UK Keratoconus Self-Help and Support Association

A few years ago , I was at a KC group conference, when someone (I know not who) decided to get some pictures of the conference having its coffee break.
FLASH!
I was surprised that anyone woudl use a flashgun in a room full of people with a condition known for making people very light-sensitive.
I was even more surprised that most of those present were completely unfazed and I was the only one near me who was screaming in pain.
A few years later, on one of the KC Group sponsored walks, I was again surprised I was the only one to be yelling in pain when someone's camera accidentally flashed at the group of walkeres.
Those present were gently trying to convince me this wasn't just "normal" KC light sensitivity and I should get to see someone about it.
SO next hospital apointment I make a point of stressing this, and the person I saw - not the usual one - said she'd arrange fr me to get an appointment to look into it.
May 2nd last year I went to that appointment. Got called in by young lady whose name I don't know who asked lots of questions about history with KC, allergies, etc, peered at me down slit lamp, try to look at my retinas with one of those "glass pebble" magnifiers which make those vertical arrow slits that make the indside of my head feel like it is being set on fire (like a boy scout starting a camp fire with a handful of dry leaves and a magnifying glass.
Consultant swans along like a deity descending from MOunt Olympus to see how th eminions are doing, has quiet chat with his assistant, sits down at sit lamp and says "May I see?" and peers at my eyes down it, then sits back and says:
"bothyou eyes are now in a corneal graft is indicated. We're happy to offer you one or both. Let us know if you want to go ahead and which eye you want done first."
At which stage I fell off the chair and through the floor in shock and completely forgot I was supposed to be there asking about light sensitivity.
Almost 9 months on, and wondering if having a graft under local would mean lying there in agony from the bright lights, I remembered this it.
The one sensible bit on conversation with the...... supply epithet.... on op day was tothe effect he thought it was nothing to do with my eye; that it happened that people complained of light sensitivity, there was apparently nnthing wrong witht heir eyes and the problem was in their optic nerve, or else the part of their brain that handles the optic nerve signals.
SO that would be not his remit but the preserve of a neurologist.
"Oh," I said, "and can you refer me to a neurologist about that directly from here?"
"Yes," he said, by - admittedly in my cmpletely dehydrated, befuddled, splitting headachey, can't-think and legally non-competant state, I thought he was just saying that to get me to shut up and be a compliant patient and gree to being knocked rightout, despite being convinced it wasn't safe, so he could get on withinstalling his precious embroidery exhibition.....
Nearly fell off chair in surprise again when new consultant's deputy said they had special eye-neurologists in house and it was quite simple to send me along the corridor.
finally had said apointment along corridor this morning.
Called in y young lady assistant, asked my lots of questions about history with KC, allergies, migraines, neck injury accident at work, and about op and what I'm still coninvced is bypoxic brain damage it caused.
Did lots of tests of field of view and moving eys round following red pin head, and peered at me with little gadget (nope, not slit lamp).
She asked about the hallucinations. Did I, she asked, she flashing lights, or arrows>
I told her what sort of hallucinations.
She looked suitably nonplussed.
COnsultant swans along the corridor to see what the mere mortals are up to and assistant gives him potted, approximate, summary.
I'm glad someone finds it amusing to have to give up going to Mass because of the number of people who take flash photos in church these days.
Verdict seems to be, I'm just hyper sensitive.
They say they can't see anything wrong with the back of my eye. SO the A&E and glaucma guys tell me.
Ditto with the optic nerve. I suppose that should be reassuring.
I'm just light sensitive.
The bit of my brain handling the optic nerve signals is just reacting in a hypersensitive way.
It just ahppens.
People with other eye conditions can tend to be very light sensitive too but it isn't the KC that is making me sensitive.
I say that's what I've been saying for years, when other people have been trying to tell me it is.
The only thing to do is to avoid the light ... like, get some dark glasses.....
Errr, excuse me! Been doing that, and the wide-brimmed hats, for years. It's my eyes that don't work too well, not my brain! (apart from the balance, that is....)
Trying to tell me I should try to go on haing a life. What, when so many of the things I used to do, or might like to do, would be full of people popping flashbulbs without a second thought. Or even a first one.
SOmewhat concerned someone in that section shouldn't know any better than to ask me if dark glasses wouldn't help with the flashbulbs - surley they should know enough to realise why that's such a daft thing to say!
Suppose it's good news they can't find anything dire amiss.
BUt just think! I could have stayed at home this morning and done a whole mound of laundry and washing up.
Also somewht alarmed to have young lady tell ing me she wanted to know why the vision in my right (grafted) eye was so bad.
Errr, 'scuse me???? This is the oh-so-precious graft in what's left of my eye, that's caused so much damned grief and everything, and you want to know why it's so BAD??? Are you telling me that for a graft, this is really, errm, "disappointing"???!!!!
Well, maybe needing a pinhole to see the top letter is below par after 8 months, but she could have phrased it better.....
Rosemary

Pre-graft I need things to be brighter to be able to see and it is only know things have deteriorated after 20 years that I now find things a tad bright on occassions.

On the committee we have one person who is more light sensative than me and wears dark glasses a lot and another who finds really they need more light.

I havefound with many conditions that patients can be categorised but not so with KC.

yes, I'm "night blind" too - find it hard to see in dim light, and need a good light to tell what I'm doing properly.
One of the desperate and depressing findings that made me think a graft might be unavoidable was not being able to read the Racing Post in the evening under artifical light (even 150W), only in good sunlight.
I can actually cope with midday sun in Africa with the hat and the polaroid shades (2 pairs if necessary) though am glad I don't drive so have to watch the road all the way (South Africa and Swazi dirt roads are bright red).
It's sudden bright lights - and flashbulbs are the worst! - and having to look at light sources that get me .
Or contrasting lighting - like sitting in the gloom in a hospital waiting room, looking at a bright light pool over the receptionists' desk (as the poor receptionists have to see what they are working on) that get me.
Similar effect from going to cinema, or stage lights at theatre or concert hall - or floodlights at eg. a rugby match.
Of course they are plenty worse people - one guy I know is albino and super-sensitive - he can't go out of doors in daylight at all. Can't remember whether it is speech outpput or a Braille display he uses on his computer, but he complains the access technology makers don't want to recognise him as vision-inpaired and try to make him pay VAT, because his visual acuity is good, but he can't look at a screen.
Rosemary

i am really, really annoyed!!!!!
One of the sets of tests they did at the eye hospital on Friday was checking my facial muscles were woring. OK, fair enough..... if not, that may relat to eye problems.
The first was to try to squeeze my eyes shut while she tried to pull th eeyelids apart. Others were trying to open my mouth while she pushed my chin up, and turn my head each way while she resisted the movement.
The one of trying to turn my head to the left, I felt an "ouch!" at the time.
I think she has put my dodgy neck out again!! - or, un-aligned one of the chiropractor's alignments.
I've been feeling all stiff round the neck and shoulders again, and keep getting odd twinges round under the left side of my jaw.
What's worse, it is giving me shifting, on-and-off toothache!!!
I think the nerve round the jaw that makes the teth feel they're standing on end - like if you suddenly bite into something very cold - is being caught in the kinked neck - and probably rubbing and getting inflamed, which is why is gradually getting worse and I didn't feel it when I was still in the hospital.
It comes on and off depending how I move my head, and hold my head and shoulders. But I haven't quite sussed how to "turn it off" again.
Probably takes a while to subside after I get into a more comfortable position, actually. Meanwhile kkep waking up in the night with various areas of nerve pain, reaching for the neurofen again, and spending ages trying to get comfortable.
I don't suppose she meant to do it - or even had a clue it was a possibility.
Though I do think, particularly after I@d been tellin gher all about an old neck injury an dhow an eye op had set it off again, she could have been a bit gentler.
I am mighty pissed off about this, and the regular on-and=off jangling nerves are driving me round the twist!
Rosemary

Rosemary,

I was not suggesting for one minute you were blind, what I emant was in normal lighting condisions, there ia a person on the committee that feels more light is needs and another who just finds it too bright. Reflecting the extremes of light sensitivity we can get with KC.

If it's at all relevant, I am fairly light sensitive, despite not having any sign of KC, though nothing like as serious as being unable to bear flash cameras. I do find it necessary to wear photochromic glasses in daily life, and there were times as a child when I didn't have sunglasses when I had to cover my eyes for the next half hour - I remember a tennis lesson when, after serving and looking up at the sun I couldn't open my eyes for the rest of the lesson (phew - what a good excuse), various school playtimes I cowered in the shade, and there's a photo of a family gathering in my grandmother's garden with me aged about 4 holding my fists over my eyes because I'd looked at the camera which had the sun behind it and couldn't look up again.

There are indications that I may be highly sensitive in other ways - e.g. I think I'm a super-taster (good excuse not to eat sprouts??) and once when I tried acupuncture I found it intolerable and the acupuncturist muttered something about maybe I'm just sensitive. I've been accused of being oversensitive about other things too, but mostly by people who were overstepping the bounds of basic good manners and didn't like it when I put them straight.... I also seem to hear things that no-one else can, and can't bear loud music.

I once read that they way to deal with light sensitivity is absolutely NOT to avoid bright light, as that just makes you more and more sensitive, but to train yourself to tolerate it gradually. It then went on to say things about light being essential nourishment for the eye - which I was unconvinced by.

Hilary

GarethB wrote:Rosemary,

I was not suggesting for one minute you were blind, what I emant was in normal lighting condisions, there ia a person on the committee that feels more light is needs and another who just finds it too bright. Reflecting the extremes of light sensitivity we can get with KC.

Hi Gareth! - and sorry if I wasn't clear.
I was trying to agree that some people need a "good light" to see what they're doing - because I do too!
...... as well as being hypersensitive to sudden bright lights - which confuses some people.
"Night blind" is the term they use for seeing poorly in poor light.
I can understand the problems with the committee. We are indded all so different, aren't we?!
Rosemary

Nothing like the Neighours From Hell living above one to make one hypersensitive to any pin dropping above for the next 2-3 years!!!!
I thought the advantage of being a supertaster was getting those jobs in the wine/beer/Marmite/chocolate business.
Or in your case, cider or whisky.
Not that I'd be at all interested in trying to scrounge free samples if you were, of course!!! (Well, not of the cider!)
No, seriously.......
OUtdoors in African midday sun, I can cope with - with the shades, and time to stand blinking in the doorway when I go outdoors.
Though a 400km a day drive in it, and I@m in danger of serious migraine if I can't discipline myself NOT to look at the road. (Not to mention dehydration, but that's another story!)
Flashbulbs are sudden so you can't adjust......
Actually, flashbulbs in African (or even Ascot) midday sun aren't too much of a problem - it's in, eg. moodily lit restaurants/pubs that they're worst.
I seem to be getting oversensitive to many things these days - steroids being only the latest in a long line. I certainly wasn't allergic to horses in my teenage years, nor to cats, 20 years ago. Etc. Didn't need asthma inhalers for more than first half of my life, didn't get migraines till age 31.....
What, I wonder in trepidation, will be next????
Rosemary

Today's news:
I have being out of my tiny mind with frequent nervy twinges in my neck; my left ear and eye have been feeling sore and itchy; and the toothache is driving me crackers!
I suppose Duke would be delighted - I can't eat anything much, and only very soft things, cos of the pain when I bite - even trying not to bit eon the left side.
And the neurofen is gving me..... well. we won't go there.
Rang up the chiropractor's office this morning. Sue (receptionist) very kind and supportive and slotted me in for late afternoon. Oh, what a contrast with the NHS!!
Sat in the office shuffling paper about this morning and sorer and more cross and bothered. And same at meeting this afternoon.
Got to Terry's. Running 10 minutes late - unusual for him. Hospital eat your heart out.
NOds very knowledgeably when I tell him how p'd off I am about this, and describe the symptoms. Says they quite often get people coming in saying their teeth have gone crazy, and it is actually a neck problem upsetting the mouth-nerve, not real toothache at all.
He does all his usual manipulations, of which usual last part is to get me lying on my back and click my neck about.
I asked which vertebrae it is causing the problem - he says he'll find out when he feels it, prods my neck and says "Oh, that is tight" and clunks cli-cli-click one way and CLICK-CLICK-yeouch! the other.
C5 and C6, he says, have got "jammed together" and that's affected something called the trigeminal nucleus, which sets off the trigeminal nerve - 2 "heads", going to eye, ear and mouth.
Neck now feels fine, head turns to side OK, shoulders OK.
Teeth still as sore as anything and still can't chew - Duke will be delighted as prospects for losing weight!!! - despite more neurofen.
Terry says nerves likely to take a while to subside, as they'll have got rubbed and inflamed from out-of-place vertebrae. If things not back to normal by Thursday, come back.
He says the test of getting someone o turn their head to the side while the docotr/whoever pushes back is a standard test for the strength of the sterno-cleido-mastoid muscles - the slantwise "rope" across the neck from corner of collar bone to ear when you look sideways.
But if someone has a strong SCM and a dodgy neck, and the other person a strong hand, the neck vertibrae can be the weakest link and get pushed out of place.
Keep doing the exercises - it needs to keep moving - and come back next time....
I shall be contacting the hospital to make REPRESENTATIONS!!!! about this.
If anyone has any practical knowledge or suggestions about how to do this, I'd be very glad of your input.
If anyone asks about pain following a graft ...... in my experience, it doesn't hurt a fraction as much as having your neck putout and your trigeminal nucleus upset by an ovr-forceful neurologist!
GRRRRRRR!!!!!!!!!!
Rosemary

Nerve is finally starting to calm down this evening after being on edge all day.
Got rice in caff at lunchtime as thought it would be only thing soft enough to eat.
Still took ages and lots of grimacing.
Manged bread and pate this evening - even a few carrot btons, though VERY carefully.
NOt sure if this is all improvement or just the neurofen but I live in hope.
Still VERY p'd off with the hospital.
And still too fragile to open this morning's post yet....... it's a visa bill.....
Unfortunately, neurofen doesn't fix that sort of painful experience.
Rosemary