Can anyone help?

[Harry786]

Hi everyone!

Firstly I want to say I’m really glad I found this place! I have been suffering for so long and thought I was the only person in the world who has KC but it looks like there are more of us

Anyway I was wondering if anybody has gone through something similar to me or someone could advise me on what to do?

I first got KC at the age 16 and was given contact lenses. They worked great and I didn’t have any problems. However over time my eyes have deteriorated so much, i am constantly battling sore/dry eyes, uncomfortable contact lenses, watery, bloodshot eyes and the likes. I struggle to walk down to my local shops without my eyes watering. Even if it is a windy day my eyes water (even if I have sunglasses on) so much that my eyes refuse to open and become extremely bloodshot. I have also become sensitive to light and now for example can’t take any photographs or even look at the a computer screen for too long.

I have been to my opticians and we have tried many things. For example he gave me a new pair of contact lenses which worked fine for a few days before my eyes went back to how they are now (sore, watery and uncomfortable to wear etc). He also prescribed me with some eye drops which again have had very little effect.

Has anyone been through the same? Or can anyone advise me on what to do? I am really at wits ends on what to do. I have told my optician my problems but he just seems to sweeping it away as "its quite typical for someone with KC"

Look forward to hearing your response.
Many thanks!

[Andrew MacLean]

I'm afraid that dry eyes are a common side effect of contact lens wear. I use Clinitas Soothe to alleviate this problem.

Every good wish and welcome to the forum.

Andrew.

[longhoc]

Hi there Harry

Sorry to hear you're having a rough time right now. That's one of the big problems with Keratoconus -- one day you're fine, managing quite happily with, say, RGPs. The next, pain, poor vision and struggling for answers. But there's an awful lot that can be done. Few situations are unsalvageable.

First question -- when you mention "opticians", do you mean a high-street optician ? There are many really conscientious, skilled and helpful optometrists who practice in the regular multi-chains and independent opticians outfits. Many will try and help even "difficult" cases such as Keratoconus patients, which I think should be applauded. And I think it is a really good thing to manage the condition locally wherever possible -- the NHS isn't ideal in many situations where frequent re-prescriptions are needed.

But that said, when your Keratoconus progresses it might be a good thing to see an optometrist who has been trained in (and has access to) more specialist lens types. Also, a modern set of measuring kit will help lens fitting and also monitoring of progression -- most high-street operators lack this. So, if you are going to a non-specialist optician, would you consider it worthwhile getting a referral to a Keratoconus-experienced optometrist, say at your local hospital ? (tell me though if this is where you're going at the moment).

Best wishes

Chris

[Harry786]

I'm afraid that dry eyes are a common side effect of contact lens wear. I use Clinitas Soothe to alleviate this problem.

Every good wish and welcome to the forum.

Andrew.

Thank you for your response. I will take a look out for Clinitas soothe when im shopping next.

I have now been given two different drops to put into my eyes so fingers crossed it will work !

[Harry786]

Hi there Harry

Sorry to hear you're having a rough time right now. That's one of the big problems with Keratoconus -- one day you're fine, managing quite happily with, say, RGPs. The next, pain, poor vision and struggling for answers. But there's an awful lot that can be done. Few situations are unsalvageable.

First question -- when you mention "opticians", do you mean a high-street optician ? There are many really conscientious, skilled and helpful optometrists who practice in the regular multi-chains and independent opticians outfits. Many will try and help even "difficult" cases such as Keratoconus patients, which I think should be applauded. And I think it is a really good thing to manage the condition locally wherever possible -- the NHS isn't ideal in many situations where frequent re-prescriptions are needed.

But that said, when your Keratoconus progresses it might be a good thing to see an optometrist who has been trained in (and has access to) more specialist lens types. Also, a modern set of measuring kit will help lens fitting and also monitoring of progression -- most high-street operators lack this. So, if you are going to a non-specialist optician, would you consider it worthwhile getting a referral to a Keratoconus-experienced optometrist, say at your local hospital ? (tell me though if this is where you're going at the moment).

Best wishes

Chris

Hi chris !

Thanks for your response.

When I said optician I meant those who work at the NHS Eye Hospital here.

I went in today to get some "better fitted" lenses and it seems to have improved my vision. I also told that I am suffering with constant red and watery eyes which sting and are sore etc. I was prescribed with 2 different types of eye drops which may help take the edge off my pain. They also checked the overall condition of my eyes and said there was no major problems (with the exception of some scarring as a result of KC).

Is there anything else I could do ?

[Andrew MacLean]

Harry, I get my Clinitas products online. (They are cheaper that way)

http://www.dry-eyes.co.uk/acatalog/Clinitas.html

The benefit of soothe is that it is preservative free. The preservatives in some artificial tears have been shown to increase dry eye in chronic use.

Andrew

[GarethB]

Been there too and got to the point that the hospital concluded that I had become sensitised to the material RGP lenses are made from and was told to put up with the one hour a day lens wear I could manage and go without lenses whenever possible.

After moving on to soft lenses for KC, dry eyes are no lenger a proble, I only suffered dry eyes when wearing contact lenses, never a problem when prior to lenses I had glasses or when I was going without lenses to let my eyes recover. Lubricatiing eye drops wroked for a while, but I tried neary a dozen different drops, trying each for two weeks before deciding if they were working until Iound one that worked for me. The ones Andrew uses did nothing for me, but Systane worked a treat for a couple of years. The othe benefit of the soft lenses is that I use less cleaning solutions, can wear them all my waking hours, no longer sensitive to light, halos round lights, glare, star bursts are so much more reduced to be barely noticeable, no dry eyes from normal use. I will get dry eye symptoms if I use a computer for hours on end but so do most people with 'normal eyes' becuase your blink rate goes down as you concentrate more. Prior to changing jobs, I could work in the low humidity areas at work which was impossible with RGP lenses.

As hospitals are starting to contract out more of their services, I have noticed an increase in high street optoms taking part in contact lens fitting workshops to learn more about the lenses that area available for KC and to further develop their skills.

[Anne Klepacz]

Hi Harry,
Just to add that as well as this forum, we produce various information about KC (information booklet, newsletters, DVDs of the conferences we organise). So if you'd like any of that, just e-mail or PM me your address and I'll put it in the post to you.
Good luck!
Anne