MY "Dry Eye" story. Is it dry eye? HELP!!!

[mogwai11]

Firstly hello.

Here's how i got here and to the forum.

I suffer with Keratoconus in both eyes. My right eye being the worst.
I went for a contact lens fitting for hard lenses. Had been to two previous ones and was fine except the lenses needed adjusting.

On my third visit the Opth' put the lens in and straight away it felt like my eye was burning. I asked her to take it out and she did but my eye went cloudy. The washed it with saline but over teh next two hours it gor worse and went VERY red. I visited the hospital the same day (same place as lens fitting). The cleaned it again and confirmed that there was nothing in the eye but I felt like there was. That night I could not look at light and when I woke up it was teh same and my eye crusted over and I could not open it.

I went to A&E a week later as was still bad photophobia, stinging and foreign body sensation and they said that I had bumps under my eyelid as it was dry and was something called SPK.

I was prescribed Pred Forte and Anti biotic eye drops. Was on these for two weeks but the photophobia and vision got worse. I was told to stay on the drops for another two weeks and taper off. Pressure was tested, all ok.

I went back again and then they said I had a layer missing from my eyes which was letting light in and was very dry.

After 7 weeks I still feel like I am getting nowhere. I have to go back yet again next week after being told to use artificial tears for three weeks. I never had this problem before my lens fitting and to be honest I am at the end of my tether and don't know what to do?

Any help, comments, anything would be great.

[littlemermaid]

Hello Mogwai ~ so sorry you are suffering with the lenses and eye reactions managing your keratoconus. Are you in UK? If so, I would contact these guys for advice if you haven't already http://www.keratoconus-group.org.uk/contact.html and Keratoconus GB on Facebook.

Looks like you got conjunctivitis from the contact lenses maybe http://www.keratoconus-group.org.uk/...nctivitis.html. Maybe the bumps under the eyelids were a giant papillary conjunctivitis reaction.

Did A&E refer you back to your Cornea Consultant for management? are you seen in a cornea unit in a big regional hospital?

Did it start in one eye then spread to both?

Did they say why they think this has happened?

I think SPK is superficial punctate keratopathy which means tiny dot lesions in the cornea while it's suffering. My daughter has this sometimes and after steroid eyedrops control the inflammation, it heals.

Is it both your poor eyes suffering at the moment with dry eye? Are you using lubricant eyedrops all through the day? Are you OK when you wake up in the mornings? Do you cover your eyes overnight?

[mogwai11]

Hi Mermaid. I did use that group for a while. Thanks

A&E referred me to a specialist or eye doctor. They just keep saying it's Dry eye. I went yesterday. The doc' did a slit lamp test and said that my tear film is gone within 3 seconds and normally it should be 10. So he said dry eye. I said I couldn't understand the situation as I had never really suffered from it before. he said that it could have triggered an underlying issue. I am now taking lubricating drops nigh on each hour.

One thing that has worried me, is that we found some small patched of black mould in our bedroom and I have had headaches and massive neck tension, my fiance has had a cough for three weeks now and the cat is sneezing. It's only three small patches which I cleaned but it does worry me that this could be making us all ill.

My eyes are not covered at night. The eye doc seems to think it's both as he didn't say dry in one eye.

I have been suffering for the last nine weeks. I am using thera tears drops and gel and now have some thera tears nutrition. I really want to beat this but am losing faith.

Any comments would be great.

[littlemermaid]

Mogwai, I'm helping my daughter deal with dry eyes 5y and her favourite eyedrops so far are Hyloforte for staying power although for frequent use she uses Hylotears or even just saline Minims sometimes. The doc said suggested something with hyaluronic acid in and preservative-free. Round by us, only Hycosan is available NHS and that's been a good one too. It's personal preference really.

Everyone has been virusy over these last few weeks and the constant rain is making our house damp too. We have patches of mould in the corners from condensation too and we're using a non-toxic cleaning spray by Method because we are trying to get as chemical free as poss.

There are very young and older children here with bandage lenses for dystrophies, and many people with scleral lenses, so you are in the right place here with us.

Some people use masks at night as well as gel http://www.dryeyezone.com/.

Don't lose faith - it sounds as if you had conjunctivitis and inflammation, and that it's a question of healing and restoring the eye surface.

Some people are using gentle warm compresses and cleaning carefully round the eyes and into the eyelash follicles, just to make sure all the glands in the eyelids are good (search 'blepharitis'). In your case though this needs very careful thinking about, not poking about disturbing the corneas too much.

My d and I did attend Moorfields Cornea Day in the autumn and there were so many people there with keratoconus - Stephen Tuft talked about progress with cross-linking. Do you have a good Cornea team where you are? I think if it was me, I would head for the biggest regional teaching hospital specialist Eye Clinic and seek out the Cornea Consultants who are interested in keratoconus. GP can do that referral. In fact any high street Optometrist can.

Have you got nice docs? It's a worry just having A&E now you've got a few other issues. I think I would want 3 or 4m monitoring until this dry eye resolves a bit. Do you have corneal topography records?

[mogwai11]

Hi Again Mermaid and thanks.

I have seen a few eye docs at the same hospital and each say the same thing. A break in the tear film and my tears don't last long enough. they got the inflammation/ foreign body feeling away with 4 weeks on Pred forte and Exocin. The photophobia, sore eyes and decrease in vision is pushing me over the edge.

I have been told to go back for a check up in 2 weeks.

[littlemermaid]

How are you, Mogwai? Did you get more help with this?

[mogwai11]

How are you, Mogwai? Did you get more help with this?

Hi mermaid.

Thanks for the reply.

Not too bad. Some god and some bad days but eyes not anywhere near worse.

Since we last spoke... I have been blood tested for an allergy to black mould and am awaiting the results as I was showing a lot of the symptoms. I have a hospital vivist next Monday to see the eye doctor AGAIN . I started taking Thera tears nutrition and noticed I don't have to use eye drops as much. My vision still fluctuates which is really frustrating. I also had been suffering with serious tension like symptoms in my neck which have subsided but no idea what they were. Sorry if it sounds like I am moaning, hehe. I have now also started taking Sea Buckthorn oil capsules and only been taking these for two days so will have to wait and see if they have an effect, excuse the pun.

How are you?

[littlemermaid]

Hi Mogwai, we're doing great, thanks. I was just reading this very good blog about keratoconus treatment in Moorfields and thought you might like it, if you haven't seen it before http://keratoconusinfo.wordpress.com...ce/#Part Seven

Very useful and interesting on insisting on regular treatment with the same doctors in busy eye clinics, if you find some you like. This basically means making that clear when you book the appointment or getting the administrators' direct numbers to request it.

What's striking about the keratoconus community even in London is that it is still possible to miss out on standard treatments, eg he had never heard of scleral lenses before, few people know about options for corneal cross-linking, especially for children, and no one seems to know about autologous serum. This is all partly because people can't spend hours on the internet. But how good to join one of their meetings or support groups and share info.

Moorfields Eye Hospital information http://live.moorfields.precedenthost...on/keratoconus.

Twitter is a good way of getting news from keratoconus patient support groups when we can't spend too long on a computer. They have very good experience with scleral lenses, for example.

Do you think we get better attention and support sometimes for long-term conditions in an Ophthalmology Department in a smaller or regional hospital? That's an interesting question. Maybe it depends on the expertise available too.

Have your dry eyes got more comfortable yet?