UK Keratoconus Self-Help and Support Association

hi all new to this site was diagnosed with KC 15 years ago in my right eye.site deteoriated over the years which has left me with blurred vision.it has stabilised the last few years.left eye is fine.dont have to see my specialist for another 2 years. last time i saw her 12 months ago she mentioned the possibility of a cornea graft.tried the hard lens but stopped as they irritated my eyes.the last 6 months i have been suffering constant daily headaches and sore eyes daily my gp sent me for an mri scan which was fine.dose anybody else suffer the headaches and how do you stop them.making an appointment to go back to my specialist to see do i need a cornea graft.

corky

I had my first graft when I became unable to wear contact lenses.

Keep us posted.

All the best

Andrew

I used to prior to diagnoses get a lot of headaches, ended up having a CT scan prior to diagnoses as noone was able to pin point what was causing all the head pain. I am getting headaches again the last few weeks. x

got an appointment this from the hospital this morning for next friday to see eye specialist again .hopefully something can be done to solve the headaches.

Hello Corky and welcome to the forum,
It sounds as though the vision in your two eyes is very different, which could well be the reason for headaches as the brain struggles to make sense of varying images. Have you only made the one attempt at wearing contact lenses? There are quite a few different lenses for KC these days so there may be a different type of lens that would work better for you. If you'd like more information on the options, do e-mail your postal address to anne@keratoconus-group.org.uk - there's various information we can send you.
All the best for your appointment next week and do let us know how you get on.
Anne

tried the hard lens about 7 years ago on and of for 12 months.but was never offered another type.will ask about different ones next week when i go .thanks for the answers

Corky,

There is a high probability of your KC being a cause of headaches, as trying to focus through the distortion causes the focussing system to work overtime. I do urge you to investigate other forms of contact lenses before even thinking of a graft, if the only reason you are offered a graft is that you can't wear RGPs. Grafting should be the last resort option because although it can be extremely successful, for the percentage of people where it goes wrong, it can be a real problem. In any case, a graft will take at least a year to settle and you will likely still need to wear contact lenses afterwards.

You may also not understand that there are many other forms of treatment and management available for KC outside the NHS. At the moment, the main management within the NHS is still contact lenses and grafts. Other treatments (CXL, INTACs, IOLS) are very slowly filtering through but are by no means mainstream here.

Do research all options before going to the graft option, simply because this step is irreversible.

Lynn

thanks lynn.i will find out next week when i go what other options i will be given.i will try anything before i even think of a graft.i will ask about the various types of lenses mentioned on the forum.

Hi

Before her latest graft, my wife's astigmatism was almost at right angles to each other. The strain of trying to match these two images up in her brain gave her violent headaches every day and the really bad ones often would turn into migrains. Since the op, because she has no effective vision at all in the grafted eye, the headaches have vanished except when we have been to the eye clinic and she has been on the slit lamp. That seems to give everyone a raging headache.

Bob

thanks bob.thats exactly how i feel the headache gets worse every couple of weeks and gets so bad it feels like a migrane and can last anything up to 10 days,before easing off