Huge variation with my vision

[Rhys03]

Hi everyone

I have KC and have been coping without any aids. I’ve had hard contacts fitted but they don’t really improve my vision.

The standard of my vision varies hugely. At times it’s really sharp but at other times maintaining eye contact with people in the same room as me is really difficult.

Does anybody else experience this variation with their vision? If so, have you managed to find an explanation?!

Thanks everyone!

[Anne Klepacz]

Hi Rhys and welcome.
I think most of us find our vision fluctuates a lot. One factor is light - looking at something against a bright light can cancel out the image, but not enough light and we struggle to see. Time of day makes a difference too. I always find I see better in the mornings when my eyes and brain are fresh. My vision is worse when I'm tired. And because KC often affects our two eyes differently, the brain has to work hard to compensate for the ghosting or double images we see or to block out the hazy image from the 'bad eye'. Not a scientific explanation, but I reckon the brain just gets tired of making sense of our distorted world and stops compensating for the mixed images. Have others got a better explanation>
I'm surprised though, that you say hard contact lenses don't improve your vision. That's more unusual. Did you have them fitted in a hospital eye clinic? Fitting lenses for KC is an art, and even experienced optometrists don't always get it right first time and the fit or the prescription often need tweaking.

[Rhys03]

Yes I certainly agree that different conditions impact vision. Personally I see much better when it’s very bright. I’m not sure if this could be because my pupil contracts more, thus the effects of the KC are decreased...I’ve often wondered whether hydration, diet, alcohol consumption, too much screen time could all play a part in these fluctuations. Have you any thoughts along these lines?

As far as the lens fitting goes, yes I had them fitted by a specialist at a hospital eye clinic. It was a very frustrating experience because whilst ‘in the chair’ he was able to improve my vision significantly, but wasn’t able to reproduce those excellent results with the lenses.

[space_cadet]

my small window of "useful vision" fluctuates a lot, the time of day, the lighting/artifical light, how tierd I am, how emotional, how stressed, if I'm hungry and many other variables, even those without KC find their sight can fluctuate throughout the day x

[Lia Williams]

Hi Rhys,

It was a very frustrating experience because whilst ‘in the chair’ he was able to improve my vision significantly, but wasn’t able to reproduce those excellent results with the lenses.

If you got good results in the chair one would hope that a lens with similar results could be prescribed. That said, reading black text on a white background is not a real world situation. A small amount of ghosting around the text on a little chart can add up to blurring in a real life situation where not everything is black on a white background.

It may be worth having the prescribed lenses checked to see if they were made to the correct prescription. I once had a lens to checked to be told that it was, so they had to start again and find a different lens. Contact lens fitting can be a very frustrating process, on both sides of the chair. Let's hope that next time you go to the hospital a more suitable lens can be found for you.

Lia

[Rhys03]

Thanks Lia - that’s a possibility that I hadn’t considered!

The specialist who fitted the lenses did say that the results could be replicated if I was to wear spectacles as well as the lenses! Does anyone wear both at the same time?

Thanks again for the replied everyone.

[Lia Williams]

Yes there are people who wear contact lenses with glasses over the top.

I have met people with KC who wear glasses over their contact lenses. I think in sometimes this is to correct some of the astigmatism, but I can't remember exactly why it was done.

In older people with presbyopia reading glasses may be required. Although there are mutlifocal contact lenses this is often regarded as "too difficult" for keratoconus. I have my contact lenses set for monovision. The dominant eye is for distance and the non-dominant eye for the computer screen. In good light I can see to read but for small print I have a cheap pair of reading glasses.

[Green]

I wear a lens and glasses on top for 1 eye. I have 2 sets of glasses for computer and reading