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Negative Scotomas?
This began back in November 2011. Mid Nov I got a nasty cold - one of the nastiest I have had since I was a teenager (I just turned 31). I was taking all sorts of OTC medication (Nyquil/Dayquil/Advil Cold/Zinc Drops). The day I got better, I noticed a flash in my right eye. Didn't think anything of it then a few days later I noticed when I woke up in the morning there were flashing lights in my peripheral vision. Then the following happened:
1) Saw my regular eye doctor who did a dilated exam and found nothing wrong. Suggested I see a retinal specialist.
2) Saw retinal specialist - he dilated eyes as well - did OCT's in both eyes. Said everything was fine with the retina.
3) Follow-up visit 30 days later to retinal specialist - said he saw some dead eye cells but everything was fine. Suggested this could be something to do with my viral illness back in Nov.
4) Fast Forward about a month ago and I noticed where the shimmering lights in my vision were, that these are actually blind spots - so I close one eye and have to find something to focus on (such as cable modem lights) and move my open eye left and right and the light disappears.
5) Went and saw regular eye doctor again who did another dilated exam and everything was fine. Asked him about the scotomas (I did A LOT of googling recently) and he said I could very well have something lingering from the viral infection.
So now recently, I noticed these lights are beginning to happen a little more frequently. I noticed pinhole flashes of light in the center where the scotomas would be. The eye doc/retinal doc say everything is fine but it seems to have gotten a little worse.
Any thoughts on this?
1) Saw my regular eye doctor who did a dilated exam and found nothing wrong. Suggested I see a retinal specialist.
2) Saw retinal specialist - he dilated eyes as well - did OCT's in both eyes. Said everything was fine with the retina.
3) Follow-up visit 30 days later to retinal specialist - said he saw some dead eye cells but everything was fine. Suggested this could be something to do with my viral illness back in Nov.
4) Fast Forward about a month ago and I noticed where the shimmering lights in my vision were, that these are actually blind spots - so I close one eye and have to find something to focus on (such as cable modem lights) and move my open eye left and right and the light disappears.
5) Went and saw regular eye doctor again who did another dilated exam and everything was fine. Asked him about the scotomas (I did A LOT of googling recently) and he said I could very well have something lingering from the viral infection.
So now recently, I noticed these lights are beginning to happen a little more frequently. I noticed pinhole flashes of light in the center where the scotomas would be. The eye doc/retinal doc say everything is fine but it seems to have gotten a little worse.
Any thoughts on this?
Best Answer
Just read a few articles on PIC. Sounds quite like me, particularly the age of onset and presentation, though nothing has ever turned up on clinical examination, I'm not myopic, and I've had this for 15 years. Hardly self-limiting. I agree with your approach - anti-inflammatory lifestyle measures over steroids any day.
just about in the same breath, he said hmm I see evidence of these spots all over.. (modeling in the pigment of the retina) but it seems you have good vision, so I wouldn't be Hyper Vigilant about it.. I said well, I have permanent spots that wont go away, and new spots, so my vision is getting worse.
then he said, yeah you should see your Primary, or even a rheumatologist.
then sent me on my way, he said I might have "PIC".
my wife is actually an ND so we're trying some anti inflammatory things.. I don't want to go down the road of traditional medicine's approach which is to suppress the body's natural fight against something that is bothering it (immune-suppressants, steroids). so I am not sure what the answer is yet.
then he said, yeah you should see your Primary, or even a rheumatologist.
then sent me on my way, he said I might have "PIC".
my wife is actually an ND so we're trying some anti inflammatory things.. I don't want to go down the road of traditional medicine's approach which is to suppress the body's natural fight against something that is bothering it (immune-suppressants, steroids). so I am not sure what the answer is yet.
Interesting. I've asked about the White Dot Syndrome several times, in particular MEWDS. My most recent retinologist ruled it out though. It would make sense though, particularly as I have other autoimmune/inflammatory issues and these things tend to cluster.
I guess you weren't offered any treatment or prognosis, if he is only speculating about the cause. Did he say anything else, recommend you for further testing, or just send you on your way?
I guess you weren't offered any treatment or prognosis, if he is only speculating about the cause. Did he say anything else, recommend you for further testing, or just send you on your way?
correction, I guess I had ran across White Dot Syndrome, it talked about in this very (long) Thread. not sure why it didn't stick in my brain.
anyway, as long as iv been without a diagnosis, it leads me to believe a lot of people on this forum who still don't have a diagnoses doesn't mean they Don't have a white dot syndrome.. I just now after 11 years have a spot large enough that they can see. it seems you can have these spots in various sizes, and depths, and the depths can be in varying layers of the retina.
I still don't know the cause, (Inflammatory, auto immune, Viral) I am leaning towards inflammatory.. we are all inflamed these days with diet and lifestyle. and news on TV that can make your eyes bleed just watching ;)
anyway, as long as iv been without a diagnosis, it leads me to believe a lot of people on this forum who still don't have a diagnoses doesn't mean they Don't have a white dot syndrome.. I just now after 11 years have a spot large enough that they can see. it seems you can have these spots in various sizes, and depths, and the depths can be in varying layers of the retina.
I still don't know the cause, (Inflammatory, auto immune, Viral) I am leaning towards inflammatory.. we are all inflamed these days with diet and lifestyle. and news on TV that can make your eyes bleed just watching ;)
Update,
I had a larger spot in upper right vision of left eye.. finally got up the courage to go into the retinal specialist again.. this time he was able to see it.
he changed my diagnoses from possible CSCR Spots, to White Dot Syndrome. Possibly PIC.
Its funny, I never ran across "White Dot" in all my searching, and even on forums. I had heard of Bird-shot CSR which is a type of White Dot Syndrome, but the Doc said I didn't have that, my lesions are not the right size or pattern.
so its Inflammation, or Auto Immune he says.
anyone heard of this? Ive been dealing with this for a long time, and the flare ups are more frequent. not sure what I am doing or not doing that is causing it. but if you look it up on Wikipedia, it does describe what a lot of us have going on.
-John
I had a larger spot in upper right vision of left eye.. finally got up the courage to go into the retinal specialist again.. this time he was able to see it.
he changed my diagnoses from possible CSCR Spots, to White Dot Syndrome. Possibly PIC.
Its funny, I never ran across "White Dot" in all my searching, and even on forums. I had heard of Bird-shot CSR which is a type of White Dot Syndrome, but the Doc said I didn't have that, my lesions are not the right size or pattern.
so its Inflammation, or Auto Immune he says.
anyone heard of this? Ive been dealing with this for a long time, and the flare ups are more frequent. not sure what I am doing or not doing that is causing it. but if you look it up on Wikipedia, it does describe what a lot of us have going on.
-John
Hi John
No, I've not come across anyone who was so seriously affected that their point of focus was significantly impaired. The anxiety and the what ifs do take a toll psychologically though. It's frightening and frustrating not to know what is going on, especially when you are reminded of it constantly just going about your life. It's not something that's easy to put aside. I've had doctors tell me repeatedly that if it were something serious, it would have progressed to include other signs and symptoms by now. I suppose that is somewhat reassuring.
Mel
No, I've not come across anyone who was so seriously affected that their point of focus was significantly impaired. The anxiety and the what ifs do take a toll psychologically though. It's frightening and frustrating not to know what is going on, especially when you are reminded of it constantly just going about your life. It's not something that's easy to put aside. I've had doctors tell me repeatedly that if it were something serious, it would have progressed to include other signs and symptoms by now. I suppose that is somewhat reassuring.
Mel
I never used to, but in February I had one, and then 2 last week, a few days apart this week I am fine, but I exercized on Monday evening, and then I got a flair up of one spot above to the left of my center left eye, and then 2 days later that one has faded back down and then one in the same eye lower center of my vision, there are 2 spots close together kind of makes it look like an elongated spot. I think its calming down.. i am pretty sure the first spot this week first apeard in 2009 after one of those head exploding stressful events at work.
its been 11 years since my first spot, and migraines were not part of the picture.. so I am not sure if they are related or not.
is there anyone that you know of that has had this get out of control where real vision impairment has happened? I have seen some others comment on here with the same worry, that they will have the center of vision messed up and be disabled.
I sure hope not for anyone.
-John
its been 11 years since my first spot, and migraines were not part of the picture.. so I am not sure if they are related or not.
is there anyone that you know of that has had this get out of control where real vision impairment has happened? I have seen some others comment on here with the same worry, that they will have the center of vision messed up and be disabled.
I sure hope not for anyone.
-John
Oh yes. Vertical and horizontal blinds are the worst for highlighting all the residual spots. Depressing. I've had this going on for about 15 years, since I was about 30. Do you also have migraine with aura?
Thank you Melinda.
yeah I am having a flair up, seems some older spots are flairing up again..
its pretty annoying, looking at the bright computer screen, then when I look off the screen the spot fades from the bright screen white into the background.. (the after image) and when the spot falls on the edge of the computer screen it causes a blurry fuzzy spot that blends the bright and dark together. I have too many of these spots now. they do calm down in a few days. but it makes me sad to look at the sliding glass door blinds, with all the sharp lines, it allows me to see lots of the little spots that have come and gone over the years and left permanent spots. im only 31, so I need to get some decades out of these eyes. I am thankful I still have great vision, just annoying spots.
yeah I am having a flair up, seems some older spots are flairing up again..
its pretty annoying, looking at the bright computer screen, then when I look off the screen the spot fades from the bright screen white into the background.. (the after image) and when the spot falls on the edge of the computer screen it causes a blurry fuzzy spot that blends the bright and dark together. I have too many of these spots now. they do calm down in a few days. but it makes me sad to look at the sliding glass door blinds, with all the sharp lines, it allows me to see lots of the little spots that have come and gone over the years and left permanent spots. im only 31, so I need to get some decades out of these eyes. I am thankful I still have great vision, just annoying spots.
You should take a look at the extensive thread here titled "For those with bright spot when blinking syndrome". You are most certainly not alone. No-one has any definite answers, but it may help you to compare symptoms and diagnostic tests.
I Also have some un explained eye issues that come every so often, leaving a small blind spot (small usually, but annoying) I have many little ones, they usually fade over time. some don't, or do very very slowly (several years I still see them). I have been to retinal specialists and none can give me a diagnosis. they cant see any issues. I have been to 4 or 5 Retinal specialists, and a couple regular ophthalmologists over the last 8 years or so. I still have good eye sight, the blind spots are not directly in the center of my vision, although I did have one very close, but it has healed.
It is comforting to know there are others out there with the same thing. but not cool that none of us have figured it out. if anyone does, please post it all over the place!
-John
It is comforting to know there are others out there with the same thing. but not cool that none of us have figured it out. if anyone does, please post it all over the place!
-John
hello sir... I saw ur precious suggestions here. I too have such shimmering light appearance in any field of vision. Initially its a very small region which later on spreads to almost whole of my visual field. Few months back, I had similar episodes which regressed within few minutes. Few dsys back, I had similar episode n now also having which wil regress in few min. I don't understand what to do because indirect and direct opthalmoscopy revealed nothing. Please suggest something sir.
Melinda,
Very interesting. Yes it seems we have something similar. It has got to be genetic as my mother and grandmother both get horrible 72 hour straight migraine attacks with aura. I personally have had only one in my life and that back a few months ago - again, it moved out of my field of vision within a few minutes and I got a nasty headache that lasted all day but was gone by the next morning.
This is why I came on here because I am worried that the Eye Docs/Retinal Specialists found nothing wrong with the *eye* - but something could be terribly wrong with the brain or something else. For several blind spots to be in your vision at once and not go away is odd - but I can't help but think this WAS related to that cold I had as, again, the day I got better this all happened.
Anyways, I appreciate your feedback and I am glad to know that I am certainly not the only one out there. I will be even happier when we are free of these phenomena. Take care!
Very interesting. Yes it seems we have something similar. It has got to be genetic as my mother and grandmother both get horrible 72 hour straight migraine attacks with aura. I personally have had only one in my life and that back a few months ago - again, it moved out of my field of vision within a few minutes and I got a nasty headache that lasted all day but was gone by the next morning.
This is why I came on here because I am worried that the Eye Docs/Retinal Specialists found nothing wrong with the *eye* - but something could be terribly wrong with the brain or something else. For several blind spots to be in your vision at once and not go away is odd - but I can't help but think this WAS related to that cold I had as, again, the day I got better this all happened.
Anyways, I appreciate your feedback and I am glad to know that I am certainly not the only one out there. I will be even happier when we are free of these phenomena. Take care!
TheBigDeal,
The reason I chimed in is that I have something quite similar. I don't get the flashing lights, more like the after-effect of a camera flash. I've had this occurring in both eyes (not simultaneously) for the past 12 years. After the spots "settle down" - this varies from days to weeks to months - they leave a permanent negative scotoma in their place. I've seen many retina specialists over the years and had many tests, but no diagnosis.
I too suffer from migraine with aura and believe that while the visual manifestation is completely different, that the two are somehow related. I have spoken to numerous people with the same issue, and ALL have migraine with aura. So the correlation is anecdotal, but it's pretty convincing nonetheless.
The reason I chimed in is that I have something quite similar. I don't get the flashing lights, more like the after-effect of a camera flash. I've had this occurring in both eyes (not simultaneously) for the past 12 years. After the spots "settle down" - this varies from days to weeks to months - they leave a permanent negative scotoma in their place. I've seen many retina specialists over the years and had many tests, but no diagnosis.
I too suffer from migraine with aura and believe that while the visual manifestation is completely different, that the two are somehow related. I have spoken to numerous people with the same issue, and ALL have migraine with aura. So the correlation is anecdotal, but it's pretty convincing nonetheless.
I guess I had better mention the most important thing - I have had these permanent now since November 2010 - the migraine question has come up - I did have an ocular migraine about 4 months ago but this was completely different in shape and location and most importantly it left my field of view in like 15 minutes. These spots are part of the "decor" if you will.
Melinda - Thanks for your input. No I assure you these are not the physiological blind spot. I have what seems to be 3 of these spots in my right eye (at 12oclock 3oclock 5oclock) and 2 spots in my left eye (6oclock 10oclock). I have looked up a blind spot test online and these are definitely separate than the normal blind spot. I can close one eye and I can make almost 2 fingers completely disappear into each spot very easily.
Dr. Hagan - I first noticed these spots everytime I would get around bright light. When I was in a darker room it seemed to go away. Now almost a year later I notice the spots "flicker" when I'm outside and sometimes ill be a dimly lit room and I can see pinhole flashes of light exactly where the spots are. I will certainly see a specialist about this. I appreciate any further feedback regarding my comments to Melinda or You and will keep the board updated. Thank you again.
Dr. Hagan - I first noticed these spots everytime I would get around bright light. When I was in a darker room it seemed to go away. Now almost a year later I notice the spots "flicker" when I'm outside and sometimes ill be a dimly lit room and I can see pinhole flashes of light exactly where the spots are. I will certainly see a specialist about this. I appreciate any further feedback regarding my comments to Melinda or You and will keep the board updated. Thank you again.
MEDICAL PROFESSIONAL
walk don't run but get there. Melinda's observation is true. If you shut one eye seek out the blind spot you can make things (like the tip of your finger) disappear into it.
JCH MD
JCH MD
Are you sure that the peripheral flashing lights you have experienced haven't made you hypervigilant of your eyesight and that what your seeing is actually the physiological blind spot we all have?
Thank you Doctor. Just to clarify - when I am looking straight ahead I do not see anything abnormal in my vision (except for a few "sparkles" or "prisms" where I know the blind spots are) - when I close one eye and move my eye over something it just disappears - there is no black or white or anything - it's just gone. Again, just in my peripheral vision only. I thought if the patient was unaware of the scotoma it was a negative - which I have had this thing going on for about a year now and only JUST figured out that these sparkles in my eyes were actually blind spots.
I assume this is a "run don't walk" situation to the neuroophthalmologist?
I assume this is a "run don't walk" situation to the neuroophthalmologist?
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