UK Keratoconus Self-Help and Support Association

After a hydrops last November and months of recovery I rather naively thought I was luckily out of the woods. However I have been experiencing dry eye for a few years now and it’s effect in the eye that didn’t have hydrops is really frustrating me. I can’t see it’s like looking through frosted glass within ten mins of putting a lens in and I am getting really frustrated. I’ve tried every kind of drop, cleaning fluid etc but it’s not improving. I’ve also tried flaxseed oil as a dietary supplement etc I feel awful for complaining like this as I know people in the site are dealing with all sorts of problems but it just feels like once one problem resolved another developes. I work all day on a screen and have gone from the right eye being all I could see through now to the left. Has anyone got any experience of what help is out there via specialise clinics etc as I don’t know what I can do to make this better.

Hi,

You're not complaining!

This is not an uncommon complication/symptom of Keratoconus. Before we start listing things we have tried, and some do work for some people, where are you being seen, a hospital or high street optician?

Hi not at the moment. After the hydrops I was discharged so nothing at present other than self help. Thx.

OK. This is an interesting situation. Normally after a Hydrops unless you are very lucky, some follow-on treatment is required to get the best vision. Some people are very fortunate and vision after Hydrops is better than before because the shape of the cornea actually improves. For many of us though we are left with a scar which if you are unfortunate is in your field of view. As it was last November when yours happened I would guess that is long enough for things to be considered stable. So that eye really needs to be assessed to get the best contact lens which might be different to what you had before e.g. a scleral lens (which can also improve dry eye issues too).

On the dry eye specifically, there are a number of over-the-counter drops of various types. These work for some but it depends what is causing the problem. Put simply, your tears are made of two components one is greasy the other what you would recognise as 'tears'. The more greasy component stops the lighter tear film from evaporating. If there is something affecting your tear production in the right proportions things start to go wrong and you end up with great discomfort. Dry eye should not be ignored as it can lead to long term problems. The issue with the over-the-counter products is that they are either lubricants or artificial tears which can make things worse if they end up washing away what natural tears you have or if you use the wrong one. The ones often found to be effective are the Hylo products (HyloTears) and a slightly thicker 'HyloForte'. 'Theoloz Duo' is also good. These are generally not cheap so best to get them on prescription (even if you have to pay the prescription charge). An alternative that sometimes works is to use HyloNight when you go to bed which leaves a greasy film on your eye whilst you are asleep and gives the eye a chance to recover. They all take time to work so don't expect instant results.

Drops for dry eye that are really effective need to be prescribed either by a hospital or your own GP.

Personally, I would arrange to speak to your GP to do two things: get them to try a few different drops to alleviate the immediate problem and get yourself a new referral to a hospital eye department or a specialist eye hospital to get both problems sorted.

Thank you that’s brilliant advice and really helpful. I’ll call the gp tomorrow to try and get a prescription and a referral as it’s really affecting everything from driving to work. Many thanks I’ll let you know how I get on.

I have severe blepharitus as my eyes fail to produce any tears at all on their own, and my tear ducts are useless to put it mildly, Iv had procedures to try help which have failed, I use a multitude of drops from hylo forte to xylin to all sorts of other things, best tip I can give is avoid air conditioning any artififical atmospheres, try keep your eyes hydrated n rest when you are able.

You can get an annual pre-paid prescription card for £100 per year which means you can have any quantity of NHS prescriptions