Newly Diagnosed

[alexmartin]

HI all

I have recently (about a year ago now) been diagnosed with Keratoconus, and so far things have not been great; my vision has deteriorated, and the contacts they have given me at the hospital are so painful I can only keep them in for a few hours at most. I mostly wear just general glasses given to me before the diagnosis by specsavers, which don't really help, but the contacts slip and slide in my eyes and so are extra painful!! The hospital have tried cutting them down so they don't slip but this hasn't helped.

Recently, over the last few weeks, I have also started feeling disorientated and a dizzy feeling of loss of equilibrium, and am not sure - is this a symptom? The KC is worse in my left eye than right.

I wondered how others cope with the dizzyness if this is a part of the condition?

Thanks in advance for any advice,

Alex

[Anne Klepacz]

Hi Alex and welcome to the forum!
Do the hospital optoms know that their efforts to improve your lenses haven't helped? It can take a while to get the best prescription and fit with KC lenses, but there are now a variety of lenses to choose from (though not all hospitals have the full range) so it ought to be possible to find lenses that are comfortable for you and give you better vision. There are scleral lenses which cover the whole eye, and so can't slip and slide, there are special soft lenses for KC such as Kerasoft3 or Acuity SoftK, there are hybrid lenses and mini sclerals, as well as a whole range of the rigid gas permeable corneal lenses that most people are fitted with. So do go back to the hospital and ask what other options they can offer you. If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you the DVD of our 2007 conference, which included a talk on all the contact lens options, as well as other developments in KC.
As for the dizziness, that could be a result of the confusing images I assume you're getting when you wear your glasses. But of course, it could be unconnected with your KC, so do go to your GP to get it checked out. And if your current hospital really can't help, you can always ask your GP to refer you to another hospital for a second opinion.
I hope you manage to find a solution soon.
Anne

[Andrew MacLean]

Welcome from me too!

Don't lose heart; there are many lens types and materials. It may take some time but there is every reason to hope that your lens clinic will find the right combination for you!

Every good wish.

Andrew

[alexmartin]

Thank you both for your nice welcome.

I will continue on with the lenses and hope I find a combination that suits! As for the dizziness, I may visit my doctor regarding this and see what he thinks.

Thank you both again, and I look forward to speaking in the future - Alex

[Andrew MacLean]

All the best, Alex

Stay in touch.

Andrew

[Lynn White]

Alex

It is not necessary to be in pain with your contact lenses. If they hurt, then ask for something you can tolerate. There are many other types of lenses - so please do ask about them!

Lynn

[rosemary johnson]

Hi - and welcome from me too.
Can only echo what the others have said - either a change of fitting of lens, or a different type of lens may well be better.
As regards the dizzyness - it's possible to get this from po poor cision, and in particular if the vision in each eye is very different. If one eye sees much better than the other, the brain can get confused, dizzy, headaches, etc. One reason is because it affects the ability to judge distances.
DO you find it happens at particular times?places? - when you look down, for example, or are going downhill?
Does it happen when you are sitting still, or only when you're moving? Can you move under your own control but get carsick very easily if someone else is driving?
There are many things that can causedizziness or disorientation problems, ranging including changing eyesight/out-of date specs and ear infections and others.
Good luck getting it sorted out.
Rosemary

[alexmartin]

Hi rosemary

I find the dizziness affects me randomly, but recently seems to be all the time. I Notice it's worse when it's very bright and there is a lot to take in ie lots of distances. I find it eases when I am a passenger in a car.

Thanks again for everyones advice

Alex

[rosemary johnson]

Could be a problem with your rain having difficulty making one picture of the world from very different inputs from each eye.
And the harder you need to try the worse - eg. if you're driving, you need to judge distances right from the next car.
Certainly worth discussing this with your eye clinic.
DO mention to GP as well, as there can be many causes of problems in that ball park.
Good luck
Rosemary