New to the forum!

[Michael Forbes]

Hello Folks!

I'm Michael, and this is my first post on the forum!

I was diagnosed with Ketatoconus about 5 years ago, but my vision in my right eye is still very good so I don't wear glasses or have contacts. Things are getting worse, my left eye is very bad now, and my right eye now has the halo!

I've been to see many Optometrists and the advice is mixed. On my last visit the Optom. still thought my eyesight was good enough without any aid, but said it was my decision if I wanted to go for glasses. he didn't recommend contacts at all.

The major problem I have is headaches/eye-aches - does anyone else experience this? It's getting to the stage that I have daily eye pain, and maybe once in the week or fortnight I am completely flattened by it. The only thing I can do is lie down in a darkened room for 24 hours, and even the next few days after it I am still affected. This is obviously affecting my job and college etc. The Optom, however, didn't think this was caused by the Ketatoconus - others have though... Does anyone have experience of this? Would glasses or lenses make any difference at all? I have been able to live without any real problems since diagnosed, but the headaches have been affecting me badly since last October or so... I get 'full-on' migraines once or twice a year since I was a kid (aura, vomiting etc.) so I'm used to headache pain, but this is something new...

Thanks,

Michael

[Andrew MacLean]

Michael

Welcome to the forum.

I am sorry to hear that your vision has taken such a turn for the worse, and in answer to your question it is not uncommon for headaches and sore eyes to result from the effort to see when the information travelling to the brain from the eye is so fuzzy.

Has your ophthalmologist suggested contact lenses; or maybe I ought to ask an earlier question: have you ever been referred to see an ophthalmologist? If not, you should maybe ask for an early referral.

My own experience of the early stages of keratoconus was that whenever I started to wear contact lenses, my own headaches became far less frequent and my aching eyes recovered quickly.

All the best

Andrew

[Michael Forbes]

Hi Andrew,

Thanks for the quick reply!

I've had varying degrees of success with Optometrists and Opthamologists. I was first diagnosed while living abroad, and was referred to a specialist clinic where they did the regular corneal scans etc. but said it was stable enough without lenses and said glasses would not work. Since returning to the UK I was referred to the Opthamology department in my local hospital but they were far from helpful. They didn't really offer any information, and had never heard of common effects like the halo text etc. They didn't do a corneal scan and said just come back in a year for a checkup.

I have since been to a few Optometrists as I've recently moved to a different NHS Trust, and wanted to get "registered" on the system. they didn't recommend going for hard or soft lenses, said it could make it worse (others have said the only thing i really can do at this stage is go for lenses) and couldn't really say what glasses would do - said it's up to you if you want to spend the money to try them! They also didn't think there was a connection with the headaches, and said to go back to my GP. My eyes are extremely sensitive to light (have been for quite a few years now) but i'm not sure if I get sunglasses with a prescription, or transition glasses with no prescription or... Arghhhhhh!

[GarethB]

You can choose which NHS hopital yo go to by going back to your GP, the trouble is GP's know little about our condition because they are just that General Practitioners and not specialist and the system they use is useless in proving information you require to choose a hospital regardless of condition.

If you let us know where you are located, then I am sure one of us here will be able to suggest a hospital that we have had good service from so that you get the help you need.

Without lenses I get headaches and 20 years ago when first diagnose I was light sensitive too, but with lenses there was no light sensitivity. It was only between 2004 - 2008 that I was light sensitive when wearing RGP contact lenses, I am now on the specialist soft lenses for Irregular Corneas (Kerasoft IC) and I can now wear lenses all my waking hours, no halos or any other visual distortion, no light sensitivity and get 6/4 vision. Without lenses I can't see the eye chart and my KC has been stable since August 2004, so as far as I am concerned a correctly fitted lens has no influence on KC progression. If there is any adverse effect (if you can call it that) is thatmy brain finds it hard to adapt from pefect vision to no vision, but considering I have been wearing my lenses all my waking hours every day since 22nd December 2008, that is no issue.

[Michael Forbes]

Thanks Gareth!

I'm living in Edinburgh at the moment. The last Optometrist I went to see did say that NHS Lothian were now doing Crosslinking, so I take it they must have a specialist department/hospital for this? He didn't refer me to them though?

I know everyone has different symptoms, but were you getting pulsating pain behind the eye? Sometimes it will wake me up in the middle of the night, just incredible pulsating pain, I've been on the verge of calling an ambulance to get to hospital - it's been that bad...

Thanks to everyone for their information!

[Andrew MacLean]

Michael

Ask your GP for a referral. My guess is that the procedure may be offered at the Edinburgh Eye Hospital (is it still the Princess Alexandra Eye Pavilion?)

Anyway your GP will know and will also have access to information about which consultant is offering CXL.

Andrew

[GarethB]

Unsure how different the system is in Scotland, but in England it is very likely that the GP will be unable to say what treatments are available at a hospital.

We see here every day postings that opthalmologists and optometrists in the specialist units are unaware of the latest treatments and lens options available to us.

[rosemary johnson]

Hi and welcome.
I'm wondering if the headaches are related to the light sensitivity- is this possible?
Certainly bright light (like on a hot sunny day) is one of the things that can trigger my migraines.
There are various possible reasons why someone with KC might be very light sensitive.
One is that the irregularity of the cornea as the KC develops the lght is getting scattered rather haphazardly around the inside of the eyeball and falling on parts that don't normally get lit up, and theat compalin about this sudden lightening of their darkness.
If this is the case, then glasses or lenses that correct the vision should improve or cure the light sensitivity problems.
ANother possibility is that there's a neurological hypersensitivty problem - it could be in the optic nerve, or in the part of the brain that processes the optic nerve signals and is "just" hypersensitive to bright light.
If correcting the vision with with glasses or lenses makes the lgiht sensitivity worse - as id focussing the light is also focussing the pain - this may e the case.
This sort of problem is independent of the KC per se - though people who delop it also tend to have other eye conditions, statistically.
If you reckon this might be you - if trying to improve the visual accuity makes the light sensitivity worse - and given what you say about the pulsating pain and having to lie don in a dark room for 24 hours or more - I'd suggest you could do worse than get it checked out probably by someone(s) called a neuro-ophthalmologist..
Also, have you ever seen a doctor about your igraines? in case these are linked.
Other known causes for headaches with deteriorating eyesight are: the brain struggling to make snese of rapidly getting fuzzier world pictures, and the brain having difficulty with putting together the pictures from each eye when one is much fuzzier than the other.

Given the symptoms, I'd say get it checked out - by looking for a headache specialist rather than an eye person maybe?
Good luck,a dn dol let us know how you get on.
Rosemary