feeling fed up and alone

[sarah42g]

Hi Im new here and hoping I can find some comfort and support from others.

Bit about myself, Im 40, married and live in the UK. Over the years Ive noticed my eyes becoming drier, itchy, feeling like Ive got grit in them. I occassionally wear contacts but only for short periods which have become less and less.

Last week I noticed real pain around my left eye, like a pulled muscle. I visited my optician for a test as one was due. Explained my prob but they were not concerned and said my sight and eye health was fine. On Thurs things had not improved and I now had blurred vision in that eye. Visited a different branch where they did another sight test and said my eyes were fine but he suspected I had dry eye. He also checked the dryness of my eye and said it was pretty bad in my left eye.

He suggested I try artificial tears and see how i got on.

That was last week. I still have blurred vision in my left eye which is uncomfortable and restricting my day to day activities. Tried getting an apt with my GP but they are not rushing themselves and dont consider it bad enough for an emergency apt. In fact the only apt they will give me is with the nurse.

I feel so fed up. Tried 3 different types of drops and lacri-lube to no avail. Vision no clearer and my eye feels a dry as a bone. Is this normal? Surely a week of blurred vision is not right. Just want to sit and cry, feel so alone.

[lizlou29]

Hi Sarah

Sorry you are going through this. No it isn't right to have blurred vision for a week and you should be seen by an Ophthalmologist.

Littlemermaid is the expert on how the NHS system works so hopefully she'll see this but if you can't get to see your GP I believe an optician can refer you to an Ophthalmologist. It can take quite a while to get an appointment. If things get really bad you can go to an A&E eye clinic. I live in the South East and when I was in a lot of pain on a weekend I went to Moorfields A&E and I've also been to Sussex Eye Hospital in Brighton after hours. Do you mind saying which area of the UK you are in? I have found GP's themselves quite useless when it comes to dry eyes and they really would need to refer you to a specialist.

[sarah42g]

Hiya. Thanks for your reply. I live on the Wirral here in North west england. I called the opticians again yesterday and they said they would refer me but it can take a few weeks. In the meantime Im in limbo with no one to turn to. My local a&e just send you back to your gp. My dad has been there 3 times and they do nothing. Just dont know what to do next.

[Rebecca Petris]

I wonder if you're recovering from an abrasion? That would explain the blurred vision - those can sometimes be very slow to heal. Seems like they would be more attentive than this if so, but you never know... I knew someone else whose doctor was completely unconcerned then she went for a 2nd opinion and they found her epithelium was a total mess.

If it were me *and* if I felt reasonably sure that they'd examined me thoroughly enough to make sure there's nothing 'worse' going on, I think i'd be totally babying that eye between now and the ophth appointment - patching or taping it down whenever possible (certainly overnight!) and continue researching so that you have a brief list of the most important questions to ask as well as be ready to give a really good succinct account of what happened to this ophth when you see him/her.

[cathy8889]

Hey,

I'm sorry your eyes are causing you such pain and upset. I have never felt so alone past 6 months, so glad I had the wonderful people on this forum to help me through. I am from the wirral too and have seen three different oph all from wirral each of which have failed to diagnose me! Today I have finally been told I have meibomian gland dysfunction. You've really got to put up a fight and know your rights.

My doctors runs a policy of an appointment on the same day, I know that victoria park med centre based in the new st caths building operate same policy.

You have right to see an ophthalmologist who you wish so don't let your doctor just refer you to closest hospital, with choose and book your In driving seat, we theoretically you should be. I paid to see third oph I saw as couldn't bear the wait of four months so if you're really suffering this could be an option, just make sure they know there stuff on dry eye. My optician is really great, I would avoid specsavers in birkenhead like the plague, they told me nothing was wrong with my eyes and the place was filthy.

As you don't know what's causing your dry eye yet it is difficult to know which treatment would be best for you. I would find some preservative free drops that your eyes agree with, vismed multi 0.18% have been a god send, I was told today that they help the epithelial layer if eye heal too, you can get these on prescription on wirral too. I would also start doing warm compresses, before it got my eye bag http://www.eyebagcompany.co.uk I used a flannel which had been in hot boiling water, obs let it cool down a bit first, this will open up your meibomian glands and even if you don't have mgd it will do no harm. Also start eye lid hygiene, I use systane lid wipes after I have done my warm compress, I also use a cotton wool bud to express my glands, kind of doing a downwards motion on upper eyelid and upward on lower. I have also been taking omega three by scope, they are a very good form of omega three (triglyceride form) and I take seabuckthorn oil omega 7 http://www.omega7.co.uk

Drink lots of water and really try and learn about dry eye, when I was trying to get my head around it all Michael Lange really helped me http://dryeyenutrition.org/tag/dr-michael-lange/ and john hovanesian conference on dry was really helpful http://m.youtube.com/watch?v=TEFr-_CqaV8

There is lots you can do before you get to see and oph and because wait time is so long via nhs it's good to et things stared so your not living in so much misery. I found it so overwhelming at first but I feel much better about things now I have learnt so much and finally saw an oph who cares and knows what she's taking about.

Things will. Get better I promise. I cried today at oph because I was so happy I found someone who crated about me and took my condition seriously.

Take care x

Hiya. Thanks for your reply. I live on the Wirral here in North west england. I called the opticians again yesterday and they said they would refer me but it can take a few weeks. In the meantime Im in limbo with no one to turn to. My local a&e just send you back to your gp. My dad has been there 3 times and they do nothing. Just dont know what to do next.

[cathy8889]

Ps I kept getting prescribed lacrilube for my eyes, doctors didn't have a clue what it was or that it was only suitable for night time use. I use butterflies eye care website, they have every brand on there, vismed, theratears have been best for me, I've been advised to try systane ultra preservative free single dose today so I'm getting them next. If you're putting drops in and they are stinging or making your eyes worse stop. Using them straight away.

Cath x

[cathy8889]

Sorry also wanted to mention about the blurred vision, I had it too and great sensitivity to light, it was caused by my dry eye. Optician at specsavers told me I needed glasses!

[littlemermaid]

Hi Sarah, you're definitely not alone!

I would send a Personal Message to cathy8889 to find out which Ophthalmologists she has seen and support each other finding the best Optometrists and doctors in your area.

We were in a similar pickle but it took 1y for me to work out that local Ophthalmologists, Optometrists, GPs, Eye Emergency, didn't know what was wrong, so thank goodness for patient forums. We travel to big teaching hospitals to get NHS standard assessment, diagnosis and treatment.

If Optometrists prescribe contact lenses they do have a responsibility to manage the consequences. The Specsavers poor Cathy saw was shocking and it really depends on the quality of the staff and good branch management. On the Neuro patient forum we belong to as well, some high street Optometrists are diagnosing and monitoring ongoing conditions better than some hospitals. But only up-to-date and professional Optometrists www.college-optometrists.org/en/professional-standards/clinical_management_guidelines/

Which is your best large regional NHS teaching hospital Ophthalmology Department for anterior segment and ocular surface disorders (NHS website)? Suggestions:

GP or Optometrist referral to Waiting List
phone every day for cancelled appointments (describe pain, red eye etc), give Appointments manager your mobile number
get advice from regional NHS Trust PALS (patient services, patient liaison service)
get advice from local Healthwatch
ask local eye charities who is the best eye surface specialist in the region
try a local Consulting Pharmacist for advice
speak to regional hospital Eye Clinic Liaison Officers for advice

Often when we find a good Consultant leader s/he has built a good support team with great access. Just to be clear, I paid Private in the end for NHS access because my d. was being discharged to self-medicate (thank goodness a Pharmacist told me it was serious because she saw neovascularisation across the cornea; GP refused referral even though I showed him bad eye surface photographs - they can get this very wrong).

It needs to be recognised that many professionals eg Optometrists, GPs, nurses, are well out of their depth with eye inflammation. Also that some NHS Trusts are struggling with some services on rota and we are better off in regional ophthalmology centres where docs have equipment, labs and colleagues.

Just on a quick Google 'ocular surface Wirral', Andre Grixti is publishing, if that's any help but I would look at Liverpool and Manchester too. Everyone gets on with different docs but there are professionals who are actually interested in what we're dealing with.

So happy to hear you've found someone kind and interested, Cathy. What a huge relief. Don't get me wrong, our NHS is truly fabulous, just disorganised.

[sarah42g]

Hi Cathy8889. How long did the blurred vision last for? My dad has dry eye but cannot remember how long it lasted for him when he was first diagnosed, but I don't think it was over a week like me.
I very much doubt Specsavers now, heard a few negative stories about them. The first person I saw didnt seem in the slightest bit concerned that I had pain around my eye which I think is a bit odd.

[sarah42g]

Thanks for all your replies, at least I know I'm not alone.

Bit of an update - I went to see the nurse yesterday (surgery seem reluctant to let me see a doctor) and she was unsure as to what it is. Had a look at my eye, touched the surface with my eye closed which was uncomfortable and suggested it may be an infection. No signs of redness or gunk which is odd for an infection (don't they all produce redness and/or gunk?) but she prescribed some antibiotic drops to use, then return in a week's time. I asked if I could be referred to the eye clinic for investigations (given that Specsaves had originally diagnosed dry eye syndrome) but she said I would need to try the drops first as they would be unhappy if I was referred and it was found to be an infection.

She also said the hospital would do no more than the eye test I had at Specsavers so would be pointless. But surely if I had a minor problem then which has since got worse it would still be worth doing? Maybe it is an abrasion but on reading up on that (I should not google stuff!!) that needs urgent treatment not sit around for another week.

Started with the drops yesterday morning, every 2 hrs, but so far no joy. I understand they take time to work but after over a week of blurred vision in one eye I'm starting to get very worried about its cause. If someone could tell me they had dry eye and blurred vision for a whole week I may feel better but so far everyone has told me its just been a day or so at the most.

Anyway, after another sleepless night of worry (which has set off my IBS) I've called the surgery again and demanded I see a doctor. Got an appointment for 3.30 today.

I find it odd that its just kicked off bad like this, surely it would gradually get worse over time? My dad was diagnosed a few years ago but his symptoms increased over time, not in a single week.

Nothing I can do right now but feel very sick with worry :-(

[sarah42g]

Whilst I accept I do have dry eye for it to get so bad so quickly leads me to believe its something else. I was thinking it could be an abrasion but I don't know how it could have happened as I've not experienced any injuries etc. I make a point of not touching my eyes in case I get infections (bit of OCD going on there) but I suppose a bit of dust or grit could have got into it.

They took photographs of the eye and showed them too me and everything seemed to be ok, no detachment, burst blood vessels etc. The one thing I'm not so sure about is in the past when I've had the flourisin test I remember them using different coloured lights, but this time he only used the white one. Reading up on abrasion it suggests they use a blue light to pick it up. I don't recall seeing any blue light when he examined my eye last Thursday so I wonder if he has failed to pick something up?

[DryLondoner]

Hi Sarah,

Sorry to hear that you are suffering. With the drops you were prescribed, be careful, some contain preservative which can make dry eye worse. Of course, this may not be the case for you, but you may want to ask about getting a specialists to give their opinion before using drops. Hippie your doctors two was successful.

[cathy8889]

Thanks little mermaid, and thanks again for your advice earlier in year. I've got to go with the treatment given just sometimes I get impatient and want it to all be better. I always get discharged too which disheartens me, is this common? Wish someone could monitor me, my doctors are such arses and I hate the thought if me having to go and asked to be referred again in 6 months, they dragged there feet on a referral last year, I requested my doctors notes and found out if asked to be referred in July and it wasn't until dec that a referral went through, I'm in process of complaining through pals, I've really lost faith in done doctors through all this, I'm grateful for the nhs though.

Cath x

Hi Sarah, you're definitely not alone!

I would send a Personal Message to cathy8889 to find out which Ophthalmologists she has seen and support each other finding the best Optometrists and doctors in your area.

We were in a similar pickle but it took 1y for me to work out that local Ophthalmologists, Optometrists, GPs, Eye Emergency, didn't know what was wrong, so thank goodness for patient forums. We travel to big teaching hospitals to get NHS standard assessment, diagnosis and treatment.

If Optometrists prescribe contact lenses they do have a responsibility to manage the consequences. The Specsavers poor Cathy saw was shocking and it really depends on the quality of the staff and good branch management. On the Neuro patient forum we belong to as well, some high street Optometrists are diagnosing and monitoring ongoing conditions better than some hospitals. But only up-to-date and professional Optometrists www.college-optometrists.org/en/professional-standards/clinical_management_guidelines/

Which is your best large regional NHS teaching hospital Ophthalmology Department for anterior segment and ocular surface disorders (NHS website)? Suggestions:

GP or Optometrist referral to Waiting List
phone every day for cancelled appointments (describe pain, red eye etc), give Appointments manager your mobile number
get advice from regional NHS Trust PALS (patient services, patient liaison service)
get advice from local Healthwatch
ask local eye charities who is the best eye surface specialist in the region
try a local Consulting Pharmacist for advice
speak to regional hospital Eye Clinic Liaison Officers for advice

Often when we find a good Consultant leader s/he has built a good support team with great access. Just to be clear, I paid Private in the end for NHS access because my d. was being discharged to self-medicate (thank goodness a Pharmacist told me it was serious because she saw neovascularisation across the cornea; GP refused referral even though I showed him bad eye surface photographs - they can get this very wrong).

It needs to be recognised that many professionals eg Optometrists, GPs, nurses, are well out of their depth with eye inflammation. Also that some NHS Trusts are struggling with some services on rota and we are better off in regional ophthalmology centres where docs have equipment, labs and colleagues.

Just on a quick Google 'ocular surface Wirral', Andre Grixti is publishing, if that's any help but I would look at Liverpool and Manchester too. Everyone gets on with different docs but there are professionals who are actually interested in what we're dealing with.

So happy to hear you've found someone kind and interested, Cathy. What a huge relief. Don't get me wrong, our NHS is truly fabulous, just disorganised.