View Full Version : Fear of blindness worsening
I found myself in a&e again yesterday as I feel my distorted vision is getting worse. I suffer from horrible glare from lights and if lights are in my peripheral vision they look like starbursts. I am also getting terrible after images. The doc shined a bright light into my eyes and I literally saw that light for like half an hour after. I'm not so worried about glaucoma or cataracts, but I'm generally petrified the docs have missed the signs of retinitis pigmentosa. I feel like I have a rare disease that nobody has found yet. I can no longer see without my glasses everything is a wishy washy mess. Everything seems darker and less clear than it should. It feels like colours are less distinct.
I'm waiting for the inevitable. I am so unbelievably petrified.
Kerri
Hi that sounds terrifying. What did the doctor say about it?
I've had a few tests, including eye dilation exams, visual field tests and an Oct of macula but nothing has been found. So I'm starring to worry they've missed something or its something neurological.
The title of your thread speaks volumes. You've been examined up, down and sideways and your eyes are fine. It's the fear of something that's not there that is worsening. Have you looking into therapy or meds to try and help?
Positive thoughts
It's gonna be a tough one to swallow. But your tests are fine. Please (and I know how hard it is) to take reassurance from that.
Thanks fishmanpa, I've tried anti depressants but my doc has told me that there isn't sufficient evidence that they are effective in treating health anxiety. I'm currently having 2 weekly cbt sessions. But I'm so preoccupied with my sight even during these sessions. I can't concentrate on anything. I fear night, even more so as it's starting to get dark earlier now. My symptoms are really exacerbated at night. There must be something to explain these symptoms!
You know how some people are fixated on things like floaters? Well, everyone has them. I have them but I don't notice them at all. BUT.... if I focus myself enough I can see them. The whole side of my neck and face is numb and feels weird due to surgery from my cancer. I also have quite a bit of pain inside from muscle spasms and muscle atrophy from having nerves cut. The area around the scar on my chest from open heart surgery is numb. There are times I feel that but more often than not, I don't notice it that much because I'm distracted doing other things. BUT.... if I focus on it, I feel like I'm made of clay and sometimes hurt like a SOB!
What does that tell you? It tells me I can control it by my mindset and I do. IMO, you're so hyper-focused on your eyes that you're actually creating symptoms that aren't really there and/or exasperating natural aspects of your vision. Keep working on the CBT.
Positive thoughts
I'm so sorry you've been through that. I think the problem with my eyes is that they're the window to the world. I think it is so hard to ignore visual symptoms because I can always see them. It drives me insane. I seem to have prolonged episodes of anxiety and they focus on a different disease or part of the body. I can't seem to shift this one, because I genuinely think it's getting worse. I do know the cycle though, I just want more and more tests I want to see different doctors. The one I saw yesterday just didn't seem bothered, it was like he wanted to finish his shift and It felt completely rushed.
Firstly retinitis pigmentosa is an inherited eye condition so unless one of your parents has it it's unlikely. Ophthalmologists are not going to fob you off if they missed something they'd lose their licence and be sued for millions. Like fishmanpa says the more you think of something the worse it becomes. You need a trip back to gp for some !medication and continue with your therapy. Good luck
Hopefully the CBT will help as the last thing you want is to have eyes to see with and miss out on the beauty all around you due to having the blinders of anxiety blocking it out.
It's like "What Ifs" here on the boards. People are so caught up in the "What Ifs" that they miss out on the opportunities life presents. The worst "What Ifs" and the ones we regret the most are the chances we don't take due to fear.
Positive thoughts
Yes I totally agree. I am absolutely obsessed with 'what ifs' I don't want children because I'm afraid I won't be able to see them, or I'll pass my faulty genes to them. I'm afraid of persueing the career I want because I'll lose it all as quickly as I got it. I'm just so scared about what the futures hold.
Yes I totally agree. I am absolutely obsessed with 'what ifs' I don't want children because I'm afraid I won't be able to see them, or I'll pass my faulty genes to them. I'm afraid of persueing the career I want because I'll lose it all as quickly as I got it. I'm just so scared about what the futures hold.
As you know I am going through this worry atm of losing my sight. Everything you mention I get too with seeing the after images after I see a light or someone shines something into my eyes.
Honestly I wouldn't worry if they have told you that your eyes are fine. I used to worry before I had an issue with my eye and i wish i didn't because I always had good vision.
It's just something happened to my eye a few months ago that has affected my vision and I am not able to read very well from far away or up close depending on the writing and how bright the room is. A reason I still worry about Macular Degeneration.
I would have comfort knowing now they have told you that your eyes are fine and I am really sure you will be alright :)
Thanks Matt, I don't think I'm going crazy, there definitely is something wrong but they haven't found it yet. It's so hard to try and explain it to someone because they can't see how you see. My doc was satisfied that my visual acuity and visual field were good. To me that isn't everything. My vision is so distorted. I really can't explain how petrified I am. I'm sorry Matt, I hope you don't think I'm being insensitive.
Thanks Matt, I don't think I'm going crazy, there definitely is something wrong but they haven't found it yet. It's so hard to try and explain it to someone because they can't see how you see. My doc was satisfied that my visual acuity and visual field were good. To me that isn't everything. My vision is so distorted. I really can't explain how petrified I am. I'm sorry Matt, I hope you don't think I'm being insensitive.
No not at all, in which way is your vision distorted? Everything you have said so far is what I get before I had this issue with my eye. I think some eyes are just more sensitive to light and our anxiety wont help.
I did have something that happened to my eye and it has scarred my center vision. I think that explains the shadow but also effects my reading in that eye now as in unlit or far away areas I can't make anything out clearly.
I understand how scary this is and no one understands your fear as much as me but trust me, the doctor would have told you if there is something seriously wrong.
The doctor isn't that concerned about me all though the scarring wont go away, I just have to go back to see someone else in a month to see what they say.
I hope that helps :)
Does that mean they don't think you have macula degeneration Matt? I spent last night frantically waking up every few minutes to check if I could still see. I have like a dark circle in my vision but only when I'm in bed at night, it is never there any other time. It appears when I wake up suddenly and slowly fades. They may not be able to see any damage or disease on my retina, but I'm worried something might be wrong with the cells in it (it's extremely rare). God I'm absolutely convinced I have a rare disorder that is hard to diagnose. I'm also almost 100% sure I have some degenerative corneal disease, which would explain the ghosting and glares. Or its neurological.
I've had a mental breakdown and I'm not sure where to go from here. I cant stop crying i constantly trembe. I can't describe the fear because it is unexplainable, it's horrifying and effecting my body tremendously.
I'm sorry if the post seems melodramatic. It's constant what ifs. This all started from worrying that my eye squint was coming back and now I've got a rare retinal disorder. What the hell is going on????
Ker92ri. I have just taken 10 minutes reading an article on vision problems due to anxiety and everything you are detailing mimics that of anxiety. I wish one morning you could wake up and this eye issue you have be gone, then your anxiety surrounding it would also go. Problem is, its the constant worrying about it that is the contributing factor, hence making it worse for you. If I was a betting man, I would bet my life savings that you are not going blind
Thanks Liviguy I just really can't see it. I'm convinced something is happening. I'm so anxious because I have these vision problems. I'm at a loss I don't know what to do.
Does that mean they don't think you have macula degeneration Matt? I spent last night frantically waking up every few minutes to check if I could still see. I have like a dark circle in my vision but only when I'm in bed at night, it is never there any other time. It appears when I wake up suddenly and slowly fades. They may not be able to see any damage or disease on my retina, but I'm worried something might be wrong with the cells in it (it's extremely rare). God I'm absolutely convinced I have a rare disorder that is hard to diagnose. I'm also almost 100% sure I have some degenerative corneal disease, which would explain the ghosting and glares. Or its neurological.
I've had a mental breakdown and I'm not sure where to go from here. I cant stop crying i constantly trembe. I can't describe the fear because it is unexplainable, it's horrifying and effecting my body tremendously.
I'm sorry if the post seems melodramatic. It's constant what ifs. This all started from worrying that my eye squint was coming back and now I've got a rare retinal disorder. What the hell is going on????
No I am still worried I could have it. My reason being is when I try to read words from far away or writing that is on a calendar (Just an example). It feels like it disappears where the black/scar whatever it is that obstructs my view in that eye. I have to be in a well lit room to make out some stuff but only when I cover or shut my left eye. My left eye compensates for the right eye atm.
I have lost my confidence with driving and other hobbies and my interest which was gaming has gone, I spend most my time worrying and I too have many what ifs.
I can't tell you to stop worrying, especially because I can't do that for myself atm. However everything you're going through feels like a really bad case of health anxiety. I suffer from it too and it sucks but I would just have peace knowing that you have been seen and they have told you your eyesight is fine.
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