Scintillating scotoma
Saturday January 27, 2001 – 5:00 pmNote: This is a journal entry — it was written on paper or on my computer, then transferred to my website, maybe years later.
Had another ocular migraine today. No pain, but a far-out light show!
Update: Comments are closed on this post; the discussion continues on this newer one.
December 26th, 2002 at 5:16 am
The other day I had a "scintillating", without the "scotoma". First time ever. I saw the jagged zig-zag lines in a semi circle in my left eye. It lasted for about 7 minutes then disappeared. However, I had no "blind spot" or loss of vision, other than the shimmering zig zag semi-circle disturbed what I was looking at at the time. so what is that? ABout 6 months ago I had laser surgery on that eye for a retinal tear.
December 27th, 2002 at 6:55 pm
I haven’t had one of those migraines since I posted that entry, but I used to get ‘em a lot. It’s a neurological thing, it’s got nothing to do with your eyes, but rather the part of your brain that controls vision. So I don’t think the surgery would affect it one way or the other, but you’d have to ask your eye doctor. I did, and he told me not to worry about it unless it was painful, which it wasn’t. But he did check my eyes out very thoroughly to make sure there wasn’t some other explanation for it.
February 20th, 2003 at 1:20 am
I’m glad you posted this. It is comforting to know about other people with this problem. Lately I have had clusters of them due to a lot of tension. For me it is stress that brings it on. Always lasts 20 minutes. Follows the usual pattern. Doing yoga and meditation helps, but I don’t always follow my own advice.
February 20th, 2003 at 6:40 pm
I get this phenomenon after I have a played a particurlarly hard game of squash or football.
It lasts about 20 mins and I think is normally in my left side of vision.
Sometimes it is accompanied with the feeling of a headache coming on.
February 20th, 2003 at 10:28 pm
The scintillating scotoma phenomena is a cortically generated phenomena, so eye surgery is unlikely to have a main effect, although there is a small possibility that any strain during recovery acted as a trigger.
Im a neuroscientist and have come across this page in a general literature search as I am writing a paper on an SS episode I was fortunate enough to catch in our brain scanner and have now localised. Appears to be abnormal electrical activity which spreads across the occipital lobe.
Will submit this to nature I think, although it may end up in a lesser journal ‘Lancet’ or ‘TINS’.
Interresting to read the individual accounts.
February 24th, 2003 at 1:29 am
I started having S/S in 1995, had an episode about once a year, then maybe every six months, finally having a couple a day some days…sometimes wake up having them; then they suddenly stopped a month ago. My nerves are frazzled and I wonder what’s happening to me….Anyone ever have the attacks that often…anyone ever have a stroke associated with S/S?
February 24th, 2003 at 6:35 pm
Wow, I guess it’s been two years since I’ve had one of those SS lightshows. Jennifer, all I can suggest is to try to do something to relieve that stress. The SS attacks probably won’t hurt you but the stress sure can. I’ve never heard of any relation between SS and strokes. I don’t know anything about such things but aren’t strokes a result of a problem in the circulatory system rather than the brain? I have no idea, it’s just a wild guess.
February 26th, 2003 at 5:57 am
As others have stated, it is such a relief to hear your comments. I had a s/s on 01/21/03, 01/24/03, and 02/07/03. After hearing the symptoms, my opthamologist told me it was a migraine related problem even though I had no pain, nausea, etc. He sugguested that I see my primary care physician if it happened again. It happened again on 02/21/03 and I saw my pcp on 02/25/03. He suggested a neurologist or a script for Imitrex. He gave me the script, but it seemed apparent that there was no need for that. I have decided just to play it by ear, and the comments here seem to suggest that is the best thing to do.
Also, upon reflection, something like this happened to me three other times during my life–once when I was 13, once when I was 33, and once when I was 45. Some common things seem to be coming out of the cold suddenly into the heat and/or having looked at sun and snow at the same time. This might just be coincidental. Anybody take blood pressure medication? I’m taking Diovan. Haven’t heard that this could be a side affect, but who knows? Thanks for the comments.
February 26th, 2003 at 6:12 am
When I was in my twenties, before I’d realized what this was, I thought it was happening because I had looked at a bare lightbulb! Crazy what you can come up with to explain the unexplainable.
February 27th, 2003 at 12:08 am
Nice to read comments, don’t feel so quite so alone. Anyone feel disoriented with or after S/S?
My cardio said it is vascular and referred me to neuro. Neuro wrote TIA as my dx and sent me to have MRI and MRA. That was why I was wondering about stroke. I’m waiting now to hear from neuro.
Thanks everyone for comments.
February 27th, 2003 at 12:15 am
Oh forgot to answer you, Amy, re high blood pressure meds…I have been treated for hbp since I was in my early 30’s…take Avapro and Norvasc and those two in combo control my bp quite well. Has anyone experienced s/s while driving?
February 27th, 2003 at 7:22 am
To answer your question, Jennifer, no, not while driving. My mother, who is 86 years old now, had a TIA about 20 years ago. Her symptoms did have something to do with her eyes, but I don’t know if it was s/s. As I recall, her vision problem lasted more than 15 to 20 minutes.
I was just amazed to have found this site on s/s. After having the problem and speaking to my opthamologist, I looked up migraine in an old medical book, and found the definition for "scintillating scotoma" which described perfectly what I have experienced. Typed that in my browser and… God Bless.
February 27th, 2003 at 7:37 am
What is a TIA? This isn’t really a site about SS though, it’s just my personal site, ostensibly to promote my music, but I’m very happy to have y’all here. Somebody SHOULD make a site for this. Is it really such a rare phenomenon? I think it’s pretty fascinating, how the brain can produce these amazing colorful hallucinations. I’ve tried to draw them but they’re just too groovy to depict in 2D. You’d have to do an animation to even begin to describe what we’re seeing.
February 28th, 2003 at 4:33 am
I have been having these "SS" things for about 5 years, varying in frequency from every 3 months, to every week, just recently… I plot the frequency on the calender and keep details of the lights I see… I am a 59 yr old male, .. there is a slight headache, afterwards.. usually..
I did have an RK 10 yrs ago… My eye Dr says not to worry about it.. others have them… but they are troublesome, and take more attention than I like to give..
I recently seemed to reduce the frequency by eliminating Tea… and Caffeine.. I have found suggestions that it can be caused by the Tannin in tea.. but eliminating it did not stop it completely..
If you use the image search on Google you will find images folks have submitted…
It is interesting to find other with the problem..
February 28th, 2003 at 8:04 am
A TIA is a Transient Ischemic Attack. It is like a stroke; the symptoms usually last only a few minutes but can last much longer. It has to do with blood flow to the brain, etc. You can find much information about it if you type Transient Ischemic Attack into your browser. There is information on the NIH.gov (National Intitutes of Health)site.
March 2nd, 2003 at 10:47 am
I used to get them about once a year from my early teens until my 50’s. Now that I’m in my 60’s I no longer get them. I attribute this to a less stressful life style. However, I have advanced normal tension glaucoma with severe damage to one eye and some damage to the other. I wonder if there is a connection. I’ll have to ask my eye doctor. Mine lasted almost an hour with severe loss of vision. Not pleasant.
March 3rd, 2003 at 12:29 am
i’ve gotten these, sometimes preceding a unilateral headache, sometimes not, a few times since i was about 13 (i’m 34 now). usually they last about 20 minutes then go away, but i feel funny afterward.
this last saturday, however, i was skiing and accidentally went off a banked turn on a boardercross course. i flew about five feet or so in the air and landed on my lower back/pelvis. needless to say, it hurt like hell and i’m still feeling it.
anyway, immediately after the crash, i started getting the little blind spot. it grew and moved (and developed the colorful scintillation) over the next 20 minutes or so, then faded from view. no headache.
i still skied (very carefully) for another 2 hours, then picked my daughter up from the ski school and went into the restaurant for a snack. while sitting at the table, the blind spot returned and grew and covered a large part of my upper-left field of view. this one also held on for about twenty minutes, then went away, this time followed by a headache on my right side.
i’m wondering, has anyone had or heard of S/S being brought on by back injury? or of it going away and returning hours later?
thanks!
March 7th, 2003 at 3:58 am
I Am plotting my SS episodes on a Calendar. The frequency increased to more than once a week.. If I have one, I may have another the same day.. that has happened twice..
I am trying to tie down the trigger.. going without tea seemed to stop them for a month.. but then they returned.. there is such a distance between any possible trigger and the SS.. very difficult to determine a cause..
I want to go back to this page occasionally to see if anyone has determined a cause..
Mine are always in the Afternoon .. I have only had one in the AM.. of about 20 I have had..
March 13th, 2003 at 12:50 pm
I had a ss yesterday the first one i`ve had for approx 3 years -what a dissappointment, it really shook me up I thought they`d gone for good!
I was reading a magazine and the words began to dissapear behind flashing lights and zig zags. It lasted approx 25-30 minutes they gradually reduced in intensity before going altogether .I find it really difficult to explain how it feels to friends and family so found it really helpful to read other peoples description of it.I was left with a bit of a "muzzy" head but not a really bad headache, which I slept off.
I just feel like i`m waiting for the next one now.I wish I knew what brought it on but I haven`t worked that out yet.I am 33 years old.
Thanx for the support, I feel more confident knowing i`m not the only one out here !
March 16th, 2003 at 6:36 pm
I have had SS for about 15 years now, with episodes occuring irregularly, sometimes years between episodes, but weekly over the last few months since suffering a burst appendix. Sure wish anybody had any kind of a clue about what causes this - I get a different explanation from every doctor. I think my experience had deeply affected my work as an artist.
March 17th, 2003 at 1:14 am
I return to this chat almost every time I have one, Which is now about once a week..
I see there ae 12 people who have made commments, and some like me return.
I am interested if anyone has taken any medication which stopped the SS, albeit as they sometimes quit by themselves, it would be hard to prove
Someone asked if anyone thought BP medications cause it.. I actually went on to BP medications because I was scared into the Dr office by the SS.. I have had "white coat HP" all my life, but never too medication until now..
I hate the damn thing, and would like to get shed of it, as they say down south.. does anyone know any medications for it ?
March 18th, 2003 at 5:52 am
Funny -I’m having one right now. Twenty minutes is good guess at duration. With me, they start very tiny, a small zigzaggy spot that grows, expands,gets bigger and wider, and eventually is out of visual range. Had my first one 40 years ago, at age 45 while sunbathing. I have never associated them with stress; they are never associated with pain or headache; eye doctors say nothing to worry about. So I don’t.
March 25th, 2003 at 7:07 am
Anyone else experience the scintillation without the actual scotoma, i.e., the zig zaggy lines without the blind spot or loss of vision? That is what I experience about once every 3 months. I am 24. Will this develop into full-blown migraine later on?
April 5th, 2003 at 7:56 pm
I had my first one yesterday. Never had anything like it before. I’m so glad to find this site as I thought I was having some kind of terrible brain hemorrage!
April 7th, 2003 at 3:11 am
I’m having one right now. I’ve never had one before and I have to admit its freaking me out a little bit. I’m 29, healthy, no headaches. It started as a small blind spot like I had looked into a light bulb. Now its surrounding my entire left eye. Small headache starting on the right hand side. I think I’ll float this one past my doctor and see what he says.
Glad I found this thread though. I was beginning to get very scared.
April 11th, 2003 at 1:13 am
It is very reassuring to read of so many others who have had and survived s/s. I’ve been having them for about 10 years, some times twice a month and then not again for four months. A few times like today I’ve had two just a few hours apart. Guess that’s what got me worried enough to search the internet.
My GP, an Opthmalogist and a Neurologist all three have assurred me that it is a chemical phenomenon in the brain, that there was no significance to them (It annoys the dickens out of me.) and they made no reccomendation for treatment. They were careful to determine that my S/S was in both eyes before they gave me this reassurance. If it is in only one eye it is something different.
I have had S/S while driving. I’m pretty sure I could continue driving but I generally switch drivers or get home quickly.
I’ve charted my s/s against various meds I’ve taken and off and on coffee and about the only things I can possibly see a relation to are stress and allergy. Both of these are hitting me right now. I just got a book back from the printer that needs a bunch of corrections and I’m worried they will give me a hard time about them and tree pollens are in the air around here.
April 13th, 2003 at 2:30 am
Had another Ocular migraine today, my fourth in as many days. So I’ve been searching the internet.
Here is a good brief discussion of the thing:
http://www.eyes-and-more.com/article184324.html
Larry
April 13th, 2003 at 7:25 pm
A couple of months ago I had two episodes of what the optometrist called ocular migraines. I had the temporary loss of vision, the zig zaggy lights and little colored dots. I felt a little nauseous and had a slight headache afterward. About a week after that, I had a blurry, cloudy thing come over my left eye. It did not go away. A few days later I had an episode of aphasia, went to a neurologist for multiple tests and was told the so called ocular migraines were actually strokes. The strokes were diagnosed 60 days ago. I still have the cloudy, blurry thing going on. The neurologist says don’t worry about it, but my optometrist has made me an appointment with a neuro ophamologist.
April 17th, 2003 at 12:33 am
. . . just adding another case, one that is [now they tell me!] fairly typical.
I have experienced SS for about 35 years. Onset is usually in the PM, and seems to me to correlate negatively with stress. Duration is about 20 minutes. Frequency is irregular but amounts to about 10 per year [counting two today]. The visual anomaly is [of course] the same in both visual fields. I have had marginal HBP for 40 years and have taken BP med for about 10 years.
Until today, and despite conversations with a few eye guys and nerve guys over the years, I figured I was the only human being with circuitry bad enough to produce SS.
I think I could drive during what I now see is called an SS "attack," but I sure can’t +read+: I was always afraid that some day I’d have to tell some boss or audience that this inconvenient brain spasm was preventing me from being able to read text, but not to worry, I’d be able to resume in a few moments, no problem, really.
It feels to me that onset could be triggered by a bright light or flashbulb. I realize that this must be physiologically impossible.
I don’t use red wine or chocolate or cheese much, and would doubt that these agents are my personal triggers. I haven’t yet ruled out jelly beans.
So: Welcome to the club, folks.
Larry M
April 22nd, 2003 at 2:01 am
I was diagnosed with Giant Cell Arteritis which is a Vasculitis disease in 1998. It is an Inflamation of the large arteries in the head and is treated with prednisone. Ever since diagnosis I have had scintilatting scotomas. I can not establish a frequency or trigger. I have seen various Doctors, including a NeuroOpthamologist and am told it is a migraine aura without the migraine. They last about 20 minutes and are very scary. Does anyone else with Vasculitos get them? If so, I would like to hear from you.
April 28th, 2003 at 6:03 pm
Had s/s driving to work this a.m. Didn’t recognize it at first, just noticed I couldn’t see peripherally out of my left side about the 10:00 position. Then I recognized it as it started to "grow". I have had a little one here and there since the first about 7 years ago…couldn’t see through about 1/3 of my vision. I was told the same thing all of you have been told. I have migraines, don’t have one now. Just feel weird, a little disoriented, like someone is squeezing my head. As I started out on my 2 mile run this a.m., I started getting a little headache, but it finally went away. Then, 1.5 hr later, the s/s started on my drive to work. I constantly see spots; purple, blue, silver, orange, fuzzy, shimmering, black, on the wall, on the ground, in the air. They’re just a "normal" part of my every day life. My left side went numb and I experienced bad disorientation the first time, but not this time. You are all right; it is very comforting to know others have had the same experience.
May 7th, 2003 at 7:38 pm
Thank you ALL for your comments! I can now breath a somewhat sigh of relief. I started having SS several years ago, but yesterday it manifested itself as a blind spot in the lower left quadrant of my binocular visual field. It lasted most of the day and appeared to be brought on by my first view of the bright sunlight coming through my back door. I went to a local ophthalmologist and he ruled out anything that may have been associated with my type II diabetes. A CAT scan at the VA hospital ruled out anything serious for the moment. I now have an appointment for next week to confer with a neurologist. After discovering all of these postings, I am very surprised that the eye doctor didn�t mention SS or painless migraines. I am 58 years old with a quadruple by-pass and titanium mitral valve. I take 10 different meds a day, including the anti-depressant citalopram hydrobromide, which was recently increased in dosage by 50%. I will endeavor to keep you guys abreast of my prognosis. Thanks again!
May 8th, 2003 at 12:53 am
I’ve had the scintillating lights without the blind spot; just distortion where the colors were, like awavering stained-glass window… Can’t read when it’s happening, and that’s usually my first clue. 20-25 minutes. Sometimes both eyes, which can be annoying because I can’t just close one eye and proceed. Frequency may be increasing. I am 60 y/o. It’s like that critter in the Schwarznegger film about the alien. After it’s over I have a sensation across the back of my head, but no real pain.
May 12th, 2003 at 4:25 am
I come back to this site once a month or so…
I get the feeling that most of us are wearing reading glasses..
I talked to one guy who had them for a few years, then they went away..
I woke up the other night, about 3 am.. I was in the last stage of one…
Frequency remains about 3 to 4 per month… having one now..
I suppose this page has filtered out a lot of people who have them.. so perhaps we are the same because of the filter, not because of the S/S
May 12th, 2003 at 4:31 am
I’m not sure what you mean by filter… I haven’t deleted any comments off this page if that’s what you meant.
May 13th, 2003 at 4:10 am
I am a 24 year old female. I first experienced the dizzying lights my 2nd year of veterinary school. I just had my fourth episode last week, about a year and a half after my first episode. I am on birth control, but have been on no other medications consistently since these started. Mine are painless, but they usually last one hour from the first dot of bright light until my vision is clear. The dot grows larger in a circular pattern until my entire visual field is moving in color and bright light. Both eyes are affected. I also experience trouble breathing on a daily basis. The pulmonologist I visited diagnosed me with "reactive airway disease". But inhalers don’t seem to stop my symptoms. I can’t take a deep breath and have to sigh and yawn a lot throughout the day. I don’t know if the two things could be related. Just thought I’d put it out there.
May 19th, 2003 at 6:12 am
I have just joined the club. I am a 59 year old male in very good shape and have been experiencing SS without knowing what it was for about 4 years now. I went to an eye specialist and he asked me if I was under a great deal of stress. Since I was retired, I couldn’t understand being under stress, but realized I had been lifting weights and putting myself under stress. I have cut back on the weight training but still suffer the occasional bout of SS and it is usually after putting myself in a stressful situation. It is nice to know that I am not alone and from what I understand they don’t appear to be serious, at least not as bad as a full blown Migraine.
May 21st, 2003 at 2:07 am
My 12 year old son just finished an EEG and is having an MRI later today. He saw "bright lights" and could not see anything but the bright lights, decreased hearing in one ear, started sweating and felt sick in his science class. Apparently he has been seeing the "bright lights" for a while now but not see fit to mention it to me. However, he did tell me about the lights combined with the sweating, etc. We will get his test results back Friday - I hope it is not something very serious.
May 22nd, 2003 at 3:21 am
I have been having scintillating scotomas for about 15 years. First time in a Chinese restaurant - I didn’t know what was happening. They became increasingly frequent until the week of September 11th 2001, when I had three or four a day. I was diagnosed with a brain tumor - completely unrelated, benign, removed - and am now taking Inderal, a high blood pressure medication that seems to decrease the frequency of s/s. If I get one while driving, I have to pull over. Changes in light seem to trigger them, but not always. The duration, like most reports here, are about 20-40 minutes followed by a dull headache (9 times out of 10) or a traditional migraine (1 time out of 10).
I am a 48 year old postmenopausal woman on HRT.
May 27th, 2003 at 7:37 am
I am a 59 y/o male, I have been having ss for 15 years. They seem to be connected to the hypothyroid condition I have as the generally occur more often when the T3/T4 level is messed up. Also seems to be aggravated by excess caffiene and or nicotine, and sometimes by bright lights. Sometimes it is weeks or months between them, and sometimes several in the course of a few days.
May 28th, 2003 at 7:43 pm
At the age of 47 and in good health I experienced my first Scintillating Scotoma on Thursday 22 May 2003, which manifested itself as a small blurred area about five degrees to the right of central vision.
I was looking at part of a phone number and realized I couldn’t see the next digit. When I looked directly at it, I couldn’t see the next digit and so on. It lasted about 15 minutes. This was pretty disconcerting as I’ve enjoyed perfect vision all my life.
The next episode occured two days later when looking at a computer monitor (I believe that was unrelated). Then, the classic shape of the curved, parallel, zig zag lines appeared in an area about 5 degrees to the left of central vision and occupying about five degrees in width.
I was strangely reassured with this as it was a close match of a picture I’d seen in an article about migraines in Scientific American magazine about 30 years ago. I felt slightly giddy, but no migraine.
I think these episodes may be related to some new vigorous exercises I’ve been doing (including push ups) as nothing else in my lifestyle has changed.
May 31st, 2003 at 3:51 am
I had my first s/s 2 days ago and it was very scary as I have never had anything like it before. I am a 44yr old female. I have been under some stress lately and I had just carried something awkward and heavy to my car. Got in to drive and it was a particularly bright day and 10 mins later this zigzag shape appeared in what seemed to be the windscreen of my car on the left to middle. Washed the windows and still there, began to realise was my eyes and in both even when closed. Drove home found it had moved or joined up in some kind of a mosaic pattern all around the edge of my vision. Rushed to dr and by time I saw him vision had returned. Yep lasted about 20-30 mins. He checked me out bp fine, sent me to see optometrist, eyes fine, did blood tests all ok and gave me maxolon and voltaren to take for a couple days. Just a slight headache and fuzziness and didnt like too much light. Found perfect drawing of it in book "Migraine" by Oliver Sacks and found out its name then. Hope I dont get any more and that it was a one-off due to the exertion and stress. It’s kind of a wild experience to have but too scary to want to have again. Good luck to you all.
June 4th, 2003 at 2:04 pm
The feeling I’m having right now is one of overwhelming relief. I’m 44, female, and have been having these "episodes" for several years, but never knew the name of them — or that anyone else had them — until I finally searched the internet tonight. I was in the middle of a particularly large SS and was feeling a bit panicky. They used to come on maybe once every couple of weeks, but I had one last night and again tonight. Never had two so close together before.
I’m a computer artist, and have tried several times to capture the jagged bright lights graphically, but it’s just so hard to get that dazzling effect — you all know what I mean. I’m going to try an animation once the pressure in my head lifts. I seldom get headaches, and never right after an SS…just this pressure, as if someone’s hands are on either side of my head, pressing firmly, but not quite painfully.
I can’t figure out anything unusual that brings on an "episode." I am bipolar, and have taken Lexapro (an SSRI antidepressant) for the past six months, but there has been no change in dosage that would bring this on more frequently. I’ve been on one antidepressant or another for over ten years, but I can’t connect any medication change with the onset of SS episodes. I also take Dyazide (a diuretic) for swelling in my legs, but I’ve taken that for about three months.
I’m just relieved to have finally found a name to put to this experience, and to know that it’s relatively harmless in most cases. I will see my doctor as soon as I can get in for an appointment, but in the meantime, I won’t worry so much. Thank you for that, everyone…especially Edith. (I’ve bookmarked this site.)
June 4th, 2003 at 2:43 pm
Hairfish if you can make an animation I would love to see that, and I’m sure others would too!! If you do, come back and post a URL, or e-mail me and we can talk about getting it onto my site so we’re not using your bandwidth. My e-mail is my first name at this domain. (I hate spammers so very much that I can’t bring myself to type out the address like normal people do. ;-)
June 4th, 2003 at 5:10 pm
Read the posts with interest, as I had a scintillate only about two hours ago, and another two days ago. I also have a bad cold right now, so that may be a connection. I have been getting scintillating scotoma for about 30 years now, sometimes a few a week, sometimes years between attacks. The most dramatic was over 20 years ago while driving a car at night down a mountain road near Wollongong NSW; somehow I got home safely though half the road had disappeared! (I had my head examined after that but all was well.) As with others, I find they last about 20 minutes. My mother used to get them (she called them "spirally eyes”) and so did her father. Anyone else find it runs in families?
June 7th, 2003 at 7:54 pm
I just started getting these s/s. The classic zig zag white lines which eventually go out into my peripheral vision and then disappear. My opthomologist said they usually last at least 15 minutes. Mine only lasted about 5-7 minutes so he thought it could be my gel separating from my retina (common) or it could be s/s. It scared the hec out of me. I’ve also been under a lot of stress lately and get these aches behind my left eye which I associate with the stress. Anyway the optho didn’t seem too concerned. I just hope I don’t get any more.
June 10th, 2003 at 10:21 pm
I’ve been having ss episodes perhaps 2-3 times a year, and I can’t figure out any kind of pattern or anything remarkable about them until my latest one. I was scuba diving at a depth of approximately 95 feet, and it came on suddenly and didn’t disappear until I was on the surface for about 5 minutes. Has anyone had any theories about these regarding pressure, either ocular nerve pressure, ocular blood vessel pressure, or anything like that?
June 10th, 2003 at 10:27 pm
I had my first ss about 3 years ago, although I usually don’t get the headache. I was told it was a migraine "equivalent" or painless migraine.
However, since Monday I have had eight episodes of ss with a very mild headache (just the top of my head was hurting a little when I coughed.) I find this many ss in such a short time period a little disconcerting and have a call into the neurologist.
June 15th, 2003 at 2:51 pm
An SS started a couple of minutes ago, and I came right here! Took a bit of work to read the posts, of course…
I tried that animation, but it turned out to be such a huge file, I settled for a single picture. As soon as this thing clears up, I’ll send it.
I have an appointment on June 19 with my doctor, and will have him schedule any tests to rule out more serious problems. Now that I’m 99% sure what it IS, though, it doesn’t frighten me any more. Just annoys the heck out of me!
Ack — this one seems to have a little taggy piece off to oneside. Anyone else had them with "satellites"???
June 15th, 2003 at 3:08 pm
Edith, rather than email the picture, I’ll just post a link. I forgot the file was this small. Don’t worry about the bandwidth…I get lots of hits as it is (a large part of my site involves game downloads). But if you’d like to download it and place it on your site, you have my complete permission!
Here’s my view of a Scintillating Scotoma:
http://hairfish.com/share/ss.jpg
The odd thing is…the SS in the picture points right, but the one I’m currently "seeing" points left (it’s quite a spectacular shimmer, but almost out of view now). Are there any theories about why they point one way or the other? They remind me of the carats ‹ › used in HTML code. Weirder and weirder…
June 15th, 2003 at 10:31 pm
WOW. That’s similar to mine, but mine aren’t (or weren’t) v-shaped like that, and I wouldn’t see as much white light as that — more like muted neon rainbow colors. Mine were mostly shaped like an egg on its side, or C-shaped following the outer edge of the more-affected eye (and much hazier in the other). Always different and yeah, sometimes a little irregular patch would erupt off the side. I have no idea why they went away, though I guess I am less stressed-out than I have been at other times in my life when I did get SS.
June 16th, 2003 at 1:45 am
I am so glad that I found this site. I had my first s/s on Friday, June 13, 2003. At first, I thought it was from a camera flash that reflected off of some plastic. But it did not go away until 20 minutes later. I was talking to a person and half of their face on the left hand side was distorted. Around their eye area I could not see it at all on the left side. I was really freaked out. I thought I might be having a stroke or something. Then it gradually started to move out. I started walking around and I was getting sick, like motion sickness. Then I was sitting at my computer and I could see the vision out of the bottom of my left eye. It was like waves of water. It was really weird. I called my eye doctor and made a appointment right then. By the time I got to the doctor’s office it had stopped. They took pictures of my eyes and did an eye exam, everything checked out great. He told me that I had an S/S. I had a bad headache in the right side for about three hours after it happened. He told me not to worry unless I kept on having them. I am a 30 year old healthy female. I guess I will wait and see if I have anymore.
June 16th, 2003 at 1:48 am
I just looked at Hairfish site with the picture and that is exactly how it started but with the point to the left.
Thanks for posting that.
June 16th, 2003 at 6:20 am
I started having S/S in my 20’s. I thought I had a brain tumor. I also have visual floaters all the time. One gets used to them. My opthomologist said they were headaches without the headache. I hadn’t had one for almost l5 years, and suddenly last November I got a couple. I had another one today and am convinced they are due to either stress, light changes or hormonal changes (which could be due to stress hormones). I guess we can sit back and enjoy the light show if they are harmless….would we rather have a migraine? Reading about other’s episodes is somewhat of a comfort.
June 19th, 2003 at 3:17 pm
I’m going with the hormonal theory for mine, since they seem to occur right around the time of my period. I guess I should consider myself lucky, since I don’t have other, worse, PMS-type problems.
I missed my doctor’s appointment yesterday (my husband was supposed to take me, but he got hung up in traffic), but will reschedule as soon as possible. While I’m not as worried about these "visions" as I was before I found this site, I do want to get anything more serious ruled out. You guys have all lowered my stress level immensely!
June 23rd, 2003 at 4:15 pm
I am a 46year old female and have be getting SS’s for the last 7 years. The first episode occured just prior to commencing HRT [premature ovarian failure]. I have an episode at least once a month sometimes followed by a headache but most often not. They leave me feeling disorientated and have occured while driving. I am also on thyroid hormone and have had previous surgery for retinal tears so it was interesting to read other peoples comments.
I think hormones have a definite trigger role to play as well as bright flashing lights.
June 26th, 2003 at 1:26 am
I am a 61 y.o. female who has never had anything like this before yesterday. I thought the bright sunshine was reflecting off my eyeglasses…then I thought my glasses were dirty, then I thought I must have matter in my eye. Finally last eve. my husband knew the medical term for this. I wondered if it was a side effect of Coumadin which I have been on for five weeks following hip replacement surgery. Slight left sided headache today. Nice to find this web site. thanks
June 26th, 2003 at 7:06 am
I have been having scintillation scotoma episodes for the last 15-17 years. They occur with no frequency pattern at seemingly random intervals of approximate frequency 1-3 years. I usually cannot remember when the last episode occurred, since there is nothing to worry about and no treatment needed.
The episode has a definite pattern of starting near the center of the field of vision with minor pulsations and not being able to see clearly in that spot - that’s a signal to me that there is an episode about to occur. The affected field grows over the next 20-50 minutes with flashing zig zag patterns usually dark and bright in character, not colored. In the course of an hour the field of vision is totally covered with the flashing zig zag lines that resemble lightning as portrayed in comic books. Then the pattern becomes more diffuse and within another hour, the field of vision is completely clear. No pain at all. No after-effects.
There’s no apparent connection with stress or tension or anything. The episode just happens and then just fades away. I visited an opthalmologist who was within one block of my home while one of the episodes was happening and he inspected my retina and noted nothing peculiar.
June 26th, 2003 at 7:11 am
RE: SS episodes over the last ~15 years.
Did I say that I am a male aged 67 years in normal health?
Edith please just add to the prior post as an addendum, if you would please, or simply post this one in sequence.
Helpful service, I just learned the name of this thing from an eye doctor for the first time yesterday and it’s comforting in a way to learn about experiences of others with it.
Thanks, Neil.
June 26th, 2003 at 7:19 am
That’s okay Neil, one more comment on top of how many? I’m amazed every day by this. Just seems like the most unlikely place on earth for this — I guess you could call it a community — to develop, but here it is. I still haven’t had any episodes since that post, but you can bet I’ll tell y’all all about it when I do! I’m sure it will happen eventually; it seems people are either predisposed to this sort of thing, or they’re not.
June 30th, 2003 at 2:12 am
It’s good there’s a website like this one for people who have scotomas. The first time I had a scintillating scotoma I thought I was going blind. It started when I looked at a bright light, and the "afterimage" permanently burned into my visual field, wouldn’t go away. Then the bright spot grew and developed dancing zigzag lines, mostly very perfect black and white lines, but with some pretty rainbow colors here and there. Kind of a crystal effect, in the shape of an arc. I could not see a darn thing in this arc-shaped, ever increasing area of my left visual field. Finally, after about a half hour, when it wiped out (totally blurred) my vision on the left side, it suddenly vanished. Vision fine, no headache.
I took myself off to the opthamalogist and he had nothing good to say. You will have them again, probably. No, there is nothing that can be done. Well, don’t drive if one starts. He seemed especially unsympathetic since I get no headaches You’re lucky; come back if you get a headache with this.
This was 26 years ago. I still get them now and then. Sometimes months or years between attacks. A few months ago I had an awful series of them, actually woke me up, and one started up from inside the first. They were not all left or right sided, but all over the lot, some up, some down. I had been taking a medication (Equate) for pain and when I discontinued that, the new attacks stopped.Haven’t had one since.
Anyhow, for you newly afflicted, it’s annoying, but it won’t kill you. I never found anything that helps and the Equate is the only thing that ever made it worse. For me, just not looking at bright lights is the best prevention (not always avoidable, alas).
It’s interesting that my younger sister has this too. We think our father had it. My brother has suffered from migraines, no scotomas, since childhood….guess I am lucky.
Carolyn
July 1st, 2003 at 3:39 am
I had my first one just about an hour ago. It lasted under 10 minutes, but it still freaked me out. I did get a small headache afterward, but nothing compared to a migraine. I am 23 btw and my mom said she had it happen to her once when she was my age. It never happened again to her, I am hoping the same for me ~ Take Care All!
July 3rd, 2003 at 7:49 pm
Just got my neurologist’s diagnosis of s/s and after reading the various comments on this site have to agree wholeheartedly with his diagnosis. The one disturbing difference with my attacks is that after about 20 mins. of watching my zig zag lights dance about my vision, i start to feel very unwell and then loose conciousness for a few minutes. Vison was still affected for a period of time after regaining consciousness but gradually faded to "normal". No associated headache. Does anyone else suffer from blackouts during their s/s attacks?
July 3rd, 2003 at 11:07 pm
Holy mole!!! I’ve never heard of anybody passing out during an SS attack or even a migraine. I’d just be worried that it might be something more serious.
BTW I changed things on my website so e-mail addresses will no longer be shown. The place is crawling with spam-bots and I can’t beat ‘em off with a stick. So now, you’ll need to enter an address in case *I* need to contact you — you can put a fake one if you want to be anonymous — but either way it won’t be shown here. Just thought I should explain since most of you aren’t coming through the front page where I posted a note about it.
July 4th, 2003 at 3:54 am
I started with these at school (I’m now 42 yrs old) and they stopped when I was about 19. Unfortunately, I started again this January and have had probably 10 between then and now.
For the past 2 weeks I have had what seems like a small one in my left side of vision and it can only be seen when I have either both or just my left eye open. Its there day after day. It started as a grey blob but now it moves within itself just like a migraine aura.
All tests at the opticians and hospital have shown nothing wrong with my actual eyes. I am managing to live with it but I am aware of it nearly all the time.
Anyone else suffered this type of thing and if so what was the outcome?? Cheers!
July 4th, 2003 at 2:45 pm
Wow — I’m amazed to find this here! Never occurred to me to search for info on this, much less on Edith’s site.
I’ve only had one episode, maybe six months ago. Experienced that same troubling crystalline blind spot that many here have described, in my lower right-hand field of vision. Lasted somewhere between 20 minutes and an hour — I was a little too disturbed to keep accurate track of time, but I was awfully relieved when it subsided.
I grew up with severe allergies, so I can be acutely aware of small changes in my body. When this happened I thought about what, if anything, I’d changed recently in my diet, and the only thing I could pinpoint as a possible culprit was a sharp increase in my aspartame (aka "Nutrasweet”) intake. I rarely touch the stuff anyway, but for some forgotten reason I’d been on a diet soda jag around that time — I mean, drinking a *lot* of it — so I chalked up the anomaly to the aspartame. Haven’t touched the stuff since, and I haven’t had another incident, either.
Sure enough, just now after reading these entries I did a Google search on "scintillating scotoma" and "aspartame" and turned up these papers, both of which suggest that aspartame (as well as MSG, sulfites and red wine, chocolate, and sour cream) can trigger the phenomena:
http://www.icpro.org/Toronto2002/ConferenceMaterials/Smetana.pdf
http://www.psych.ohiou.edu/labs/articles/holroyd/in_press_papm.pdf
Now this of course is just one person’s anecdotal experience, and quite an unscientific one at that, but I just thought I’d pass it along in case this rings a bell for anyone else. And of course, a Google search on aspartame turns up dozens of web sites explaining why the stuff is evil, but that’s a subject for another time….
Jeff
July 4th, 2003 at 8:48 pm
Jeff!!!! You’re the very first person I actually know that’s set foot in here!
Oh yeah… I don’t "actually" know you, I only know you from the internet. But still!
Edith
July 4th, 2003 at 11:06 pm
…and I’d never have stumbled on the page if not for the "Recent Comments" box. Go Movable Type Go!
Seriously, I’m really quite relieved to know that I’m not the only one who has had this freaky thing happen to his eyeball. Not having health insurance disinclines one to run to the doctor for anything short of a compound fracture.
Jeff
July 6th, 2003 at 5:06 am
I had this happen for the first time ever a few weeks ago. My sight got very blurry (but only in the middel of my vision in my left eye). I rubbed my eye but my sight didnt clear up. I closed my eyes and WOW… I had a bright white line across the middle of my left eye. It had a prism like jagged top to it but the rest of it was just a straight line running like from side to side. I felt weak, nauses and hot. THe base of my head was numb. Lasted about 20 minutes. No headache with it. Scared me to DEATH!!
Would like to know if anyone eles has thoraic and/or cervical herniations. The ER doctor said it was a retnal migrain and is common for people with neck and upper back injuries. He said its caused from the large muscle, which runs from the thorasic region to the cervical region, going into spasm.
/shrug
He also, however, suggested taking an asprine a day from now on… /hummm
My doctor suggested a catscan and didnt like the implications of the ER doctor telling me to take an asprine a day from now on.
So, I am totally confused
Sammie
July 9th, 2003 at 4:14 am
Just finished having an ss which is about my third. This first couple was in an eye that had a lens replacement(cataract surgery) and were probably due to separation of the vitreous from the retina. Many floaters and swirly debris resulted that were gradually resorbed? or became less apparent.
This evening I was mowing the lawn out in bright sunlight and that seemed to precipitate the attack. Maybe ss is aggravated by caffeine as I had drunk a lot of tea and several colas(with aspartame and caffeine) in the am also. But the bright sunlight seemed to be the final precipitating cause. The ss seems to have resolved now (20-30 minute duration).
I am a 55 year old male, overweight, on Norvasc for hbp and have been near-sighted all my life.
Good luck to all you ss victims-it seems to be more scary than anything else in most cases. I usually take an aspirin when I have an attack-what the hell-aspirin helps most everything! Roger
July 9th, 2003 at 1:08 pm
I’ve gotten these less than 10 times since 1995. Generally starts as some triangular cells flashing colors and becoming a rather massive arc of the same. There actually seem to be little dividing lines between the triangles. Only once or twice have these disappeared on their own while I was awake. I lie down, pass out and wake up without the ss. It happened first walking the dog one night. Very difficult to negotiate with that thing from Star Trek flashing in most of my field of vision. I guess because I was up and out walking I stayed awake for the whole thing. I remember I drank a beer and took an aspirin and it went away after maybe a half hour. Then I got an all-consuming headache and finally went to sleep with that. Woke up in the morning feeling lucky.
I had my second one in a few days today, which is the reason I wound up at this site. I had less luck searching for this in previous years. Before these I hadn’t had any for maybe two years. Today’s and the one two days ago were both seemingly of a lesser nature than other times, they both lasted less than twenty minutes and disappeared quickly, having taken up only ten percent or so of my field of vision rather than the usual peak of well over 50 percent.
Don
July 10th, 2003 at 5:41 am
I should have mentioned I’m 52 years old, weigh 228 lbs and take Plendil and Bisoprolol for hypertension, which control bp to about 120/85. Without medication my blood pressure is around 190/140. There is some stress in my life at present, I am also exercizing some. The scotoma picture is pretty accurate except the cells seem more triangular to me, but they all dovetail to form the arc. At the end it kind of fills in and most of my vision is obscured. I definitely couldn’t drive or continue if it occurred at the wrong time.
Don
July 12th, 2003 at 9:41 pm
I am a neurologist and migraine researcher and I have studied this site (like neuroscientist S.D. Hall earlier this year) with great interest. It is interesting to note that among the many entrants to the site, there are at least two professional artists who, according to their reports, have used the scintillating scotoma as a source of artistic inspiration. In fact, the typical zigzags of the scintillating scotomas have acted as a main motif in the series of the "Mysterious Baths" drawings of the pre-surrealist painter, the Italian Giorgio de Chirico, founder of "metaphysical art". In his case, the scintillating scotoma as well as other symptoms of classical migraine have been used as the major source of his artistic inspiration, which we have analysed in some detail in a recently published book (up to now only available, unfortunately, in Italian: U. Nicola & K. Podoll, L’aura di Giorgio de Chirico, Arte emicranica e pittura metafisica, Mimesis, Milano, ISBN 88-8483-142-3). It may be reassuring to know that scintillating scotoma is not only a ‘manifestation of illness’, but in some individuals it can turn into a real source of spiritual experience.
July 17th, 2003 at 8:25 am
Today, I discovered this website with tons of useful comments about SS.
My first occurences were about 5 years ago, and I saw an eye doctor specializing in SS. From what I can remember, he confirmed what many of you have said that it is nothing to be concerned about, it lasts about 15-20 minutes- so don’t drive if you get it. When I asked him what triggers it, I believe he said the following: it is triggered by an rapid constriction or dilation (could be either) of one or several blood vessels feeding a part of the brain that controls vision.
Yesterday I had my first SS in probably 4 years, and this evening another one. What I noticed is that I had eaten foods that my body considers too greasy, and hence I had a rapid buildup of extreme gas in my chest area, on both occassions. When I felt the gas pain, the SS started. Yesterday’s SS lasted about 40 minutes, and this evening’s about 5-10 minutes. Yesterday’s gas pressure was more extreme and lasted much longer than today’s. I figure the gas pain may have caused some squeezing on my blood vessels, and perhaps triggered the SS. As I went through the internet today looking for answers, I began to remember that my SS from a few years ago seemed also to be related to gas pressure in the chest. (PS> To those that think I have heart problems, I say no. I had myself checked carefully when I had a few symptons that most would think was a heart attack, and it wasn’t - it really was gas pressure in the chest).
So, I think those that indicated they had just done severe exercise, or drank a lot of caffeine - it seems to me each of those activities can cause possibly a rapid change in blood pressure, which may be the trigger.
Myself, who has suffered gastric problems for years, will now pay even more attention to any greasy foods, including chocolates, to avoid my SS attacks.
NorthernPerson (nom de plume, not my real name)
July 17th, 2003 at 9:14 am
Klaus, I finally had a chance to look around the net for examples of Chirico’s work. I only found a few of the paintings from the Mysterious Baths series, but wow!! From what I saw, they’re not direct representations of what you’d see during an SS attack, but you can clearly see the jig-jaggy patterns incorporated in there. Check this out, y’all…
http://www.pasqualeart.com/Septebmer2001/set/dechirico50335c.html
I’m a singer-songwriter — never had the occasion to mention SS in a song as far as I can remember. But then a lot of the songs are a bit disjointed and surreal, and I guess I do tend to mention lights and stars and things a lot, for no particular reason. Hmmm…
July 19th, 2003 at 6:59 am
I’m 69 and had my first SS attack at 16 YOA. There have been too many — maybe 70 or 80 between 1952 and 2003.
I have no idea at all what triggers them. I’ve been told they’re related to migraine, but I have no headaches. Most of all, I was told not to worry about them.
One thing that is certain, after it ends I must get back home or to a safe place because I simply must sleep, — a very deep sleep for (if I’m lucky enough to not be awakened) many hours and I awaken very groggy and dopey. Anybody else experience post-SS sleepiness?
July 19th, 2003 at 12:25 pm
I had my first experience with SS today, July 20, 2003.
I am 35 and have excellent vision, so was really startled at onset.
I was lifting some heavy boxes and moving them from room to room and also looking through a window in a dark room out at a brightly lit yard.
Seems several folks here relate looking at bright light as a potential cause of onset as well as physical exertion.
Luckily I was able to contact a friend who is a doctor during the experience and she informed me about SS.
I was definitely reaching panic attack levels before getting in touch with my friend, not knowing if what I was experiencing was a permament alteration of my vision.
The episode lasted about 15 minutes and I experienced both the mild rippling almost hallucinogenic scintillation in the outer periphery of my right eye as well as a loss of my peripheral vision as the episode became more intense.
I felt a pressure in my head afterwards, much like others have described. Like a headache "trying to start" but never had an actual headache.
I also felt extremely jittery for a couple hours too. Not sure if thats from the panic of not knowing what was happening or something else that may accompany the experience.
Anyway, nice to see you all relating similar experiences! It’s comforting.
Brad
July 22nd, 2003 at 1:19 pm
Dear Edith (I assume it’s you, Edith Frost), I have read your entry where you have reported on the possible impact of your scintillating scotoma experiences on your creative work as a songwriter with great interest. I have up to now only been in contact with painters and have studied the tranformations of migraine experiences in the graphic arts, however, three of the artist with whom I came into contact in the course of my research are also writers and two of them stated that their migraines had also influenced their writing. The characterization of your song texts as being "a bit disjointed" and "surreal", referring to "lights" and "stars" and "things" (?), made me very curious to learn more about these aspects of your art. Giorgio de Chirico, to whom we have devoted a detailed study, is also the author of a novel "Hebdomeros" (1929), which is considered as a major text of the surrealist’s movement, but according to our interpretation major achievements of the narrative style in "Hebdomeros", which is also characterized by a "disjointed", "collage" like structure, may be related to the aura experience, which also breaks into the normal stream of every day life’s events just as the erratic flow of images and events dissolutes any coherent story in de Chirico’s said novel. If you were willing to enter in further discussion on this subject, I would appreciate that very much, the first step being that you send me some of your works (songtexts) which you consider as being, maybe, influenced by your SS experiences.
July 22nd, 2003 at 9:54 pm
Hi again Klaus — I’m pretty busy today but I’ll think about which songs might apply and let you know if I come up with something obvious. The connection would be tenuous at best! Lyrics are all reprinted here if you want to look at them.
July 23rd, 2003 at 9:02 pm
i have had, which i now have figuired out to be SS for 20 years. i use to have an attack (as i call it) once a month or so but then it stopped for about 10 years, but now its back. it usally starts with a zig-zag pattern starting in the corner in both eyes. i can allways tell when its about to happen, then i have one spot in the middle of both my eyes that i can see, but the zig-zag patterns dance aronund the corners of my eyes. last about 30 minutes and i sometimes have small headache after…having them about once every two or three days…i am so tired if it. my sisters has them too
July 24th, 2003 at 1:15 am
Hello fellow eye adventurers, I’m a 59 years old woman in excellent health with a great eye doctor! About a year ago, when s/s first started, I would meditate and sure enough it would subside in about 15-20 minutes. I’ve probably had about 5 of them in a year or so. My eye doctor diagnosed them as s/s (love the term), enjoyed my vivid description complete with strobe-like, zig-zag hand gestures, and suggested a way to resolve them rather than wait out the 15 minutes. He said s/s are triggered by a rapid drop in blood sugar and suggested eating an orange or a banana when a s/s comes on — and it works! (He concurred that s/s can be scary –espcially if in both eyes — since it simulates a stroke and can seem like you’ve gone blind, if only temporarily.) One time I had forgotten to eat breakfast, experienced a s/s, stopped at a deli for a banana and presto it was gone in 5 minutes. This morning, I’d had a boatload of raspberries in a shake so my blood sugar plunged and experienced another s/s. When I ate an orange, it was again gone in less than 5 minutes.
Now, if I don’t have food available, I just enjoy the light show and have no affects afterwards. I only see white sparkling lights, but will check for colors if I have another one. I also don’t have the sactoma, but instead can see through the scintillation as if looking at the world through sun-lit waves. I just had one this morning and had indeed worked out strenuously last night, but I’m still banking on the sugar trigger. Thanks, Edith, for this "serendipidous" net-community!
July 31st, 2003 at 1:26 am
I went to the neurologist this morning, because of flashing lights, that occur, mostly when it is night, or dark out….He tells me that it is Murphy’s something or another, had another patient that he saw for it also, but he didn’t know anything more. I had a PICA aneurys in 1997, that left me with double vision, that is reversable only by more surgery….don’t think so… Ann
August 1st, 2003 at 7:07 am
I have at least 1 s/s per day! It usually last 5-40 mins. 2 years ago, I had a s/s that lasted for a year ( very small s/s)and gradually faded away. Does anyone experience this?
August 4th, 2003 at 3:04 pm
This is facinating reading for me. I have had shimmering zig-zag episodes a few times a year for most of my adult life (I’m 44 now). Fortunately without any headaches. I just had one and did a quick web search and found this thread. Its very reassuring to know there are other people who get this.
August 7th, 2003 at 3:57 am
What a relief to find this site. I have had s/s for about 10 years on and off. I have not had an episode for a few years then bam last week they started again. When they first started, I called my Dr and he said to call my eye Dr and he said that was not his field. No-one told me what they were and they really scared me! I decided to reseach again and finally found some migrane sights that talked about s/s and then I searched on it and here you all are! Sorry, you all have this but it is nice to know I am not the only one and there is not something terribly wrong with me! Thanks for being here and I look forward to reading more.
August 11th, 2003 at 7:58 am
i have had these visual symptoms for 10 years.i figured they might be related to hypoglycemia {insulin dependent diabetic for 50 years}.there were no other factors which i could observe.i started avapro 75 mgms about 6 months ago and ihave not had one episode since.{thank god}.i am a psychiatrist and professor emertus of the university of western ontario {canada}.maybe this needs further investigation.
August 14th, 2003 at 10:36 pm
I’m not sure I suffer from scintillating scotomas but the symptoms seem close so for the sake of anyone else that might be out there dealing with the same thing… every now and then I see, generally in the peripheral areas of my vision, a (possibly couple) small glowing white dot(s) that meander about aimlessly for a second or two and then vanish. I’ve some reason to believe that this is tied to blood pressure as I recall when younger suddenly doing a few pushups on a whim and seeing lots of these suckers swirl about. Has anyone experienced anything similar?
Also, cheers to Edith for keeping this thread running.
August 15th, 2003 at 9:02 pm
Let me add my name to those who have experienced those colorful shimmering images called scintillating scotomas (S/S). I first noticed S/S about 10 years ago, and have experienced them many times since then. I average about 5-10 a year, and I a have three theories about their cause: (a) they occur following a sudden and marked change in light intensity (such as going outside on a bright day, and using a computer after exiting a dark room), (b) they occur about the same time that "floaters" appear (those little black specks we all have in our eyes on occasion), and (c) today I bent over at the waist for while when searching a lower shelf—upon straightening up a scotoma started within one minute! Has anyone else ‘connect’ their S/S with these three things? Or perhaps you have connected them with other things–please let me know. Anyway, my opthamologist doesn’t seem concerned. Finally, I have read S/S usually occur along with headaches, but I have never experienced a headache with a scotoma! It’s crazy!
August 16th, 2003 at 8:48 am
Yes, Joe, I can connect light intensity and the "bent over" action to s/s. Usually the ss will show up after looking at the monitior with different colors and intensities web pages. I found that eating shrimp/ lobsters will also trigger ss, anyone experienced this?
August 17th, 2003 at 2:50 am
I made my first posting here this Spring when I had SS several days in a row instead of about once a month as during the previous 15 years.
On looking up Acephex, an anti ulcer med I was taking, I found it occassionally triggered migrain. I gave up that drug and had an immediate decrease in SS, one every two weeks or so.
I then saw a neuro-opthamologist who diagnosed ocular migrain and started me on a baby asprin a day. I have had no SS in the subsequent several weeks.
August 17th, 2003 at 6:50 am
Larry, what is the dosage of the baby aspirin?
August 17th, 2003 at 9:39 am
i posted last month..i have been taking an aleve every morning…and i have not had one in almost a month…i don’t know if it is the trick but i am hoping…maybe stopping it befor it occurs??
August 18th, 2003 at 5:33 pm
Dear Ms Frost, I have corresponded earlier with you on the subject of migraine aura as a source of artistic inspiration. I am currently working on a project wherein I analyze the paintings and drawings of artists (both amateur and professional artists), representing migraine aura experiences. You have mentioned in one of the mails on your site that you have done a drawing of your scintillating scotomas. I would like to ask you whether you could send me a file or copy of your drawing, I would like to include your work into my ongoing study, if that would be o.k. for you.
August 18th, 2003 at 8:08 pm
I have tried to draw them but never succeeded as far as I can remember. Never even liked one well enough to keep it. There are a couple of others here who have though! Hairfish had left a URL to a drawing but I see it’s gone now. Maybe you can find it somewhere at hairfish.net? I might be able to put you in touch with other commenters if they left a usable address when they posted. (The addresses don’t show up here but I have them.)
August 21st, 2003 at 12:02 am
Hi all… I am so glad to have checked out this site. I had my first ss five years ago… It started off as a small smudge in the vision of my right eye, then moved inwards growing longer and broader and shimmering like hell!!! It moved along the side of my eye then disappeared after 25-30 minutes… Has been consistent for all these years, appearing once or twice per annum maximum… I am now 27 years old and the frequency of the ss’ have increased to one a week! Will they get more frequent? I had just started a strict diet regimen four weeks ago, which included breakfast, no lunch and a boiled food dinner… I have around 10-12 glasses of hot water daily… I wonder if these could be causes of the ss… Today’s was terrible… Started just as I left work in the evening and I was driving, so it was terrifying… It is such a relief to hear your versions of the same phenomena I am experiencing… I thought it might be an eye ulcer! Are the symptoms of an eye ulcer the same??? Thank you all for your contributions… I know I’ll be sleeping relatively happy tonight!!! After all, a classic migraine is way better than an eventually blinding eye ulcer…
By the way, Larry Beahan… You mention on April 11, 2003 03:13 PM that if the ss is in one eye, it’s quite a different thing altogether. I get it in just my right eye, is that worse???
August 21st, 2003 at 6:10 am
Just found this site by accident when looking for scotoma on the internet. Had my first SS yesterday (Thurs 21st Aug 03) and was freaked out. It lasted for about 20 mins and I had no idea what it was or what was causing it. Others around me had no idea, of course, what I was seeing. I work in a kids hospital, so I spoke to my boss, a Doctor, and she used the term scotoma. Naturally, I looked this up on the internet and found SS described. Wow, isn’t it reassuring to find that it really isn’t that unusual and you’re not going loopy! I’m seeing an ophthalmologist today just to check things out but I feel reassured already.
Cheryl.
August 23rd, 2003 at 8:55 pm
Very interesting to see the loooong list of others with this curious ‘event.’ I’d already talked about these with my wife and some acquaintances at work, discovering that they, too, have rare occurrences of this.
My own have always been of the scintillating type without the scotoma; sometimes semicircular and spreading out to the left, but often an ‘angle bracket’ (like the one on your computer keyboard at the ‘comma’ key). There have been a few instances where the event goes off to the right.
There was only one case where I -thought- that I ‘felt’ a little odd just before one started, but I cannot pinpoint a trigger mechanism. I doubt that it is stress as my life sytle is rather low key. I did wake up one night as a one of these ‘events’ was unfolding.
The frequency is rather low; one or two a year. I began noticing them about ten years ago but that doesn’t mean they haven’t been going on longer. It was fifteen years before I realized that I had "floaters" in my eyes that I had experienced their presence. The timing of an ‘event’ seems to be about 15 to 20 minutes.
In technical terms (I’m an electronics technician), it seems that the ‘wavy’ areas are much like a Lissajous pattern on an oscilloscope. This means that two of the brain’s (electrical) oscillations must be interacting (heterodyning) in the the occular cortex.
Anyway, I like the colors but find an event makes reading print rather unpleasant.
August 29th, 2003 at 5:43 am
Now my daughter, age 13, had her first. My father had them since age 22, usually just after relief of stress that lasted more than a few days. I’m age 43. About 10 years ago Dr Khwarg did a bunch of eye exams to rule out retinal problems, and came to the same conclusion that my father’s doctor had, decades ago: it’s related to migraine.
So, how to stop it quickly if necessary, such as when driving? Khwarg said strong coffee might help a little. I never tried that, but my daughter wanted to try. I said no, but mom said yes. Result was a day-long headache. Sorry…
August 29th, 2003 at 7:22 pm
Hi, I had ss just a few days ago, my very first one, I was really scared, the first one on that day ws around 11 am and I came home from work because of it…flashy lights on my right and felt a bit disoriented. The at 6 pm as soon as i had my dinner it started again but this time I stated convulsing I had a scissor (SP?) and had to call the ambulence, the CATSCAN, bloodwork, EEG has so far shown nothing.I still have the ss couple of times a day but I keep my fingers crossed so I dont get the convulsion again.
August 30th, 2003 at 6:31 am
My sixteen y/o son had his first episode today. It really scared us both. My son was out jet-skiing in the very bright sunlight (with no sunglasses) then came home in a rush and off to work. He said the wavy lines started when he came in to the house, but he did not say anything to me at the time. He drove to work and it got worse when he went into his dimly lit place of work. He called me in a panic. I rushed him to his eye doctor and was given a diagnosis of ocular migraine. His blood pressure has been high (for his age) on occasion. Two weeks ago I started limiting the amount of diet soda that he was allowed to consume, but he had a lot today. Thank you for this site. It is really giving me peace of mind.
September 10th, 2003 at 9:45 pm
wow. amazing anecdotal research occurring here!! i have had just a couple of these over the past few years, and learned that there is a family pattern - some family members have experienced this, some experience traditional migraine headaches. one sister has traced a pattern of her migraines to her monthly hormonal changes, and Mom says "Tis of no concern; my remedy was to get more rest!". my last event happened a couple days ago while driving. now that i’ve read these thoughtful observations, i’d guess that my last was triggered in part by a lingering look at the fogged over ball of a sun. i also took some acetominophen right away as i knew a headache could be coming (good advice roger). i felt pretty spent for a day or so.
nice to see that so many people are paying good attention to their health. an effort to increase our personal habits of wellness might make some difference � yeah all that stuff about exercise and nutrition and breathing and acts of kindness and smiling and laughing � they work! Oh yes, and a cup of tea too (decaf)!
September 13th, 2003 at 9:06 pm
I’ve had three episodes of scintillating scotoma. They are only in my left eye. My ophomologist said my eyes are in good shape and not to be concerned. Since then I’ve read that they can be a part of tmj symtoms. I do have tmj. My left jaw clicks, I get ear pain and buzzing in my ears. Apparently, people with tmj have also experienced scintillating scotoma’s. Does anyone else out there have tmj?
September 15th, 2003 at 12:08 am
Hi everyone. I just had my very first SS episode. I of course thought I was having an aneurism or something. The jagged line was in the shape of a C, and spread from lower left to upper right, leaving huge blind spots in its wake, as well as that feeling of missing one of my contact lens. Very scary. I then remembered that my brother/sister/mom all complained in the past about jagged lines associated with migraines, so I called my sister, who told me about SS. I have had plenty of migraines, but never the jagged line aura I had today. I believe it is genetic. Also, I am a 38 year old female, on absolutely no meds, not even birth control, normal weight, and coming off a 3 day relaxing weekend, so I don’t think stress was a factor.
I did, however, have red wine Saturday night (I usually stay away from it, it hates me), quite a bit of cheddar cheese last week (not normally in my diet in the quantities I had), and more tea than usual. So I think in combo, these things just aggravated whatever triggers the SS. I see many posts of folks worried about something they’ve done or meds they are taking. Maybe they are related. Maybe not. Sometimes these things just happen.
September 16th, 2003 at 12:50 am
Hi, I’m 47 and I’ve had this problem for over a year. It’s a small blind spot just to the right of my central vision and in the center of it is an electrical impulse that looks like a corkscrew spinning. It sounds like the descriptions I’ve read here of a scintillating scotoma, however mine doesn’t go away in 20 minutes, it’s constantly there. I’ve had MRI and another test done where they injected dye into my arm and looked in my eyes, but the doc doesn’t come up with anything conclusive. It’s bothersome enough to give me a headache when I read and many times I’ll get numbers wrong, ie an 8 is a 3. I have diabetes II and take medicine, but none of the doctors have mentioned that it could be drug related. I was just wondering if a scotoma that is related to a migrane might last for years instead of 20 minutes. I don’t have migrain headaches, however my mother and sister both suffer from them. Thanks for any information.
September 16th, 2003 at 8:15 pm
Karen,
I got the same ss as yours. It ususally come once every 2 years, and fade away in 1-2 yrs. I did all the test as you but can’t find out anything. The ss usually appears when I look at a "black/ white" or " high-contrast" interface. I’m wondering if this is related to a mini-stroke.
September 18th, 2003 at 5:36 pm
Janette
Thanks for sharing your story. It helps to know I’m not the only one seeing spots. My ss is definately most noticable when reading black/white material. Mini stroke???I sure hope not. I think the doc would have mentioned that after my MRI. I’ve had to adjust some things in my life, but that’s no problem as long as I know I’m not going to eventually go blind. From the sounds of most of these posts, the docs don’t recommend any type of therapy, so I guess I’ll just live with it for now. Karen
September 23rd, 2003 at 12:04 am
So interesting to stumble across this site - thank you, Edith, for allowing us to borrow your space.
I’m 45 and had full blown migraine headaches with SS all through my teens and twenties (they actually started when I was 8 years old). Nobody else in my family has them. I thought I outgrew its, since they went away in my 30s, but now all of a sudden they’re back. The weird thing though is that since they returned I only get the SS, no headache (I’m not complaining!). I wonder if it is tied to hormonal fluctuations. My SS is always in the right eye, whereas most people who get this seem to have it in their left eye. I don’t get any color, just the usual jagged half-circle with a big blind spot. If I look at someone’s face while I have the SS, I can only see about half of it; the rest is all blind spot and bright white zigzag lines that look like they are sizzling.
It’s not actually so bad just having the SS. I have to lie down for 20 minutes or so and it goes away. The scary part is that it can happen any time - I’ve had them while driving (I pulled right over), and once in the middle of a work presentation for 300 people. Not good!
I wonder how many others out there get just the SS and no headache. I feel very lucky!
-Janine
September 24th, 2003 at 9:57 am
G’day all, my name is Costa, I am 32 yo male living in Sydney, Australia, who recently started getting these ’scintillating’ sensations….once a month. No scotoma though.
I have a ‘3 strikes’ policy, meaning that if something happens 3 times, I will not ignore it.
SYMPTOMS - sudden shimmering light…pulsing, like a ‘force field’. On 2 occassions it didn’t change shape, size or position. It was basically on the peripheral edges of my vision, semi-circle. No haziness, no blind spot. Just a feeling of "what’s happening…did I walk into a magnetic force field?" I actually thought that I had received a pulse of radiation from my screen monitor… Everything lasted 15 mins…vision perfect afterwards.
On the 3rd occasion, it started as a "c" shape towards the left side of my vision. The "c" turned into a bigger "c" (thus: "C”) and started to gravitate towards the edges of my eyes, until it eventually evaporated (took 15 mins to do so).
SO WHAT DID I DO? Did a full blood test few weeks ago and everything was sweet. I’m fit and love my beach volleyball. Manly Beach in summer…
Opthamologist conducted tests (including anaesthetic eye drops, yellow dye, pupil dilation….felt like the LAND OF THE ZOMBIES in the waiting room of the clinic as we all had our eyes closed as the doc wandered in and asked us to ‘open our eyes’).
RESULT/DIAGNOSIS- The diagnosis was (shhh…) SILENT MIGRAINE (I don’t get headaches), which is harmless. BUT he also found increased pigmentation on the retina of my right eye. He initially said ‘could be serious’ so he brought out the big guns and conducted more hardcore examinations with these white bright lights that made my eyes water! He then said….”it’s harmless" BUT if 3 things happen, come and see me:
1) sudden and marked increase in "floaters";
2) "dark curtain" if I wake up one day (see him urgently on that one);
3) bright shiny lights that linger for days.
He wants to see me next year to check my retina again.
TRIGGERS? ..that’s always going to be tricky, but…
1) I noticed on 2 occasions I came from outdoor brightness to inside a room that was darker.
2) I can’t say STRESS is a factor (the last one happened during a 2wk vacation with my partner in Fiji…..so I CANNOT accept "STRESS" on that one…maybe hormonal changes though :)
3) I’ve had a lot more tea,coffee and coke than I am used to over the last 2 mnths…(sleepless nights in Fiji).
4) started doing push-ups every night for the last few months too..(can you guess my motivation).
By the sounds of these posts, these sensations stick around for years, and it’s ‘pot luck’ when they happen. As long as they aren’t serious, I can accept it as just another dimension to my quirky disposition…
COSTA.
September 30th, 2003 at 11:34 pm
Took me awhile to find out what this phenomenom was. In my case, I never had them until after my open heart surgery. I know when they are starting but have not determined what triggers them. Different doctors have different explanations. There is usually a slight headache but nothing serious. For me, I believe the surgery and subsequent use of blood thinners has something to do with it.
I have enjoyed reading the posts of others. It seems that there must be different reasons for different people.
One question, a little off topic, Does anyone ever experience the feeling of something hitting or flying into the back of your head