But since I turned 40 about three years ago, soon after my anxiety diagnosis, my ss clusters have increased in frequency while still decreasing in severity. I also used to fear I had a brain tumor (though my doctor assured me one does not live with an untreated tumor for 30 years), and have noticed the usual triggers – wine, diary products, hot dogs, bright lights, too much/little sleep, and most of all, stress. But it seems the triggers are only effective when I’m in a "migraine zone", which can last from a day to two weeks. Here’s what I do about it, though. About half the time, I can abort the attack when I feel it coming on (and I’m sure everyone here knows that feeling, which is hard to describe to those who haven’t experienced it). I do this by simply breathing in deeply and letting it out slowly – something I learned when combating every day anxiety attacks. I’m not sure if this works because I am flushing my brain out with fresh oxygen, or simply lowering my BP. I also recently started taking Verapamil for BP which is also supposed to treat migraines. So far, the ss clusters still come and go as they please, but the lights seem much dimmer, and I am able to abort the whole damn show via breathing more often than ever. If only I could find something that would act as a preventative cure, but till then…just try taking some deep breaths! It sure helps me. These things are the bane of my existance, I hate them with a passion and after all these years, they still freak me out, even though at worst it’s 20 minutes lost out of my day. Thanks for sharing and letting me do the same, this really takes a load off, like we’re in SS Anonymous or something.
March 15th, 2006 at 5:32 pm
For a while I thought the SS came on me fast but I have been watching out for it so yesterday when my eyes became very sensitive to the computer LCD screen, I checked my blood sugar and it was 64 so I ate some cereal and milk and everything was ok again. Last night I felt a tiny bit light senstive and my sugar checked out at 74 so once again I ate something and everything was ok. If I wait until there is a blank spot in my vision then even if I eat, I have to go through the whole 20 to 40 minutes of the cresent shaped zig zag neon light and if I open my eyes there is a big area where I see nothing.
Some months ago I got up during the night feeling tingly all over with light sensitivity and my sugar was 54 but no SS yet.
Armed with the precurser symtoms I felt confident I wouldn’t have to worry any more about a sudden SS attack. BUT. I would panic when real life situations created similar sensations. Like getting my eyes flashed by the sun reflection from a car window and temporary leaving a blind spot. Being in an outdoor building like a flea market where the people and sights I am looking at are back dropped by the bright lights from outdoors caused me to panic and start eating, which tends to make me gain weight. Sometimes I am concentrating to see if I am going into an SS attack and I hyperventilate and get light sensitive and see little doughnut shaped things and stars and light sensitivity but calming down clears that up. Keeping a candy bar or cheese crackers handy makes me feel more confident.
I just remembered that I started taking flownase about 6 years ago and that is when the SS started happening more often; but I am also getting much older, 65.
March 15th, 2006 at 6:27 pm
I am happy to have found this site, it’s comforting to be in company that shares this odd (and apparently not so rare) affliction – people who don’t get this really don’t "get" it.
I mentioned my inhale-exhale technique as being as least partly effective in heading off an attack. The one time it doesn’t work is when I get hit during my sleep – I can actually "see" the ss in my dream, and immediately start breathing, even while asleep, so when I wake up, I’m already fighting it off. Usually, if I get the sudden gray spot, or the little neon shard in the center of my vision, that’s enough warning to beat it. But once it gets to the "half moon" phase it’s normally too late, I gotta just wait it out, though lately I have been able to stop it before it spreads into my peripheral vision,creating that annoying "underwater" effect. Also, I find I can encourage an attack simply by thinking or talking about it! One time I drew a zig zag on a napkin to see if a pen worked, and two hours later – boom. So I better sign off now before my migraine-brain gets any "bright" ideas….
March 24th, 2006 at 3:46 pm
Someone named Ann asked about diamond-shaped SS in the previous thread.
I’m wondering if she’s reading this, and if she or anyone else ever found others with that particular shape?
Over 10 years ago, I had my first (and worst) case of SS, although until today I thought I was unique in this matter. The doctors at the time didn’t know much about it but called it an optical migraine.
It was a particularly stressful day at college, and while I was studying in the library, this dark spot appeared in the middle of my vision, equal in both eyes. I had to start looking to the side of what I was reading to see it clearly. Then it started growing, and took on a very definite and precise diamond shape. Within the diamond-shaped region, everything was basically scrambled. All the right colors seemed to be there, but all jumbled up, like I could make no logical coherent sense of it, and it was exactly the same in both eyes, so that made me realize it was my brain, not my eyes, having the problem.
As it got to about half the size of my vision I realized I needed to get to the clinic fast before I lost too much of my vision, so using my peripheral vision I managed to get myself across campus to the clinic, and signed in. While I was sitting there it enlarged to the point where I was completely blind, except that I could still see colors. Everything just made no sense.. it was like it was all seen through several layers of kaledoscopes and constantly changing.
By the time the nurse there could see me, a diamond-shaped spot of good vision had started opening up in the middle, and expanding at the same rate as the bad area had expanded, such that as I was describing what happened, it was mainly just scrambled in my peripheral vision.
The whole incident took probably about half an hour. I was a bit embarrased because nobody
seemed to understand what I was saying and I think they thought I had taken some hallucinogenic drugs
or something. (which I hadn’t, and never have)
Luckily the eye specialist they sent me too seemed to have more of a clue. (and of course, absolutely nothing was wrong with my eyes)
So anyway, since Ann wanted to know about diamond-shaped SS, yes, mine was about as perfect of a diamond shape as it could possibly have been.
Let me know if you find any other reports of this.
I’m curious how it’s even possible for the shape to be so precise, unless it happened in a part of my brain that processes visual edges or something.
Since that time, I’ve had a couple other minor episodes, all diamond-shaped, but the "good" and "bad" edge of the diamond were close together,
such that I never lost my vision, just had part of it impaired while the diamond moved out from the center to the periphery. I think all incidents occurred at a time when I was very stressed.
March 24th, 2006 at 9:50 pm
Hello again Edith and all other fellow SS people out there.
Getting a half-decent representation of what an SS looks like has become a real challenge for me. Although there have been some brilliant descriptions in this forum, unless you’ve actually had one, it’s still difficult to get non-SSer’s to imagine just what it is that we see.
So I’ve put together another animation. I think this one is closer to an SS than my last attempt. (At least how I see my SS’s)
SS ANIMATION ll
The file size is around 130kb. Feel free to copy it if you wish.
Susan.
March 25th, 2006 at 4:29 am
I just saw the animation that Susan made, and even though it’s not exactly what it looks like, it sure comes close. Congrats on your work, Susan! My almost 12-year old son was looking at the animation with me, and asked me what it was, and after I’d explained to him that I sometimes have vision like this, he told me that he also has this sometimes. Has anyone else heard of children this young experiencing SS? He is a calm child on the outside, but actually quite nervous, and he told me that he usually experiences the SS when he is really nervous.
Sandra
March 25th, 2006 at 5:28 am
Hello Frank,
Susan,
That is a good represention of SS. Only, mine is in the right eye and the arch goes from 11 o’clock to 6 O’clock. and the blind area is usually white but that could possibly be caused by the back ground where I was located.
Frank,
I noticed you were having a stressful day before the SS started. I have noticed 3 factors in my SS.
1) How much I eat
2) How much I exercise
3) How much stress I have
My SS seem to be related to blood sugar and I have to do a balancing act between how much fuel goes in my body and how much I burn. The two things that burn my fuel are exercise and stress. Too much fuel and I gain lost of weight and too little fuel and I run out of gas but my present weight seems to not be a factor, I need the same intake of food if I weigh 135 lb or 145 lb.
So I have to eat according to how much exercise or stress I will be up against and then I take some protein bars to cover myself for shortfalls.
My warning sign for coming SS is a feeling that I have just run out of gas and need to sit down, if I am keenly interested in what I am doing I will ignore the warning sign until it is too late. The only true test for me is when my blood sugar is in the low 70′s. Sometimes I only think I have a warning sign and just eat too much.
I have observed that while having the neon zigzag cresent shape stationary lightning bolt that I can make it brighter by waving my arms and legs and using up fuel (sugar) and also if I become frightened that it gets brighter so I just sit calm and don’t move except to put food and drink into my mouth. And Frank, walking to the clinic must have used a lot of fuel. I wonder about people who pass out from low blood sugar. I wonder if they have SS before passing out.
My nurse wife was the first to diagnose this as low blood sugar but my doctor disagrees even tho he has no clue of what is happening to me.
March 25th, 2006 at 12:45 pm
Excellent animation Susan!
But like Frank and Ann, mine are diamond shaped as well.
Dennis
March 30th, 2006 at 3:56 am
I was really pleased to find this site. I am a 50 year old man who doesn’t have any health issues other than being a worrier, have never smoked and drink little. Being an Accountant I am using a PC 37hrs a week and again for a couple of hours each night maintaining a website. I had my first episode last night and it frightened the life out of me. We had just eaten a light evening meal with a glass of red wine. Everyone else left the house and I went on the PC. After about 15 minutes my vision started to go in my right eye. I lost sight of the right hand side of the screen initially to a bright white semi-circle and to flashing black and white zig-zags and an effect of something like tunnel vision. I left the screen and tried looking out of the window but it made no difference. My wife returned soon and rang the doctor, they asked me to go in to the out-of-hours surgery at the hospital. By the time we arrived my vision had returned to normal. I had no headache when it happened. I got a bit hot and sweaty but this was like a panic attack because I feared I was having a stroke or something similar. Thank God my wife was the one who had driven my son to his girlfriends, I wouldn’t have liked this first episode when behind a wheel. The Doctor at the hospital examined both eyes and checked my BP. He said it was all OK and explained it was like a migraine but without the headache. I did have a dull headache later though and still this morning, but I’m back at work and hoping it doesn’t happen again in a hurry. Gratifying to read others experiences. Thank You.
March 30th, 2006 at 6:39 am
I had been fully convinced that my SS was caused only by low blood sugar but one day I ate very well and for lunch I had grits, bacon and eggs with cheese, One slice of bread and a juice drink. Ten minutes later I went into SS.
So I started reading Ediths reports again and noticed someone posted
a link to this site. Migraine Headache I had to make extensive use of my online dictionary.
There I learned about triggers for Aura’s or SS. Missing a meal is a trigger in about 40% of the cases while certain foods and drinks can also be triggers. Some trigger foods are dairy products expecially chesse, Chocolate, Alcohol drinks expecially red wine, Nitrates found in bacon, hotdogs etc. also glare, bright lights, loud noise can also be triggers.
Here is a little cut and paste from the site.
March 31st, 2006 at 4:03 pm
I had my first scary light display when I was young and gorgeous(about 19) and still have them at the ancient age of 78…not quite so gorgeous. After the first attack I learned not to panic (felt like it, but did not) and now they are merely a pain in the derriere. One again today and just checked the web to see if I were they only one in the world. Mine are silver and proceed from center, sometimes of each eye, and sometime from only one, the left eye gradually shifts to left and disappears and the right eye show to the right and disappears. About 30 mins total, but some insecure feeling for a while. Oh well, thank you Edith, lass. Obviously they don’t kill you…remember I said is was 78 and still giving it hell. Cate
April 6th, 2006 at 4:02 am
First of all, many thanks Edith for allowing us to use your site, which has proved invaluable and comforting. I won’t bother to describe my attacks because it’s been done brilliantly by so many others, but suffice to say that I only get the mildest headaches after an attack lasting 20 to 30 minutes, usually affecting the left side. A slight feeling of lightheadiness might follow, & strangely, vision seems almost clearer when all the flashes have vanished…it’s as if the experience has ‘washed’ away any imperfections to clear viewing. What it unfortunately doesn’t do is get rid of several ‘floaters which I’ve had for a few years now, but I guess that would be too much to ask!I used to be a once or twice a year sufferer, but it’s been a little more frequent over the last couple of years, with clusters following an attack & I was getting them on a monthly basis, but at present I’ve not had one for over 3 months, so it’s definately not consistent. I’m keeping a chart record of my attacks like Edith’s calendar. Talking of which, you seem to suffer so many attacks per month Edith, & so many days without a break… I feel sorry for you. Have you always suffered so many attacks or is this just a particularly bad attack?
I saw a specialist who said there was absolutely nothing to worry about & he said he himself had attacks every 3 to 4 months. I asked him that if hypothetically I had an attack every day, should I be worried, & his response was a definite NO, which is reassuring. He had by the way, given my eyes a thorough check-up & found everything ok.
So I guess we just have to ‘enjoy’ the fireworks display & not worry about it.
April 6th, 2006 at 4:21 am
I haven’t had any SS’s since I think Nov. 2004, during a show in Portland. I’m a little surprised it doesn’t happen more often when I play, the stage lights get obnoxiously bright at a lot of these clubs.
April 6th, 2006 at 4:58 am
Sorry Edith, I’ve obviously interpreted your calendar totally wrong. I thought the numbers in blue were SS days!!! You’re news that your last attack was in 2004 is great news for you & long may it continue. I hope I can extend my SS free days for as long as that. Somehow, I doubt it!
April 11th, 2006 at 4:11 pm
Hello everyone, I’m really glad I found this site too! I’m 18 years old and have been having this for around two years now, the frequency is variable – I’ve had them three days in a row and have gone eight months without one. I’ve had somewhere around 10 episodes though. Anyway, I just had my last one a few days ago, and I did a google search with some combination of the words "shimmering semisircle visual distortion" (which is the symptom I have), and voila, this site came up first, and I learned that this actually has a medical name – scintillating scotoma! Susan’s animation is virtually identical to what I experience. Anyway, it’s comforting to know that I’m not the only who gets these because they are very disconcerting. I have not found any common factor which leads to an episode, except possibly bright light or light/dark contrast. I’m going to start keeping a log though on these and what I’ve eaten, what I’m doing, etc. at the time. Let’s hope some more research is done into these and a cause is identified! And yes, thanks to Edith for having this site turn into a gathering place for people with SS.
- James
April 22nd, 2006 at 9:38 am
Hello,
This site is a great help to me. At first I thought I knew the answer to SS and was here to share the truth but I have since learned that SS is a destination with many roads leading there.
I thought low blood sugar was THE cause of SS so I went on a high protein high calorie diet and gained 8 pounds and my cholosteral went from 199 to 250 and still I was having SS. So I came back here to learn instead of presenting my belief.
I went back to carbohydrates, stopped eating chocolate after nearly every meal. I went from soy milk filled with cane syrup with my cereal to 2% milk and I cut out nitrate filled foods like bacon.
Previously I wasn’t too sure what was happening to me and I thought maybe I was having a stroke or at least about to passout and die from low blood sugar. Needless to say, I was forever filled with fear and panic which made it even more likly for me to have a SS attack. During a SS attack I sometimes became panicy that my skin tingled from head to toe and I knew it was the end but I just laid there and I didn’t passout or die so the tingly feeling went away and later the SS went away. The tingly feeling was the same as when I would blush as a youngster so I am sure that was a mentally induced reaction.
I consder SS to be occular migranes.
I feel like I have my life back.
April 22nd, 2006 at 12:48 pm
Thanks again to Edith for this site. If you ever take this site down someone should really preserve this information as it is probably the best record available anywhere about people like us who have SS. SS are definitely not caused by low blood suger, they are definitely migraines headaches that effect the visual cortex of the brain. I have never heard of any lasting or serious effects from migraines (though they can be annoying for sure and distrubing to those who are not used to them). I have had SS on occasion since I was around 20, now I’m 42. When I first started getting these in my early 20s they disturbed me mightly but now that I know alot about them I am much more relaxed about them. The last episode I had was about 4 months ago at night when I woke up with one around 2:00AM, but in fact I just rolled over and went back to sleep right in the middle of the SS episode and when I woke up the next morning it was obviously long gone. (They always usually last between 25 to 30 minutes) So they don’t have to rule your life.
SS most often comes in clusters as do most migraines. People tend to get a group of them in a short period and then go for a longer period without any at all. I think this may be due to the fact that an individual may be in a stressed out mental zone that is causing them and they tend to disappear when that person moves beyond or away from the mental state that makes the attacks more likely (see helpful treatments below).
Common triggers – seem to be Worry / Stress, Life changes or decisions that an individual is unsettled about. Happy go-lucky personality types don’t seem to get migraines like individuals who worry more deeply about issues. Overeating, wine.
Helpful treatments – seem to be meditation / relaxation training (changing our mental outlook actually does improve and help alleviate the incidence of migraine attacks), avoiding heavy meals and certain foods that you think can cause SS for you (Wine, Grapefruit juice, etc)
April 26th, 2006 at 1:37 pm
Hi Everyone,
Recently had a physical and told my doctor of symptoms you all described. I have had 4 SS episodes in 6 months where a jagged C shape expands and eventually disappears in 10 minutes. My doctor made SS diagnosis immediately because he said he was so fascinated with the term in school. I do have very slight headaches occassionally but not during SS episodes. My doctor is referring me to an optamologist for safety purposes to rule out anything else. Glad to have found this site to relieve my anxiety of imagining I have a brain tumor or some other horrific condition.
April 27th, 2006 at 12:32 am
Thank you for this site. Appoximately 3 years ago I took some correctol. After a few hours I felt and saw a burst of light on/in the left side of my head. Everything was suddenly in slow motion. I tried to pick up a bottle of soda to drink and the bottle felt like I was pulling it out of quicksand. I rested for awhile, but refused to sleep…thinking I was going to die. I rested, but the experience exhausted me. No more correctol for me. I thought I had a stroke. I don’t know.
A few days later, I had a cup of coffee and started experiencing the halos in my eyes. Here it is three years later, and I now know there is a name for this aura experience. Thank you. I will keep reading this site. Sometimes when I see a bright light it triggers or when I am in the sun or when I get stressed. Yes, it is a headache without pain. It drives me crazy when driving and this occurs or trying to work on the computer, interacting with people or sitting in a business meeting trying to concentrate.
May 12th, 2006 at 11:12 am
I am just so happy to have finally found the information that I have been searching for for as long as I can remember. For years I have had my own personal name for SS, I just called them "blurs". Everyone who knows me understood what I meant when I said I was experiencing the "blur". I can remember having them as far back as probably the fourth grade. They always start out exactly how they have been described on this site, first a small ball of colorful or white squiggly zig-zag lines growing into a larger ball that eventually opens to form a C-Shape and then moves to the side and dissapears out of site. I noticed a pattern with them that often occured when I would happen to experience the light from a sunny day, or when it was time for a new eye prescription (that’s when I would notice them more frequently). They would often be followed by a mild headache on one side of my head that seemed to intensify with certain activity, such as going up a flight of stairs or bending down. They had scared me for so long like everyone else who has experienced them. I thought something was gravely wrong with me or something, but after telling my eye doctor about this she explained to me that they were just a different kind migraine that effects the vision. She told me that in order to avoid the headache afterwards to take something for it at the first sign of the "blur", and it worked. I am just so thrilled to learn that I am not the only person anymore who experiences these and that there are others like me out there.
Angela
May 21st, 2006 at 4:36 pm
I just beat SS! I had a TV and a computer screen in my face and it was about 10 min after dinner when a squiggly line appeared in my vision. My heart raced and I hyperventilated and rushed off to the couch for the 45 minute ordeal. This time I calmed my breathing and heart beat and sat there and in a very few minutes the squiggly line went away. It never developed into a cresent shape. Afterwards my vision was expecially clear, just like after a full blown SS.
I was able to remain calm because of what I had learned here. Previous I had thought it was low blood sugar so I would rush off to eat and drink everything in sight before I passed out of low blood sugar. I think I might live.
June 13th, 2006 at 10:21 am
Thanks for the useful and reassuring site. I just got my (first?) SS today and googled around once my vision got better (10-15min) to see what that was all about. It was followed by a mild headache, kind of like a pressure(?) headache on the opposite (right) side of where the SS had mostly been. I am healthy and not on any medications nor was I in a stressful situation. But I wear contacts and sometimes my eyes can be a little light-sensitive light so I thought at first that maybe that was the problem.
I had never heard of the concept of a ocular migraine. All in all it was kind of interesting once I figured out it wasn’t a stroke :)
July 5th, 2006 at 6:16 pm
Great site…I thought I was going blind.
I had a SS yesterday. It was triggered by
1) being outside in the heat (Atlanta on July 4th)
2) standing up, after squatting
3) exhaling repeatedly (I was blowing on my little girl’s face to cool her down.)
It started as a blind spot, in the middle of my vision, in both eyes. I progressed to a crescent around the left of both eyes and progressively moved off to the left and dissapeared about 45-60 minutes later. During second half, the ‘blind spot’ appeared to look like a TV station’s ‘snow’.
I’ve had three previous episodes that were similar, but not ‘classic’. In the past, I’ve been outside in the heat and I’ve stood up quickly. My vision has dimmed, only in ONE eye. However, vision returned in about 2-3 minutes. So, this is different – but the triggers are the same, which I find interesting.
Before yesterday’s, I had an MRI and complete eye exam – they found nothing wrong. I’m going back next week with this new episode. I’d like a doctor to concur that the problem is not indicative of a more serious issue.
July 6th, 2006 at 1:23 am
Please share the results of your doctors findings with us Margaret.
Best wishes!
July 19th, 2006 at 1:16 am
Here’s a link concerning migrane / aura released today on WebMD:
http://www.webmd.com/content/article/125/115872.htm
July 20th, 2006 at 6:51 pm
I believe that I have two seperate types of vision loss. One is occular migraine and one is low blood sugar.
1) low blood sugar, usally between meals I will eat something sweet and my sugar goes up then crashes and my vision tunnels in with both eyes and it is quickly cured with a glass of orange juice.
2) Ocular migraine; usually sometime after eating chocolate. This is when I get the classic SS, with the shimmering glob inside the cresent shaped lightning bolt. Eating everything in the house doesn’t help one bit. I just wait it out.
Knowing the difference is important. I gained ten pounds trying to correct what I thought was a low blood sugar but had SS almost everyday. I cut out chocolate and the SS went away, and I haven’t had a single attack in over a month.
July 28th, 2006 at 2:00 pm
I have been having this problem since I was a teenager, and I am now 76 yrs. old. It used to occur rarely but became more frequent as I grew older.
Always the same C pattern but sometimes it moves to the left and sometimes to the right and last about 20 minutes.It never seems to be related to any thing in particular and I have never found a Dr who knew anything about it or even took me seriously when I described it. Apparently there is nothing to worry about, but it does get annoying.
July 28th, 2006 at 4:53 pm
SS
I get the C pattern to! In my research I have found sites on visual snow with video creations of the effect http://www.visualsnow.com. This I think every one should know about so pass it blog to blog. I think at least people can identify the type of effect they are experiencing. With the C effect that I get , it is like a short string of white running lights like the Marquis on an old cinema ad board. It happens fast laying down a string of 12 or so white spots along the outer edge of the field of vision. We are working on a similar video demonstraton to show this as well. Apparently this may be caused by changing CSF ( Cerebra Spinal Fluid). I have come to learn of several types of visuals and I have had at least 3 of them my self with migraine and without. Visual Snow I called Salt and Pepper effect. I also get a blue star flash which I take to be just a good omen , not threatening or frightning. There is also the fortress and the dark raindow aura effect that intrude from the edge of periferal vision. Good Luck and for the most part just sit back and enjoy the show. BB
July 29th, 2006 at 6:06 am
I went to the Dr. (A Nuero-opthamologist) again on Wed. He was happy that this episode was a ‘classic’ migraine description. It seems he suspected that the shorter episodes I had previously were Migranes too, but atypical. This clarified his diagnosis. I’m 10 wks pregnant now, and he also said that migranes can be worse, more frequent in the 1st and 2nd trimesters.
It was nice to have a Doctor confirm my assumptiosn. I’m glad I found your website though – this isn’t something everyone knows about!
August 5th, 2006 at 7:47 am
I am having one right now. for years i didnt know what it was, thanks to the internet have finally figureed out it is a mild migraine. no pain for me, jmust twenty minutes of slowly spreading aura, which eventually recedes beyond my field of vision. get them three or four times a year. once got one during my bar exam. irritating and difficult to read but i can power through it if i need to do something important.
August 8th, 2006 at 5:46 pm
I had my first episode when I was 20. I was at work and suddenly I had a blind spot in my right eye and a very intensely bright zig-zag shaped light. I felt swimmy and dizzy and was probably anxious which made it all seem worse. My doctor referred me to a retina specialist who literally turned my eyeball inside out to see if my retina was torn or detaching. He sent me home and said it was nothing. Some 20 years later I had another episode and it was all too familiar. I had the classic symptoms, blind spot, bright zig-zag lightening rod that doesn’t disappear when you close your eye, the arc that gradually moves to your outer vision field and that Oh! God! I’m having a stroke feeling. In the last two years I get them much more frequently, usually every day for 4 or 5 days then nothing for a few months then back to having them for several days in a row. Sometimes I get a dull headache, other times I just feel a little anxious after it subsides. My opthalmologist explained what it was and said it was harmless but I should stop what I’m doing, try to relax my body, and just wait for it to pass, which is usually 15-20 mins. I noticed that stress combined with too much caffeine or chocolate are definite triggers. I too have had it immediately after eating chinese food (attribute it to the MSG). I just hired a woman who also has this and, ironically, we both had an episode at the same time. I work in a huge corporation and most people in my department thought we were both nuts. Glad to see I don’t suffer alone and at least we have a name for this!
August 16th, 2006 at 6:49 am
False SS attack.
I was half way on my hour walk and a long way from home when I stopped to talk to some friends and I noticed a shimmering glob in my field of vision. I looked down and could see the grass and driveway but there was like a 3ft shimmering blob in the middle of my vision and it effected both eyes also inside the shimmering blob I could see people and sky. I was feeling very stressed out when someone asked me if I was ok and I looked up at them and I could see them fine but I was still aware of a shimmering blob. That is when I realized that their water sprinkler system had leaked enough water to make a 3 ft. flat mirror surface on the driveway and the wind made it shimmer.
What did I learn? A mirror-like puddle of water can reproduce the shimmering blob and a person could use that to demonstrate what we see without the cresent shaped lightning bolt. I also learned that I am too ready to panic.
I was having SS attacks nearly everyday but by stopping all chocolate I have been attack free for several months. Also, No low blood sugar loss of vision because I don’t eat sweets between meals.
This thread has helped me get my life back.
September 3rd, 2006 at 7:08 pm
Today I had a stress induced SS attack. I am a 65 year old man and was involved in a yelling argument with another man and when I came home my chest was heaving as I reached for more air, I decided that I would deal with the bank while I was good and mad so I was looking through the banking papers when the zig zig line came up. Unlike the Chocolate induced attack this zig zag line was skinny, white and a complete circle. Also when I sat down and calmed down the SS went away in about 10 minutes where as my SS attacks normally last 20 to 30 minutes.
My daughter works in the medical field and sees a correlation between chocolate and anger. She says both dialate the blood vessels and give some people migraine headaches but only gives me occular headaches.
September 9th, 2006 at 6:02 am
I wonder if these are hereditary! I’ve many episodes of SS but mostly in the last 3 years and contribute that to a very stressful job. I have a 13 yr. old daughter who suffers from headaches which my husband has always had. I believe these are cluster headaches but she need to have her seen by a doctor to be sure. My husband also suffered from severe migraines until he started blood pressure meds. A few days ago my daughter had a severe headache and mentioned that she couldn’t see well out of one eye with a black and white arc that started dead center and eventually moved to her peripheral vision. I knew exactly what it was and just cringed. Appears she has inherited the worst from both of us.
September 13th, 2006 at 5:45 pm
I am just now finding this website. What a relief to know I am not alone! Others look at me strange when I start to have one, and I tell them I can only see part of their face. I started having ss when I was 12 years old. (I am now 40.) I thought at the time I was going blind. But after going to my opthamoligist, he confirmed it was "only" an optical migraine and not to worry. Mine is usually triggered by a sharp bright light or strobe light. And sometimes I get a slight headache, but I can take a ibuprophen and all is well. Thanks to all for your comments. I really am glad to know I am in good company!
September 23rd, 2006 at 4:38 pm
Hi Edith
I found your site because i had my first ‘occular migraine’ today. I was terrified while it was happening, as you might expect. I thought I was dying or going blind or something.
After it passed I searched for the symptoms, and found your site so very comforting. Thank you.
I will attempt to paint it next time, if it happens again.
Much love,
Dan from London
September 24th, 2006 at 9:59 am
I had an SS last night, did a search on "shimmering blind spot" and was amazed to find that other people were describing exactly what I was experiencing, right down to the arc shape and the black and white shapes. Mine reminded me of an art deco pattern, all geometric shapes with straight lines.
I’ve never had a migraine. I think I had an SS before when I was about 13. I was sitting in class and suddenly realized I couldn’t really see anything in my left peripheral field. I think it was only slightly shimmering. It went away before the end of class and I felt fine.
It hasn’t happened again until now. I’m 31. I was up until 4:30 the night before last, it was nearly midnight last night and I’d taken lots of coffee and some ritalin (my prescription) to stay awake. Suddenly this SS kicked in. Lasted about 30 mins. I checked out a few sites that mentioned glaucoma, so I thought I might have caused an attack and went and sat in a dark room (one of the things you’re meant to do for acute glaucoma, as well as going to the emergency room). I guess it didn’t really help that I was staring at a bright laptop screen at the same time. Around the time I found this site, the SS just vanished.
I’ve noticed if I eat Chinese food I sometimes get a shimmery effect and kind of blindness over my whole visual field. It’s just hard to see things. I get a lesser effect if I don’t drink coffee for a day. I guess the first one is caused by MSG. I think it’s different to an SS.
I have lots of floaters. It’s like spiderwebs over my eyes. Actually it’s hard to see them unless I’m looking at something completely white, like a field of snow. I first noticed that in college, along with a strange kind of doubling when I look at bright lights. I can see a faint double image floating above lights at night. I went to a bunch of eye doctors when I first noticed it and they found nothing wrong.
It’s quite fascinating to try and look at things when you have an SS blind spot. You can see them, but you can’t really see them. It’s like your brain just can’t put them together into anything meaningful. It’s probably a small glimpse at what it would be like to have been blind from birth and suddenly able to see. "A blooming, buzzing confusion".
September 24th, 2006 at 3:08 pm
I have been getting scintillating scotomas for about 4 years. I have traced them to caffeine overdose from certain very strong coffees. when I switch to decaf they hardly occur. If I want to get one I can easily dodso with some starbucks and coca cola
October 1st, 2006 at 5:45 pm
Thank you for this site ancd information
I have described these brilliant, burning white lights that grow in size, eating away all other vision in both eyes when I become too hot too quickly and am not dissipating heat rapidly enough.
These episodes leave me weak and skaky, as I presume after having a major heat stoke many years ago that each of these is a "minor" heat stoke because I can feel the onset after having had several in the last 10 years
The comment about caffiene and buildup of gas in the chest is one of the constants for me, I believe, as well as the sudden physical activity without warming up properly when both heat and humidity are high and there is little to no breeze
I have attempted to describe what I see and the visual impairment that accompanies it for years, but no one has had the foggiest notion of what I was communicating to them
It has been ajarring exerience each time, as I associte it with a near death experience due to the fact that it has accompanied heat exhaustion each time and I have wondered if it was the Bright Light we go to at death
October 2nd, 2006 at 3:56 am
Dear Edith thanks for a great site but where are you,you havnt posted for a long time.I will tell my story soon and oh do some of the members keep in touch through e mail.Thanks for a great site. love Dave.
November 7th, 2006 at 2:15 pm
I had what I now think is my second scintillating scotoma – self diagnosed by concurring with all symptoms described by others in my left eye. I had just taken my contact lenses out after a stressful day in which I had an aromatherapy massage with eucalyptus oil, bergamot and geranium (may be a connection?). It started centrally in c shape as black and white triangular and square patterns, flashing, changing to colour and back again, there in black and white when I closed my eyes. The arc expanded over about 10 minutes and eventually, as my anxiety levels rose I decided to put my glasses on – and hey presto – all vision normal again. It was very worrying and I needed fresh air as I felt a little giddy.
I am grateful to read about similar symptoms from others – so thanks for the site!
Sarah
November 23rd, 2006 at 4:03 am
I don’t usually drink coffee, but my increase of caffeine seems to have lessened the occurances. Has anyone else noticed this?
November 30th, 2006 at 6:11 am
Thank you so much for this site, which has taken a load off my mind – I wish I had found it a couple of years ago!
My SSs are much the same as most I see here, but I decided to add my experiences to your site, as an extension of what is now a big database for any researchers out there (hint!)
I am male, 62 years old, professional engineer in early-retirement since mid-2004, 68kg, good diet, no medical history, moderate walking & cycling, happily married with 4 healthy kids. British, living in France since 1977.
My SSs started in 2003.
I had 1 in 2003
1 in 2004
5 in 2005
10 in 2006 – so far…
Because it was getting more frequent (& I had not found any internet stuff then) I finally went to my GP in September. He found high blood pressure so sent me to a cardio to get that sorted as a first step & the cardio has put me on a pill a day (Coversyl) commenting that it could well be related.
I have had 2 more SSs since then & don’t think there is any connection with BP.
I measured my BP during the latest SS & it was OK.
My SSs always follow the same path:
Start by loss of central vision (one character if I am reading) in both eyes.
(Everything is strictly identical for both eyes, so it is surely not an eye problem).
Blind spot moves off-centre & grows.
Becomes arc-shaped, concave towards the centre, with vision restored close behind the wave-front.
Starts to scintillate with gold/brown/blue zig-zags visible eyes open or closed.
Moves more or less radially towards edge of field of vision – can move in any direction, but once it starts to go one way, it continues in roughly that direction.
As it gets nearer to the edge of field of vision, the scintillation & zig-zag get bigger & more pronounced at 4-5Hz.
Even after the SS has moved out of view, I am ‘aware’ of it somehow out there for a few minutes.
The whole thing takes 30 min.
The first couple were at work (statistically probable) so might have been stress-related, but I don’t think so.
Subsequently (early retirement) they have often been at the PC or reading (statistically probable again) but also driving relaxed on a deserted motorway, painting a ceiling, in the shower, watching TV, in a restaurant and once I woke up half way through a ‘show’.
Always in non-stress & non exertion situations so far.
No particular time of day or relation to food or drink, including tea, coffee & wine.
No headache or related symptom.
Until I found the reassuring stuff on internet, I was getting worried because I imagined it could only be something like a brain tumour, especially as it was clearly getting more frequent (though not more severe).
At the moment I am hardly concerned at all, so long as it doesn’t deteriorate too much, as it does not prevent reading or even driving, but it would still be interesting to have an explanation & a cure available if needed.
I was comforted to find so many accounts, with none of them apparently leading to anything serious. Though I suppose if contributors all died the next day that wouldn’t show either!
November 30th, 2006 at 7:18 pm
This is my first post. I am 31 and have had SS’s for about 7 years now. I am much more relaxed now that I know what I have been experiencing is not just happening to me. I would explain it but I think anyone that has read these forums wouldn’t need an explaination. I get them about 1-2 times a month and can go away sometimes for 3 months or so but eventually come back. I see small little balls of light sometimes as well that zigzag around for about 5 seconds and disappear. I also feel a little fuzzy/dumb for a little while afterwards. I have found that nixing the caffine keeps them away longer. I have borderline HB as well and take a small dose of lisinopril due to a weak valve in the ticker. I am excited about finding these forums.
P.S. Had 3 in a row lastnight and thats what lead me to this forum.
December 6th, 2006 at 8:17 am
I’ve been experiencing SS for many years and have tried every which way to identify the triggers. Whilst there are many things which seem to trigger the problem (perfume, bright lights, sun flickering through trees, foods, tiredness, stress, I could go on), none of them are consistent.
However, I now believe that this condition is down to dehydration. Let me explain …
Last year I bought a book called ‘Your Body’s Many Cries for Water’ by Dr Fereydoon Batmangelidj. The book describes many common ailments and shows how each one can be attributed to dehydration. Let me just say that this book has changed my life and since I started drinking 2-3 litres of water per day I have had no further instances of SS (or asthma, or indigestion). Interestingly, many people who have posted on this site apparently suffer from high blood pressure and/or migraine headaches. Dr Batman puts both of these conditions down to dehydration, together with asthma, indigestion/heartburn, gout, angina and many other ailments.
Next time a bout of SS comes on, try drinking a pint of water and lie down quietly for 20 minutes or so. I would be really interested to hear if this helps others in the same way it helped me.
I would highly recommend the book mentioned above, which gives an overview of Dr Batman’s theory. I bought a follow-up book, ‘Water and Salt, Your Healers from Within’ which goes into a bit more detail (although I have to admit I haven’t found a direct reference to SS).
Would be very interested to hear how others get on.
Good luck everyone.
Philippa
December 11th, 2006 at 2:59 pm
In the mornings I walk around a loop and about 3 houses from my house I was looking at a car in the distance when the car just disappeared then reappeared and so on. I soon realized that as long as the car was in the sun I could see it but in the shade it was like it had vanished. I look all around me and everything was there. By the time I was in front of my house, the world was a patchwork of empty spaces. I grabbed a glass of orange juice, a cookie and laid down on the couch, instead of an arc with a simmering blob there was just vision in about 30% of my viewing field. I closed my eyes and for about 5 minutes there was a horizontal straight but zig zag line. The whole thing lasted about 15 minutes. Then I had a mild headache for the rest of the day.
I usually attribute my attacks to low blood sugar or chocolate induce migraine. Well l hadn’t had any chocolate and I had eaten a bowl of cereal before the walk. And this episode seemed to have some characteristics of both; low sugar and migraine.
For 3 times I have started taking prilosec but quit because I of vision episodes.
I looked on the internet and it says "low sugar" is one of the rare side effects of Prilosec. I am thinking that if it reduces the acid in my stomach and acid is what digests my food then it could be the cause of my present episodes. I am a small man, about 5′ 2 and 128 lb. This prilosec is one size fits all
December 28th, 2006 at 7:04 am
Short and sharp – I’ll refer this blog to my girl, who has all sorts of problems with this. I’ve had these migraines since my teens in the mid-80′s,same symptoms as many have described here, but I’ve found that a sugar hit and abnormal body heat level changes are the cause of mine. Typical example – eating chocolate or citrus on the day of playing sport, sweating and leaving wet clothes on, which cool down quickly – instant migraine, and when it happens I know who’s to blame! I wrap myself in a towel and a jumper straight after a game (despite living in sub-tropical Brisbane, pretty warm here), and don’t touch any sugar. I also have an unusual tactic which also seems to work – I ignore the migraine! Thinking positively and staying active seems to eliminate all the after effects once my vision is back, which means no day off the next day because of a throbbing head, no acute head pains, and no drowsiness. This works for me, might not for you, but if none of this has occurred to anyone here, try it!
January 11th, 2007 at 4:59 am
I had never had a migraine/bad headache/vision disturbance until a few months ago. Suddenly I got this ‘black hole’ in my vision which stayed for about 10 minutes – As soon as I could see I called my Dr. & went to the opthalmologist the same day. Nothing to worry about, just a migraine was the diagnosis. It happened a few more times over the space of 2 weeks and then started coming more frequently and lasting longer – up to 45 minutes. It was severely affecting my job as I work on a computer – hard to do when you can’t see! After a month my doc sent me to a neurologist. Migraine he said & sent me away again. I called him again & said I don’t feel good – high blood pressure 150/120, vein burst in my eye. Go see your regular Dr was the advice. My Dr sent me for an MRI scheduled for 6 days later. The night before I had the MRI I had a stroke. I had previously had a DVT but I have been told this has nothing to do with a stroke. Even though I have still not had a headache (other than the night I had the stroke) everyone insists on treating me for migraine. I keep getting told that my migraine caused the stroke and I have to take Topamax for the rest of my life. Is it normal to have these disturbances without headaches of any kind when you have a migraine? I always thought you had to have a bad headache or nausea? I am really confused about what is happening but I don’t know enough about migraine to argue.
January 16th, 2007 at 12:32 am
Hi
I am 54 and have many psts here now. I have scintellations everry day now but I also have chronic neuralgia in my neck face head and arms due to a blunt trauma to the neck,I have severe pain every day and no its not Migraine….Birch1000@hotmail.com….Talk to me !!! Lloyd Thanks Edith !
January 16th, 2007 at 9:23 am
Chrissie,
I am totally convinced that SS for me is caused by a protein allergy. I wrote several months ago about how everytime I eat certain foods such as famous amos choclate chip cookies, packaged peanut butter crackers and certain other foods that I have one within 24 hours. I also had a test run which caused me to have one immediately. The doctor said it was rare but that I was allergic to something in the protein they gave me through the I.V. Because it was injectedly directly into my blood stream I reacted immediately instead of 24 hours later. Four days ago I bought a package of hard sharp white cheddar cheese. The following day I had an SS. I waited two days before I tried it again. The SS came yesterday within 24 hours of me eating the sharp white cheddar. Crazy or not I can make myself have one within 24 hours of eating certain foods. Keep a food diary and see if there is a common food involved.
January 17th, 2007 at 5:28 am
My first SS attacked occured when I was 12 and at school.. suddenly I couldn’t see certain letters on the black board. I’ve had them on and off ever since.. sometimes for huge periods of time – five years or in rapid fire.. some twice at a time.. some three times over a period of three days.
Sometimes I get pain….sometimes I feel fuzzy in the head.. a little befuddled in my thoughts.. sometimes I have pins and needles mostly around my mouth and nose.. most often I just feel ill and wiped out with a really heavy head. I’ve had MRI’s and there’s nothing there (well at least nothing bad!)it’s simply migrains.. annoying and unnerving as all hell.. but eventually you do learn to live with them.
The cause is often a combination of stress and the fact that when i’m stressed I crave sugar.. jelly babies are my worst nightmare.
Thanks for the site.
January 17th, 2007 at 3:33 pm
I have SS every d ay but I also have Occipital and Trigeminal neuralgia. I also have cervicogenic headaches ( from the neck) that began after 4 blows to the head with a 1" solid steel bar 2 feet long. I had been 3 years free of Migraine after 14 years with so now 17 years and Migrains about once a week but cervicogenic head and neck daily… The ss does not tie in in any way with any thing. I will say that this C pattern of Marquis lighting just began a year ago and I first noticed it when eliminating wastes with minimum pressure. Now they happen any time 3 times per day at least…
January 17th, 2007 at 3:34 pm
Why do we keep getting logged into 2004…
January 17th, 2007 at 11:44 pm
You know.. I keep thinking that all of our "triggers" seems to be different (yet the same).. so there has to be one thing that all of us have in common?
Other than the fact we have pretty looking migrains….
January 20th, 2007 at 8:04 pm
Hello all!
My first ss was back in 03. Unfortunately for me mine was the result of a bleeding mass (cavernous angioma) in the left occipital lobe. Dr. Ghassan Bejjani UPMC-Pgh removed this mass for me but since the surgery I had the constant blind smudge in my vision.
It will always be there from what I understand, the smudge of blindness is interestingly enough the same place where the real ss attacks start. This is why we all knew for a fact that the source of problems was in the brain and not eye. I am unsure of permanent damage but I have the ss attacks up to 3 times a month.
Please get yourself a CT scan to check for bleeding if you have never had one. I was 23 when mine ruptured and the angiomas are hereditary.
The ss with seizure is NEVER A GOOD THING.
Thank God for my neurosurgeon, I haven’t had a seizure for 3 years but still have these horrible ss attacks with nausea and vertigo. Attack is on the right visual side due to left side occipital lobe brain damage and/or scar tissue.
Thank you for your time and God Bless.
January 21st, 2007 at 1:49 am
I am 61, female, and a registered nurse. I have
had ss since I was 40. Mostly it is brought on
by stress, like delivering a baby, but sometimes
it just happened when I am calmly sitting and
watching TV. It starts out with a wiggly spot,
then goes to red, black, and blue triangles,
linked in a half circle, get larger then farther
out until I can finally see again. I always have
a headache or migraine with it and for a about
an hour after it is gone. A wet cold cloth helps,
also a dark room, but sometimes it is not possible
to do this and I have to struggle thru it. I can’t
write nurses notes, and I definitely can’t see
monitor with baby’s heartbeat or contractions of
mother. I have to call for help and take a break.
I usually get the feeling that people think I am
faking it. They look at me funny and say "I’ve
never heard of such a thing." I will retire this
June when I turn 62, so I will not care what they
think.
January 24th, 2007 at 8:05 am
Thought I would put in my two cents worth (for what it is worth). I have only had two episodes (that were impressive enough to notice)of scintillating scotoma. Both involved being around heated air..don’t know if that has anything to do with this or not, but the ophthalmologist says no.
About 8 years ago, I was taking muffins out of the oven and less than 1 minute later had my first episode. It was if there was a ceiling fan above my left eye that had lights on it and it was going round and round. Very scary. It was on a Saturday and I called my ophthalmology clinic (got the doctor on call) and he simply chuckled and told me not to worry. He knew immediately what this was and he said that the heat from the oven was not the cause.
The only other one I have had occurred today. It occurred while sitting at the computer and some letters seemed to be missing from the screen. I have a small electric heater nearby (again the heated air). It too occurred in the same left eye. It was different this time in that it was more of a peripheral occurrence and gradually exited via the left side of the face. Because it was different and there had been so many years since the last one, I again panicked slightly. Then I got on the computer and found this site. My left eye is my "good eye" too. I have very poor vision in the right eye and because I earn my living as a medical transcriptionist, I was more than a little concerned about this.
Interestingly, in my particular case, I do have a "freckle" or nevus behind my left eye that the doctors are keeping a close check on. They photograph it every year to make sure it is not growing. This nevus was only found about 5 years ago, so it was previously difficult to spot and was found on a routine check up using a very strong lens. Do not know if this is related…but perhaps this will help someone. Perhaps there is a relationship with nevus behind the eye with someone else?
January 27th, 2007 at 3:45 pm
Just to add my grateful thanks for your website. As others have already commented, it is such a relief to find out what is going on, and that other people have this problem.
Like others, I checked with my eye doctor, who didn’t seem to know anything about it, but said my eyes were fine.
The comments on this site, and your links to other informative sites, have been so helpful.
By the way, re possible hormonal causes, I didn’t get ocular migraines till in my early fifties: I had had the menopause for a few years, but had just come off HRT, so definitely could be a hormone link in my case.
Thanks again.
January 30th, 2007 at 7:54 pm
Thanks for the page, and the tunes, Edith. Good stuff.
I won’t bore you with a long history. I wouldn’t have posted at all if I hadn’t noticed two things while cruising these pages – the mention of magnesium and a photo of a full moon. My migraines started in my late twenties, ONCE A MONTH. I began menopause early, at around thirty-six, about the time I started having SS as my headache warning. Now I’m post-menopausal and I have headaches no more, but I still have SS, at the full moon, just when I would have started menstruating. Do I sound crazier than anyone else here?
Anyway, I’m not sure when or where I stumbled across this information, but I began taking a calcium/magnesium supplement during menopause, and not only did it remedy my female complaints, it knocked down the occurance and duration of both the headaches and the SS, when I remembered to take it.
The SS doesn’t bother me much now, since it no longer signals the start of a migraine. I do feel sluggish afterward. But mostly I feel stupid, because I haven’t been taking my calcium.
Mine is obviously a hormonal trigger, and if anyone else suspects that theirs might be(or not), go buy a bottle of calcium citrate with magnesium, and try it. It’s inexpensive and it can’t hurt!
February 2nd, 2007 at 2:55 am
I’m having a double whammy one again. Sorry if this makes no sense.. I can barely see what I’m writing.
I get really frightened when they do this.. my thoughts are all jumbled up.. though the doctor said that was due to panic more than anything else..
Do any of you have suggestions on what’s the best way to handle these attacks when they happen.. I’ve practised meditation for years .. but it all seems to go out the window when i have an attack like this.. I’ve been stressed out this week with some other health issues but.. this isn’t any way to live.. I can’t seem to be okay with having them… they freak me out so much.
meh..
February 3rd, 2007 at 6:35 am
Trying to figure out how to use this site first. Have a color picture of scintillating scotoma. These occur in my eyes, I found out, from http://WWW.MSGMYTH.COM , after ingesting pesticides used to grow vegetables. Now this could be only one side effect on one person. If this post is used I will figure out how to send this picture of what it looks like.
February 12th, 2007 at 5:53 pm
Iv’e had scintillating scotomas since the early 1960s. Sometimes I go months without them, sometimes have two per week. Luckily I have no migraine headaches. They last 20-22 minutes. Many had an onset immediately after something disturbing happens, many for no apparent reason. Stopped worrying about them years ago (have had them for over 40 years now). I was initially told that they were due to a restriction (or dilation?) of a capillary in the eye.
February 12th, 2007 at 10:03 pm
Scintillating scotomas used to freak me out when I was younger. I’m 43 now, had them since I was 20, a few times a year, last 20-25 minutes every time. The real reason people hate them so much I think is not the attack itself I think but the fact that alot of people panic about them because they are not familiar enough with them.
(not that there is any reason to like them). But from lots of experience I would suggest emersing oneself in an activity that takes your mind off it for the half hour or so that it lasts. Like washing the dishes or racking the yard. Just focus on the task and before you know it, it’s over and gone. And like half the yard is ranked to boot. (-:
February 13th, 2007 at 2:23 am
As I posted earlier, blood thinners seem to eliminate the SS. (For myself anyway). But there seems to be an similar result I’ve found from taking Enzyte (for a different problem).
Not a joke.
February 13th, 2007 at 10:50 am
Dennis says:
As I posted earlier, blood thinners seem to eliminate the SS. (For
myself
anyway). But there seems to be an similar result I’ve found from taking
Enzyte (for a different problem).
Not a joke.
/////////////////////
There may be something to this. Very often when I had SS, I had been outside working or walking and sweating.
I assumed I was low on blood sugar and orange juice would help, but was it the sugar in the orange juice or the water in the orange juice that helped. Maybe it was just the time that helped.
When I was having SS I was also sometimes having low blood sugar. I have determined that low blood sugar is different and vision leaves both eyes in growing splotches while SS is usually in my right eye and confined to one shimmering blob with a cresent shaped lighting bolt over the top and side of the blob.
I believe water is a kind of blood thinner. Often at night it seems my heart can barely pump blood and death is near but I get up and drink a big glass of water and my heart settles down. It is hard to pump thick mud is what I think.
February 14th, 2007 at 1:22 am
Hi, all…….well, can’t say I’m GLAD to see so many other sufferers, but it’s nevertheless reassuring to know that we’re out there in numbers.
I had my first exp in my early 20′s, pretty common experience in that I started out with a very hot, white, spot in my central vision which looked a bit like getting your retina’s zapped by a camera flash, but it quickly expanded, and began to morph into the zig zag wavy lines and geometric shapes common to many here, very colorful and shimmering……and also a bit scary in that it had never happened before. Visit to the family doc diagnosed as "atypical migraine" in that in that episode……as well as future ones….didn’t have a headache or other typical Migraine symptoms associated with it, aside from a mild, dull headache and the feeling that my eyeballs were under pressure and ached a bit also…….perhaps from eyestrain. At any rate, the hallucinations pretty well eliminated my central field of vision, leaving me with only a bit of peripheral sight for about half an hour or so.
It was six years before the next one, when I had a series of these episodes over a three week period……and then another eight years before the next series. In all cases, I can very much associate them with periods of high stress and depression during those times.
More recently, Ive been having clusters of these again, only with more severe symptoms associated. I was taken to the local ER with the first, as I completely lost my powers of speech for about twenty minutes, followed by the hallucinations. MRI and other diagnostic follow up tests showed no clear evidence of a TIA or any kind of small stroke, but diagnosis was TIA nevertheless, even though I began to get the visuals in the ER while being examined. (I hadn’t realized until quite recently that losing speech, numbness on one side, etc, were also symptoms of this). My neurologist I was referred to was a bit puzzled by the TIA in that I had no obvious risk factors such as high blood pressure, heart disease or valve problems, clear carotids, etc, but nevertheless put me on aspirin therapy just in case.
In the past two months, I’ve had more episodes in which "occular migraines" occurred along with a temporary inability to articulate speech, which cleared up within the usual 20-30 minutes which seem to be the usual duration of the migraines. (And, as usual, no real headache as such associated).
What I’m beginning to wonder is if my TIA diagnosis wasn’t actually a MIS-diagnosis and that the speech problems and another episode where my left arm was rendered numb and tingling for an hour or two arent being caused by migraine, rather than lodged blood clots…….again, something I shouldnt have a risk for given cholesterol levels, heart and arterial health, and lack of other obvious risk factors for stroke?
Has anybody else had similar symptoms……..i.e., loss of the ability to speak (while not losing the actual capacity to UNDERSTAND language, just the temporary lack of motor function to pull it off), or one-sided numbness/weakness of a limb? I hate to indulge in self-diagnosis on something potentially serious like a series of TIA’s or second guess the doc’s too much here, but given that ALL have been associated with a migraine event…..I really have to wonder.
You can Email me at Chessgms2@aol.com if any of this sounds familiar.
And, great website, as well!
Good luck to all the others out there also…..
Regards to All,
Scott
February 16th, 2007 at 4:32 pm
I’m having one again. I don’t know why,after all this time, they still frighten the living shit out of me.
Does someone have any techniques for dealing with them when they occur that help you not to get so scared??
Logicd can’t seem to get a foot hold at the moment.. and I hate that I’m being so stupid at something that so many other people get
February 16th, 2007 at 6:52 pm
Lea, its prefectly normal to be frightened by these. Not sure what your symptoms are—- but hey, things like, oh, I dunno….going BLIND???!!???? …. do tend to raise one’s anxiety levels.
To put it mildly ;)
Yes, logically, you’ve had these before, you know nothing ever REALLY happened, and that nothing is REALLY going to happen again this time either. But logic doesn’t always work.
Distraction is one thing I can think of which might help. Laughter is good; turn on the Comedy Channel and try to distract yourself with a good chuckle. Try singing. (If youre a horrible singer and cant carry a tune in a bucket, the Comedy Factor once again comes into play). I used to grab one of my guitars and play some Blues standards…..half those old guys were named "Blind-Something-Or-Another" anyway, so I figured I didn’t need my eyesight for that if they didn’t either.
The fear reaction in the human brain and/or psyche is one which is quite good at feeding on itself….once you let it get a foothold, it can easily take complete control and spin things way out of all perspective. Again, these things tend to resist normal Logic as such, but when you feel one comning on, DO remember it’s NOT going to kill you……it’s only going to last for a very short period of time, maybe half an hour, and it will be over.
Again, distraction or trying to engage yourself in something to try to take your mind off it as much as possible as soon as you feel it starting is important. Dont let that fear gain a foothold if you can avoid it. Don’t be ashamed or embarassed to talk to family, friends, the dog, whoever, while it’s happening to help calm yourself and again, distract yourself from the fear.
Everybody gets afraid. EVERYBODY. Couraage is looking it in the eye and not giving into it…and perhaps telling it a bad joke, and laughing in it’s face. Or at least….it’s always worked well for me by doing that.
And, yeah…..after dozens of these over the years…..sure. I’ll cop to it. I get a little scared when they happen too ;)
You’ll be OK
Scott
February 16th, 2007 at 8:52 pm
Great advice Scott!
In fact, that same advice helped me get past years of crippling anxiety/panic attacks. Nowdays, if I experience any kind of anxiety I simply ‘talk’ to my nerves and tell them to get a grip, I’M the one in charge of my body, so SETTLE DOWN!
Now I know it sounds a little ‘la-la land’ but it works for me. No more pills or potions, just enjoyment of life.
As for the SS’s; I see them as a fantastic light show. Maybe I’m (and all of you here) are special because of them. :o) We get to see something that most will never experience. You gotta admit, they are a spectacular sight to watch.
I’ve given up wondering why I get them, or what may or may not set them off. They can be annoying at times when you are trying to get a report typed out or reading ‘minutes’ of meetings to a packed room of club members.
But hey, it’s just a visual migraine, and pretty to boot! Sure beats suffering a full-blown, debilitaing migraine that many, many others have to contend with throughout their lives.
I wise person (whom I thought at the time to be terribly insensitive) once said to me, "For goodness sake girl, take your hand off your pulse and start living!"
February 26th, 2007 at 12:11 pm
I have been having ss for about 10 years and until today,,i was sure i was in the process of a stroke,,I too, felt an anxiety attack coming with ss..never knew what these zigzag lines were called..and i usually get a very light headache above my eyes almost like a sinus headache..the zigzag usually last 20 minutes,,starts out as a tiny blind spot,,then spreads out shimmering horseshoe shape,,usually more noticeable in left eye. I am 41 years old and these started right after I had an epidural with my second child,,I wonder if that started the ss. anyone know?
February 27th, 2007 at 7:24 pm
Hi Edith!
Thank you for continuing these comments – I have read them all! I’m a 39 yo female. My first episode of SS this morning at work, concentrating on small type on the screen. The type in the bottom right corner of the screen started to distort and wouldn’t get back to normal. I ran to the bathroom to see if there was something in my eye. Nope. Closed one eye, then the other. Both eyes closed and it was still there – now taking form. Definitely not physical – definitely neurological. The backwards C with that kalidascope affect, moving from the bottom right to the top right of my peripheral vision. Lasted for 30 minutes….a personal fractal in my eye that only I could see.
I was pretty freaked out until I came across your blog and these incredible comments. Not only has it connected the dots (floaters) but I can’t believe how many people are sharing this symptom (but of what??).
I got my first ‘visual disturbance’ over 15 years ago – had to leave the store as all the colors of all the merchandise were jumping out at me making me dizzy. Over the next several years I experienced this every 1-2 years. Walking down the streets of Manhattan would bring on dizziness and an intolerance for movement and light. I would feel as if I was about to have a seizure (disassociating with reality), although mercifully, that never happened. I put it down to low iron levels and ate more red meat.
Seven years ago, while walking down the street, I suddenly experienced a flash in my right eye – then grit that would not go away….a bad case of floaters. They got worse over time, to the point where I would get depressed because they were always there and I saw them more than anything. Concurrently, I was suffering from acute gallbladder attacks, ending up in an emergency gallbladder removal 6 years ago. Later, I started taking milk thistle – an herb for liver support. Within a year my floaters were practically gone. I put this down to the liver-eye connection in chinese medicine -liver problems manifest themselves in the eye, and my liver had been enormously stressed from my sick (and later, removed) gallbladder.
The worst came 5 years ago, waiting for a subway train and suddenly feeling the world reeling around me. Had to literally crawl home. The doctor said ‘vertigo’ and gave me a prescription for Meclizine – an anti-motion-sickness drug. Boy – did I ever depend on that drug! Over time, I developed terrible motion-sickness, eventually causing me to quit my job and find work where I did not have to travel on a train. I saw eye and ear specialists. Nothing wrong with eyes or ears. Sent for an MRI but I didn’t go, as I really did fear the cause was a brain tumour. I went for accupuncture and hypnotherapy, cut out all additives, preservatives, grains and sugars from my diet, eating pretty much organic and home-prepared only. Still got dizzy and ill when traveling. Meclizine is available over the counter, and without it I would be incapable of getting to work some days. Still light and color sensitive. I wear nothing with patterns, my linens and furniture have no patterns – everything must be solid, neutral or pastel for my sensitive eyes. Strobe lights and flashes induce that ‘disconnected’ feeling.
Interestingly – I am left-handed and artistic….as previously mentioned by other commenters. Also – female, close to 40, and had a trigger-intense evening yesterday – sipped on red wine while nibbling on ripe camembert cheese, and later dark chocolate. Guilty your Honor!!
Having read these informative posts, I am feeling so much better, now I have a label for my burden. Back on the milk thistle and off to the accupuncture clinic for migraine treatment.
Never had a headache – the questions all those doctors asked…’do you suffer from migraines?’ Of course not – I did not know any better.
Thnks Edith and all who have posted, for the wonderfully informative eye-opening information.
March 3rd, 2007 at 6:27 pm
Thank you, Edith for the information on your site….It has been a scarey couple of days, not knowing what the c/shaped or horseshoe/shaped diamond/sparkly design I was seeing in my left outside left eye were??? I am 55 a female and was at work sweating up a storm…I went outside to cool off, came back in and started working again when the episode occurred. It scared me to death, heart palpatations and all. It seemed to get worse and spread to my other eye. I work at a nursing home and there were RN’s readily available. One said check your blood pressure, one said possible stroke onset, another said something else and no one mentioned SS. I was living in hell, till now….I thought I had a sinus headache after the SS, and ringing in my ears also, but after getting on the computer, I read that SS is misdiagnosed as a sinus headache quite often.(Good to know)I have had a total of 3 which actually started while I was playing a video game several months ago, but I laid that off to staring at the tv screen for so long and looking away…obviously I was wrong, and I also had a short lived one about 2 minutes at work a week ago that I blamed on the flourescent lights, which could have triggered it. Thursday’s attack, 2 days ago was scarey though, lasting longer and accompanied by the headache later, 30 minutes or so. Hope we continue to find answers to calm some fears….and again thank you Edith!!!!
March 4th, 2007 at 8:10 pm
Edith:
Isn’t the internet wonderful? I had my first (that I recall) scintillating scotoma yesterday. Your website was the first I came across in my search for information.
I’m 45 years old with no history of migraine or any other disease other than tendinitis, lower back problems and hay-fever.
I’ve been taking ibuprofen or naproxen for occasional pain, so it was interesting to learn that naproxen can be used to treat migraine.
Yesterday, I had just eaten some Mexican food when I had the visual symptom of a sparkling, colorful C-shape in the left part of my left eye (right eye, too?). On my way to the emergency room, the C-shape grew in circumference over a ten – to twenty-minute period. It disappeared as I waited for the doctor. I had a CT scan, EKG, blood tests, etc. Tomorrow I will see an eye doctor.
Anyway, thanks for the website. You’ve probably seen this, but here is the best information I’ve found. Click here – http://ccjm.org/PDFFILES/Kunkel6_05.pdf
Do you have any comments on whether and how often I can expect this to recur? Is there any chance that it won’t happen again?
Thanks,
Tom
March 7th, 2007 at 12:10 am
age 64
I’m so glad I found this site. I’ve been wondering what was causing this, not scarry enough to go to Dr. So I checked the Internet and found this site right away (thanks Edith) and don’t need to look any further as I’m convinced it’s my diet that brings it on.
These episodes occur about 2-3 times per year for last 4 ? years.
Last episode was yesterday The vision problem starts out with a blockage of vision like I had been starring at a bright light then trying to read something. Then it turns into squiggly, zigzaggy clear shinny shimmering lines obstructing my vision equally in both eyes, sometimes in a semi circle, sometimes angular or circular but always right in my line of sight so I have to quit reading (i’m a web designer so read all day long at my computer). They move off in 5-10 minutes. No repeats. (I have had episodes years ago when most of my vision disappeared into blackness except for a small light spot in the middle of my vision)
No headache but slight dizzy feeling (I rarely get headaches and have never had a migraine). I do have low blood sugar but it seems to have lessened over the years.
CAUSES:
Caffeine: Yes–I never drink coffee but have been eating chocolate for several weeks (my birthday is day after valentines day which = box of chocolates and previous to that Christmas fudge which I make myself for family so I eat chocolate for a few weeks then also. I manage to break that habit just in time for Valentines day and get hooked on it again. I’ve always been sensitive to caffeine so always eat chocolate by early afternoon or I will be so wired I can’t sleep. I haven’t been keeping a record but I’ll bet I had one of these after Christmas too and I wouldn’t be surprised to find out this time of year is when these SS episodes always occur.
Cheese-Yes: I don’t eat cheese but was eating lemon cheese cake for several days before this happened along with the chocolate once per day.
Stress: Yes: My website is doing so well I’m booked up for several months and turn down 10 jobs per day–I’ve been working 12 hours per day trying to get caught up and this leads to the next cause:
Lack of Sleep: not sleeping as much as usual (about 6 hours –probably due to chocolate).
MSG: very little if any. I try to stick to natural foods. Ha! Natural foods like chocolate
Aspartame: I avoid it–drink only water.
I decided to get off chocolate and sweets yesterday and now I have a slight headache–probably caffeine withdrawls.
March 8th, 2007 at 12:26 pm
I think I have and am currently experiencing this. About a year or so ago was the first time I experienced it. I was driving to work on a summer day and had a sort of c shaped "flashy" in my right eye. I could barely see out of it for a few hours. This morning I was in the shower and was washing my face therefore had my eyes closed and suddenly there was a bright yellow circle in my vision and was still there when I opened my eyes. The circle is no longer there but I still feel kind of groggy. Just wondering if you guys think this is the same thing. I have been on zoloft and have been trying to take it less often for the last week because I no longer have insurance to get it refilled so Ive been trying to make it last by skipping days and only taking half of the pill a day. So is this related?
March 8th, 2007 at 1:52 pm
Brandi, migraine and the brain neurotransmitter chemical Serotonin have been linked by many medical researchers…..and drugs like Zoloft regulate Serotonin levels in your brain. So your self-imposed Zoloft withdrawl could be a factor, possibly.
It sounds as if you have some insurance issues which might make either seeing your regular doctor who had prescribed your zoloft, or seeing a Migraine Specialist difficult, but you might go cautiously in self-withdrawl on the zoloft regardless of any migraine issues that could be involved here. Many people have some withdrawl symptoms associated with either a sudden stoppage or other dose lowering of anti-depressant medications…..Paxil is particularly notorious in that regard……even though the drug manufacturers and many doctors originally claimed or believed there was no withdrawl syndrome associated with that class of drugs at one time. (They now admit and/or recognize that withdrawl syndromes and symptoms CAN occur, particularly if those drugs are stopped cold-turkey).
But please speak with your prescribing Doctor about the Zoloft and your recently smaller doseages because of the insurance related problems you’re experiencing. Your Doctor may be able to help you in either getting your proper doseage through various means if you really need to be taking it—some drug companies have assistance programs to help, and occasionally Doctors will be able to also help you by giving you physician samples for free at least for a period of time…..but in any case, let your Doctor know what you’re doing in reducing your doseage on the Zoloft to make sure that you aren’t reducing the amount too quickly or otherwise inappropriately. There may, or may not, be a connection with your Zoloft and the migraine-like visual problems you’ve recently had ……but at the very least, you do need to speak with your Doctor about your recent change in doseage. You also need to be sure that these visual problems are migraine-associated as well. It sounds like they probably are, and are probably harmless if so…..aside from maybe being a little frightening when they happen, and inconvenient if you cant drive or do other activities for a bit during an episode…..but you DO need to be evaluated by a physician both as to the visual disturbances AND the zoloft issue in general.
Again, if you have a definite need to be taking a prescribed daily dose of Zoloft for something, your Doctor may be able to help you get that proper dose in all sorts of different ways. But you first need to make sure your Doctor KNOWS what’s going on with these things, before they can either help or advise you on how best to manage all this. It’s important you contact them about this, and please do so. Don’t let embarassment prevent you from getting the health care you need and deserve, and you SURE aren’t the first or the only person these days who has similar problems in affording good health care because of Insurance issues. (In fact, you’re in quite good company—it’s estimated that something like 45% of all Americans are without coverage at SOME time or another, so you certainly arent the only one, and there is no shame involved in it).
But before you do anything, or start second guessing why you might be having these symptoms, or even listening to non-Doctor’s on websites for medicial tips like you’re doing right now, lol…..CALL your Doctor, and let them know what’s up on all this, seriously. OK?
Good luck, and best of wishes,
Scott
March 14th, 2007 at 10:54 am
Thanks for hosting all these comments. Reading them has been very helpful. I had my first episode a month ago, and one today, with all the classic symptoms everyone describes. I had been warned I am at risk for detached retina, so I was very concerned about this, but when my vision returned to normal after 20-30 minutes, and my symptoms didn’t really match up with detached retina, I suspected it had to be something else – and from reading your pages and others I have learned it is SS.
Three months ago I was diagnosed with cancer, had two surgeries, lost a lot of weight and am now scary-thin, am taking Tramadol daily for pain, and have a poor appetite. So maybe this is triggered by some nutritional issue, or stress, or even hormones…
Anyway, I feel so much better now that I can put a name to it and know that it is not detached retina (I couldn’t stand another surgery right now). Thank you again for providing this space.
March 17th, 2007 at 3:50 am
After more research, I have found sulfites,along with the possibility of weed killer where vegetables are grown, to be the probable cause of my SS. Like I stated before, if anyone wants a picture of how SS looks to me, they will have to send their e-mail and I will send it to them. I cannot find a way to put it on this site. If anyone has the secret, please let me know. It is better,security wise, for all concerned.
March 17th, 2007 at 9:30 am
You can post it on the web (like on Flickr or PhotoBucket) and put the URL here.
March 17th, 2007 at 6:50 pm
Please e-mail me an image of this Phyl. My address is: domdino57@aol.com
Thanks,
Dennis
March 31st, 2007 at 7:12 pm
As said many times before at this forum, thank God, (and Edith), for this site.
I had my third SS today.
I am a 47 years old, and had my first SS Labor Day last year, (so I’m a newbie), and my second was on Martin Luther King Day this year. Today is my first non holiday.
Thanks to this site, I didn’t panic today, and actually just got on with what I was doing, working on the computer, which was tricky because I had to move my gaze around in order to see. Very trippy.
I am actually seeing a neurologist who calls SS occipital seizures, and is giving me a full array of tests so as to not take any chances.
I have already had an MRI, which, thank God, was normal, and now I am going in for a EEG with a VER.
I also have another troubling symptom which is a slight blurriness in my right eye, which three different eye doctors cant explain or correct. In fact, even with the blurriness, my eye still tests with my glasses as 20/20. Go figure.
It is actually this blurriness symptom much more than the SS, which drove me to see the neurologist. I don’t recommend an MRI if SS is your only symptom.
I was also inspired today to make a video depicting the SS.
I used a thirty second clip I captured with a canon still camera at Crater Lake, Oregon as the base image. I sped up the SS experience in the video to occur completely in the thirty second clip. (I am the guy in the hat.)
As my SS’s have been twenty five to thirty minutes in length, the video depiction of the SS is therefore sped up ten to one.
(Who wants to watch a thirty minute SS movie anyway!)
Please let me know in comments at youtube what you think.
It ain’t perfect, but I did my best.
I also want to note for other newbies, and those that suffer fear as a result of SS, that as much of an inconvenience these experiences are, they are harmless, and nothing to worry about. I haven’t read one post in these 180 pages that says otherwise.
I know I sure freaked out the first time, and thanks to all of you, the second one was not stressful at all, and this last one, like I said, I just blew off, and got on with it.
Love and Peace.
Richard
Here is the youtube link:
http://www.youtube.com/watch?v=gV_37cao38U
April 2nd, 2007 at 6:23 pm
Hello Richard,
Your u tube is realistic except that in your representation there is vision inside the SS circle while I see nothing inside the circle, just white.
April 30th, 2007 at 2:02 pm
Thanx for the web site. I’ve had these thingys for about 25 years off and on, about one a year or so, but recently I’ve had several in the space of a couple of weeks. I was despairing of finding out what they were without a doctor visit and referral to a neurologist or an opthamologist. Generally they happen infrequently and I haven’t felt the need to make a special visit to the doctor. Okay, the last post here before mine was 2004, but I had to write something because it is a relief to find out that other people actually have the same symptom and that there’s a name for it.
I don’t get headaches with these things, I don’t get migranes any more. I seem to associate this with strong coffee, which I’ve been drinking a lot of recently. But I don’t know.
Thank you!
May 4th, 2007 at 8:51 pm
When I told my doctor about what I was seeing, he said" Well, just be sure you’re taking your baby aspirin each day."
My last episode left me standing in a grocery store aisle for about 15 minutes. I couldn’t see well enough to move. I would look at people’e eyes and their chins would disappear, Then the stain-glass crescent began. Thank you for putting a name to this… inconvenience.
May 18th, 2007 at 11:31 am
Yes, thank you for the site and the ability to communicate with others concerning the SS phenomenon. I have had one previous (6 months ago)to this past Wednesday which included the zig-zag wavy colors…but this week just entering a dark restaurant from a cloudy outdoors began my greyish/greenish/purpleish spot seemingly like wearing a cloudy contact;covering my left eye and occassionally it appears with a an open center. It has not disappeared. I have read many, many posts and the aura seems to last 10-30 minutes for most experiencing the SS. I went to the eye doctor and he indicated 20/20 vision with my contacts and the blurry aura. I have taken aspirin but it will not disappear. I drink coffee, white wine, eat some chocolate, had a few too many fried foods last week, traveled by air, stressed out over a few things (like flying) had too little sleep one night, but otherwise lead a somewhat healthy life at home, exercise, etc. So my attack could be related to a number of or combination of events. What I don’t understand is why it has lasted since dinnertime on Wednesday? Today is Friday. Has anyone else experienced long-term auras?
Best to all! Thank you Edith!
May 25th, 2007 at 2:33 pm
For long the initial changes during a migraine attack have been shown to occur in the occipital cortex. In the recent years, the understanding of migraine has advanced with the availability of functional neuroimaging. A possible role of brainstem structures in the initiation of migraine attacks has been proposed based on functional magnetic resonance imaging blood oxygenation level-dependent signals. Activation of brainstem structures preceded activation of occipital cortex. Our understanding of cortical spreading depression is also advancing. Using multiwavelength optical intrinsic imaging, cortical spreading depression has been shown to have a triphasic response in rats
June 16th, 2007 at 12:25 pm
Hi Edith,
I am a 52 year old male in otherwise good health.
I have been having these same symptoms, beginning 10 months ago, after being exposed to carbon monoxide gas. During the several months that I was first exposed to the gas, I began to have these symptoms. The Neurologist (MRI -Brain) and Heart Doctor (Stress Test and ultra-sound of arteries in neck), could not explain it. After a friend suggested looking into the possibility of carbon monoxide poisoning, I was able to determine the source of the exposure and stop it, but the symptoms continued. My symptoms would begin after being in a large grocery store with lots of fluorescent lights, or after reading the morning newspaper, or when I went into a certain warehouse with high output 400 W UV lights. When reading, I would notice I was having trouble reading the small print. I would often experience an unusual feeling (not a headache), behind my eyebrows. Soon, everything would appear much brighter, as if it were washed in light. When I closed my eyes, I would notice jagged forms in my left eye, when there used to be none. The episodes would last about 20 minutes, (They lasted longer when I was still being exposed to the carbon monoxide gas). I have had about about 10 or twelve episodes so far. Dark glasses, a darkened place to sit, and closing my eyes have helped me get through an episode. After having gone to several specialists, who could not identify it, I was finally diagnosed by an Opthamalogist as having Scintillating Scotoma. I, too, thought that I was experiencing the beginning of a life ending event, but fortunately, the frequency is slowing down. It has been over one month since my last episode. I think that they are going away. I am feeling better at least knowing what my condition is. I was on blood thinner and alzheimer’s meds at one point, as I had some memory loss due to the gas. I am no longer on any meds. I am glad to have found your web site. Thanks! E S Jenkins
June 21st, 2007 at 1:08 pm
Hi Edith and everyone,
First of all I would like to say thanks so much for these pages.
I am in the UK and here we call these episodes Ocular migraines.
I have been able to find out so much because of Edith’s site and it has helped so much.
I am a 53 yr old female and have had an isolated episode about 3 times since I was 40 yrs old and put them down to over doing it and anxiety but then in April I had 10 episodes in 2 weeks no explanation only weird weather here, bright sunshine and rushing around and a touch of sinus, these pages had helped me then very much, then I had a break for about 3 weeks but the first bright day I was treated to the blind spot, then the zig zags and then a lovely display of circulating colours, no headache as such just an underlying one.
I have lost my speech for about 5 minutes twice during these episodes which is even more alarming but have put this down to severe panic.
Needless to say I have visiited my ophthalmologist and all was fine and then my doctor, who was quite alarmed and had blood tests done, which gave no clue except for a high cholesterol which is really un related.(I hope) I am now waiting for an appointment with a neurologist which seems to be the same road travelled as others.
I have been okay for about 2 weeks now but am worried about the next one too.
My doctor seemed to think it was mini strokes but I do disagree as am otherwise healthy and they don’t seem to fit in with the symptoms at all except for the speech loss.
My brother has been very ill with sinus pain since April too, which was first being treated as migraine but he doesn’t get the vision problems but it was so painful he had to go to Emergency where they gave him morphine, he is waiting for an apointment too with a neurologist, strange coincidence.
I am trying to identify certain triggers and thought sunlight was one until I realised I had on episode in an evening while reading so am at a loss. I had one on holiday in the lake discrict in the UK simply by taking a photo of a mountain, my eye sort of pulled and it set off the blind spot then zig zags, it was an hours trek back to the car, which was an awful experience as realised a should have sat under a shady tree and waited for my vison to clear instead of putting myself through that!
Keeping calm and quiet has certainly eased the symptoms but sometimes easier said then done.
Thanks everyone and Edith
July 20th, 2007 at 1:21 am
Hi Edith, I was had a freaky moment yesterday. When I was about 12 years old (I’m 16 now) I used to have the dreamy states of a migraine, but never had any other symptoms or a headache. I stopped having the dreamy states after a few years, and then my Freshman year in high school I started having an ocular migraine. I thought I was DYING! Lol, it was scary, because my mom had always talked about her migraines, but I didn’t know what they were like. (Keep in mind I was at school and had to wait 45 minutes before getting picked up, lol.). To get to the point of what happened yesterday……… I was home with family, and all of a sudden, I had the weird Deja Vu thing like you had mentioned earlier. It was one right after another, all in the matter of 10 minutes or so. I came in the den, and saw something familiar, I looked at the screen, I saw something familiar, my mom said something and that sounded familiar. And the creepiest of all was when I went and sat down and watched T.V. I was able to predict the next two commercials that came on, right after another. And then the show Rescue Me came on, and I never have seen that show before, I was able to know what the people were going to say like 3 to 5 seconds before they would say it. And these weren’t just everyday sentences, they were pretty complicated. Anyway, thats getting a little too far off of the topic, I want to know more about your deja vu part of it. As I said, I had about 5 in 10 minutes and then after that, I had the Dreamy state for about 45 minutes. It also caused me to have a panic attack, lol. I was quite scared.
Please get back to me with some information. best wishes, Zach. eMail = shortbusguy409@yahoo.com
August 3rd, 2007 at 11:49 am
I think I had one when I was 15. I’ve had (all my life) an occasional muscle spasem that occurs in my back causing the muscles to tighten and pull from the front of my ribs around my side toward my spine. Let me tell ya, it HURTS! It feels like I’m being stabbed in my ribs. Each time I take a breath it pulls again so I breath shallow and relax until it goes away.
I’ve also had issues with occasional Tinnitus which is annoying but never lasts long.
Well, one day I was lying in bed (typical teenage late riser) and as I was about to sit up I felt as if a dagger was plunged into my side. At that same instance I heard the high pitch ring in my ear. I fell back onto the bed…staying there a couple of mins which felt like forever.
I tried to get up & make my way downstairs to my mother for help but just couldn’t do it. I ended up on her bed in pain. As I laid there with my eyes closed I could see what seemed to be a white flash in my eyes. As the flash grew larger (creating a donut-like circle) the tinnitus became LOUDER and the pain seemed to last longer. I made sure to look at the clock before I had laid down again so I’d know how long this lasted.
As soon as the "light" completed its circle the flash was gone, the ringing faded, and the pain stopped. Needless to say I was freaked. I looked back at the clock and noted that 10 mins had passed.
I immediately told my mother and we ended up at the hospital for an EGG. Of course, they found nothing and left feeling like a nut job.
Well that’s my experience, it hasn’t happened since and I hope it never does. Take care.
August 9th, 2007 at 7:10 am
Hi there. I just googled some symptoms I just had while at work and your site popped up. I was almost relieved to know that someone else has the same semi-circle of flashing zig zagged lights. I Web-Md’d the symptoms and it had me concerned that I might have a more serious condition. I also don’t have any pain afterward, so it’s hard to understand that this is a migraine (?). Thanks again for posting this!
August 13th, 2007 at 10:21 am
I have been having these same eye problems for a couple years now. I was surfing the web the other day about migrains and stumbled upon a site that talks about artificial sweetner. It especially talked about aspertaime. The stuff thats in diet coke. Thats what I drink. I was floored. Anybody here ever hear bad stuff about it?
Thanks
Theresa
August 13th, 2007 at 3:11 pm
Hi, Theresa,
Per Aspertame: There has been ongoing controversy about this stuff since the 1970′s and even before. In some tests, it showed neuro-toxicity in lab animals…..and the FDA refused approval of it for a long time. Without evoking TOO much political controversy here, when the Reagan Administration took over in 1981, Aspartame was fast-tracked onto the market by the newly appointed FDA chief, who only served a short period of time before being given a very lucrative job at Searle Pharmaceutical…..the makers of Aspartame. Food for thought, there…..although certainly not unusual in Politics, regardless of who’s running the show at a given moment.
At any rate, the controversy continues over two decades later. Some highly reputable medical researchers and doctors still believe it to be unsafe, at least for certain individuals. Beware of much of what you read, though, in terms of anti-aspertame sites—-many are seemingly run by out and out quack practicioners with VERY questionable notions and medical credentials. An hour or two of Googling should give you more information……good, bad, and ugly…..than you’ll ever know what to do with.
Bottom line is that it SEEMS that as long as it’s been on the market and as heavily as it’s been consumed……it even shows up in things like toothpaste…….if it caused serious neurological or brain damage, we’d largely be a nation of brain-dead Zombies by now. Errrrrrr, wait…..forget that line of reasoning, LOL, now that I consider it……but seriously, while it’s nothing Mother Nature ever conceived of, it APPEARS largely harmless to the majority of people.
But….there is still SOME evidence to show that it may affect certain sensitive people, or people who have a hereditary problem where they lack a key enzyme needed to properly metablolize this. It MAY be a contributing factor to your scotoma’s……but in all probability, it isn’t. People have had this problem for thousands of years before NutriSweet hit the markets in the 1980′s. You could kick the Diet Coke habit for a few months and see what happens, although again, Aspartame is hidden in all sorts of products you wouldn’t expect it to be…..but given the fact that these scotoma’s might go into remission on their own for literally a decade at a time….you really would have no way of knowing for certain if eliminating Aspartame from your diet was the key if you don’t have any more of these for a long, long time. I don’t drink the stuff mostly because I think it tastes like brake fluid, and I still have these bizarre migraines……so it’s not the cause with me at least.
Good luck, and Google will provide you with all sorts of conflicting information …….but unfortunately, few real answers to this.
Regards,
Scott
August 14th, 2007 at 7:53 am
I suspect chocolate enough that I completely avoid it, also I suspect the caffeine in the chocolate as the causing agent. It could be the same in diet soda instead of aspertame.
Low Sugar:
I can have a complete 15 minute SS attack everyday just like clock work or I can avoid it all together.
If I eat breakfast at 6am and have lunch at noon, by 11:30 my eyes will be light sensitive and strange and if I just wait till noon to eat, I will have a full blown SS attack by noon and it will continue for 15-20 min eventho I eat a good lunch.
If I eat at about 11:30 when things look strange I will not have the SS attack.
August 16th, 2007 at 6:03 pm
Hey folks! Sorry to do this again, but I’m closing comments on this post. We’re approaching the 200 mark and it’s becoming quite tedious for my blogging software. But never fear, I’ve already started a new one thread over here.
Please note that if you’ve subscribed via e-mail to receive comment updates on this post, and you want to re-sub, you’ll have to post a comment to the new thread. Sorry ’bout that. HOWEVER you can avoid all that by subscribing to our shiny new RSS comments feed!! (Using Google Reader or Bloglines for example.)
I wanna give my heartfelt thanks to all the people who’ve commented here, for being so great, sharing your stories and helping each other out with advice when needed. Whenever somebody thanks me for keeping this thing going, you best believe they’re really thanking all of y’all even more than me! I usually like to keep my trap shut and let the smart people do the talkin’. (grin)
August 16th, 2007 at 6:10 pm
Oops! I sent out the wrong URL for the comments feed for the new thread. This oughta work.