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.