Welcome to new members...

[Rebecca Petris]

Hello and welcome! Glad you're here (though sorry you need to be). I'm so glad you've found a more sympathetic, confident doctor. That's such an important step.

[Súil Eile]

What was the underlying condition that he diagnosed?

He reckons I probably have allergic conjunctivitis, which has been reacting to preservatives. His approach is to start treatment again from scratch. Currently I'm taking Vividrin for the next 3 months (and switching to SDU versions of everything). His hopes being that changing the ph balance of my eyes may help reduce the levels of bacteria. So in November he's going to take another look, see if the conjuctivitis has settled down and see if there's anything else lurking behind the scenes.

He's not convinced at all by the general 'blepharitis' diagnosis, but wants to treat one thing at a time to eliminate possibilities. I like his attitude so so far so good!

[Súil Eile]

Hello and welcome! Glad you're here (though sorry you need to be). I'm so glad you've found a more sympathetic, confident doctor. That's such an important step.

Thanks Rebecca! I'm trying not to get my hopes up too much, but it's nice to see a bit of light at the end of the tunnel...even if it is a bit blurry.

[FearlessTearless]

How I found the forum

Sorry, hit the enter button twice. Kind of hard to see the screen today. The irony of the best information being in a format that challenges dry eyes has probably occurred to everyone here ;-))

Cheers,
Polly

[FearlessTearless]

Doh

After I edited my repeated post, the other one disappeared? I am not so good at this!

I found the site in a search for 'dry eye diet', after the ophthalmologist suggested eating more walnuts. I was curious if walnuts were better for eyes than the fish oil I already take on the suggestion of my rheumatologist. I also eat ground flax seed if anything I am cooking will suit it. And yes, I eat all varieties of nuts.

After I found the site, I proceeded to challenge my dry eyes by trying to read everything at one sitting! This site is such a great resource, Rebecca, thank you.

I looked at the forum and found the questions and answers useful and the people polite and friendly (not as common as it should be), so decided to apply. Thank you for accepting my membership.

Cheers,
Polly

[gt43]

Tears (not just) at bedtime

Hello everybody ... glad I've found you. I'm not sure whether what I have been experiencing for the last 3 weeks or so is "dry" eyes or something else - but I just wondered how safe it might be to be using Polyethylene Glycol "tears" very frequently (at least every hour) throughout the day ? - I'm having to do this just to get through at the moment!

Sorry if this is a silly question - and I know lots of people here are probably having to use far more serious stuff - but I don't want to make things worse than they already are!

[Perception]

Frequency

Hello everybody ... glad I've found you. I'm not sure whether what I have been experiencing for the last 3 weeks or so is "dry" eyes or something else - but I just wondered how safe it might be to be using Polyethylene Glycol "tears" very frequently (at least every hour) throughout the day ? - I'm having to do this just to get through at the moment!

Sorry if this is a silly question - and I know lots of people here are probably having to use far more serious stuff - but I don't want to make things worse than they already are!

I've been told by one of my doctors that when using artificial tears that often, it is best to use preservative free ones. But my case (post refractive surgery) may be totally different than your situation.

[Rebecca Petris]

Welcome GT43, and Perception.

I've been told by one of my doctors that when using artificial tears that often, it is best to use preservative free ones. But my case (post refractive surgery) may be totally different than your situation.

That's true for everyone. Not all preservatives are equal (benzalkonium chloride for example is harmful even if only used a couple times a day on a regular basis, while preservatives used in artificial tears are considerably less toxic) but nobody should use a drop hourly that's got a preservative. - Now I know some will disagree but there is plenty of reason to believe that too frequent dropping can be harmful in itself even without preservatives. It's good to get some additional tools in the arsenal for managing eye pain/discomfort from dry eye.

[gt43]

Tears (not just) at bedtime ...

Yeah - it really doesn't seem sensible to be using so much. But this problem has really only happened in the last 2-3 weeks, and it's only through reading posts here that I've wondered whether it might be DES, so I started trying a few things. I bought Tranquileyes and raided the chemist for over-the-counter drops ... both of these help, the artificial tears in particular - but only if used frequently. That's what's getting me through the day at present.

I have an eye hospital appointment coming up next month - I had thyroid eye disease a couple of years ago and, having gone the two years of being more or less OK after the usual chemo, I think they are probably going to say it's resolved and discharge me - I suspect they're going to be dismissive of these new symptoms even though, in their way, they're causing me almost as much trouble at the moment!

Sorry if this is a total novice question then - what sort of drops are OK to use? If any ... ?
I started using the drops yesterday, and to be honest was expecting them to have little or no effect. The fact that they have helped quite dramatically, is a bit of a revelation, so I haven't done much research yet into what's best to use: I just hit the chemist and bought three different sorts!!!


(sorry not to be able to quote from reply - haven't worked out how yet)

[gt43]

Tears (not just) at bedtime ...

Ah! Just found the Lubricants FAQ ... will read ...

[Rebecca Petris]

Best of luck with your appointment. What kind of symptoms are you having?

[littlemermaid]

Thyroid eye disease and chemotherapy

gt43:

I have an eye hospital appointment coming up next month - I had thyroid eye disease a couple of years ago and, having gone the two years of being more or less OK after the usual chemo, I think they are probably going to say it's resolved and discharge me - I suspect they're going to be dismissive of these new symptoms even though, in their way, they're causing me almost as much trouble at the moment!

Oh no, we don't tolerate this kind of dismissal any more in UK eye clinics. Hopefully things are better this year, the information is available to them in recent journals and NHS doc websites have dry eye treatment guidance. There is no excuse for discharge without treatment or advice, or ignoring it until it's chronic inflammation, as they used to. Especially not in London. Especially not when you have to use drops every hour.

Search on dry eye in NHS websites, print out clinical guidelines if needed. Make detailed notes of symptoms and self-medication, stress how it affects your life. Any probs, you can ditch 'em and move on to a sympathetic doc through Choose and Book with your GP. There might be someone better at your current clinic you could request personally through Appointments. Maybe even ask the optometrists which ophthalmologist interested in dry eye.

Best wishes for finding a wonderful up-to-date ophth. with good follow-ups. Private message me anytime if you want to chat about local NHS.

[gt43]

Best of luck with your appointment. What kind of symptoms are you having?

Thanks, Rebecca.

What I’m left with after the thyroid eye disease, are eyes that tire easily, and are are sometimes a bit sore. They can be quite uncomfortable in the mornings: the right one, that was the worst affected, is quite often hard to open (not gunky, but sore and draggy); it takes that eyelid a while to “get going”.
To help with that, I occasionally tape or bind my eyes shut at night. My eyelids close fine, but somehow no longer have that comfortable feeling of being securely shut. I’ve noticed that as I begin to relax, a gap sometimes appears in my closed eyelids. I get the impression that my eyelids are looser-fitting than they were before – although not to any degree that registers with the ophthalmologists.

I have a little blob of excess conjunctiva in my left eye that never goes away. It's a nuisance outdoors in windy conditions and makes that eye run. I wear sunglasses in anything brighter than overcast conditions and have an impressive set of eyebags but other than that, compared to how it could be, I think I’m lucky.


That was how things were until about three weeks ago when, I woke up one day with eyes that were very sore indeed, damn sore, and red like beacons. I thought I was having a bad day, or else had some sort of infectious conjunctivitis, but there was no gunk. The outside parts of my eyelids were fine, just puffy.

This went on for several days. My conjunctivas were very swollen, my eyes streaming, and worst of all, my vision was shot to pieces. To say I struggled at work is an understatement, and I bought a sports visor to enable me to watch TV at home – the living room lights were agony. I wore sunglasses at work. Nothing had been this bad since the TED, which had started almost exactly like this, so I worried that it might come back.

Thinking about it, my eyes had been getting progressively sorer over the previous weeks, which had been a difficult time, and stress of any sort seems to go straight to my eyes now. And I’d been working intensively on the computer, trying to finish stuff for work.

The blob of conjunctiva in my left eye swelled partly over the bottom lid, and a similar blob appeared in the other eye. Blood vessels in the left blob burst repeatedly over the next few days – as soon as it started to get better, it bled again, so I looked like I had a pool of blood in that eye (sorry for gory details!).
Reading all this back, I’m wondering why I didn’t do something about it sooner, but I suppose that, having put up with quite a lot with the thyroid thing, maybe my idea of what to expect from “normal” is a bit skewed. I also didn’t feel great in general, and probably wasn’t thinking straight.

I had no idea what was happening, thought maybe I was overtired. I got some earlier nights and bound my eyes closed at night (slight improvement). I started to look around on the Internet, but, not finding anything specific that sounded like what I had, assumed it was nothing major and would probably go away.

I eventually went to see my GP, who was sympathetic, but gently pointed out that she isn’t an eye specialist. I looked some more on the Internet, began to wonder whether, as this didn’t seem to be about to go away on its own after three weeks, I might have developed DES, and bought some Tranquileyes. I got eyedrops, not expecting either of these things to work, but thinking that, if they did, it would tell me something about what was wrong.

And in fact .... things have been improving for a couple of days – I haven’t needed to use the drops so much today. Tonight will be my third night with the Tranquileyes, which I think have made the most difference. Not the most comfortable things, but more than worth it for the improvement!!

My eyes are more of a normal colour, although I think most people would still say they look sore. My conjunctivas are still very swollen and hot, and I now have a twin “blob” in my right eye. Vision is much better, although not back to normal. I’ve been very down about the whole thing, but today I felt able to go upstairs to the tea room at work – I’d been avoiding meeting anyone other than my immediate colleagues.

I’m sure this isn’t an infection. Equally, I’m almost certain it’s not an allergy. I think (fingers crossed) if it was the thyroid thing, I’d have other symptoms by now. My gut feeling, partly because of the way I felt generally just before this developed, is that it’s another autoimmune thing – but that’s just how I feel about it, and I could be wrong. If I get stressed or upset or a bit overtired, or if I do more exercise than normal, my conjunctivas swell and my eyes get a bit red – but nothing like this has happened before.

I apologise for a marathon post – it’s just that I have no other way to describe it, than just to describe it!

[gt43]

[QUOTE=littlemermaid;55931]gt43:

Oh no, we don't tolerate this kind of dismissal any more in UK eye clinics ... QUOTE]


Thanks, Mermaid. : )

I think I'm lucky(!) in that I was treated at a major specialist eye hospital. I can't really complain about the treatment for the TED - OK, I detested taking the drugs and no idea what effects that will have in the future, but I have a (comparatively) great cosmetic result, which in part I have to thank them for (the other reason being, apparently, that I have small eye sockets, which did not allow the eyes to move forward as much as they might otherwise!!). I couldn't have eye irradiation because (apparently, again) I have very fine optic nerves which wouldn't stand up to it well. I changed hospitals from one that routinely uses radiation as a primary treatment - they were insisting I must have it, but hadn't spotted that at all.

My only complaint, really, is a typical one for the NHS - the senior consultant is great, she knows her stuff - but I see a different student every time I go, and some of them are more understanding/interested/just better doctors than others. The clinic is always full to bursting, consultations invariably rushed to a few minutes and I guess that, once they decide that they've cured you, they just want you out the door! Oh, and once they put that yellow stuff in your eyes and you can't even see them, it's very hard to argue!

Thanks for the suggestions - you're right, we shouldn't put up with it.

[littlemermaid]

Consultants

Warmest hugs for a very difficult time. What worked for us recently: 'I am Mr/Ms [consultant]'s patient. Don't you think s/he would want to check this now it's worse?' This implies the scary consultant had a special interest in you and they better not muck up. I innocently say to someone new 'We have history with Mr/Ms [consultant or your favourite clinician]but I don't know what's in the notes about it', ie not much probably. Then, hopefully, they nip out and get them from down the corridor and you get a better assessment and decision. A relief to see someone you know and like, even for a quick look.

See what Rebecca says about symptoms. Sounds like you needed to go back to [major specialist eye hospital] when it looked bad. GP could have 'phoned them up for you. Or 'phone eye specialist nurse helpline.

Lord, I know it isn't easy, especially when you feel terrible and need help. I am so sorry that you are suffering and hope you have a very kind and useful eye appointment.