Comments on: Scintillating scotoma (Part 2)

By: edith

edith — Sun, 13 Jun 2004 03:28:37 +0000

I'm moving the thread again due to having too many comments on one post... please go here to continue. :-)

By: Gayuti

Gayuti — Fri, 11 Jun 2004 17:51:40 +0000

Hi, thanks for this space so that I am able to share things with you. I had my one and only (so far) ss 4 months back and the weird thing is (I have not read anyone mention it here), I immediately had seizers (with delusion, memory loss, fatigue) following the second ss, the first one went away soon. I’ve had both forms of CTScan but nothing besides a vasodialation rupture. MRI was negetive, I’m still scared of what this could be, I did not mind the ss as it went away within an hour but both together on after the next, getting another of that gives me the creeps. If you know anything about this please post or write me an email, I would really appreciate it.
Much thanks, Gayuti.

By: Robin

Robin — Wed, 09 Jun 2004 13:11:39 +0000

I’m so relieved to find that I’m not the only one with the symptoms of ss. Some of the descriptions fit mine to a "T". It’s interesting that many of us are around 40.(I’m 43). I had my first episode a few weeks ago, but after my ss faded out, I had some other strange symptoms: I couldn’t read or find the right words to speak for about 20 minutes. I tried reading out loud, and I couldn’t do it - my brain wouldn’t let my mouth form the words. I sounded like a first-grader. When I tried to speak, simple words wouldn’t come. It was so scary. I thought I was having a stroke, but am pretty sure it’s a painless migraine. I’m seeing a neurologist soon.

By: chris

chris — Wed, 09 Jun 2004 01:52:03 +0000

My husband has these. he did a lot of Karate as a teenager and was also a bouncer. Some dr.s think he might have "Boxer" migraines, or a partially detached retina from being hit in the head too much, but the S/s has more of the right symptoms
Does anyone else with the ss, have head injuries?

By: Lynda Miller

Lynda Miller — Tue, 08 Jun 2004 07:33:35 +0000

I just read all the posts here tonight, and I thought I would share my aura as well!! :-) I have had migraines for probably most of my adult life..and I am now 46. I experienced my first aura 4 1/2 years ago, and quite frankly, it scared the s^*& out of me!!! It started in my distant field of vision…and gradually over the course of about a half hour became what I describe as "kaleidescope" vision. It consisted of geometric shapes that danced in my peripheral vision.I thought..”Oh my GOD!!! Do I have a BRAIN TUMOR???? I had NEVER experienced this before..and only did again a few times after that. I haven’t had any since then. So now, I call myself..”The Girl With Kaleidaescope Eyes!!!" LOL……

By: shaf cangil

shaf cangil — Mon, 07 Jun 2004 08:29:20 +0000

Hi all.
Interesting stuff here and really useful I must congratulate Edith Frost for a very informative site.
My episode began after a real hard 7 months developing software for my dyslexic kid on the pc.
I have had 2 attacks the first of which was very frightening and much more sever that the current one I had on a family picnic yesterday. In the first I lost half my left field of vision and the growing flashing wriggling 'lightening' prevented me seeing my kids faces which was terrible. They even persisted when my eyes were closed and moved when I tried to look at them whcih made me think these werer no floaters or eye issue but something different.
Apparently attacks can be linked to chocolate caffine and red meat all of which i endulged in a plenty yesterday in the second attack.
However I am interested to know what other people have in the way of body problems for example I have Sjogrens Syndrom which is where the white blood cells in the body attack the glands that produce oils for lubrication. This is because I found links with my kids Dyslexia and Psoriasis and my husbands Ankylosing spondilitus which the docs never linked for me. At least I am prepared for what may occur to my kids, I would like to know what possible conditions may be linked to this as its a brain isssue and not one of sight.
What does everyone else think?
Oh yes and if there is black spots that may be a detached retina so you should get to a specialist for the poeple that have mentioned this.
I am looking forwards to enlightening my doctor tomorrow on what I have ..

By: edith

edith — Sat, 05 Jun 2004 17:09:44 +0000

Oh I didn’t draw that image Dr. P, I stole it off the web somewhere like a thief in the night. I checked out y’all’s whole site yesterday, the artwork section is great! And the animations, WOWWWWW. I didn’t get an attack by viewing them but it sure gave me an uneasy feeling, like "oh Edith you’re beggin’ for it now…" ha ha.

Of course I *was* kidding about the "my work is done here" comment; most of my communication with others is done through a series of lame jokes. :-) So don’t worry, this page (or site-section, now!) isn’t going anywhere. It requires no additional work on my part, and indeed it came to being on its own and developed a life of its own over the last few years. If it dies it’ll be due to natural causes. And I’ll definitely leave the posts archived here as long as I’m able to.

That said, I probably need to start a new SS thread soon, since we already have over 100 comments on this post. The server gets unhappy when it tries to cough up a supersize entry like this, it tends to give out Server 500 or "connection refused" errors when the traffic’s too heavy or some such. I still don’t know a better solution than to just close comments and start a new thread, but I try to leave navigational breadcrumbs whenever I do that. It’s not the ideal setup for what we’re doing here, but it’s better than nothing.

By: Klaus Podoll MD

Klaus Podoll MD — Sat, 05 Jun 2004 14:55:23 +0000

Dear Ms Frost, thank you for your supportive comments. The "Migraine Aura" website (migraine-aura.org) was created by Markus Dahlem, a migraine researcher from Magdeburg in Germany, and to the best of my knowledge it’s the first ‘medical’ website devoted specifically to migraine aura or SS. Of course, your website, and some others out there in the internet, have been pioneering in this field, and so I strongly hope that you were just kidding when you said your work is done now… As the result of a lucky cooperation, we’ve joined our efforts for a better understanding of migraine aura phenomena by implementing, on the forum of the "migraine-aura.org" website, a special section dealing with "Migraine Art", for which I sign responsible. Among other features, this part of the website presents a selection of webpages devoted to single artists and their migraine related works. The word "artist" is here understood in the widest possible sense, i.e. in principle anyone who has tried to depict / represent / transform a migraine experience in a piece of graphical art (a drawing, a painting, etc.) would qualify for being considered for inclusion. In fact, it would be a great pleasure for me if I could include a page … about YOU, I would strongly appreciate if I could include some of your descriptions of your own auras and a link to your site, so I would like to ask you whether you have any image which you could send me for the said purpose (… the zigzags at the top of this site, is this a depiction of YOUR SS ? …) Thanks again for your support, Klaus Podoll MD

By: edith

edith — Fri, 04 Jun 2004 16:43:11 +0000

"migraine-aura.org"?!? Omigosh, I never thought I'd see the day. Thank you Dr. Podoll. I remember you very well from before, and I was always hoping you'd come back with something like this.

So... that's it, I think my work is done here. ;-)

I'm kidding. Seriously now: I really don't want your comment to get buried in another sea of comments! The next time I get an SS attack I think I'll start a new thread and feature your link in the body of the post so people won't miss it. It doesn't matter anymore how many posts I make on this topic, since I have a whole category now for SS.

The funniest part of your site is this:
Etiology (the cause of a disease)
[PENDING]

...ha ha. The suspense is killing me! ;-) When that page gets filled in, that will be HUGE news for all of us.

Oh yeah, I also forgot to mention before that y'all can now subscribe to get notifications whenever a new comment is posted on this thread. You have to post a comment to subscribe; I haven't figured out a way to let people JUST subscribe without saying anything. But it is an improvement. I know I keep changing things and confusing people by moving stuff around, but hopefully the changes are for the better.

Again, thank you Dr. Podoll for sending the link over, it's quite amazing.

By: Klaus Podoll MD

Klaus Podoll MD — Fri, 04 Jun 2004 14:34:35 +0000

Dear Ms Frost, I am a migraine researcher from the University in Aachen, Germany, and I am currently constructing a website devoted to Migraine Art, i.e. the paintings and drawings whereby migraine sufferers express the many signs, symptoms and experiences related to the migraine attacks and the various forms of migraine aura. The URL is: http://www.migraine-aura.org/EN/Migraine_Art.html
Migraine sufferers who have depicted aspects of the migraine experience are welcome to contribute to the images displayed on this new website. Dr. Klaus Podoll, University Clinic, Aachen

By: Steve W.

Steve W. — Wed, 02 Jun 2004 22:11:50 +0000

Thank you so much for making this information available. I've been to a few doctors and opthalmologists and they all called it "phenomenon"! I didn't even know what it was called until now or that it was associated with migraines. I learned more here than I did in all my doctor visits combined!

I've had SS's 3 times in the last 30 years, roughly 10 years apart.

The first time was when I had a very bad skateboard accident in the 70's. I severely bashed my head and as I was lying on the ground waiting for the ambulance, I noticed that I couldn't see the faces of the people who were looking down at me. I told the emergency room doctor about it and he was almost totally uninterested and shrugged it off since the SS had passed.

The second time was in the 80's and I believe was the result of an opthalmologist's exam. I was there for other eye problems, including floaters. He dilated my pupils, said everything was fine, and sent me home. On the way home, the second SS happened. My eyes felt very tired from the dilation and were very sensitive to light as a result. I believe that was the cause.

The third time was just last week, the first time in the age of computers and internet, so I decided to look it up. This time, there was no clear cause that I know of with the possible exception of job stress and a bad cold.

My scintillating scotomas are similar to the ones everyone describes here. They start with a point of light or a spark, progress to a blind spot, then to a sawtooth "C" shape that grows bigger and flutters with color and black lines, and is over in about 30 minutes. I can see inside the "C". Rather than growing bigger, a more accurate description for me is that it is moving closer and closer and that it eventually passes through my eye and out the back.

The last one is the only time that I ever had a slight headache afterwards. I hope that doesn't mean an upcoming migraine problem.

I'm relieved to know that it's a common problem...but it's still unnerving when it happens.

By: edith

edith — Wed, 26 May 2004 20:15:49 +0000

Hey everyone… very glad y’all made it over to the new URL. Just fyi, we have a new membership system in place — if you join as a site member, the main benefit (so far!) is that your comments will be posted immediately, without being moderated. Of course if you don’t mind waiting for me to approve ‘em, that’s cool too! Anyone can post freely, but comments by non-members will be moderated.

BTW I’ve never gotten a spammy or hateful comment on *this* thread! But unfortunately I can’t turn off moderation on a post-by-post basis, and I really need that capability for the rest of the site.

Oh, another thing you probably noticed is my new avatar? That’s another silly perk you get when you join. :-)

By: MsCarolyn

MsCarolyn — Wed, 26 May 2004 19:42:42 +0000

Hi guys, I’m back. Jen, my neuro says these things come in clusters so you can go months or for the really fortunate years between them. Just wondering does anyone notice other strange neurological symptoms in connection with their s/s. Like dizziness, tingling in fingers, sudden feeling of anxiety for no reason, feel like your arms are heavy and can’t seem to concentrate? Last night I felt as if, I’d had 47 cups of coffee, absolutely wired, this morning I woke up and it was like a million tiny black dots in the vision of my left eye, kinda like looking through a fine screen, right eye was fine. It cleared up. When I got to work about 8am, there came the s/s, a whopper but only a mild headache afterwards. We’re obviously dealing with a migraine type occurence, I almost think I’d rather have a devastating headache than all this really weird stuff. Just really hard to comprehend I guess. Everyone can understand a headache and not have much concern over them. Oh well, I ramble.

Good Luck to all,
Carolyn

By: jen

jen — Wed, 26 May 2004 16:00:52 +0000

well , it happened again. On Monday i had another ss , this time in my right eye. Normal time frame of 20 mins or so.Also it was accompanied by head pain on the left side. I layed down for a while and got up in about a half an hour. When i woke up I had another one still in my right eye. Tuesday came and went with no event. Now it is Wednesday and i got another one, back in my left eye like usual. Just thaught i would share. I have been free of ss for almost a whole month untill the last few days.This is sooooo frustrating.:(

By: Steve

Steve — Fri, 21 May 2004 23:31:41 +0000

Am a bodybuilder - Experimented with SMALL amounts of steroids.(Sustanon-basically testosterone).
Anyway injected .125ml(1/2cc)aweek for 4 weeks.
After this I had a scillilation.
Have put it down to a change in the bodys natural hormone (Mine would be carryng approx 300 times that of the average man.)and a combination of high blood pressure - mine was around 154/94 at the time.nomal now..This is my conclusion.
Never had another one since...
Just throwing this in the mix..

By: edith

edith — Mon, 17 May 2004 08:14:58 +0000

Noah, I had to repost your comment, sorry about the funky date and time — not sure how to change that. It didn’t make it over with the migration of the rest of the database, dunno why.

By: Noah

Noah — Mon, 17 May 2004 08:08:01 +0000

I am 18 years old and have been experiencing S/S daily for about two weeks. I remember experiencing them every once in awhile throughout my early years, but they went away for awhile. I am scared that I am now getting them every day, although there is a bizarre catch to them… They only come if I look at something that is white in color. The computer screen, white cars, clouds, anything white. If I look at something black, it goes away instantly, but comes back if I look at something white again. Anyone ever experience that?

By: Ann

Ann — Tue, 11 May 2004 15:52:53 +0000

DIAMOND SHAPED…DOES ANYONE HAVE S/S THAT IS DIAMOND LIKE IN SHAPE??? I EXPERIENCED AN EPISODE THE OTHER DAY…MY FIRST…THAT INVOLVED THE RIGHT HALF OF MY RIGHT EYE. LASTED ABOUT 7 MINUTES…WAS GEOMETRIC…LIKE IT HAD BEEN CUT OUT WITH PINKING SHEARS ON ALL 4 OUTER EDGES. VERY BEAUTIFUL..ALMOST RAINBOW LIKE, EXCEPT THAT THE COLORS WERE VERY DISTINCT AND DID NOT MERGE OR BLEND INTO ONE ANOTHER. THEY WERE RED, GREEN, YELLOW, BLUE. I COULD SEE THROUGH THE MIDDLE OF THE DIAMOND…SO IT WAS AN OUTLINE OF THE DIAMOND SHAPE.

By: J. Lesley

J. Lesley — Mon, 03 May 2004 07:53:11 +0000

I’ve been experiencing jagged lines of colored lights and sometimes blurred vision for the past week . . . sometimes several times a day . . . most comments by others seem to relate the left eye — mine is always the right eye. Yesterday I had a frightening experience while driving with my three children and sister in the car. I yawned wholeheartedly and all of a sudden the lights were distracting me to the point I warned my sister something is wrong with my vision . . . it seemed like I was seeing double and when I closed one eye I could see fine. I was about to pull over; I was terrified that something major was about to happen, but it was over seconds later. It scarred me enough to search the web today. I’m thankful I did . . . it is somewhat comforting to read all the comments. One thing that concerns me is I do not have a history of migranes and reading briefly through some of the suggested links, that without a history of migranes, could possibly indicate something neurologic? I consider myself a fairly healthly 42 year old woman — although I’ve been nursing a stiff neck/muscle pain for about two weeks . . . my husbands initial thought was the driving incident was possibly related to a muscle spasm?

By: Jen

Jen — Fri, 30 Apr 2004 09:27:25 +0000

i commented earlier, but didn't mention that recently i figured out that i am hypoglycemic and have been on a diet with little or no processed sugar for aprox 3 weeks and will happily say no ss. And for those of you wondering about aspertame, I can honestly say every single time I have ingested the stuff, weather in soda, candy or as a sweetner in a packet I have deffinatly gotton an ss right after (within a half an hour). I am constantly reading the lables on everything!

did you know it is in childrens vitamins too. Read the lables on everything . Look for msg too, also a culprate(for me anyway).