UK Keratoconus Self-Help and Support Association

Hi guys, im new to the forum and this is my first post. I Just wanted to give my story and air my frustration, as i have never actually spoke to anyone else who has Keratoconus, just doctors.

I am 29 and from Swansea and I have Been officially diagnosed with Keratoconus for around 2 years, however I have had the symptoms for around 10 years or more. I think the fact I have seen some inexperienced opticians has delayed the diagnosis. My typical symptoms are blurred vision, halo effects, sensitive to bright lights etc.. and my condition worsens at night. I have constant headaches every day, and occasional dizzyness. I take about 4/6 headache tablets every day. I wear glasses just for computer and driving use.

Once I got diagnosed two years ago in Singleton Hospital, Swansea, I was told i had mild keratoconus in both eyes, and my left eye was slightly worse than the right. i was then sent to the hospital optician who wanted to do a contact lens trial. I first had a few sets of GP Lenses, however they wouldnt sit on my right eye so we had to try other types of lenses. I went through about 6 different pairs of types of lenses and none worked as they wouldnt fit or the vision wasnt clear. I was then told there was nothing else they could do and that glasses were my only treatment for now.

A year and a half later (6 months ago) after wearning glasses, I decided to go back to specsavers to get an eye test as I was still experiencing headaches, even worse than ever. The optician wrote to the hospital specialist saying that glasses arent working to help my keratoconus, and that further investigation is needed. The hospital replied to me last month saying that as it was only a year or two so since my last consultation, it wasnt neccessary to have a further checkup yet. I complained about this and they said they will look in to it.

This infuriated me as the condidion is now ruining my life. Because of work I can not wear glasses all the time, and I also play sport, so I obviouslt cant wear them then. I have constant headaches every single day, I miss out on some nights out with friends as I cant go to clubs and bars as this would sent my headaches over the roof. The condition makes me tired, lathargic etc.. and the amount of pain killers I have to take every day Is annoying me.


Has anyone had any similar experiences? Can anyone recommend anything to do next? Any other options for me? ETC..
Your feedback would be appreciated,

thanks
Dan

Hi Dan and welcome to the forum!
I'm sorry your KC story has been so frustrating so far. And I'm really surprised that your hospital is saying it's unnecessary to see you, despite a letter from your optician. Let's hope they review their decision now you've complained. You could also ask your GP to write to them which might buck them up a bit. If you'd like our information booklet about keratoconus and the DVD of our 2009 conference which covers the various options in more detail (including options such as Intacs or CXL) just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
Don't give up hope - there are new developments in KC options all the time, including new contact lens designs. Hopefully you'll find something which will mean you can get your life back.
All the best
Anne

cheers

Hi Daniel,

While you are waiting for the hospital to look into this, you could also consider second opinions, paid for privately. There are ophthalmologists (eye doctors) and optometrists (opticians) that specialise specifically in keratoconus. Many optometrists who specialise in this are listed here on the site: http://www.keratoconus-group.org.uk/optoms/index.php

Headaches with keratoconus are often associated with difficulty in focussing, due to the distorted images. This could be much reduced or eliminated with contact lenses and if you cannot tolerate RGPs, then there are many other kinds available.

The only reason I can think that the hospital said what it did is that the results of the eye test from the optician was not that different from before. However, you do need to have this sorted out to get your life back on track!

Lynn

Actually Daniel...

Can you check your PM messages (You need to log in ) as I may be able to sort something locally for you.

Lynn

there are new developments in KC options all the time, including new contact lens designs. Hopefully you'll find something which will mean you can get your life back.
All the best
Anne

Hi I thought I would add that there is constant development.

I was diagnosed when I was 20 in Swansea, since then I have worked in London and Surrey and have been looked after by Kingston then moor fields then Kingston and i am now back in moor fields.

I am now trying moor fields latest design, which full copes with my pointed cornea, so seek advice, from a specialist or badger your gp to get referred. Hang in there.

Best of luck.

Hey Dan you just described my everyday life...I've been drinking so many painkillers that even my GP said it's bad for me. I am currently waiting for some lenses which are taking forever to arrive. It's really frustrating! One eye doc suggested I try on lenses because it might help with the headaches but he couldn't guarantee it. This just shocks me cause I'm currently involved in so many KC forums and not many people complain about headaches/fatigue. This is really annoying me because it has ruined my life in so many ways. Hopefully the lenses will help but if u find out what's the cause of these headaches plz do let us know Dan, I for one will be extremely grateful!

All the best.

Hi,
before I start wearing lenses I had the headaches and fatigue also. I think lenses should help you.

BR

Enigma wrote:Hi,
before I start wearing lenses I had the headaches and fatigue also. I think lenses should help you.

BR

Hey Enigma,

So now you have no headaches/fatigue at all? How about sensitivity to light and glare? If the lenses solved your problem then I must confess this I do feel somewhat more optimistic.

PS: what lenses do you wear and how long can you wear them daily?

Regards