Eye ache

[Richard C]

Hello everyone, it's been very interesting reading through your postings and I wonder whether you can empathise with my daily nag.

I used to get eye strain when reading at Uni so I visited an optician to get some reading glasses. He told me that I might have an eye disease called keratoconus ... and that I might go blind at some point ("cheers, thats very tactful of you"). I had it checked by an expert in an eye hospital soon after and it the disease was confirmed. That was 4 years ago (now 25) and I supposed I have to consider myself quite lucky so far because it hasn't developed very far and if really necessary I can get by okay without wearing my lenses.

However, my biggest problem is the eye strain! It's not necessarily a headache, or a stinging feeling but more of an eyeache that is very uncomfortable. If I go a few hours without the lenses then I become tired, listless, moody and just fed up. The worst is when I take the lenses out at night because the rest of the evening is a bit of a struggle.

A pair of glasses in back up would be good, but when I tried a pair a few years ago they seemed to only give me a headache. Do you think I should try again with glasses though, especially if the KC progresses. Worryingly, as a teacher I'm concerned about my sight deteriorating, the kids would have a field day: "Who threw that?!". Will I have to change my career? Well, a bit of carpe diem wouldn't go amiss I suppose; I leave in a week to go travelling around the world for a year. Does anyone have travel tips KC style? I have bought a spare pair of lenses to store dry in my rucksack and apparently solution is widely available in cities.

Richard.

[Andrew MacLean]

Richard

I guess you are going to get tired of hearing this, but "it depends!"

some people with less advanced KC can manage with glasses fairly well. If your KC is more advanced then glasses may not improve things very much.

As to going blind with KC, well I did before I had my first graft (right eye done, still waiting for my left). "Corneal Blindness" is not the way I had expected it to be. In truth it was like trying to look at the world through a series of lenses, all at right angles to each other. I could see, but I couldn't make anuthing out.

Then I had my graft. At first things did not improve very much, but when the first lot of sutures came out (I had 16 in all and they came out in two groups of , I did see a marked improvement. the last surutes came out and after a bit of settling time I could see well enough to drive again (with glasses).

Well done on finding us, and welcome to the forum. All the best.

Andrew

[Matthew_]

Hi,
I can sympathise a lot with that. I have not yet managed to get a contact lens fitting (only diagnosed last month) but I definitely get tired very quickly. Before I knew about KC, I thought I had some sort of mystery bug that left me wasted by the evening. I had some sort of tropical disease in Iraq in 2003 (suspected malaria), which I thought was responsible. I had every blood test under the sun. At least I know that am actually medically fit apart from my eyes and I definitely didn't have malaria! Even after I was diagnosed, it took me ages to put 2 and 2 together (4?). It just didn't seem possible that eyestrain could result in such desparate fatigue. Now I have worked out some strategies:-

At work, I avoid the PC if I can. I scan through my e-mails and use the phone to reply whenever I can. I employ MBWA (Management By Walking Around) - Afterall, management is a social process!

When I do have to type, I use the magnifier built into the OS (under programs/accessibility) and also in the Mac OS (there's a whole thread about this on an earlier page - "Help at Work").

I am also dictating a lot of my notes into a dictation machine (and hoping to get some software like Dragon to transcribe it for me).

I am avoiding driving long distances and at night.

I am wearing sunglasses a lot (looks a bit silly sometimes on the West Coast of Scotland).

I use soft lenses through the day, and use glasses at night. They do not sharpen my vision at all but I can see a wee bit better and I think that helps with the fatigue.

Don't how much of this applies to travelling, guess you won't be using a PC all that much but I would definitely take the glasses.

I am sure these KC vets can tell you more!

[Val G]

I feel that I have constant eye strain (15years since I was diagnosed, doing close work in a lab) and I've got VERY deep furrows between my eyebrows to prove it. Do you think I could have Botox on the NHS?!

[rosemary johnson]

I gave up bothering to wear glasses when th eclearest thing I could see wearing them was the dust on the lenses.
I guess it's always worth trying to see if it's possible to get any that help.

One of my mum's old college friends married a man who was a school teacher. He was taking a cricket practice one day (it was one of those schools where everyone got roped in to help with sport) and got hit on the head by a cricket ball.
The blow knocked him unconscious.
When he came round, he couldn't see a thing. At all. And never did again, from that day until the day he died, IIRR in his late 70s, a couple of years ago.
He went on teaching until he retired at the normal sort of retiring age.
He had someone t read out the boys' essays to him - for marking homework, etc.
He seemed to cope OK in the classroom - no riots, etc, I mean.
But maybe he was lucky to be working when and where he did - and modern kids would be more disruptive.
[And how's that for a tale for anyone shocked with finding they have KC??!!!]

Travel tips: oh gosh, where to start?
As regards solutions, it must depend where you are going. Modern cities I'd expect to have them, though the range and brands may vary quite a bit, and the prices.
Whenever I've gone away, I've taken what I expected to be enough to last me through. But then, 3 and a half months has been my maximum, not a year.
Beware daft rules about not being able to take on board aircraft anything that you might use to open tubes/ampules of fluid - particulary daft if/when eyes tend to dry up in aircraft cabin aircon. I'm told the answer is to give the tube, etc, to one of the cabin crew and ask them to open it for you. How well this works I don't know, as I've gone with an open set, and only taken lenses out on board, and not put them back till we've landed and I can go and put them back in the ladies at the destination airport.
If you think you might be doing all or part of a flight sans contacts, do book in with the airline as a Special Needs passenger - explain the problem and what you need (presumably, guiding about cos you can't see where you're going) and make sure you get it.
Beware dodgy water supplies. I've been known to clean - well, wash off the cleaner (RGP sclerals) in either a bowl of water that's gone through a filter jug or even bottled fizzy mineral water where the stuff coming out of the tap was lager-coloured! Mostly I just use the tap stuff, just as I normally drink the tap stuff, and have had very few, if any, problems.
take paperwork describing what all these little bottles, etc are, any prescription counterfoils, etc - may help to get equivalent supplies, and if you are going to any draconian regimes, to prove these are legit and not banned substances.
Make sure your travel insurance knows about your KC and will cover you. I've used Boots Gap Year policies twice, and they've just noted both the KC andmy asthma and said they were fine, no problem.
I seem to remember threads previously about flying with KC, so do have a hunt about for those, and do ask any more questions.
Rosemary

[Kirsten]

Wow - this is the exact thread i've been searching for.
I can really associate with you Matthew. For years i've been suffering from extreme fatigue, which I feel is getting progressively worse. It's the same kind of thing you describe Richard, the achey feeling.. not a sharp pain but a dull tired kind of ache. My eyes are all red and inflamed also which wouldn't help matters!
I've also had blood tests because I thought that my tiredness was due to some other health problem. Nothing has showed up though...
I did ask my optometrist if keratoconus causes tiredness and got a response of no - but I guess like anything with KC it's individual.
As far as the question about glasses goes, I guess that would depend on how bad your KC is. I found when I used to have glasses they would give me headaches and cause dizziness whenever I took them off or put them on.. it was like there was always some transitional phase!
Good luck with everything.. I can't offer any travel tips other than that if you have any preferences to solutions, drops etc then stock up as you may not be able to get the exact one you're after.

[GarethB]

The problem with looking ata computer or tv screen is that your blink rate goes down and the eye starts to dry out and eventually we get what we call eye strain.

Regular short breaks is better than one long break.

At work I have a time to remind me when I have been at a pc for 30 minutes. At home, everyother commercial break I do soemthing differnet and then come back to the tv. If it is a film, looking away for a minute or so means you do not really miss anything.

Since then eye strain is rarely a problem.

[Damien W]

Like Gareth, I set an egg timer to let me know I have been at the PC for 30 mins. This reminds me to get up and walk around a bit, has helped my eye strain heaps. At the same time I put wetting drops in (one drop in each eye), this ensures my eyes don't dry out.
I've taught myself a technique of taking notes from listening to the speaker, not reading boards or watching the whole PPT presentation. I haven't been out of the top 10% since using this technique
As I'm not concentrating on the board, slide show some distance away, I have found it also helped eye strain.
Another technique I use is to "stare into space", looking at the board, but not really looking (shows your interested, but keeps eye strain down) if that makes sence, but you have to listen more intensly.

Damien

[Andrew MacLean]

My mac tells me when I have been sitting at it for 30 minutes. In fact it gives me a read out of the time every 15 minutes. This can be disconserting if somebody comes in just as my computer speaks the words, "It is 8.15". One caller asked, "How long have I got?"

[Matthew_]

Thanks guys, I am definitely going to use those tips. How do you set the egg timer thingy?