pain and sensitivity to light

[Abbie1389]

hi I'm 23 and I've had keratoconus for about 4 yrs now. i use glasses and contact lenses, the contact lenses i can only tolerate for about 4 hrs at the very most due to them being very uncomfortable. during the past 6 months my eyes have been very painful i can only describe the pain as my eyeballs feeling bruised and like a dull ache behind my eyes, and they are so sensitive to light i have to drive and watch tv at night wearing sunglasses. I've seen the optician and gp who seem to just pass me back and forward to each other. the doctor has told me its an eye infection/allergy/dry eyes/conjunctitis but nothings making it any better. the opticians always ask me what the specialist said at the hospital.... I've never been referred to a specialist and I've never been to the hospital. i went to eye casualty last night due to the pain and light sensitivity being really bad and was told to book at appointment with my gp and ask for a referral to a corneal specialist. i feel like I'm being passed from one place to another and not getting any answers. does anyone else have eye pain and bad light sensitivity, and how do you deal with it? also has anyone seen a corneal specialist?
since being diagnosed I've never really been told anything about the condition or what might happen.

[Hayley]

Hi,
I get similar symptoms although not pain bad enough to ever go to casualty - poor you. I asked my gp to refer me to a specialist a few years back and since then I have been getting contact lenses fitted by an expert at the hospital which had meant much better fittings so that I can wear them for longer. I find the pain I get is from eye strain when I'm relying on glasses or nothing. There are so many different tyres of lenses to try that you might be able to wear for longer than a few hours. Also they can tell you about other options such as intacs, grafts, prk laser and CXL which I am having done next week. Good luck and push for that referral!

[Andrew MacLean]

I'm afraid that light sensitivity and pain are part of the normal experience of many, but not all, people with keratoconus. My approach to the light sensitivity (sometimes called photophobia) is to wear stylish prescription sunglasses. Or, when I don't really think that I can carry off the sunglasses trip, I just wear broad brimmed hats. My latest acquisition is an Ausrtalian Barmah bush hat, but I have a small collection of hats of varying degrees of formality,

[Lewis-W]

I had my RGP lenses fitted by Cindy Tromans at Manchester Royal Eye Hospital (privately) about 2 years ago, and since then (disregarding the "wear in" period) I have had no real problems with them.
The only issues I've ever had is when the KC has progressed in my bad left eye which resulted in my lens causing me slight discomfort (the "steepness" of my cornea changed, so the lens was pressing down on to my cornea a little too much).
However, a quick re-fit of the left lens solved this problem and thing were all good again.

Luckily, I can tolerate the lenses for long periods of time (20+ hours).
However, if it got to the point where I could not tolerate them for longer than a few hours, I would probably look in to Kerasoft or Hybrid lenses (usually recommended to those who struggle with RGP lenses - there is a lot of information regarding these lenses on the forum).

Is this something you have considered?

[GarethB]

Abbie

What you describe is very similar to what I experienced back in 2004 and what it came down to was that I had developed an intoelrance to the RGP material. The change wasn't made until my wear time was down to about an hour of uncomfortable lens wear per day, my hospital visits were becoming monthly with a visit to eye casualty every couple of months.

My lens fitter at the hspital was initialy reluctant to support me trying soft lenses, but once fitte with soft lenses for KC my life completely tuned around. I still have dry eyes but because of the soft lens material, it is far less of an issue meaning that I can wear lenses all my waking hours (16 hours on average but I can wear them for over 20 hours if needed). It has taken a couple of years but the light sensitivity has now reduced to the point I am no longer light sensitive. Soft lenses have aslo benefited me in other ways, with RGP lenses, I could only get 6/6 vision which I know is excellent but when I had a bad eye day it would drop overnight to 6/15 below the driving standard. The soft lenses give me 6/5 and a bad eye day for me is 6/6!

I can now enjoy trips to the beach and if the wind gets up blowing sand about I only get the same discomfort any normal person would get with dust in their eyes, my soft lenses means that no dust or grit gets beneath the lens.

Now I am doing things that I stopped doing back in 1987 when I was frst diagnosed!

Unfortuantly there is no guarentee that these or any othe rlens would work, it is an unfortunate case of trying each potential solution to find out what works best for you.

My personal opinion is that anyone with RGP lenses is better off with soft lenses for KC, I also find them far easier and cheaper to look after.

[TristanHolmes]

Hello!
I have a large scar over my left pupil which really scatters the light and causes a lot of uncomfort. Unfortunately the light always seem to get over the frames of sunglasses so also wear a thick rimmed hat over the top. I am a sclero lens wearer and my eyes can become dry using them for long periods of time if using sodium chloride solution, but their is another product i use called celluvisc (Cant remember the correct spelling) which is more oily in consistency which cushions my lenses nicely, however air bubbles can become a bit of a pain. In my opinion you should get reffered to a specialist as soon as possible. There are lenses out there that can be fitted correctly to the shape of your eyes, although they may need to be refitted regally. On average i get a new pair of lenses fitted every two years, but this has been accelerating the last few years

I hope this helps alittle

Tristan

[DAWNANN]

Hello. I suffer light sensativity and I have been told its due to a scarring on my cornea due to a recent viral outbreak, im on tapering steroid eye drops as they also diagnosed me with allergic conjunctivitus Not sure if I will have to live with light sensativity or if it will go away I guess time will tell. Good luck and if you experience pain seek medical advice x

[TristanHolmes]

Hello!

I also get that throbbing pain behind the eyes! I have a very large scar over my left cornea that lets in the light and causes this pain just before getting a migraine which generally lasts about four days where in this time i have to support my weight on the walls just to get to the lav. When this starts to happen regally its usually a sign that the strength and shape of my contact lenses may need changing. I find when going through this period it sometimes helps to leave my contacts out for a couple of days to give my eyes a rest and just let someone else take the strain (i.e make cups of tea). That's what friends and family are for after all and we shouldn't feel embarrassed to accept help. I used to!!!!

[alison falshaw]

HI Abbie,

I can only repeat what others have said the pain and discomfort and sensitivity to light is part of KC. I understand completely that the pain is so severe you have no option but to go to casualty.

In my opinion/experience you will only get the best treatment if you are referred to a corneal specialist at the hospital, and also the optometrists dept at the hospital are the best....they, unlike most of the high street are used to seeing allsorts of eye disorders and probably KC being the condition they deal with the most.

Not sure where you live but i can completely recommend the eye Infirmary at Sunderland.

good luck..keep us posted with how you are doing etc.

ali