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…