UK Keratoconus Self-Help and Support Association

I have had keratoconus since my mid 20's, I am now 45. I realised that there was something not quite right with my eyes when I returned to study. I was squinting to be able to read the blackboard, I was taking much longer to copy notes etc... At first the kereteconus was not picked up by an optician and spectacles were prescribed, on wearing the said specs my eyes found it even harder and they made me feel dizzy and sick. I returned to the opticians, fortunately for me the optician that had seen me was off that day so I was seen by a different one. He picked up on the keratoconus, I was referred to the hospital. I live in Scotland and it has been my experience that if you are a hospital patient, even being seen by a private practice, you do not pay for your contact lenses, I have never paid for mine, up until now I have had GPL, Hybrid, and soft lenses. I am not very good with the lenses, so I usually wear glasses which I do have to pay for.

I find it hard to wear the lenses as my eyes always seem to be itchy, the lenses also pop out when I blink. I do have much better sight with the lenses, but it's such a bother if one pops out and you can't find it, then you have to re-order and this can take a while especially when I used the hybrids (I think that's what there called, small hard lens on the inside and soft round the edge) I had a bad experience with them, I couldn't get one lens out, it had gone round the side of my eye, eventually I managed to get hold of the edge, but then it tore away from the hard bit , what a nightmare!

If anyone else reads this and has some ideas for me please reply. My eyes are always itchy, I suffer from allergies and dry skin (eczema), my eyes water constantly, it looks like I'm always crying!
The doctor has given me cream for round my eyes, I later explained that it's not the skin round my eyes that is itchy by the pink bit the touches together when you close your eyes, (women sometimes put eyeliner here) so I got two types of eye drops: viscotears for night and liquifilm tears for during the day. I have been using these for months now and I have just discovered that I have an infection in 1 of my eyes.
Does this every get better? Why can I not put up with the contact lenses. Why do my eyes itch so much? My husband says that when I rub my eyes it makes him feel ill!

pip

Welcome to the forum!

I guess we all recognize the experience you describe. I had a lot of trouble keeping lenses in my eyes, although when I started wearing Scleral lenses, this problem was solved.

For an eye infection you will need to see a doctor who will know whether to prescribe an antibiotic. If this is what is indicated, it may be that you would find that some of the itchiness was overcome.

Also, the irritation along the rim of your eyelids may be due to your lenses hitting the eyelid when you blink; this can cause a build up on the rim of the eyelid. An eye care professional would be able to advise you on strtegies to cope with this.

I think that eye rubbing is a common symptom of keratoconus: I know that I used to rub my eyes more than I ought.

it is good to meet you. The Scottish group has a meeting on November 17 in the Strathclyde University Chaplaincy Centre on John Street. Will you be able to come?

Andrew

Any probolems with lenses really need to be refered back to the lens fitter and also discuss your allergies too.

Having eczema is quite common and as such I find lens comfort is dicated by the lens solutions and eye drops I use. This is to such an extent I have found that only one type of lubricating eye drops works and one set of lens solutions works.

It is possible that as you get used to lenses the way the mould your eye changes and the lens popping out happens less. It was frequent when I first started on the lenses, but now my eye has got used to them it only happens under certain conditions. I know what they are so avoid such a suituation and not had a lens pop out for a couple years now.

There are dozens of RGP lens types which may improve the situation but yor lens fitter needs to try the mens and check what else is happening in your eye too.

There is lots happening within a few of the lens manufacturers so you need to perservere.