Question for Dr Sandra Brown - scotomata

[melinda68]

Hell Dr brown

i have 10-year history of a strange visual disturbance that i have no answer for, despite seeing numerous opthalmologists, including three retina specialists.

i have probably had 20 or more "episodes", which are mostly identical in duration and presentation.

first, i notice a bright spot in one of my eyes, like i've just looked at a camera flash, or caught the glare off a mirror etc. over the next few weeks it will fade to a grey blob that is most noticeable when I blink or look at something with contrast (eg vertical blinds). it then fades to a scotoma i can see on a an amlser grid but which can't be detected on objective testing.

i have been told my retinas look fine and it is not macular degeneration (I am 41, BP 74/115, no diabetes, etc, 5'4", 120lbs, no other health problems). my most recent dilated exam was a few months ago, during an actual episode (actually my worst one yet). I have also had a full work-up at the Sydney Eye Hospital, which ncluded a 10-2 Humphrey field test and an OCT. I also had an FA when tis first started.

i am afraid the doctors are missing something. if i knew what it was, i could get on with my life by coming to terms with it, one way or another. but as it stands, i am paranoid this is degenerative and one day i will awaken with a big grey blob and not be able to read ...

have you ever heard of anything like this or have any ideas what it could be?

thank you

[Sandra M Brown, MD]

Did you have a fluorescein angiogram during an acute episode?  This would identify a condition called central serous retinopathy, which fits your symptoms somewhat.  If the retina docs all feel that you do not have CSR and have no other visible retinal abnormalities, then most probably you are having a prolonged and unusual ocular migraine.  The discrete episodes, recurrence over a long number of years, and lack of cumulative damage fit this diagnosis well.  One other very unlikely diagnosis is optic neuritis, but this is almost always accompanied by pain behind the eye, does not usually start with a 'glowing light' sensation, tends to cause cumulative damage, and rarely consistently affects the same tiny area of your visual field over and over.

Hope this helps.

[melinda68]

Thank you so much for your input, Dr Brown. I had the FA during the first acute episode. I have not had one since. Optic neuritis has been ruled out by several doctors, as have the white dot syndromes, MEWDS etc. CSR was never mentioned to me as a possibility.

I believe there is some kind of cumulative damage, as the spots never entirely resolve, but leave scotomas scattered throughout my visual field. I am terrified of waking up one day with a spot right at my point of fixation!

I do suffer from migraine with aura, but these spots occur only in one eye at a time and are nothing like the scintillating scotoma of a migraine. However, some kind of migraine variant HAS been suggested to be my several doctors, as a tentative diagnosis of exclusion.

I was wondering whether my problem could be with the RPE layer, and might not be visible during a dilated exam?? I guess what i'm trying to establish is whether a serious disease could have been missed or would there be clear clinical signs after 10 years?

Thanks again
Your valuable time is much appreciated.

[Noelle77]

I have a somewhat similar thing as well. I went to the eye infirmary ER a few weeks ago because I had a purple camera flash effect stuck in my eye for six days. It gradually faded, but left a shadow in my vision for weeks. I too, am told my eyes are fine after a dilated exam. How can they not see something if they are examining the eye? It's baffling and scary. I wish you the best.

[Noelle77]

One more thing to note - I have had these episodes for about ten years also, they began when I turned 21. I am now experiencing the worst episode yet,  months with no letting up.

[melinda68]

hi noelle
thanks for responding. yes, it's very frustrating and frightening. your problem does sound a lot like mine. my last episode has been my worst so far in that i can still see the spot, which is larger than all the others, four months after the it appeared. i saw the opthalmologist when it was at its worst, and he found nothing remarkable ...
do you happen to also suffer from migraine with aura?

[melinda68]

Hoping you can look at my reply to your questions when you get the chance.
thanks
:)