After a long break, I'm finally around to say hello!

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jayboi2005
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Posts: 272
Joined: Thu 12 Jan 2006 8:06 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cheshire

After a long break, I'm finally around to say hello!

Postby jayboi2005 » Fri 18 Oct 2013 2:01 am

It's many years since I have been an active member around the forums!
However the group has never been far away from my mind, as the helpful newsletters they send out are greatly approchiated and fantastic to read!

I'm not exactly sure why I haven't been around for so long, mainly study! Which due to KC seems to have taken me an awful lot longer than planned! However, in the end I achieved what I wanted!

A quick update, if anyone does remember me from a few years back!

I stopes going to the eye hospital for a long period of time, as I did feel what they were offering me was useless so you could say I kind of gave up, shut up and put up. I managed for a few years doing this!

However, I guess as I ended up studying Spanish in the end I soon realised some form of good eye sight would enable my study greatly! So I began to go back to the Manchester Royal Eye Hospital. This place has greatly
Improved over the years, but there is still some way to go. I hate how each time you go you see all different people, I haven't seen the same person for such a long time.

My vision is now at 6/42, and unfortunately correction doesn't seem to work greatly for me. Since the early days of my
Diagnosis I can say that correction and me using it has never been too good.

Contact lenses especially RGP give me a sore eye after 20-30 minutes, it goes very red, blood shot and sore. Which for me, tells me I'd rather not use them, my eyes just won't tolerate!

Glasses have also been tried many times, also with failure. The reason these fail along with RGP without the redness is migraine. The correction brings on awful migraines, which for me I can cope with! What I can't cope with is all the vomiting (sorry to anyone with a weak stomach) being sick caused a range of other health issues because it was more or less every hour or so. Plus a few after I stop using correction.

The Manchester Eye Hospital do agree to pay for Kerasoft lenses, however they have admired they cannot fit there in my eyes! Last year I was sat there for 7 hours, while they were attempting to fit a range of different Kerasoft lenses! All with no success!

They had to request that a really nice woman, called Josie! Came to
Fit these to my eyes, she is from the company Kerasoft! She after many hours managed to fit the lenses, the only problem
Is my eyes keep changing, and Josie can't keep Coming all the time. I do seem
To be able to tolerate these lenses much better, again though with a mold headache appose to a full migraine. The only problem I still have is after 2/3 hours I have fo take them out my eyes have just had enough.

Recently the last 3 months, I've suffered mild
Migraines daily! With no correction, this tells me things are getting harder. Straining is becoming more necessary for me to be able to see. I've spoken to my doctor, and there isn't a great deal he can do, there's not many options being offered to me from the Hospital just yet either.

So most of my current life, is constant migraines and feeling sick, I'm not sure how some of you manage with these migraines daily. I'm on a selection of tablets now, which is all directly linked to the stress and strain of KC.

So that's me, just around now!

It's good to be back posting, I recognise many names! & sorry if I have repeated myself or gone on too long!

Kind regards
James

RyanP
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Posts: 12
Joined: Thu 17 Oct 2013 9:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: After a long break, I'm finally around to say hello!

Postby RyanP » Fri 18 Oct 2013 11:19 am

Hi James,

Welcome back - I'm new, so it's great to hear peoples stories, although I'm sorry yours hasn't been brilliant so far.

I'm glad I read your post, as you mentioned about what 'score' your vision is. I've not come across any posts yet that mention these kind of numbers and I don't really understand what they mean, so hopefully someone could shed some light on these for me. My right eye is 6/60, improving to 6/18 with a pin hole.

Funny you should say about a migraine, I woke up during the night Wednesday morning with an awful headache, and was quite ill throughout the night, the next day I felt drained, which makes me think it was a migraine. Are these linked to KC do you know? I'm hoping it was just a one off as I was literally in agony that night.

Sorry if I've missed a bit, but have you had Cross Linking done or any other kind of treatment besides contact lenses?

jayboi2005
Chatterbox
Chatterbox
Posts: 272
Joined: Thu 12 Jan 2006 8:06 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Cheshire

Re: After a long break, I'm finally around to say hello!

Postby jayboi2005 » Fri 18 Oct 2013 12:20 pm

Hello Ryan!

I have not had any cross linking done no, I was very interested back int he days when it was all very very new. As I took a long break form everything I can see that things have really moved on now, especially if the NHS is beginning to offer this, as I have said I remember when the only place you could get his done was in Dresden.

Don't quote me here, however this is how visual acuity was explained to me,

20/20 - 6/6 is normal vision,

Mine being 6/42 basically means I can see at 6 meters what correct normal vision can see clearly at 42 meters. I'm not sure onto e individual acuity of each eye I just know what it is combined I'm also not sure how you work out what the co boned acuity is.

I have to say migraines are extremely common for everyone who has a visual disability/sight problem. Due to all the straining, squinting and other things we have to do that enables us to see that little bit better. Again I'm sure there are better ways to explain this, however I'm just going from what I have been told.

It gets to the point where things like paracetamol just aren't enough, well it sure has for me! As migraines have become some what a Permian t fixture of my life I've now been given some tablets which aim to stop the migraines however they carry some rather nasty side effects so before I take them I always weigh up the pro and con. Can I manage, is there anything else I can take or do.

Hope this helps!
Regards
James

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Anne Klepacz
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Posts: 2069
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: After a long break, I'm finally around to say hello!

Postby Anne Klepacz » Sat 19 Oct 2013 3:04 pm

Good to see you back, James and many congratulations on completing your studies! Though I'm sorry you've had such a tough time of it, and things still sound really hard. I've experienced bad migraines in the past, but can't imagine what it must be like to have them constantly. I do hope the new medications work for you. And that you can get better wearing time with your Kerasofts.
Anne


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