25 and getting drier

[allendintears]

I'm 25 and first started getting dry eye about 3 years ago, when I stopped being able to wear the contact lenses that I had worn since I was 13. (It's interesting, because my mum had told me that SHE had stopped being able to wear contact lenses after wearing them for about ten years, but it's only now that I realise that perhaps her eyes were dry too and there might be a genetic component.) Anyway, at first it was just that I couldn't wear contact lenses, which was annoying but I had no idea how much worse it was going to get! About two years ago I had a few episodes where I just had really strong eye pain, all day (this has continued to happen occasionally), and it was so scary I ended up going to A&E at Moorfields (I live in London). That's when they told me that I had dry eyes, "caused by Blepharitis". I then ended up going to a ophthalmologist for ongoing care, who said that she couldn't see any blepharitis (first in long line of doctors telling me different things!) but she told me to take Omega 3s. I did that for a while and found it helpful - it seemed to clear up. The next time it really caused me trouble was when I started trying to learn to drive, and I just had to stop as my eyes got so painful and in fact the very act of spending an hour driving seemed to cause me to relapse and for my eyes to start really troubling me. I stopped learning to drive! Next thing I got a job, working all day 8 hours in front of a computer... and now my eyes are driving me crazy. For the past few months I've had pain consantly pretty much every day (apart from when I have been on vacation) and I am trying to limit my screen time as much as possible. Even reading/writing on paper seems to be causing me trouble, and I am getting really depressed because not being able to work, read or drive without pain doesn't seem a sustainable situation.

At the moment I am putting in eye drops every 20 - 30 mins. I started using the mist with liposomes, which seemed helpful, but it cost $20 and I had used the entire bottle within 2 days!! In the UK a lot of the drops you guys talk about don't seem available but I have been using Blink eyedrops which have a preservative in them which apparently dissolves in the eye. I have also began to use a hot compress twice a day and doing lid hygiene with Q-tips - and still taking the Omega3s. Nothing seems to helping yet. I have another appt with an ophthalmologist in a couple of weeks, but this is somebody I have seen before and he wasn't that helpful - seemed to look at my eyelids, and told me I had allergies and should use an allergy eye-drop? But then I discovered it had benzalkonium chloride in it, so didn't use it. Maybe it would have helped... To be honest I am not that trusting of doctors any more - have been told a lot of different and sometimes contradictory things and would really love to have some clear answers. Next time I go am going to try and see if he can tell me whether it is the tears themselves that are my problem, or the oily layer (or both!) Also have a dry mouth, but I had the blood test for Sjogrens and it came out clear, however I know you can have it even with normal bloodwork. So... confused. And a little despairing.

I think I really need to get myself a pair of those moisture glasses that I've read about here, for use with computers, but not sure how to get in the UK. Also really intrigued by the idea of the scleral lens, but I have terrible eyesight (minus 7.5/8) so not sure if suitable for me. I think I am going to ask the doctor when I see him about plugs (assuming that there is at least some aqueous component to what is going on), and also try taking Vitamin A. Am trying to stay hopeful, but I can see this is going to be a long road, and it's particularly depressing to realise that things have only gotten worse for me these past two years -am really inspired by the stories I have seen on here about people who have managed to come out the other side.

[Rebecca Petris]

Hi and welcome! sorry to hear what you're going through.

Next time I go am going to try and see if he can tell me whether it is the tears themselves that are my problem, or the oily layer (or both!)

Yes this really is important. I would ask for specific test results if possible but basically you want to know how your aqueous tear production is doing and assuming you have MGD/blepharitis in some form you want specifics: How quickly is your tear film breaking up? What do your MGs look like... Are they producing oil, are they blocked, is the oil thickened or just reduced etc. If the bleph is under reasonable control it sure sounds like you could benefit from plugs.

I think I really need to get myself a pair of those moisture glasses that I've read about here, for use with computers, but not sure how to get in the UK.

Unfortunately the high prescription presents a unique challenge... otherwise I'd just say liaise with some of the UK members about how to find glasses locally if poss. But with the high Rx it really limits things. There's motorcycle goggles that go over glasses - horrendous I know but they DO work and in the privacy of your home can be very helpful (see Evader 1 or 2 in the dry eye shop for an example). Then there's moisture chamber glasses specifically for dry eye that take high prescriptions - the only ones I know of are Ziena Oasis (some people in Europe order them from the US and then get an Rx put in them over there - there's the risk of course that they might not fit but most suppliers including DES take returns). Then there's MEGs - see seefit.net. Then there's custom moisture chambers but I kind of don't think there's any supplier on your side of the pond. One other option - you might contact the folks at heavyglare.com, they have an optician who's really good at doing high Rx in some of the lined wrap style sports eyewear.

Incidentally PROSE and sclerals can be done for virtually any prescription, that's one of their chief merits as they're also used for vision issues that can't be corrected with glasses at all. However before even considering that route you really need to exhaust the 'normal' dry eye treatment approaches.

[Dog2012]

I woud look at the products Hypo forte and NEW Thealoz® ...Great products my second best after serum eye drops.

Unfortunately the high prescription presents a unique challenge... otherwise I'd just say liaise with some of the UK members about how to find glasses locally if poss. But with the high Rx it really limits things. There's motorcycle goggles that go over glasses - horrendous I know but they DO work and in the privacy of your home can be very helpful (see Evader 1 or 2 in the dry eye shop for an example). Then there's moisture chamber glasses specifically for dry eye that take high prescriptions - the only ones I know of are Ziena Oasis (some people in Europe order them from the US and then get an Rx put in them over there - there's the risk of course that they might not fit but most suppliers including DES take returns). Then there's MEGs - see seefit.net. Then there's custom moisture chambers but I kind of don't think there's any supplier on your side of the pond. One other option - you might contact the folks at heavyglare.com, they have an optician who's really good at doing high Rx in some of the lined wrap style sports eyewear.

Incidentally PROSE and sclerals can be done for virtually any prescription, that's one of their chief merits as they're also used for vision issues that can't be corrected with glasses at all. However before even considering that route you really need to exhaust the 'normal' dry eye treatment approaches.

[/QUOTE]

[littlemermaid]

Allendintears, I think most of the eyedrops are available in UK now, one way or another. http://www.moorfieldspharmaceuticals.co.uk/ for prescription drops including various formulations of cyclosporine. Hopefully, people are doing better than me on cost and will post up with tips.

Pharmacies have been keen on our regular orders for over-the-counter lubricant eyedrops (Lloyds better than the others on ordering from different suppliers and offering deals). Independent pharmacies are telling me they will order in anything they can find online, even compounded drops subject to private prescription. GPs do private prescription for c£10 and private meds are not subject to VAT (HMRC 701/57) so cheaper than buying drops OTC in the volume we use because I like new bottles after they've been in the schoolbag 1m (Lloyds are offering us this deal but not Boots). Professional Pharmacists want a doctor's prescription because the amount of OTC drops we order monthly freaks them out, lol, so if they're not asking whether the condition's well-managed enough, they're dodgy, because Pharmacists and high street Optometrists are Primary Care qualified providers with professional regulations (see NHS website). This obligation to refer disorders to Ophthalmologists is a neat way into the hospital system or A&E Eye Clinic.

Obviously eyedrops are cheaper online but it's not wise to trust a supplier who isn't a regulated Pharmacist. Hospital Pharmacies are confused what they want to charge for NHS patients who self-pay for unfunded meds, talking about asking their NHS Trust Consultants for private scripts etc, which they would normally mark up. What we (especially paediatric) really want is any unfunded meds at the negotiated NHS cost - eg Hyloforte OTC £17, online £13, NHS £11 - supervised by Ophthalmologists and other Consultants involved for conditions, double-checked by specialist Pharmacists for interactions and toxic mix. Normally the Private Hospital Pharmacists would be looking for profit but I've sometimes paid 'cost' there, especially for something unusual ordered in, and it's arrived next day.

Individual CCGs seem to be deciding now what eyedrops they will fund NHS for eye disorders - search your 'CCG + formulary' but national NHS England policy for specialised services is decided by 'senates' now called Clinical Reference Groups http://www.england.nhs.uk/npc-crg/group-d/d12/. Most CCGs seem to be using Buckinghamshire Formulary as guidance in NHS http://build.formulary.co.uk/chapters.asp. Where hospital Consultant prescriptions are not honoured by GPs because funding is refused, NHS GPs are issuing private prescriptions. One lady told me her GP wrote to the hospital to say they wouldn't fund the oral med except as a generic, which the child got severely ill on because the gastro had specified a coating, and the hospital paid for the formulation. GPs are all incentivised to reduce their CCG drugs' spend and long term conditions seem like an easy target just now. I just had a GP phone to justify our spend, paediatric, for 'dry eye' lubricants and had to send horror research and photographs on progressed untreated corneas and rosacea skin because they haven't understood the conditions.

We just take guidance on the most suitable eyedrops, eg ingredients, viscosity and tolerance, from cornea Consultant specialist teams and high street Optometrists with further qualifications who also have hospital service experience, who are hopefully more interested in supervising best results rather than shifting stock.

These guys have been helpful and are UK supplier for Spectrum Thea among others http://www.butterflies-eyecare.co.uk...epharitis.html.

Of course Rebecca has a useful website shop http://dryeyezone.com/

Moisture chamber glasses are difficult but the high street optometrists are stocking a few and I saw a pair with foam seals in Boots/D&A this year - I've been advised to ask their Head Office what they can do on prescriptions, but we haven't got further than prescription sunglasses and swimming goggles so far. When I ask, optometrists are talking about sports prescription wraparounds with clear glass but I don't know whether that would do what you need. They are saying they can do any prescription as long as we are looking through the flat part of the lens.

Surely someone will make their fortune selling computer user, sports and gaming prescription sealed wraparounds soon - there must be so many people suffering the computer/airconditioning/sick building combo in call centres and offices, military and IT.

Even high street optometrists are inserting punctal plugs these days but we have ours done by Consultant Ophthalmologist team. Seems like a good plan.

Sorry the above is 'work in progress' on eyedrops but I'm hoping for other people's experiences to help us all. Welcome, Allendintears x

[allendintears]

Hi everyone,

Thanks so much for all your help. I am really touched by your taking the time to offer such thoughtful suggestions, and I am so glad that this place exists - it's wonderful to have a community of people who know what this feels like. I will seek out some goggles and thanks Rebecca too for the suggestions re things to ask the doctor - also the tips from littlemermaid about acquiring eye drops in the UK and how to get best value.

My eyes have been feeling a tiny bit better today for the first time in about a month - one thing I really don't understand about this condition is how things can really vary day to day, and it's so hard to tell why! Makes me think: if my eyes are capable of producing adequate tears sometimes, why can't they do it at other times? I suppose another answer is that my recent twice daily hot compresses are in fact having an effect... it would be nice to think that I might have some control over what is going on here!

I actually had a question about the compresses - I am worried that I am making them too hot (currently using one from the eyebagcompany - it is uncomfortably hot when I first take it out of the microwave) - but any less hot and it doesn't stay hot. I obviously don't want to be unwittingly causing myself more problems, so wondered if other people have tips on how to make sure one isn't overheating the bag. One thing I have noticed about doing the hot compress is that my eyes do indeed feel a lot better for about an hour afterwards, but I sometimes wonder whether that isn't just that the intensity and unusualness of the heat has in some way 'distracted' my eyes from the pain of the dryness... I am guessing that that is not the scientific answer, and that actually the heat is having an effect on my glands, but just wanted to check how others feel.

Thank you!

[Splat]

Hiya, sorry to hear you've been having such problems. I'm sorry I'm replying a while after you posted this, I don't come on here much really. I just wanted to echo the others that there are actually quite a range of eye drops available in the UK. I live right down in the South West but travel up to Moorfields in London every 3 months for a check up with my consultant, I have severe dry eye, ocular rosacea and MGD. I have the HyloForte eye drops and Cyclosporine, and just finished 18 months of doxy, both prescribed by Moorfields and then my GP back down in Cornwall fills out the scripts.

The cyclosporine alone is hideously expensive and the HyloForte at say £17 a bottle would cost me £51 a month as I use 3 bottles a month. But as I get it from the NHS, I buy a pre paid prescription card every year which costs me £110 and that covers as many prescriptions as I need in an entire year. As I'm on other medication for other health problems too, it's a god send, and just getting all those eye ointments and drops for under a tenner a month is something I'm very grateful for. I just wondered if it was worth looking into for you too.

I do sympathise, it's a horrible thing to go through. I'm 26 and haven't been able to learn to drive either.

[allendintears]

Hi Splat,

Thanks so much for your helpful comment - I didn't know about the option of pre paid prescription cards. At the moment I am using Hylo-Tear and Blink gel eye drops. The Hylo-Tear is great - amazing in particular that it is preservative free but seems to have an ingenious bottle so that it doesn't need to be packaged in those fiddly little vials.

I wanted to tell everyone that I have some good news to report in terms of managing my symptoms - it seems as though my dry eye gets hugely aggravated by both driving and also by working at a standard office computer, e.g. with a narrow bright screen that I am looking straight at/slightly upwards. I have started taking my laptop into work (wide, not bright screen that I am looking at down at) and the improvement is just unbelievable. I have also found my symptoms to be much better on weeks when I have not been working at all.

I don't quite understand why my eyes should be so incredibly sensitive to driving/ looking at certain computer screens - it seems like it must have something to do with the eye having a larger surface area and thus tears evaporating more quickly. I find it hard to believe how much of a difference that clearly makes! The dr told me I did have MGD, so hopefully if I keep up with the warm compresses I might be able to start driving again one day, but we'll see. Am so grateful that things are better now, but worried that it is just a temporary remission - will keep you all posted.

Thanks again for all your help.

[allendintears]

Hi Splat,

Thanks so much for your helpful comment - I didn't know about the option of pre paid prescription cards. At the moment I am using Hylo-Tear and Blink gel eye drops. The Hylo-Tear is great - amazing in particular that it is preservative free but seems to have an ingenious bottle so that it doesn't need to be packaged in those fiddly little vials.

I wanted to tell everyone that I have some good news to report in terms of managing my symptoms - it seems as though my dry eye gets hugely aggravated by both driving and also by working at a standard office computer, e.g. with a narrow bright screen that I am looking straight at/slightly upwards. I have started taking my laptop into work (wide, not bright screen that I am looking at down at) and the improvement is just unbelievable. I have also found my symptoms to be much better on weeks when I have not been working at all.

I don't quite understand why my eyes should be so incredibly sensitive to driving/ looking at certain computer screens - it seems like it must have something to do with the eye having a larger surface area and thus tears evaporating more quickly. I find it hard to believe how much of a difference that clearly makes! The dr told me I did have MGD, so hopefully if I keep up with the warm compresses I might be able to start driving again one day, but we'll see. Am so grateful that things are better now, but worried that it is just a temporary remission - will keep you all posted.

Thanks again for all your help.