Comments on: Scintillating scotoma (Part 3)

By: edith

edith — Fri, 17 Aug 2007 01:10:16 +0000

Oops! I sent out the wrong URL for the comments feed for the new thread. This oughta work.

By: edith

edith — Fri, 17 Aug 2007 01:03:58 +0000

Hey folks! Sorry to do this again, but I'm closing comments on this post. We're approaching the 200 mark and it's becoming quite tedious for my blogging software. But never fear, I've already started a new one thread over here.

Please note that if you've subscribed via e-mail to receive comment updates on this post, and you want to re-sub, you'll have to post a comment to the new thread. Sorry 'bout that. HOWEVER you can avoid all that by subscribing to our shiny new RSS comments feed!! (Using Google Reader or Bloglines for example.)

I wanna give my heartfelt thanks to all the people who've commented here, for being so great, sharing your stories and helping each other out with advice when needed. Whenever somebody thanks me for keeping this thing going, you best believe they're really thanking all of y'all even more than me! I usually like to keep my trap shut and let the smart people do the talkin'. (grin)

By: Jim

Jim — Tue, 14 Aug 2007 14:53:56 +0000

I suspect chocolate enough that I completely avoid it, also I suspect the caffeine in the chocolate as the causing agent. It could be the same in diet soda instead of aspertame.

Low Sugar:
I can have a complete 15 minute SS attack everyday just like clock work or I can avoid it all together.

If I eat breakfast at 6am and have lunch at noon, by 11:30 my eyes will be light sensitive and strange and if I just wait till noon to eat, I will have a full blown SS attack by noon and it will continue for 15-20 min eventho I eat a good lunch.

If I eat at about 11:30 when things look strange I will not have the SS attack.

By: Scott

Scott — Mon, 13 Aug 2007 22:11:08 +0000

Hi, Theresa,

Per Aspertame: There has been ongoing controversy about this stuff since the 1970’s and even before. In some tests, it showed neuro-toxicity in lab animals…..and the FDA refused approval of it for a long time. Without evoking TOO much political controversy here, when the Reagan Administration took over in 1981, Aspartame was fast-tracked onto the market by the newly appointed FDA chief, who only served a short period of time before being given a very lucrative job at Searle Pharmaceutical…..the makers of Aspartame. Food for thought, there…..although certainly not unusual in Politics, regardless of who’s running the show at a given moment.

At any rate, the controversy continues over two decades later. Some highly reputable medical researchers and doctors still believe it to be unsafe, at least for certain individuals. Beware of much of what you read, though, in terms of anti-aspertame sites—-many are seemingly run by out and out quack practicioners with VERY questionable notions and medical credentials. An hour or two of Googling should give you more information……good, bad, and ugly…..than you’ll ever know what to do with.

Bottom line is that it SEEMS that as long as it’s been on the market and as heavily as it’s been consumed……it even shows up in things like toothpaste…….if it caused serious neurological or brain damage, we’d largely be a nation of brain-dead Zombies by now. Errrrrrr, wait…..forget that line of reasoning, LOL, now that I consider it……but seriously, while it’s nothing Mother Nature ever conceived of, it APPEARS largely harmless to the majority of people.
But….there is still SOME evidence to show that it may affect certain sensitive people, or people who have a hereditary problem where they lack a key enzyme needed to properly metablolize this. It MAY be a contributing factor to your scotoma’s……but in all probability, it isn’t. People have had this problem for thousands of years before NutriSweet hit the markets in the 1980’s. You could kick the Diet Coke habit for a few months and see what happens, although again, Aspartame is hidden in all sorts of products you wouldn’t expect it to be…..but given the fact that these scotoma’s might go into remission on their own for literally a decade at a time….you really would have no way of knowing for certain if eliminating Aspartame from your diet was the key if you don’t have any more of these for a long, long time. I don’t drink the stuff mostly because I think it tastes like brake fluid, and I still have these bizarre migraines……so it’s not the cause with me at least.
Good luck, and Google will provide you with all sorts of conflicting information …….but unfortunately, few real answers to this.
Regards,
Scott

By: Theresa Austing

Theresa Austing — Mon, 13 Aug 2007 17:21:00 +0000

I have been having these same eye problems for a couple years now. I was surfing the web the other day about migrains and stumbled upon a site that talks about artificial sweetner. It especially talked about aspertaime. The stuff thats in diet coke. Thats what I drink. I was floored. Anybody here ever hear bad stuff about it?

Thanks

Theresa

By: Cammi

Cammi — Thu, 09 Aug 2007 14:10:49 +0000

Hi there. I just googled some symptoms I just had while at work and your site popped up. I was almost relieved to know that someone else has the same semi-circle of flashing zig zagged lights. I Web-Md’d the symptoms and it had me concerned that I might have a more serious condition. I also don’t have any pain afterward, so it’s hard to understand that this is a migraine (?). Thanks again for posting this!

By: April

April — Fri, 03 Aug 2007 18:49:43 +0000

I think I had one when I was 15. I’ve had (all my life) an occasional muscle spasem that occurs in my back causing the muscles to tighten and pull from the front of my ribs around my side toward my spine. Let me tell ya, it HURTS! It feels like I’m being stabbed in my ribs. Each time I take a breath it pulls again so I breath shallow and relax until it goes away.
I’ve also had issues with occasional Tinnitus which is annoying but never lasts long.
Well, one day I was lying in bed (typical teenage late riser) and as I was about to sit up I felt as if a dagger was plunged into my side. At that same instance I heard the high pitch ring in my ear. I fell back onto the bed…staying there a couple of mins which felt like forever.
I tried to get up & make my way downstairs to my mother for help but just couldn’t do it. I ended up on her bed in pain. As I laid there with my eyes closed I could see what seemed to be a white flash in my eyes. As the flash grew larger (creating a donut-like circle) the tinnitus became LOUDER and the pain seemed to last longer. I made sure to look at the clock before I had laid down again so I’d know how long this lasted.
As soon as the "light" completed its circle the flash was gone, the ringing faded, and the pain stopped. Needless to say I was freaked. I looked back at the clock and noted that 10 mins had passed.
I immediately told my mother and we ended up at the hospital for an EGG. Of course, they found nothing and left feeling like a nut job.

Well that’s my experience, it hasn’t happened since and I hope it never does. Take care.

By: Zach Nyquist

Zach Nyquist — Fri, 20 Jul 2007 08:21:51 +0000

Hi Edith, I was had a freaky moment yesterday. When I was about 12 years old (I’m 16 now) I used to have the dreamy states of a migraine, but never had any other symptoms or a headache. I stopped having the dreamy states after a few years, and then my Freshman year in high school I started having an ocular migraine. I thought I was DYING! Lol, it was scary, because my mom had always talked about her migraines, but I didn’t know what they were like. (Keep in mind I was at school and had to wait 45 minutes before getting picked up, lol.). To get to the point of what happened yesterday……… I was home with family, and all of a sudden, I had the weird Deja Vu thing like you had mentioned earlier. It was one right after another, all in the matter of 10 minutes or so. I came in the den, and saw something familiar, I looked at the screen, I saw something familiar, my mom said something and that sounded familiar. And the creepiest of all was when I went and sat down and watched T.V. I was able to predict the next two commercials that came on, right after another. And then the show Rescue Me came on, and I never have seen that show before, I was able to know what the people were going to say like 3 to 5 seconds before they would say it. And these weren’t just everyday sentences, they were pretty complicated. Anyway, thats getting a little too far off of the topic, I want to know more about your deja vu part of it. As I said, I had about 5 in 10 minutes and then after that, I had the Dreamy state for about 45 minutes. It also caused me to have a panic attack, lol. I was quite scared.

Please get back to me with some information. best wishes, Zach. eMail = shortbusguy409@yahoo.com

By: Caroline

Caroline — Thu, 21 Jun 2007 20:08:04 +0000

Hi Edith and everyone,
First of all I would like to say thanks so much for these pages.
I am in the UK and here we call these episodes Ocular migraines.
I have been able to find out so much because of Edith’s site and it has helped so much.
I am a 53 yr old female and have had an isolated episode about 3 times since I was 40 yrs old and put them down to over doing it and anxiety but then in April I had 10 episodes in 2 weeks no explanation only weird weather here, bright sunshine and rushing around and a touch of sinus, these pages had helped me then very much, then I had a break for about 3 weeks but the first bright day I was treated to the blind spot, then the zig zags and then a lovely display of circulating colours, no headache as such just an underlying one.
I have lost my speech for about 5 minutes twice during these episodes which is even more alarming but have put this down to severe panic.
Needless to say I have visiited my ophthalmologist and all was fine and then my doctor, who was quite alarmed and had blood tests done, which gave no clue except for a high cholesterol which is really un related.(I hope) I am now waiting for an appointment with a neurologist which seems to be the same road travelled as others.
I have been okay for about 2 weeks now but am worried about the next one too.
My doctor seemed to think it was mini strokes but I do disagree as am otherwise healthy and they don’t seem to fit in with the symptoms at all except for the speech loss.
My brother has been very ill with sinus pain since April too, which was first being treated as migraine but he doesn’t get the vision problems but it was so painful he had to go to Emergency where they gave him morphine, he is waiting for an apointment too with a neurologist, strange coincidence.
I am trying to identify certain triggers and thought sunlight was one until I realised I had on episode in an evening while reading so am at a loss. I had one on holiday in the lake discrict in the UK simply by taking a photo of a mountain, my eye sort of pulled and it set off the blind spot then zig zags, it was an hours trek back to the car, which was an awful experience as realised a should have sat under a shady tree and waited for my vison to clear instead of putting myself through that!
Keeping calm and quiet has certainly eased the symptoms but sometimes easier said then done.
Thanks everyone and Edith

By: E S Jenkins

E S Jenkins — Sat, 16 Jun 2007 19:25:36 +0000

Hi Edith,
I am a 52 year old male in otherwise good health.
I have been having these same symptoms, beginning 10 months ago, after being exposed to carbon monoxide gas. During the several months that I was first exposed to the gas, I began to have these symptoms. The Neurologist (MRI -Brain) and Heart Doctor (Stress Test and ultra-sound of arteries in neck), could not explain it. After a friend suggested looking into the possibility of carbon monoxide poisoning, I was able to determine the source of the exposure and stop it, but the symptoms continued. My symptoms would begin after being in a large grocery store with lots of fluorescent lights, or after reading the morning newspaper, or when I went into a certain warehouse with high output 400 W UV lights. When reading, I would notice I was having trouble reading the small print. I would often experience an unusual feeling (not a headache), behind my eyebrows. Soon, everything would appear much brighter, as if it were washed in light. When I closed my eyes, I would notice jagged forms in my left eye, when there used to be none. The episodes would last about 20 minutes, (They lasted longer when I was still being exposed to the carbon monoxide gas). I have had about about 10 or twelve episodes so far. Dark glasses, a darkened place to sit, and closing my eyes have helped me get through an episode. After having gone to several specialists, who could not identify it, I was finally diagnosed by an Opthamalogist as having Scintillating Scotoma. I, too, thought that I was experiencing the beginning of a life ending event, but fortunately, the frequency is slowing down. It has been over one month since my last episode. I think that they are going away. I am feeling better at least knowing what my condition is. I was on blood thinner and alzheimer's meds at one point, as I had some memory loss due to the gas. I am no longer on any meds. I am glad to have found your web site. Thanks! E S Jenkins

By: bsdwork

bsdwork — Fri, 25 May 2007 21:33:45 +0000

For long the initial changes during a migraine attack have been shown to occur in the occipital cortex. In the recent years, the understanding of migraine has advanced with the availability of functional neuroimaging. A possible role of brainstem structures in the initiation of migraine attacks has been proposed based on functional magnetic resonance imaging blood oxygenation level-dependent signals. Activation of brainstem structures preceded activation of occipital cortex. Our understanding of cortical spreading depression is also advancing. Using multiwavelength optical intrinsic imaging, cortical spreading depression has been shown to have a triphasic response in rats

By: PSPeterson

PSPeterson — Fri, 18 May 2007 18:31:27 +0000

Yes, thank you for the site and the ability to communicate with others concerning the SS phenomenon. I have had one previous (6 months ago)to this past Wednesday which included the zig-zag wavy colors…but this week just entering a dark restaurant from a cloudy outdoors began my greyish/greenish/purpleish spot seemingly like wearing a cloudy contact;covering my left eye and occassionally it appears with a an open center. It has not disappeared. I have read many, many posts and the aura seems to last 10-30 minutes for most experiencing the SS. I went to the eye doctor and he indicated 20/20 vision with my contacts and the blurry aura. I have taken aspirin but it will not disappear. I drink coffee, white wine, eat some chocolate, had a few too many fried foods last week, traveled by air, stressed out over a few things (like flying) had too little sleep one night, but otherwise lead a somewhat healthy life at home, exercise, etc. So my attack could be related to a number of or combination of events. What I don’t understand is why it has lasted since dinnertime on Wednesday? Today is Friday. Has anyone else experienced long-term auras?
Best to all! Thank you Edith!

By: Michael

Michael — Sat, 05 May 2007 03:51:53 +0000

When I told my doctor about what I was seeing, he said" Well, just be sure you’re taking your baby aspirin each day."
My last episode left me standing in a grocery store aisle for about 15 minutes. I couldn’t see well enough to move. I would look at people’e eyes and their chins would disappear, Then the stain-glass crescent began. Thank you for putting a name to this… inconvenience.

By: Ken Spiker

Ken Spiker — Mon, 30 Apr 2007 21:02:45 +0000

Thanx for the web site. I’ve had these thingys for about 25 years off and on, about one a year or so, but recently I’ve had several in the space of a couple of weeks. I was despairing of finding out what they were without a doctor visit and referral to a neurologist or an opthamologist. Generally they happen infrequently and I haven’t felt the need to make a special visit to the doctor. Okay, the last post here before mine was 2004, but I had to write something because it is a relief to find out that other people actually have the same symptom and that there’s a name for it.

I don’t get headaches with these things, I don’t get migranes any more. I seem to associate this with strong coffee, which I’ve been drinking a lot of recently. But I don’t know.

Thank you!

By: Jim Bean

Jim Bean — Tue, 03 Apr 2007 01:23:30 +0000

Hello Richard,

Your u tube is realistic except that in your representation there is vision inside the SS circle while I see nothing inside the circle, just white.

By: Media_Valet

Media_Valet — Sun, 01 Apr 2007 02:12:06 +0000

As said many times before at this forum, thank God, (and Edith), for this site.
I had my third SS today.
I am a 47 years old, and had my first SS Labor Day last year, (so I'm a newbie), and my second was on Martin Luther King Day this year. Today is my first non holiday.
Thanks to this site, I didn't panic today, and actually just got on with what I was doing, working on the computer, which was tricky because I had to move my gaze around in order to see. Very trippy.
I am actually seeing a neurologist who calls SS occipital seizures, and is giving me a full array of tests so as to not take any chances.
I have already had an MRI, which, thank God, was normal, and now I am going in for a EEG with a VER.
I also have another troubling symptom which is a slight blurriness in my right eye, which three different eye doctors cant explain or correct. In fact, even with the blurriness, my eye still tests with my glasses as 20/20. Go figure.
It is actually this blurriness symptom much more than the SS, which drove me to see the neurologist. I don't recommend an MRI if SS is your only symptom.
I was also inspired today to make a video depicting the SS.
I used a thirty second clip I captured with a canon still camera at Crater Lake, Oregon as the base image. I sped up the SS experience in the video to occur completely in the thirty second clip. (I am the guy in the hat.)
As my SS's have been twenty five to thirty minutes in length, the video depiction of the SS is therefore sped up ten to one.
(Who wants to watch a thirty minute SS movie anyway!)
Please let me know in comments at youtube what you think.
It ain't perfect, but I did my best.
I also want to note for other newbies, and those that suffer fear as a result of SS, that as much of an inconvenience these experiences are, they are harmless, and nothing to worry about. I haven't read one post in these 180 pages that says otherwise.
I know I sure freaked out the first time, and thanks to all of you, the second one was not stressful at all, and this last one, like I said, I just blew off, and got on with it.
Love and Peace.
Richard
Here is the youtube link:
http://www.youtube.com/watch?v=gV_37cao38U

By: Dennis

Dennis — Sun, 18 Mar 2007 01:50:14 +0000

Please e-mail me an image of this Phyl. My address is: domdino57@aol.com

Thanks,
Dennis

By: edith

edith — Sat, 17 Mar 2007 16:30:38 +0000

You can post it on the web (like on Flickr or PhotoBucket) and put the URL here.

By: phyl

phyl — Sat, 17 Mar 2007 10:50:56 +0000

After more research, I have found sulfites,along with the possibility of weed killer where vegetables are grown, to be the probable cause of my SS. Like I stated before, if anyone wants a picture of how SS looks to me, they will have to send their e-mail and I will send it to them. I cannot find a way to put it on this site. If anyone has the secret, please let me know. It is better,security wise, for all concerned.

By: Tonya

Tonya — Wed, 14 Mar 2007 17:54:34 +0000

Thanks for hosting all these comments. Reading them has been very helpful. I had my first episode a month ago, and one today, with all the classic symptoms everyone describes. I had been warned I am at risk for detached retina, so I was very concerned about this, but when my vision returned to normal after 20-30 minutes, and my symptoms didn't really match up with detached retina, I suspected it had to be something else - and from reading your pages and others I have learned it is SS.

Three months ago I was diagnosed with cancer, had two surgeries, lost a lot of weight and am now scary-thin, am taking Tramadol daily for pain, and have a poor appetite. So maybe this is triggered by some nutritional issue, or stress, or even hormones...

Anyway, I feel so much better now that I can put a name to it and know that it is not detached retina (I couldn't stand another surgery right now). Thank you again for providing this space.