I have this problem too, and I'm worried sick about it as well. I have an appointment w/a neuropthalmologist in a couple of weeks.
How many of these spots would you say you have?
I also have temporary blind spots that act like migraine auras. I've been getting those every day since last year. But I also have the same problem as you, it seems, with some of the spots never really going away. It's so annoying.
I'll try and keep you posted on the info from the Dr.
I hardly get migraines anymore, but when I was a kid up until my mid-teens, I got them severely, once a week on average. Now I can go a month or more sometimes and they don't seem as bad. Oddly enough, I don't get visual auras with them.
I don't have any diagnosis as of yet, but another neurologist I saw a few months ago said he thought it was a migraine-related issue, although he admitted he hadn't seen anyone that complained of getting permament blind spots. I had a normal MRI and he wanted to put me on Topamax but it made me feel sick. I decided since I live pretty near Boston that I'd go to an expert there and try to get this checked out some more. That's where I'm going on the 11th.
About how often do you get new spots? Has the rate increased over time or stayed the same? Or maybe it's random?
I seem to get a new one every few months. I'm very worried about it getting more frequent or that I'll get big ones near my central vision.
I used to get them maybe once every six-eight months, but this past year I've been getting them VERY frequently, sometimes even two or three in one day. On average, I'd say one every two-four weeks now.
I'm terrified, too, of getting one right at my point of focus. Sometimes I'm scared to open my eyes in the morning and this fear pretty much dominates my life.
I want to know the answer so much, even if it's devastating, because at least then I can plan accordingly and get on with my life instead of living in this limbo land of anxiety and dread.
Ugh. PLEASE, please let me know what the neuro-opth says. I am in touch with a few other people with this - and none have a diagnosis.
Hey there, I hope you'll see this post although I know it's been awhile since this thread started. So here's what happend at my opthoneurologist visit:
The Dr I saw was extremely good, I spent over 3hrs, discussing, getting tests and being examined etc. I had a thourough Amsler grid test and I mapped out my all my spots on it. I had several different types of OCT tests, and nothing abnormal showed up on those.
Near the end of my visit he checked my eyes thoroughly with the opthomoloscope (I think that's what it was - the one you look through and they shine a bar of light) and he manuvered a horizontal bar of light in the area of my most noticable spots and after almost a full 5 minutes of searching the area he suddenly caught sight of what he described as an EXTREMELY TINY, grayish, round shaped object sitting on top of or stuck to the retina. He also found another one next to it, also in the exact location of my other scotoma. He said he has never been able to actually see this before.
He was very excited about this and went and got another Doctor to have a look at it as well, but the other guy couldn't find it (he was moving the light around too quickly and didn't spend as much time searching). My Dr said he might have another Dr that he knows is interested in these kinds of issues have a look at my eye to look at the spots some more in the future (I don't know when that could be).
I was not given a diagnosis but he says it seems to be something like a floater that hasn't broken away or is in an area where it can't move for some reason, like it's stuck there.
I'm curious to know if anyone else has had a doctor actually see something in the locations of their scotomas.
I also want to mention he reviewed records of the tests that were done at my other doctors. He saw no sign of any kind of disease. I asked him if the Humphrey test could miss these spots and he said it could considering these spots are so tiny.
Basically he told me to not worry about going blind over it and to try not to obsess too much over these spots.
Again, I didn't get a diagnosis as to what this or anything I can do about it. I'm just so glad someone finally was able to see something.
kabees, you've piqued my interest here. can you describe in more detail how your spots manifest? Would you describe them as more like an afterimage from a bright light than a floater? Mine look the opposite of what i'm looking at - ie grey against white, white against dark etc. they are also most intense after i blink. then they fade to a permanent blind spot.
The doctor wasn't concerned about it being anything bad other than a nuiscance. He said it was like the spots were casting a shadow. I still feel nervous over it because nothing definite was concluded, like a diagnosis. I also get lots of aura-like spots every day but those seem different and last only a few minutes.
My scotomas start out like bright yellowish or blueish sparkles of light. It varies how long they take to fade. I've gotten some for only a day or hours and those don't usually leave any noticable affects. Other ones I've had can last a week or a little more, then fade into little blind spots.
I do notice them if I open my eyes suddenly while looking at a ceiling or wall. I'll see dark spots where my blind spots are for a second and then the blind spots get filled in with the surrounding colors. I can see gaps in dark lines and boarders too.
They sound exactly like mine. The briefer they are in their onset, the less permanent damage they seem to leave. I also see gaps in boarders and lines. Spreadsheets are hideous to look at!
If i blink real hard or open my eyes and look at a plain surface, i can see them all too. Then they get filled in, unless i'm lookiing at something with high contrast.
I agree that they are a major nuisance, but I can live with a nuisance. I can't live with the idea of impending blindness. It is the anxiety over that prospect that is debilitating for me, not the blind spots themselves. Is it like that with you?
I have the same issue as far as tests go - nothing turned up on the Humphrey field tests that correspond, OCT seemed OK, nothing on my fovea etc. But the Amsler is a mess.
Your doctor knows all that, right, and is still reassuring you???
What about any follow-up?
(Thank you again for all this info, it really helps.)
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