Glaucoma & dry eye

[Karjade]

Hi Jasmine

I am new to this website as well. I have been diagnosed with moderate to severe dry eye and I also have tried every dry eye drop I have been given and I can honestly say nothing seems to give much relief. I am literally having panic attacks over this - my eyes burn, sore, blood shot and blurred vision. I am wearing sunglasses in the house and dare not go out without them. My doctor has lost interest and his attitude is you have to live with it. I have been to the Emergency Eye Dept and they just keep giving me different drops which do not work. I am really suffering from stress and panic now and do not know which way to turn. I feel I cannot live with this for the rest of my life and nobody seems to understand how distressing this is. The thought of no cure frightens me so much. I feel I cannot cope with this for much longer.

[Hopeful2]

Karjade,

I am soo sorry to hear that you are suffering from dry eye. I am glad that you found the DEZ (dry eye zone). There is lots of information here as well as a community of many supportive people.

If you could start a new thread, telling a bit about your experience with dry eye, in the 'Open Forum', more people would be able to respond to it. Your post here could get lost.

Know that you have already made a positive step to help your eyes by joining this community! Learn and ask questions. Have heart, many fellow dry eye suffers have been able to find help for their eyes.

Hopeful2

[littlemermaid]

Hi Karjade,

If they have just given you different eyedrops that don't help, then could it be they are not referring you to a better hospital eye clinic for the next treatment stages? When we go to the big teaching hospitals the anterior segment clinics can have better assessment and suggestions and the teams are more used to serious cases. Optometrists can refer us, not just GPs, and the big high street chains are usually more clued-up than GPs about who's who. Or some regions have an independent NHS ophthalmology triage service (adult only), Google your NHS region + 'eye' to find what they call the referral pathways. Google 'NHS clinical guidelines eye' to find out what they are supposed to be doing with us.

Have you been offered punctal plugs? and preservative-free drops? Do they know what kind of dry eye you have?

Any basic treatment or advice here they haven't offered you? http://www.goodhope.org.uk/departments/eyedept/

If you post your region someone may recommend a new ophthalmologist. Otherwise, it's the NHS http://www.nhs.uk/servicedirectories or http://www.drfosterhealth.co.uk/ for private consultants. We also did go to Moorfields for an assessment and to find out about any more current treatments, eg they have cyclosporine and protective lenses, which not all ophth know about yet. http://www.moorfields-private.co.uk/Consultants

Jasmine and Karjade, If you go Private you're looking for a Surface Disease specialist with an interest in dry eye, or Anterior Segment (not just quick-fix cataract surgery). I like a private anterior segment consultant who's a big cheese in a regional NHS teaching hospital as well, eg Bristol, Manchester, Leeds, Newcastle, you're getting the same quality as Moorfields with the NHS guarantee, wider experience, and research interests, and they will also be used to working happily in teams with other specialties which you could access back in the NHS.

It's important to stay on a consultant's list in the NHS too, the referral pathways and local services are changing fast - hopefully for the better. Our GP is much happier to make a daring referral if we've already got a letter from the desired consultant in private practice, otherwise they feel they should 'treat in the community or local'.

[Jasmine]

Karjade please don't despair I have been where you are, especially in the weeks and months following Lasik surgery. Is there a reason for your problem or did it just come come of the blue? I would advise that you see a specialist rather than your GP because they simply do not know enough about this condition. Today I have bought a humidifier to use use at home because I have a very dry house and this evening my eyes feel a little less dry so - fingers crossed!

I am sure you will find a lot of information and support on here because we know what you are going through.

Please stay positive

Jasmine x

[Karjade]

I was diagnosed with normal pressure glaucoma two years ago and just took drops at night. But in December they said the pressure had gone up a bit and I needed drops in the day as well. This is when my trouble all started - I have been on three different glaucoma daytime drops and all of them make my eyes severely dry. The hospital said I have no choice but to take the drops and they will try and treat the dry eyes. I have had so many different dry eye drops and two weeks ago the hospital put me on Hylo Forte preservative free which the doctor refused to prescribe because it was too expensive. In the end I bought some myself at £18 but they are not working that well. They are very thick and leave me with more blurred vision - I had a blood test for Sjorgrens which came back negative. I was recommended to try Clinitas Eye Drops because the sodium hyaluronate is 4% which is more like natural tears together with Vismed Gel. I dare not go back to my doctor as I know he wont prescribe it - I tried to buy it off the internet but you have to have a prescription. I feel so helpless and cannot bear the thought of living like this for the rest of my life. When you tell people you have severely dry eyes they do not realise how distressing it is and I am so glad I have found people on this forum who understand how it can be a living hell. As you can tell I am new to dry eyes and I am still in the panic stage. Thank you all very much for your support

[Rebecca Petris]

I was diagnosed with normal pressure glaucoma two years ago and just took drops at night. But in December they said the pressure had gone up a bit and I needed drops in the day as well. This is when my trouble all started - I have been on three different glaucoma daytime drops and all of them make my eyes severely dry.

Hmmmm

Karjade do you mind listing the different glaucoma meds you have been on. I am wondering if you're having a reaction to the preservative. It is normal for glaucoma meds to be drying - EVENTUALLY - because the preservative common to most of them is quite toxic to the cornea over the long term. But it is absolute NOT normal for your eyes to tank like this within a short time of changing a glaucoma drop regimen (you said "my eyes burn, sore, blood shot and blurred vision.").

p.s. I have split the thread into two just because the topics are slightly different (lasik vs glaucoma)

[Karjade]

I am at present on Azopt - I have had Alphagan and Saffratan (?) which was preservative free which was as bad as the others. I am on Xalatan at night which on its own was ok until I went on the others and I seem to be as bad with this as well. My eye pressure is within the normal range but my optic nerve is damaged so I am too scared not to take the glaucoma drops - I attend Northampton General Eye Department Hospital and it is so hard to get an appointment. All the hospital say is you must not stop the glaucoma drops - so I either go blind or have dry eyes!!! What choice do I have?

[littlemermaid]

Karjade, It's important to feel comfortable with an eye clinic ongoing and have opportunity to ask questions. How are you feeling about Northampton long term? Is it your best option? Maybe talk to Patient Liaison and hook up with the local eye trust charity to get the inside story on what the service is like and what's available to you. Or this may reassure you that you are in the best and most convenient clinic, it's just that access to the docs for ongoing care is the problem.

When you present at A&E are they passing you to your consultant's clinic? Are you getting enough guidance on how to look after the dry eyes? We are finding we have different clinics for different parts of the eye, even different hospitals now. Are you with the cornea/surface disease consultant as well as glaucoma?

Often some hospital optometrists work in high street opticians as well - I would ask them directly where and consider seeing them as you need them for checks and questions. They could get you back into the hospital clinics as needed, and monitor this and talk about NHS eyedrops, without the triage nurse or emergency appointment hassle.

GP could refer you to Moorfields NHS but if GP doesn't understand, as usual, or the NHS wait is too much, you could phone or email Moorfields Private right now for advice and be seen within the week, very fast if you mention glaucoma and inflammation. http://www.moorfields-private.co.uk/Consultants - Valerie Saw (anterior segment), or Claire Daniel (ant seg + dry eye), or Stephen Tuft (cornea boss), all in my personal dream team, but not sure who on glaucoma - can anyone help?

Or, just as good, better if it's NHS with regular follow-up and a good team, could you make it to Birmingham Midland Eye Centre? or http://www.oxfordradcliffe.nhs.uk/eyehospital? Oxford is busy but they have got good systems and might be the most convenient. Or consider going Private at Northampton, Oxford or Birmingham just for second opinion? (long term you need an NHS clinic) I'm sorry to suggest doc-shopping but it's important to know there are other routes available even in the overstretched NHS. A clued-up high street optometrist could advise on options if you can find one. These are the things I didn't know when we started this journey, I genuinely thought the NHS would refer us around as needed.

Drops available to optometrists in UK if there's anything useful http://www.med-support.org.uk

Digging in our regional PCT website I found the approved list of eyedrops supplied NHS - pharmacy or GP knows it (make sure they're online) - each PCT is slightly different what they'll fund. Maybe speak to Northampton hospital pharmacy for advice, it's interesting how helpful some pharmacists can be. They will have access to additional NHS drops.

We are using normal saline 0.9% Minims (cheap and NHS, no probs getting this) frequently to reduce chemicals on the eye surface, plus occasionally Hylotears or Hyloforte for convenience and in case HLA is useful. Anything here? http://www.dry-eyes.co.uk/ Spectrum Thea is thoughtful about sensitivity.

Why are they still using glaucoma eyedrops that are causing bad side effects? If you haven't seen this, it's essential reading http://www.nhs.uk/Conditions/Glaucom...Treatment.aspx Really hope you can find comfortable and happy with supportive and accessible docs. Certainly I would say the tips and experience we have read here about looking after the eyes has helped most.

[kitty]

I was recently diagnosed with glaucoma, was not tolerating the glaucoma drops due to the preservative. They made my DES so much worse. I discussed with my eye doc and got a different drop which I am able to tolerate much better.

[abbygirl]

Karjade,
I have the same problem with my glaucoma drop making my dry eye much worse. I use Timoptic in Occudose which is preservative free. I have learned afew tricks along the way so if you are interested let me know. I tried to get away with taking the drop every other day but am too afraid of the consequences down the line.

[Karjade]

abbygirl/littlemermaid/kitty

Thank you all very much for your help. I know I sound a bit dramatic but being diagnosed with glaucoma and then getting dry eye syndrome has been too much for me to take when I think this time six months ago I was "normal". I have not got the support from my GP and he is not prepared to try me on different dry eye drops to see what works for me. I went to the hospital three weeks ago and he had a good look at my eyes and said they are severely dry but nothing about the glaucoma and optic nerve. I am still at the stage that I am scared to ask too many questions because I go into panic mode - especially when he told me last December that the optic nerve was damaged a bit more and I was put on day time drops. I know I have to do something soon and I was thinking of going to see my Consultant privately (whom I have never seen only the Registrars). I have to go back in June for a scan to the back of the eye which I am dreading and a field test. I know this is normal for glaucoma patients but it is always in the back of my mind I will go blind! Abbygirl I would be interested to learn a few tricks and thank you littlemermaid for all your help.

[littlemermaid]

Karjade, You are quite right to feel this way and it's absolutely normal. This is why we're all here. Eyes are more scary than problems in other parts of the anatomy and we need reassurance not just that the docs know what they're doing but that people will help us and do what's needed.

This is why I'm thinking it might be useful to phone the eye trust charity for a chat about options and also see a Private consultant because sometimes we get b* all emotional support in the eye clinics because they are, in all fairness, run ragged. I'm wondering where the consultant was, since you were being assessed as a new patient. This is not a problem if you saw a trusted registrar who basically runs the place in god's absence and is after his/her job (my preferred doc option).

We've seen 7 GPs so far and they've all been total non-starter on eyes. First line, they've always given us wrong assessments and drops (like allergy when it's obvious MGD for 1y) and been particularly bad on understanding how eye pressure affects eg the optic nerve head and retina, and the urgency of controlling any inflammation, and thus not referred correctly. It is wrong to ask GPs to manage or assess these conditions without training or microscopes. What they should be doing is referring either to the hospital eye clinics or to optometrists http://www.college-optometrists.org/). 'Tis true, there's a lot of optometrists out there faking it but once we get more informed about our eye conditions it's easier to judge how useful they are for 'co-care'.

A high street optometrist who knows what they're looking at is difficult to find but so useful - they can be good on referral, doc-shopping, and emotional support. But it has to be a good optometrist and this is why I'm recommending phoning up and asking the hospital optometrist service which of their people works 'in the community' on the high street. These are the optometrists who can stomach our conditions and give more sensible advice.

Panic mode: OMG tell me about it. Every day, do relaxation techniques so it becomes a habit. Use a tiny trick like pressing thumb and finger together as a trigger to relax and focus when you feel the panic rising in consultation or waiting room. Knowledge is power http://guidance.nice.org.uk.

My current behaviour is to relax, mull on what's actually needed, and think about how I can get it. This way I feel more in control. It's certainly a useful strategy to chat up support staff in the eye clinic and ask what they think you should be doing, nurses, desk staff, optometrists. Ask gentle direct honest questions.

You may need 3 specialists: glaucoma, cornea, retina! Also we have to get used to, and demand, ongoing monitoring.

If you see a consultant Private, ask the secretary to make sure the NHS clinic notes are available on the day, esp the monitoring.

Retinal scans are absolutely fine - LM's had loads and it's easy. The Imaging guys have always been really pleasant and stress-free. The joy with the various equipment is that you get a very good ongoing record, and with OCT you get a conclusive 3D image of the optic nerve head. When the nurse is about to put dilation drops in, tell them you have severe dry eyes with very little tear film and you will need saline eyedrops as well while you wait otherwise you can't open your eyes (exaggerate if need be), otherwise you may well be sitting there desiccating under the airconditioning for ages because they don't realise (I always assume they haven't read the notes as a start-point, that way we are always pleasantly surprised!). Consider wearing wraparound sunglasses.

Visual field test is easy and relaxing and they'll be very kind. Basically you concentrate on the middle spot, then click the button when you see a little light elsewhere and they are spread about sequentially over the screen. It just drags on a bit but you can ask for a break because it's not an endurance test, just an assessment of what you can see that day with margin for error. A really skilled eye doctor or neurologist can hold up a pencil in different parts of your vision and work out if you have any loss of field - I'm so easily impressed - but the computer-game machine is better for ongoing monitoring. Optic nerve damage repairs in early stage, this is why they're looking after it and you won't go blind.

Are you using wraparounds and humidifiers for the dry eyes? See Rebecca's Dry Eye Bulletin on moisture chamber glasses, through DryEyeZone.

My motto currently is: if you need something medical, pursue it. No risks with eyes. Welcome to PM if you think our experience might help. Keep us posted.

[Karjade]

Littlemermaid, thank you for your message and support. Why are the dry eye drops not working for me? I have tried so many different ones and none of them seem to make much difference. I do not get the gritty feeling - just sore, pain, burning, itchy and blurry vision. Do the drops work for you and if so what are you on? I bought some Clinitas Soothe today but they are just like the rest. I was told that the higher the sodium hyaluronate the more natural to tears and Clinitas Soothe is 4% which is one of the higher ones. Am I expecting too much straight away or do they take time to work? My doctor said they work at once but one Registrar said it can take a couple of months. I have never had panic attacks in my life before until now and I know I must try and relax but it is so hard and my imagination runs wild. The one thing that helps is to take the dogs for a long walk and to get out in the fresh air. I am so tempted to stop the glaucoma day time drops for a week or so (because my pressure is normal) and just continue with the night ones to see if this makes any difference. I know I should not do this but I don't think a week will make much difference. We have an emergency eye clinic in our hospital which I have been to a couple of times and you can wait there for about five hours! I am using sunglasses but not wraparounds and I am most definitely looking into buying a humidifier but not sure which is the best one to get - have you any ideas? Thank you so much for all your help - I just want a magic sure and make it all go away.

[littlemermaid]

http://www.youtube.com/watch?v=XOAkmt7RTYk Here's a good video by Prof Baudouin, ocular surface and eyedrop maestro.

Other useful places to read are PubMed and Medscape, if you haven't found them yet.

Notice we are 'paediatric ocular rosacea' so it's my teenage daughter - like Prof B, I think all these drops are changing the eye surface, and then the inflammation starts, both on the surface and around the eyelids which includes the lacrimal glands and oil glands, so you need to see a Cornea consultant as well as your glaucoma team. The artificial tear eyedrops are to keep a tear film going so that the surface can heal. We are using saline only to try to reduce the chemicals.

We are finding that if we manage this dry eye well we can really get on with more fun things in life, once we got our heads round what's needed. We got a cheap humidifier from Argos but now I'm wishing I'd spent a bit more and got one with a humidity meter, also drying towels on the radiators works!

Would you list the eyedrops you're using so people with glaucoma can talk to you? Also what type of glaucoma do you have?

[Karjade]

I am using Azopt twice daily and Xylatan at night. I have two different ones because I suffer from mild asthma. I am limited to what I have because of the asthma - I asked to be changed the last time I went but he says all the drops will be the same and the glaucoma drops are more important to take than the dry eye ones. At that time I just wanted dry eye drops but now I wish I had pushed to try different preservative free drops for the glaucoma.

[Karjade]

I have made an appointment privately with my Consultant (who I have never seen) on Wednesday afternoon. It is costing £130 for a consultation but I will take a list of questions with me (any suggestions which would be the right sort of questions) and then I will take it from there. If he suggests plugs I can get them put in on the NHS. I went to my GP yesterday and he has given me some anti-allergic drops which sting like hell and so far I think they have made my eyes drier. He also told me to take a anti-hystamine every day and use these drops 4 times daily - I feel I am just putting drops in my eyes all day long and it cant be any good for them.

[littlemermaid]

Karjade, If anti-allergy drops are stinging like hell, they are trashing the eye surface. Sorry, but the GPs do not have a clue. This sounds like the 'if it's not infection it must be allergy' GP solution to red eye.

Why is he interfering when you're with a hospital consultant? Are we sure he's read the notes? However, if the GP has doubts about the consultant, this would work to your advantage for referral elsewhere if you want it.

The ophth will want to assess the eyes 'clean' without interference and reaction to random drops. Can you manage on saline or a bland tear substitute till then? Must keep using glaucoma drops, of course.

I shouldn't give a strong opinion on this but this is exactly what our GP did, pointlessly, without knowledge, and contributed to yet more disaster, damage and sensitivity.

Consultant appointment: take a look at Rebecca's advice in DryEyeZone.

Also, I'm thinking you desperately need a local optician - for assessment, monitoring and referral as needed (also you won't have to use the GP). Especially for monitoring the glaucoma: eye pressure, retina (esp if you're tempted to tinker with the glaucoma drops). You want a very good one who works in the hospital service + high street part-time. Ask the consultant for help finding one. If no luck, phone the hospital optometry staff and ask who works 'in the community' for glaucoma monitoring (if they can't do it). That GP is scaring me now!

[abbygirl]

Karjade
I also use a very drying pressure drop and here are afew tips I have found that have helped me. First of all...try not to stress!!! Take it from me..I had major stress about my eyes for over 2 years and it did me no good!! Try not to think ahead of yourself (what COULD happen) and enjoy your good eye days!!! It is an everyday decision to remain calm and happy.

I put Refresh Plus Tears in my eye first thing in the AM, set my timer for 15 minutes, instill my pressure drop..set timer again for 15 and then put a full vial of tears in to really drench my eye. If they are really sore/puffy I hold my cold rice baggies over them afew minutes.

I have found 3 drops that work for me. These range from very "light" drops to the thickest drop and I use these throughout the day. 1. Refresh Plus Sensitive 2. Refresh Optive Sensitive 3. Refresh Celluvisc Sensitive. I always use the Celluvisc before bed. I also use my Onion Goggles while watching TV and in the evening whenever I can.

I hope these tips help you... Stay positive and keep asking questions!! Good luck Wednesday!!

[Karjade]

Thank you both. I have still not taken by glaucoma drops in the day until I see what happens on Wednesday. I am taking the night ones so I am doing something. The last time I went to the hospital about a month ago my eye pressure was 16 (normal pressure is about 12 to 22) so I will wait and see if he can give me an alternative. I have stopped the anti-allergy eye drops and am trying not to mix the dry eye drops. I was taking a bit of this and a bit of that to see which one works better and really mixing them!! The one I am sticking with is Hylo forte but it is so thick it leaves a layer on my eye and I feel I am looking through a net curtain all the time but because I know it is the drops I am not getting anxious. The doctor also wrote a prescription for anxiety and anti-depressants but I have decided not to take them and try to cope with my dry eye on my own. I know I should not be stopping the glaucoma day time drops but it is only six days and it usually takes about three weeks for the drops to get out of the system and by then hopefully I will be taking some different ones. I have normal pressure glaucoma but at the end of the range 19/20 which I was told was probably too high for me but I need to know if it is these drops which are making my eyes dry. What are Onion Goggles? I have never heard of them! I will keep you posted about Wednesday.

[abbygirl]

Hi Karjade
My pressures run anywhere from 13 to 18 and my doctor seems to think that is OK. I only take one drop in one eye in the AM. I do not have any optic nerve damage just high pressure. The drop definately makes a big difference in my eye being dry!! I tried to go without for about a week and my pressure went up to 21 (not good).

I also tried antidepressants and they did help me thru a really rough time with this....if you need help to get yourself straigtened out stress wise...do it!! I was on something for about 3 months and it really did help!! Now I can think more clearly and can actually stop myself from going down the stress path!!

Onion Goggles are actually plastic glasses that are sealed all the way around with a piece of foam. They are made for cooks who chop onions!! I bought mine from a cooking store but I believe Rebecca sells them in her shop. They have been a life saver for me!! Not beautiful by any means but who cares in your own home!!!

[Karjade]

Thank you abbygirl. I am still not sure about the antidepressants. I have to stick with thicker dry eye drops because the more liquid ones like Systane (without preservative) do not work and make my skin around the eyes red and sore and I have been putting E45 cream around my eyes to help with the dry skin. I have a fight with my doctor for him to prescribe Hylo Forte (samples were given to me by the hospital) because it is expensive. He did give me a prescription but boy did I have to fight for it - I can buy them on line from Scope Ophthalmics but why should I! I am going to put in a repeat prescription next week and we will see. The onion goggles seem good and I will look for some. Let you know what happens tomorrow with the consultant.

[Karjade]

I have been to see the consultant which I thought was a waste of time and money - I was so disappointed. I suppose I expected him to sort everything out and wave a magic wand. Instread he is passing me on to a Glaucoma specialist. To tell you you the truth I think I knew more about dry eye than he did - he just said carry on taking Hylo Forte every two hours and my eyes are severely dry. Does anyone know about Sjorgrens? I seem to be going round in circles and getting nowhere and trying to find answers. The consultant said I obviously could not tolerate the glaucoma drops (which of course I already know!!) and I would have to wait a few months to see this glaucoma specialist on the NHS or once again go private and get in within a week. I have no choice but to go private and pay as I cannot go a few months without the glaucoma drops. I cannot live with this anymore and I am feeling very depressed and scared. Where do I go from here?

[littlemermaid]

Can you make it to Oxford Eye Clinic? You would be in the Oxford University hospitals network with the best chance of good internal referrals and more integrated care. It is overloaded, of course, but very organised. Any local optometrist can refer you because your GP sounds as hopeless as the 7 we've seen so far. This doesn't mean you have to give up local care. It means you are a special case and need to consult in tertiary referral, then continue both or either, whatever's best for you.

I'm not seeing it as money wasted because the consultant sets the tone and standard for the clinic and all is thus revealed. You desperately need comfort and local advice, and I'm still thinking your local eye trust charity would be a good contact.

Re access to PF glaucoma drops, if your glaucoma guy is a non-starter or hesitant to use Moorfields contacts, then it's about trying someone else. What type of glaucoma do you have? (you can get copies of the notes from the hospital Medical Records, and all consultants' letters from the GP)

I promise things get better when you have docs in place that you are comfortable working with. Sometimes this means paying one-off when you need them quickly, then continuing in their NHS set-up. Half the battle is coming to terms with this level of *, and then getting the treatment options sorted. Have you got help with this?

[Karjade]

Does the Oxford University specialise in Dry Eyes because I have two things going on the Glaucoma and Dry Eye Syndrome which I feel the drops are definitely causing the dry eyes but I cannot stop them because my pressure will go up and damage the optic nerve even more. I have normal pressure open angle glaucoma but I am not sure how the optic nerve has been damaged if the pressure is within the normal range. Yesterday my eye pressure was 16/17 in both eyes and the normal range is 12 - 22. He says I may have to get it down to about 15 so as not to cause any more damage. I am in a catch 22 situation - I can't stop the drops for the glaucoma and I cannot heal the dry eye unless I stop the glaucoma drops. I will see what this glaucoma specialist can suggest and I will ask her if she can refer me to a dry eye specialist. We do not live too far from Oxford but whether she will refer me is another matter - I know my doctor wouldn't!! Can you tell me what my local eye trust charity is and how they can help? I have just given my eyes a good soaking with Systane drops because hylo forte is so thick and sticky and coats the eye. No I have not got any help with treatment options - I just seem to be passed on to someone else. I have only had dry eyes since March so I am still knew to this and still in the panic stage. I am so trying to keep positive but I haven't got there yet! My poor husband tries to help but gets so confused with all the drops I am taking and when I am talking about glaucoma he thinks I am talking about dry eye and visa versa!!

[littlemermaid]

Karjade, You are doing a great job coming to terms with this and handling it all well. We know this because you are here with us all, and taking charge of your options.

http://www.oxfordradcliffe.nhs.uk/eyehospital/home.aspx Oxford Eye Clinic is at John Radcliffe Hospital, which is part of Oxford University Hospitals NHS Trust. What takes us there is the scope of treatment and quality of staff and access to great equipment and monitoring, not available locally for us. This is a tertiary referral hospital, when local isn't enough, but also serves the greater Oxford area and outside it, which is you. See the consultants listed: anterior segment/surface disease, glaucoma, neuro-ophthalmology. I think a way in if you want to go there is, sorry to say it but needs must when the NHS budget drives, that the anterior segment consultant has failed to test for obvious dry eye causes like Sjogrens even in private practice, and it would be done there. I don't mean this as a judgement, just as a way of getting referral if you want it.

Our GP was awful last time we asked for referral - she said they couldn't do tertiary referral outside the PCT unless we'd been there Private first and got the go-ahead! Hoping your glaucoma specialist gives you good advice. If not, there are other ways...

http://www.eyecaretrust.org.uk/ These guys should know about your local volunteer eye care trust, otherwise it's phoning Patient Liaison for information to see if they have contacts. I will never forget a wonderful kind woman from this trust who came up to us in the eye clinic to find out how we were feeling. When does that ever happen normally? How nice would it be to make contact with other glaucoma patients locally. They would help with local knowledge.

Being passed around is good, because you get lots of opinions, and a feeling of expertise as you yourself learn more. It could well be that Nottingham is the best place for your care, but at least you are in control and know you have other options.

Hopefully, the Glaucoma specialist may have some more cards up her sleeve too. These days I've come to terms with paying to queue-jump according to our needs if we can't get a decent appointment time. It's worth knowing that appointments are not really made according to clinical decisions unless the consultant has specifically said so or they are following a treatment protocol interval; they are more according to what's available on the computer at the point of booking. Consider phoning/emailing the Glaucoma Consultant's NHS secretary and say the Anterior Segment/Cornea Consultant has written to her about the eyedrop damage and you need to be seen fast to resolve the worsening problem with side effects including pain from her prescription eyedrops. She will ask the Glaucoma Consultant what she wants to do about this.

Have you had orthoptics checks yet for your vision to put your mind at rest about the optic nerve monitoring? We've been told some vague rubbish about optic nerves sometimes so it's good to get clarification and reassurance from other doctors and optometrists about what sounds like an off-hand comment by someone for just-in-case checks(?)

[abbygirl]

Karjade,
I know exactly what you are going thru!! You need to stress to the Glaucoma specialist how much pain the pressure drops are causing you. It took lots of convincing to get my doc to listen to me.. The only thing the Glaucoma doc is interested in is preserving your optic nerve!!! I went into my doc with BEET RED eyes and he says "you think that's red!"
It may take some trial and error to find the right mix.
I know this is rough... And I know that this is going to be an ongoing thing for me and it makes me MAD!!! But what good will that get me in the long run?? I hate the way my eyes dictate the way I feel!!! Sorry to vent but I think you understand...

[littlemermaid]

Karjade can phone the Glaucoma Consultant's NHS office right now and report surface damage to preserved eyedrops now she has a Private assessment from the Cornea Consultant. She should see her fast if she reports it to her as a 'drug reaction'. It's a very good idea to give the doc the facts beforehand so she can Google it, whatever, and find preservative-free eyedrops or consider other means of relieving eye pressure, otherwise it's another wasted consultation 'I'll think about it'.

To get the Cornea Consultant private practice letter faster (and it's amazing how slow they are considering how much you've just paid), phone the private practice secretary and ask for it to be faxed through to the Glaucoma Consultant NHS office urgently today because of 'drug reaction pain + eye surface damage' to the Glaucoma Consultant's prescription.

If you queue-jump in private practice, the consultant will say things like 'you shouldn't have to pay for this' and look guilty. And so they should, because they are being paid a lot of money to set up and run an efficient NHS clinic service. Obviously their NHS team are often not happy about this and will be very sympathetic to you but may well be fed up with the boss but staying silent in order to pay the mortgage.

Re disappointment and The Cure, it's a question of finding docs you like to work with, also so you can ask the questions and get the best available treatment. I've realised it is all out there for us, mostly within the NHS, but as Abbygirl says, even once you've made up your dream team, it's getting your Cornea doc to communicate with your Glaucoma doc that's the trick. They do this through the letters, so that's why it's worth really making sure the letters arrive and get acted on fast, and the support staff can sort this out for you - this is why they like working in hospitals.

I wouldn't rule out phoning the Triage Nurse for advice on how to handle their particular clinic systems, especially when they're in a good mood before morning clinic gets hectic, or winding down at the end of clinic maybe 5pm-ish.

Round these times the Consultants are In but looking at individual cases. Before clinic, the Registrars are reading the notes, booking the tests, and asking the Consultant what they want to do about that day's patients. The Glaucoma Consultant could see you before morning clinic if you can emphasise how bad the 'drug reaction' is (we're just calling it this to get you seen fast...).

The key to getting a bit more pro-active and more in control for me has been to start to understand (and sympathise) with the NHS chaos, but to get in touch with when I was a good manager at work and made things happen, and treat this more like a job where things have to get done, whether it's one way or another.

Karjade, I hope once you get things moving with the Glaucoma Consultant and feel more in charge and get good relationships with other NHS eye clinic staff like the optometrists, the panic will subside. The dry eye onset is so recent it could well be a quick fix if she changes the treatment! It's very important you take someone supportive with common sense with you to your consultation so they can take notes and remember to ask the list of questions if needed - Patient Liaison can easily help with this if you can't think of anyone.

[Karjade]

Littlemermaid - thank you so much for all your help. I have an appointment on the 1 June for a field vision test and HRT (scan of the optic nerve and eye) on the NHS so I suppose it would be sensible to wait until I have had this before seeing the Glaucoma specialist. I cannot see how the optic nerve has been damaged when my pressures at the moment are 16/17 so what is causing the damage. I am keeping my fingers crossed that no further damage has been caused or I will start worrying myself sick over that! I really feel the only way forward for me is to pay and I am prepared to do that for peace of mind and the help I desperately need. I will definitely ask about Oxford Radcliffe when I see the specialist because I have to get it sorted. There is an operation you can have to lower the pressure in the eyes so you don't have to take drops but I was told it is a risky operation. Also there is the punctual plugs but I do not know anything about them and the success rate. I am once again mixing all the drops to see what works best for me - some days one works better and another day a different one works better. Abbygirl is so right - my eyes dictate how I am feeling every day and I am so wrapped up in my eyes that nothing else seems to matter. I cannot organise anything because I don't know how my eyes are going to be. I am going to Brighton on the 30 May with a friend and I worrying about whether I will manage it for a whole day with my eyes. Will I ever be normal again?

[abbygirl]

Littlemermaid...you have such good advice for Karjade (everyone really). I am in the States so you have a better handle on the way the doctors operate in the UK.

Karjade-My days fluctuate like mad too..and I have just learned to go with it. Believe me, it took some real soul searching to get to this place of "ok-ness." Once things start to settle down for you and the unknown is cleared up you will start to let go of the panic. I hope you find a compasionate Glaucoma doc..because this aspect of the eye problem is scarey.

I also was offered the pressure surgery (a Trab). I won't get into it but it would have altered my lifestyle significantly and luckily we got my pressures under control with drops. So, I have to feel fortunate for that!!!

I see my regular eye doc this afternoon for a check-up so cross your fingers!! I am due to see my Glaucoma doc too.

[Karjade]

Thank you abbygirl. Hope you get on ok with your eye doc today - let us know. What pressures are your eyes - are they same in the States as they are in the UK. I get mild asthma so that is why I have to have drops three times a day. I was reading something Rebecca put on about the preservative benzalkonium chloride used in glaucoma drops which is toxic to the cornea and both my eye drops have this is - no wonder I have dry eye! She said push for either preservative free or a milder preservative. She thinks it is terrible that people are still using this on a daily basis and it is bad stuff. I will definitely mention this when I go back to the hospital. I do accept taking the glaucoma drops everyday but it is the dry eyes they have caused I cannot accept. I worry that I am not taking the day time glaucoma drops but hopefully I will see someone again soon and then I can get some different drops. Littlemermaid - you are so knowlegeable about everything and I have learnt a lot. Thank you both xx