UK Keratoconus Self-Help and Support Association

Hello to you all out there..

I am a new member, diagnosed about 10 years ago with KC but only now really understanding what the condition is and learning about alternative treatments - only because my tolerance level of lenses is at almost zero!!

I have been under the consultants at my local hospital - James Cook University Hospital in Middlesbrough since being diagnosed and have recently been referred to the specialist unit in Sunderland. They have so far advised that my right eye is possibly too far advanced and the cornea too thin to take cross linking and or intacs, and suggested that the only option available is a corneal graft. For the left eye they have suggested intacs and cross linking and have applied for funding from my local PCT.
Although I have today learnt about scleral lenses which have never before been offered to me - I may suggest this before proceeding with intacs or cross linking.
In the meantime my tolerance levels are very low - I havent worn lenses for around 5 -6 months. I have exzcema, all year round allergic rhinitis and a touch of asthma all of which contribute to the pain and discomfort when wearing toric or rgp lenses. The pain and discomfort is not worth the poor quality of vision - I constantly squint, eyes are watery, sore and sting - even just wearing spectacles. I use optanol drops in my eyes, take fexofenadine tablets and use nasonex nasal spray daily. Just lately I am suffering with headaches above my eyes and feel as though my eyes are being ripped out. Does anyone else have these symptoms and what do you take to relieve the pain??

Any help and advice would be gratefully received. I am also battling with my employer. I work on a pc all day and have floor to ceiling windows behind me which provide me with an enormous amount of glare - so much so that my screen is like a mirror most of the day.

I need help you may say!!

kind regards Alison

Hi Alison,

I'm sorry to hear about your suffering. I too suffer from some of these things, but it seems as if you have been having a really hard time.

The good news is that I managed with sclerals quite comfortably, after being totally intolerant to normal hard lenses. Because they are over the white of your eye I could hardly feel them - the only exception being when I had hayfever in the summer, which I took Piriton for.

Just my experience. Unfortunately over the years my eyes have become a bit intolerant to them, but they worked for at least 5 years and gave me the best vision I have had to date.

Good luck with everything and I hope you can get things sorted out at work. You shouldn't have to suffer through bad conditions.

All the best.
Alice

Welcome to the forum!

I am sorry you are having so much trouble. I avoided any graft until there was really no choice left, and have now had two: having put it off for so long, I have become an advocate of the graft where it is appropriate.

It is good to know that your ophthalmologist is looking at other options for your non-graft eye.

Meantime, do print off the employers' leaflet from the site and pass it to your boss. Many employers are unaware of the trouble experienced by people with KC, and armed with the necessary information are only too pleased to be accommodating.

All the best

Andrew

Alison!

You do seem to be having lots of problems! The main one seems to be general over sensitivity. First of all are you using any lubrication drops? A good one to try is Systane, or another gel based preparation as they stay in the eye longer. Systane is available at opticians and pharmacies and can be obtained in non-preservative form. Such drops need to be used very regularly to be effective. If your eyes are very painful, then even a ointment lubricant like Lacrilube may help, though sometimes people can find this a bit gritty. Sometimes hot compresses can give relief from pain.

It is also a good idea to make sure you are properly hydrated. Many people with keratoconus have reported reduced discomfort when they started drinking a lot more water.

Sclerals are a good idea to try BUT if you are at all considering cross linking, if you delay it in the left eye, that then may get to the point where you can't have either cross linking or intacs... so its a trade off.

The glare at work is certainly not helping. You may find dark glasses help but really, an employer should supply window shades so that your screen is not a mirror!!! You may also find that a small humidifier on your desk helps to reduce the effects of drying.

I suffer from headaches because of my eyes pretty regularly too. I really have a headache everyday pretty much. I've gotten used to having them to some extent. I also get soreness in my eyes like you mentioned. I wake up with headaches a lot too. It seems to me like my eyes would feel good after resting them, but I still seem to have them right away a lot of mornings. I take Ibuprofin sometimes, but it doesn't help much. I've found that Excederin works the best at getting rid of them temporarily, but I don't take that anymore because all of the caffeine makes my heart race and makes me feel strange. If there are any medicines that people take for headaches with no caffeine that work well, I would be interested in hearing about them.

Best of luck with your KC, Alison

Thanks Timtim,

its reassuring to know that i am not the only one with headaches and achey eyes most mornings. I too take Ibroufen and when its really really bad I take Solpadol or Codipar - they contain codeine and are very effective but they also knock me out - so only good when bedtime is near - or when its soo bad that I am off work.
Kind regards
Alison