UK Keratoconus Self-Help and Support Association

I was diagnosed with KC about a year ago and only recently started wearing glasses. I'm 28 and the KC is worse in my right eye than it is in my left. I can read without glasses but i have to be closer to the screen or I have trouble reading things after a certain distance. Things appear more blurred if I dont wear glasses and I have to strain a bit to read words especially on computer screens I've been doing this for years so wearing glasses now makes it have a big effect on me. Suddenly I can see a lot more clearly. Like I can see details when I wear glasses that I cannot see without them.
Anyway since wearing the glasses (Which I only started wearing 2 weeks ago) my vision is a lot better in my left eye but the glasses dont help for my right eye as its developed more for that eye to the point that only contacts can correct it. So today I had a contact lens consultation and it didnt go well at all. Never worn contact lenses of any kind before so when she tried to put them in my eyes it was extremely uncomfatable. Tears rolling down my eyes, kept blinking having this piece of glass on my eyes was extremely irritating. So after just 20 seconds I could not wear them and had to tell her to take them out.

She told me it took about 20 min for them to settle and I would get used to them. They were the hard gas permeable ones, but I just couldnt wear them for more than a few seconds. Is this normal at first? I cant possibly see myself getting used to this. She said its best to get used to them now rather than later.
I am very worried now as I have read all sorts of horror stories with people who have KC and wear contacts. Like lens dropping out all the time, getting very irritated by them, scarring the cornea badly, even so far as having a transplant just because contacts irritate too much. I am really disheartened by all this and its made me depressed. Should I continue to just wear glasses until they cant correct my vision enough and only wear contacts if necessary? Because I honestly was horrified when I tried the contacts on today. Didn't expect them to be that irritating and uncomfatable. At the moment I can drive, and see stuff fine with glasses even though they only correct my left eye. Even without glasses its not too bad unless I'm reading I can see well enough to do everything else. I'm very worried my KC will get worse as I get older and then get even worse because of contacts and never being able to get used to them

Hi Joe, and welcome to the forum.

I'd go with what your optician has said. It does only take about 20 mins or so for the eyes to stop streaming. Once they realise that they can't wash out the foreign body, they soon stop.

As for getting compeltely used to them, you generally build up wearing time by 30 mins a day, with the occasional rest day.

Sure, badly-fitting lenses can hurt, can fall out and are awkward. But it's bound to be more difficult to find a good-fitting lens when your eye is trying to wash it out. You'll also be a lot easier to fit when your KC is less pointy; so assuming your KC will progress (and that is by no means certain), then my advice would be to try and stick with the lens.

You've already experienced the difference you get with glasses - imagine the double-difference with a well-fitting lens.

Oh, and it's unlikely that a well-fitting lens will cause scarring - a bad case of KC can cause scarring all by itself. A poor fitting lens? Well, I suppose that is more likely to, but I'm not an optician.

Hang on in there, it will get easier.

Let us know how you get on,

I had my first contact lens fitting about six weeks ago - also hard ones like you.

The first time she put them in it was unbearable - lots of tears. But I made myself sit through it. As she explained - the first one she tries will probably not fit properly nor will it be the right power to enable me to see but she needed to see it in my eye in order to know what adjustments to make.

I sat out in the waiting room, tears streaming and unable to see.

After 20 mins she looked at the lens, then changed it for another one with better fit. That was still uncomfortable - but already about 10 times better than the first one had been. I sat with that for 20 mins then she made a decision about what my real lenses would be and ordered them.

When my real lenses came they were even more comfortable than the previous week - I was amazed how quickly I started to get accustomed to them. Even then one wasn't quite right and she made some more adjustments.

Now I have a pair that fit properly and my vision is just wonderful - better than my glasses. They are still mildly uncomfortable but nothing at all like the pain of the first time. I'm wearing them 8 hours a day and my life is transformed - less than 6 weeks after having that first, truly horrid consultation.

I'd put up with my glasses for 20 years prior to this thinking they were the only option. I tried soft contacts before and hated them so thought I could never cope with hard ones. If I had walked away after that first consultation I would have been a complete mug, because the transformation in my vision and my general outlook on life has been just amazing.

I know that a lot of the people on this site have not had such a success as me and there can be problems. But I just wanted to post an upbeat success story to balance some of the negative stuff and urge you to give it a try for a little bit longer.

Ok thanks for your advice. I feel a little better about it. I guess there are a lot of KC sufferers but on a internet forum and places like this you will only hear about the negative sides of wearing contacts and their effects with KC. There are many more people who wear contacts with KC and have a normal life without problems right? You aren't going to see too many people like that on here saying everything is ok for them?
I suppose its like a mp3 player that doesnt work properly you're far more likely to see problems associated with from a minority number of people than the majority of the people who bought it and its working fine for them.

In any case i have a another appointment next week to retry fitting the lenses in.

Joe

When I was first diagnosd I was offered early surgry. i did not accept, but instead wore lenses with comfort and good sight for over 20 years. many people (indeed most people) never progress beyond the need to wear lenses or glasses.

All the best and Don't Panic.

Andrew

Hi Joe,

It is usual to go through the experience that you have gone through when newly been fitted with RGPs. Things do get better and although i do notice the lenses in my eyes and sometimes feel discomfort after around 8 years of wearing, you do get used to wearing them. Just build up your weartime slowly as others have said and im sure your fitter will advise and you should be ok.

Unfortunately you read about some peoples bad experiences on this forum that can be off putting and worrying, however there are many of us i'm sure that have manageble experiences but dont necessarily write about. Equally, since joining this forum, i have learnt alot from peoples experiences and tips that have helped me get more comfort and management of my lenses.

stay positive with the treatment options Joe.

hi i had a lens fitting session about one week ago and had the same problems as you had, my eyes were sore when i had them in and i fainted after a few minutes. i have a added a post to the forum as i am really scared. hope you get on better trying lenses than i am at the moment. stacexxx

hi joe
john smiths advice is absolutely right.
just to re-iterate, your first experience of trying a lens and your reaction to it is completely normal.
it does take a period of time for your eyes to adjust to having the lens but i advise building your wear time up in baby steps ie 1/2 hour increments and you will adjust.
a bit like having a plaster cast on your arm for the first time, it feels like a lead weight but after a week or two you get used to it .
as for a lens causing scarring, a good fitting lens wont cause scarring, it is progression of the KC that will do that,and in the majority of cases, you will never progress beyond wearing lenses.
another piece of advice i can give you is cleaning regime. always be thorough about cleaning your lenses as small protein particles can build up on the lens and any tiny speck of "foreign body" on the inside surface of the lens will cause discomfort and sometimes cause a mild abrasion on the eye, that is all.
but your eye will let you know about that instantly.
above all dont panic
good luck
mike