Going blind, I think...

Posted , 7 users are following.

I have been losing my vision for about a year now. I can still "see" right now, but I think it's fading day by day.

My symptoms are:

- A dark veil that covers part of my vision when I look at something with one eye. It takes a second for the dark veil to appear. I have to stare at something for a second for it to happen.

- When I'm looking out of one eye, staring at something, I notice that I have a couple blind spots where I can't see anything.

- I have a veil of sparkly tiny light covering most of my vision, whether my eyes are open or closed.

- When I first wake up, my vision seems to "flicker" on and off.

- The white part of my eye is always beat red. It goes away during the day somewhat, but at night it gets really bad. I usually have to wake up at 3 in the morning and put in eye drops.

- Lots of black floaters.

- If I look at a bright light, I'll see it for the next 5 to 10 minutes.

-Awful night vision.

- I have this like weird transparent, moving sun thing in the center of my vision. Not sure how to describe it really.

So, I think I'm in the process of going blind. I believe it has something to do with taking the hair loss drug, propecia. I think it may have messed up my hormones or something. I know hormones impact sight.

There seems to be very little information on the internet about what to do if you're losing your vision. I have been to several opthamoligists and they all say my eyes look fine, which I find disconcerting. Not really sure how I can be going blind, but they say my eyes look totally normal. Either they're bad opthamologists or something strange is going on in my body.

Has anyone on here had similar symptoms to me? If so, was there anything that you did to prevent yourself from going blind? I live in the US. Is there a cutting edge doctor I could see about this?

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11 Replies

  • Posted

    Also, I went to a neuro-opthamologist. They said everything looks fine too. I thought maybe I had some sort of corticol visiual impairment in the brain. They didn't find anything, although they didn't do any extensive testing as far as I could see.

    I'm just amazed that it's now 2015, and there is so little information and/or help for blindness. I don't see any up-to-date, cutting edge forums about blindness. Everything seems to be out dated, and there are no real cures for anything.

    I can find brief articles that say something to the affect of "Hormones impact vision", but then the article doesn't get into any real specific information about the impact of hormones and vision. It seems that there are no researchers studying this, really.

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    • Posted

      It may be hard to find information just about preventing 'blindness' because blindness can be caused by any number of different diseases. There are treatments for the most common causes of blindess eg cataracts, glaucoma, diabetic eye disease. Most people who suffer vision loss are not completely blind - they may have lost part of their visual field, or can only detect hazy shapes, but there aren't many people living in comlplete darkness.
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  • Posted

    So are these new symptoms or have you had these veils checked out by an Opthalmologist? Floaters sometimes look like black spots or they can appear veil-like. It sounds like you might just have a LOT of floaters. If an Ophthalmologist had confirmed your retina is healthy I would be reassured by that, however the floaters will remain (although they might get smaller/break apart). If these are new symptoms though it would definately be worth another appointment with your eye doctor. 

    Everybody has a blind spot in each eye which isn't usually noticed when you have both eyes open, but with just one eye you might be able to detect a small area where you have a patch of vision missing so it might be that you are just very observant to have noticed your natural blind spot!

    I couldn't find vision loss as a listed side-effect of Propecia.

    If you're concerned then arrange another appointment with your eye doctor and get them to go through your list of concerns and hopefully they will be able to give you an explanation. It sounds like you've fixated on the possbility of losing your sight, do you suffer from anxiety at all? 

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  • Posted

    Thanks Rose!

    Yes, there's something called Post-Finasteride Syndrome, that people get after they stop taking propecia. When people get this syndrome, a common symptom is eye problems, including floaters, visual snow, difficulty seeing at night, after images, ect. I think I may have it particularly bad. Not everyone with PFS has as many eye problems as I do.

    These aren't new symptoms. I've had them for about a year, but they seem to be getting worse all the time. The black veil has widened, and I've developed more blind spots. I think the blind spot that you're talking about is like this:


    I have that blind spot, but I also have these two other blind spots that appear within the dark veil. It's kind of like when you're watching the show Cops, from the 80s/90s and they blur out the face of people they don't want to show on TV. It's an area of my vision that I just can't interpret information out of. It's an irregular shape, within the dark veil.

    The dark veil is kind of strange. It takes about 5 seconds for it to appear. If I'm looking at something in particular, like a dot on a white piece of paper, the dark veil will give me a round "vision hole" which allows me to see the dot, but the area around the dot is encompassed by the black veil.

    This article kind of touches upon some of my vision loss:


    No one actually knows what causes Post-Finasteride Syndrome. I have a suspicion that it may be an auto-immune disease. I know there are auto-immune diseases that cause vision loss like Neuromyelitis optica. So I wonder if PFS could somehow be similar to that.  

    I am wondering if maybe I should go see another opthamologist. Maybe the one I saw missed something. Although, I think I've actually been to a couple now, and they all said my eyes look perfectly normal. Maybe this is like a corticol blindness type of of an issue. I'm not sure.

    I am wondering if the chronic red eye problem might be an indicator as to what's going on with my vision. 

    Another strange symptom I've noticed is, if I look at something that has a pattern, the pattern starts to dance before my eyes. It's very strange. For example, if I look at a pattern of a grid, or a bunch of boxes drawn on a piece of paper that are evenly spaced, they appear as though they're dancing and the space between the boxes wiggles and vibrates and may even change colors.

    I'm concerned that I am in the process of going blind. I would like to stop it before my vision is totally gone. I'm not sure where to go and what to do. It's certainly not a straight forward case of glaucoma or catarax. I'm not sure what exactly it is. I know my vision is not normal and healthy though. There is a problem there. It's not something that I can just ignore, because it seems to be getting worse.


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  • Posted

    I didn't look for specific research in the US but there does seem to be quite a lot

    I just Googled Ophthalmic Research US, you have omitted the first H in OpHthalmic, so perhaps that makes a difference to what comes up

    I'll put a link theat I found, following this post

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  • Posted

    When my eye is red, it is because my uveitis has flared again and I too get lots of floaters

    Can you see an Ophthalmologist again and ask whether you have any inflammation.  Of course, another thing that causes red eyes etc., is Dry Eye Syndrome.  Have you tried Artificial Tears?


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  • Posted

    You need to see a consultant at a hospital eye clinic.  Moisturising drops may help but you probably need steroid drops and it is possible you have a virus, which required anti viral tablets.
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  • Posted

    I am guessing that you're probably right. I probably need steroid eye drops. It seems that all of my other hormones are out of balance due to PFS. Have you ever taken steroid eye drops before? Do you know what they do exactly?

    I have scheduled another appointment with an opthamologist for next week. I will ask him about this. Thanks!

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  • Posted

    Hi, I've just found your discussion, I'm a bit glad I did. Because 2 years ago now I have notice my eye sight going. I have taken prophecia for 5 continuesly, and there a few side effects I never wasn't aware till today, firstly the increase in facial hair, my eyelashes for example, and now just realising my vision. I have difficulty in focusing in grids, patterns, and a discomfort in bright lights. Today I'm stoping this medicine and I hope you do too.
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  • Posted

    Sounds like a retinal tear or detachment go see an eye doc as soon as possible
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