UK Keratoconus Self-Help and Support Association

Dave said:

Hope we all had a good christmas and looking forward to a
healthy new year!


Thank you! - and the same to you, and everyone on here.


Dave said:

The worrying thing has occured over the last few weeks. I have a constane numb pain behind my eyes and often some form of head pain. Yesterday I completly panicked myself when seeing loads a bright flashing lights with my left arm going numb and my field of vision closing in. Was told by hospital that I was now a
member of the migraine club aswell as KC, nice!

Oh yuk! Very nice, indeed. And sorry to hear it - both the
headaches, and the panic, which I can well imagine.

Don't suppose it's any consolation, but I too found myself in
the same club in my mid-30s, all of a sudden. Except at the
time I thought it was some form of food poisoning and swore I'd
never again eat a beef sandwich from a racecourse snack bar!! -
no flashing lights, just intense headache and throwing up. With me, it seems to be a combination of factors that trigger them.
One is bright lights, and I gather bright/flashing lights
(including camera flashes) can be a trigger for other people.
SO maybe, KC people being more sensitive to light than average,
we're vulnerable to having that develop as a trigger. Another
factor can be stress... so maybe worrying about our eyesight
and/or headaches can be part of what sets them off too.

[Other factors I find are: tiredness, hunger, dehydration, heat, caffeine withdrawal symptoms and putting milk in coffee, but not alone, only in combination. Why these should suddenly start to
have this effect in mid-30s when never been susceptible before,
I can't imagine.]

It's never occurred to me before to think the migraines and the
KC are linked! - I'll now have to do my best to think of
something else and not get paranoid!! - see above: stress=trigger!

The things I've found help are: 1. identifying trigger factors
and avoiding them, eg. I now refuse to try peering at a bright
computer any longer if it is painful, and I politely decline all offers of white coffee; and 2. learning to feel when one may be
coming on, and nip it in the bud, by having some Neurofen and
going to sit/lie down somewhere dark and quiet, before it
develops fully.


Dave:
I can't help
thinking now that there is more to all of this and worried about complications in my head/brain with blood vessels etc etc. THis nmay explain the redudction in my vision over recent weeks and
my head and eye ache and general fatigue?

Please do try not to worry (in case that makes the headaches
worse). I suggest you have a look for a book about migraines,
or do a web search (I seem to remember hearing a programme about migraine on Radio 4 recently, so might be worth a hunt on BBC
website). I borrowed one called "Migraine and Headaches" from
my then-landlady in which I found the answer to another problem
I had; will try to wrack brains for who wrote it.

I guess it's possible that if you were having difficulties with
your eyesight, and your brain may have been struggling to make
sense of what you were seeing, this may have started off the
headaches. And then this, in combination with worry, maybe,
and/or other factors, may have tipped this over from ordinary
headache to migraine.


Rosemary

--
Rosemary F. Johnson

Hi there, just found this site while looking for information on this problem. I have Keratoconus and I am going in to hospital on the 28th the have the first cornea transplant. I'm quite looking forward to it in a strange way. Maybe its the idea of not having the constant reminder of sight that can';t be fully corrected and always having head aches from the double blurred vision.

Oh well heres hoping :)

Dave

Can I ask what made you go the Transplant route?

What is your vision with lenses on?

Just out of curiosity

Jay

dave in wales......
best wishes for op on the 28th .
i had transplant in august 2002.
just wondered how long u were told you had KC and if the decision was yours to have op. i wasnt given all the right information and told i didnt have a choice i had to have op. i have been told that my right eye now needs a transplant of which i have refused.
make sure you have all the informationa and at your pre op ask everything that you can think of .
good luck !
sarah
p.s if you wish to email me you can on ...starlight7723366@aol.com

Dave in Wales
Have you tried scleral lenses? After having bilateral corneal transplants my unaided vision is worse and I get less correction with glasses - virtually nothing. I was prescribed softperm lenses by the hospital where I had the transplants and was only allowed 6 hours wearing time per day - had to give up academic career etc etc. Finally insisted on referral to Moorfields where they said I need not have had transplants! Now fitted with scleral lenses - 12 hours daily wearing time and slightly better vision than before ops.

But there is no proven research on outcomes of transplants beyond 5 years! I know several people with grafts 30+ years old, but we never know how we are going to react. Once it's done there's no going back. There is a limit to how many times you can be regrafted. And even the surgeon however competent cannot predict the visual outcome. A lot seems to depend on the tightness of the stitches and the tension across the graft, which causes varying degrees of astigmatism. Clearly, like hand sewing, this is not totally controllable. The graft may heal well and be lovely and clear - a surgical success, but if your corrected vision is worse or no better or you have greatly reduced lens wearing time is it a success for you living your life?

It takes more than a year for full recovery - stitches stay in that long. No one tells you this before hand. You have to use drops at various points, which usually precludes the wearing of a lens. There is also the risk of rejection episodes. I was told I would be back at work in 2 weeks. I was probably physically recovered in 4 weeks, but could not read as they did my best eye first and I couldn't drive for 2 years until I got my sclerals.

Sclerals are brilliant for many KCers pre graft and keep many of us off the operating table. They are very comfortable, easy to use and don't fall off the 'cone'. More info available on KC site.

I know this sounds pretty pessimistic, but if it makes you think and ask some questions before going under the knife it's worth it! The op itself isn't serious but the repercussions are. Having said this I am coping well, having retrained for another self employed career, where I have control over my working hours and environment. But I don't know how long this will continue - the threat of rejection remains.

All the very best with your decision and good luck in whatever you decide. Keep us posted.

Hi there, I was told I had the condition back in the early 80's, The optician I was seeing just kept giving me glasses then a new boy, straight from Uni, had a look and had been studying KC for a project and sussed out thats what I had. One of his first lines of questioning was if I smokes cannabis as he was sure there might be a link with that. I'm not so sure on that as a fact.

At present my eye sight varies so much from day to day. I have hard/Glass permeable lenses now that are always falling out of my eyes and variable correction of vision. It seems I get double vision in each eye that makes it hurt.
I'm going to make a picture on PSP to show ppl what I actually see as I'm sure they never listen.

On a good day I can see fine, on a bad day I hate the world.

Without the lenses I see like looking through frosted glass with Vaseline smeared on then wrapped in cling film .

In the last 10 weeks I have had 3 sets of lenses. the first 'new ones' where someone Else's lenses, the second set where then made up using the wrong ones as a guide so they didn't work. I'm back on Wednesday for a fitting with 'Blanks' to see whats what. Now I'm using a mix and match of old ones to get the best I can from them.

I've never been offered or told about any other type of lens that might help. But I am very interested in the fact that the 'transplant' is not as good as I'm told. I expect to remove the bandages and be able to see, and a few weeks later have the stitches out and not have to worry about my eye again, OK i know i might need glasses or something to help correct any vision defects' but no idea of anything else.

If anyone wants to contact me i use

ICQ:27276473
MSM:bikerborg@hotmail.com (not for e mails though)
Yahoo:Bikerborg_Cymru

Does anyone, especially anyone who wears scleral lenses, have problems with dry eyes???

At my november hospital appointment, my optometrist noted that my eyes were drier than expected across the middle of them. It was decided that, as I had had a bad day with my lenses that what to do about this would be looked into at my next appointment in february.

Everything had been ok until Boxing Day, when i got a really sore throat, blocked nose, headaches etc (bad cold) - cols synptoms have now gone however it has left me with dry and gritty eyes, which is rather frustrating as in the last 8 days i have only worn my lenses on 2 occasions, each for approx 4 hours.

A work colleague (my boss!!!)who probably doesn't understand 100%of my difficulties (and why i've been off sick for the last 3 days between Xmas & NewYear) has suggested LACRILUBE. The chemist has supplied my husband with a tube of this however warned that it wouldn't go vry well with my lenses - however as i'm not wearing my lenses at the moment, this didn't concern me too much.

Has anyone else used this or has anyone else any suggestions that may help?????????

Thanks for the reply Rosemary, it's good to know that I am not the only one with KC and migraines to contend with! Like you say a link between the two would seem possible due to the light refraction in our eyes etc..

Dr suggested ibroprofen for my pain behind the eyes, wonder if this is a sign of my KC progessing or the fact that I have been unable to wear my lenses for 5 weeks so my eyes are constantly straining?

Can I ask if anyone else out there has ever noticed an increase in teh number of floaters they have in their eyes due to KC? I have had this recently and the hospital can see them, but can find no reason for them ie, viterous detachment or retina damage.

Thanks again guys,

Dave.

Hi Dave in wales,
Your description of your uncorrected vision is very like mine post transplant! You might get lucky and take the patch off after the op and find that you can see much better, but judging by the postings on this site, I think that is very unlikely. There have been some people who can manage with glasses post op, but most seem to need lenses to get the best correction. I sympathise with the difficulty you are experiencing in getting fitted with corneal lenses and the problem of keeping them in. This is where sclerals are so brilliant. they cover most of the eye, so don't slip around and cannot fall out. The main thing I noticed is that when reversing the car they keep up with my eye movements. The corneals would still be trying to look backwards when I was looking forwards again!!

Sclerals are also much easier to tolerate because they do not rest on the cornea in the middle of the lens, only at the margins. It would be worth trying these before going for the surgical option. You have nothing to lose. If they are not right for you, you can still go for the op. Good Luck.

To Susan,
I get very dry eyes and wear sclerals. Moorfields' solution for me is preservative free sodium cromoglicate drops 4 times a day. I recently tried to give these up, having got off all other medicaton for asthma, hay fever, eczema and migraines with the help of homeopathy. After weaning myself off, I went for about 2 weeks without drops. During this time I got increasing discomfort and found myself having to remove one or other lens for several hours at a time to give my eyes a rest. Back on the drops - no problem and regular wearing time of 12 hours per day.
I have used lacrilube, but only at night as it's like putting vaseline in your eye and obstructs the vision. My eyes do get dry at night, so I keep a tube of saline by the bed - Steripod, that I use for inserting the lenses - and just put a drop in each eye. I find this much easier than fumbling around in the dark for those tiny tubes of refresh eye drops. Hope this helps.

Kate F 26/12 Kate, thanks for the offer of help, I have tried to e-mail you direct but can not seem to get a conenction to you. Have you had a problem. Jan x