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**PAllen** · 17-Jun-2012, 17:34

Hi, Unicorn. welcome.

Your description of redness high up on the whites of your eyes and allergic type reaction on the inner eyelids sure sounds like SLK, which I've had for 2 years now. SLK (superior limbic keroconjunctivitis) is inflammation of the upper area of the whites of your eyes and of the inside of your eyelid. people who have it often go undiagnosed for a long time because it's uncommon and because it can only be detected with an expensive green dye. Someone else on this site who has SLK mentioned that she also has tight eyelids.

I wear contacts now which help a lot. when I don't wear contacts, my eyes will start to feel "thick", then they'll start to burn and the burning feeling worsens until I put drops in. The drops only help temporarily. Is that how your eyes feel?

There s also a similar condition called CLK that contact lens wearers get. I don't know much about it except that it mimics SLK. Think maybe I read it may be caused on chemicals used to clean contacts. I think it may go away after discontinuing contact use.

SLK is found in 2 percent of the population who have had Graves disease (hyperthyroidism). My personal opinion is that conditions like these can be caused by, or are worsened by, stress and anxiety. My hope for you is to relax if at all possible.

I found that cold compress help a lot with the Inflammation. Systane ultra helped me during the day and Refresh PM ointment helped at night.

Good luck at your appointment. If you haven't already, you may want to refer to Rebecca's suggestions on how to prepare for a doctor appointment.

**Pinklady** · 18-Jun-2012, 03:21

Hi Unicorn,

I have only recently joined this site and have found a lot of useful information here. Wish I had found this earlier !! 'Little Mermaid' is a wealth of knowledge for advice in the UK and has really helped me. Her daughter also suffers from Ocular Rosacea so may be able to give you some advice.

I also get very stressed and worried but am trying to combat this by keeping as thorough medical notes as I can. Any new drops we try, what worked and when, how eyes looked and felt with each day/medication. I am also printing articles off here to keep in a file so I can be as prepared as possible for appointments.

Good luck with your appointment, hope you get some help.

**littlemermaid** · 18-Jun-2012, 04:29

Hi Unicorn,

Glad you're here with us but not that you're suffering with your eyes. We are finding LM's eyes are increasingly sensitive, even to tear substitute eyedrops, and she can't eg use Viscotears - but she is doing fine on normal saline 0.9% Minims from the GP or pharmacy, and Hylotears or Hyloforte for something more clinging http://www.dry-eyes.co.uk/. Can you eliminate all the chemicals, as PAllen says? With ocular rosacea, LM's eyes are sooo much better now we've really thought about what might be making the face so sensitive - detergents, fragrance etc.

They say doxycycline takes a while to work as an anti-inflammatory but gentle warm compress with no chemicals should keep the meibomian glands moving.

Re long use of contact lenses, I was similar (24y) and when I stopped, I realised my eye surface was too dependent on them and the upper MGs weren't working. Particularly under the upper eyelid, the surface was vascularised and inflamed and dry (changed). 1.5y later, the MGs are restored, and the eyes are not dry there any more.

I think sodium cromoglicate was indeed a daft idea and I'm liking the sound of your GP. Maybe a thyroid test? Can you lose the lenses until everything's sorted out?

We're all in the same boat here, especially with the doctor-shopping. It would be kind to keep us updated how you get on with DC and Gartnavel and how you're feeling. Gartnavel sounds great once you're in there with a cornea consultant clinic. Even if it's seems busy, they look after you urgently if you get eg inflammation like our local does (don't think you'll need this but good to know it's there).

Thank goodness for the internet, Pinklady.

**unicorn** · 18-Jun-2012, 04:43

Thank you very much for replying, PAllen and Pinklady.

PAllen, yes I have read on here about SLK. I have wondered about the possibility of this so I guess I should ask about it at my future appointments. Your description of how your eyes feel is very similar to my experience. Do your eyes feel dry in your lenses at all? If I was totally comfortable in my lenses I'd be happy to wear them but I don't feel they are always that good and they do get dry/red by the end of the day. My eyes are red high up under my eyelids but also on the 'visible' part (if that makes any sense!) and also are very red inside the lower eyelids- I don't know if this points to something other than SLK, or whether I might just have several things going on at once!

Pinlklady, I've seen quite a few posts by member LittleMermaid which are very informative and useful.

Your idea of keeping records of what's helped, what's not, symptoms etc is a very good one and one which I should try. I am going to try and make some notes before my appointment tomorrow so that I can make sure I cover all the points I want to without getting too stressed and forgetting something!

I realised I've not put in my post above exactly what I've tried, and I should do this not only so that someone may be able to offer some suggestions, but also in a way for my own record.

So: for about six weeks I've been doing twice daily warm compresses and lid scrubs. For the compresses I use two cotton pads dipped in boiled-then-slightly-cooled water, for about 5 minutes. Then I massage my eyelids (although to be honest I've really no idea if I'm doing this right - I don't seem to get any oil out!). I have been using Blephasol solution for cleaning, although sometimes I just use the plain boiled water as the Blephasol sometimes gets in my eyes and stings.

I have tried Hypromellose drops (stopped these when I read here about BAK!), Systane drops (sting like crazy). Neither of these drops seemed to help much. The preservative-free Viscotears feel quite soothing but if my eyes are at their worst it doesn't last long, and I'm only supposed to use them 4 times a day. I don't use any drops when wearing my contacts lenses (I've tried Blink Contacts but these really don't do much at all if my lenses feel itchy).

My eyes are very, very dry in the mornings when I wake up - but not stinging like during the day, just totally stuck dry. My mouth is also very dry when I wake up. Both of these things usually resolve quite quickly once I'm up and have had a wash. I don't experience a dry mouth during the day.

Last night and this morning I tried using cool compresses - I started off with the warm cotton pads, but kept them on my eyes long enough for them to become cold. It felt quite refreshing! So perhaps I will switch to this for a while. I also am not feeling great after massaging my eyelids and I don't seem to be getting any 'stuck' oil out, so perhaps that's something to discuss at my appointment tomorrow.

Many thanks for your suggestions. I am working on lowering my anxiety and stress - my husband is being very supportive. I've suffered from depression for many many years and have been on and off (currently off!) anti-depressants.

**unicorn** · 18-Jun-2012, 04:54

Hello Littlemermaid, we must have been typing at the same time!

I appreciate your advice more than I can say and it feels so good to have some support. I haven't heard of Minims or Hylotears so I will look into these. As for chemicals on my face, that's quite hard to say. I use pretty gentle products (have done for years due to having Rosacea) but of course there are still preservatives and chemicals involved. I have very dry skin so it would be hard eliminate moisturiser, also I regularly wear foundation due to my red skin (!). Do you have any specific suggestions for suitable products to use for cleansing and moisturising?

It was very interesting to hear that 1.5 years after stopping wearing contact lenses your eyes are doing much better. I would like to cut down on wearing my lenses, if not stop altogether, but my main problem is that my eyes feel so much worse when not wearing them. Is this something you experienced and if so how did you get through it?! I also find it hard wearing glasses, as at -6.5/-6.25, I'm so used to having perfect peripheral vision in my contacts that the distortion/loss of peripheral vision I get in my glasses is rather difficult to cope with.

I will of course post again once I've had my appointment with David Crystal tomorrow and later on in July once I've been to Gartnavel.

**littlemermaid** · 18-Jun-2012, 05:14

Hi unicorn, I think we were! I am supposed to be doing piles of ironing and washing the curtains - it's the perfect drying day here!

I don't know what I'm doing with rosacea - no one really does yet although there is plenty work going on trying to identify the inflammation pathways and looking at the immunology - we've seen so many derms, including profs - but the best info has been http://rosacea-support.org/community/ and similar. Everyone seems to be different on what potion works but gentlest possible, pH neutral, but do moisturise well to help the skin barrier do its protective thing (dermal matrix, whatever that may be, so the inflammatory response to whatever trigger's upsetting it is soothed). But perfume-free, seems to be the conclusion. Beeswax/honey base works for us as a moisturiser (Dr Organic Manuka Honey Rescue Cream, currently, or Nature's Gift honey moisturisers from Suffolk). With the 'natural' moisturisers, some companies put extra perfume oils in that upset LM's skin, so we kept it as simple as possible (actually Simple has been a good range, recommended by the derm prof as pH neutral). Certainly, people are discovering sensitivities that derms don't think of - see MaryVA61's posts. And that some everyday skin potions have set off the dry eye.

A very kind paediatric general doc was telling me his experience with his son's severe eczema was that it turned out to be more of a systemic conditon, in his case lymphatic, and we were agreeing that we wished derms would think of superficial skin problems this way and do more testing for metabolic or autoimmune disorders. I am finding that they want to use increasingly strong antibacterials on poor LM whereas our real improvement is coming from using less inflammatory and more gentle emollients that she tolerates well, and the paed ophth are agreeing with this. Definitely, mention your mouth dryness and list the anti-depressant drugs, to see if they have an idea what might be making your eyes dry too.

My eyes got very inflamed when I stopped wearing contacts, but I just knew I had to. I really like the various glasses I've got and I feel quite business-like, esp the prescription sunglasses which I love - once I'd got over the shock of paying for thin varifocal lenses. But there are plenty of deals around eg 2 for 1.

Is there any chance the depression could be metabolic?

**unicorn** · 18-Jun-2012, 06:25

Haha - I too have a pile of ironing but I've got my back to it and will probably go out for a walk instead since it's finally stopped raining!

Thank you for your input on skincare. I feel I have my facial rosacea fairly well under control, in terms of trigger avoidance and gentle skin care. Interestingly the moisturiser I currently use also contains beeswax and I find it very comfortable (it is Embryolisse Lait-Creme Contentre). I have found www.makeupalley.com to be of enormous use in terms of skin problems - they have a fantastic forum there for skin care advice. As for ocular rosacea, though, this is really a new one on me and I'm finding it quite scary.

As for stopping wearing my contacts, I am probably going to need more advice before making that decision - for example if I do have SLK, it may be that I have to continue wearing them. If I have meibomian gland problems I can only hope that I can get through the inflamation period and that my eyes recovered, as yours did - did it really take over a year though? (gasp - sounds painful!). I know what you mean about getting over the cost of glasses though - these 2 for 1 deals suddenly don't look so great when you add on the cost of 1.67 index lenses which is what I need. Optical Express quoted me �199 for the lenses in just one pair - on top of the cost of the frames - OW!

Whether my depression is metabolic or not I really have no idea. Funnily enough despite it plaguing most of my adult life it is the one thing that I don't spend much time 'researching'. I think it is part of depression to avoid facing it - at least it seems that way for me. I have had pretty poor experiences with doctors over the years when dealing with it, too. At the moment I'm not taking any anti-depressants, so I assume that at least isn't contributing to my dry eye, unless they have a longer term effect after stopping use.

**littlemermaid** · 18-Jun-2012, 06:50

Thank you, unicorn - good website, really useful experiences, esp for teens, which I'm not finding on rosacea forums. We also had vit D tested but the GP didn't know how specific that was to D3, which some say can be an issue with rosacea.

After contacts, I had a painful weekend but that was it. Hopefully someone will post with more experience like yours.

Very interested to see what you think of DC and what his thoughts are.

**unicorn** · 20-Jun-2012, 01:49

Here's how I got on with David Crystal yesterday: he's very knowledgeable and clearly passionate about dry eye treatment, although I found that I was not able to discuss everything I wanted to, as there was some time pressure to the appointment and he prefers to talk rather than listen! In the end I had to insist that I write down the the main points we'd discussed to be clear about where I go from here.

So: his set-up is good, he takes photos throughout the examination which he shows you on a large screen. These are very interesting (if slightly ewww!). It helps you understand what's going on in your eye. He also took time to clearly explain exactly how tear film works (or should work). He doesn't do Schirmers tests as he thinks they're useless and prefers to just examine you instead - I think this is probably a good thing.

In my case, he found that I don't have aqueous deficiency but have 'evaporative dry eye' caused in part by posterior blepharitis (MGD) (showed me the small whitish caps on my oil glands and telangiectasia). It is also being caused by goblet cell dysfunction which is because I have got some kind of allergic reaction going on - I could clearly see the papillae under the flourescein stain. This concurs with what was found at my last examination. DC said that my dry eye is 50/50 MGD/Goblet cell dysfunction. I had a TBUT of around 6 secs yesterday. He also mentioned that I have an incomplete blink and large eyes which contribute to dry eye simply by the fact the tears have a larger surface area to cover!

So I mentioned Ocular Rosacea, and he said (rather bizarrely, I thought) that since I don't have 'obvious signs' of rosacea on my forehead then he didn't think it was this. Not quite sure of his reasoning here and personally I disagree that you have to have severe facial rosacea in order to have ocular signs, and I really don't see why having it on your forehead should mean you do or don't have it in your eyes... regardless, he was very pleased that my GP had put me on Doxycycline, as he says it's the best treatment for MGD regardless of its cause.

The allergic reaction causing the goblet cell dysfunction - he thinks it's due to contact lens solutions! This is directly contradictory to what I was told by my last optician. However, I think I have to be prepared to go along with it and at least rule it in or out by discontinuing lens wear for at least 12 weeks. DC recommended I switch to daily disposable lenses, as they will actually 'protect' my eye from the irritation caused by the papillae (I guess this is partly why I've been more comfortable in my lenses recently?).

The problem with treatment now is that the two issues I have going on need different and contradictory treatment! The warm compresses and massage recommended for MGD will be very aggravating to the allergic inflammation, and the cold compresses needed to calm the inflammation will not help the MGD. What he's suggested I do is as follows: continue with gentle massage of the lower lids (he showed me how to do this) and then clean with Blephasol. Continue with the Doxy for the 16 weeks my GP has prescribed. He wants me to take TheraTears nutrition tablets for 8 weeks and for this period stop taking Omega 3/multivitamins (which I'd been taking). I've also to saturate the eyes with TheraTears eyedrops to help with the goblet cell dysfunction. He said I should stop using any other eyedrops as they will not be helping - probably only aggravating matters, esp if there are any preservatives present. He actually said he could give me eyedrops which would make my eyes feel 'wonderful' but they would actually only be serving to mask the problem and that I need to focus on actually 'fixing' the problem.

I guess the test will be in 12 weeks without using contact lens solution (I'm still rather undecided about whether to use daily disposable lenses) to see if this was indeed the cause of the allergy. If so, great, if not - could be a challenge to find the source. By the way - regarding contact lenses, he was absolutely adamant (I pressed him on this point!) that they don't cause MGD. He says it's genetic/hereditary or whatever - not caused by an 'external' thing. I guess this view might be against what some of you here have been told, so I don't really know what to think about this. By the way, he said that in my case is that my corneal epithelial cells are perfectly healthy and that I don't have any loss of sensitivity, which he described as very good news in a long-term contact lens wearer. So maybe these are the things that could potentially be damaged by contacts over the long term, rather than the meibomian glands?

Sorry this was rather long once again - I would be very interested to hear if anyone has any thoughts/feedback on any of this.

**littlemermaid** · 20-Jun-2012, 02:34

Unicorn, Thank you so much. The detail is pure gold - respect to you, ma'am, for handling what's happening to your poor eyes with great style.

Liking David Crystal, our kind of guy.

Reminding myself that most high street chain opticians are there to sell contact lenses and eyedrops, even cheap laser surgery, and suffer internal struggles on these matters, even while we are sitting there watching. Also the College of Optometrists' qualificaton does not cover disease very well yet. They need an MSc or hospital experience or very recent training to even have a stab at this stuff, I feel, although yours was talking some sense on the allergy reactions, wasn't he.

I disagree that you have to have severe facial rosacea in order to have ocular signs

DC should've known these days that 'ocular rosacea' is considered by Moorfields to be a hypersensitivity disorder (some call it type IV allergic response, whatever that is - reaction can even be days later whereas other allergic responses are quick). No skin signs needed. Sensitivities in 'autoimmune' disorders can be inadequately described as ocular 'rosacea', whatever that is.

Minimum chemicals then, esp with papillae. Is anything, like Theratears, stinging when it hits the eye surface? We try different drops and ideally work on this with an interested skilled surface ophth, if possible, (yes, I know, hilarious) on whether they make things better/worse for the individual and how much to use and when. Our current maestro reminds us that he sees seasonal allergies affecting many of his eye surface patients primarily there for other reasons.

So maybe these are the things that could potentially be damaged by contacts over the long term, rather than the meibomian glands?

Yep, that seems to be what happened to me - contact overwear changed the surface, desensitised, there was certainly hypoxia. All this restored, except some pannus. However, a quick PubMed search reveals how the MGs can become capped by keratin with long term contact lens wear (I'll try to find it, think it's also in US Optometrist contact lens website literature). With me, this fixed itself too, maybe helped by occasional fishoil supplement.

On depression, as an antidote to cognitive behavioural therapy, what do you think of 'The Antidote' by Oliver Burkeman? http://www.guardian.co.uk/books/vide...ideo-animation

**unicorn** · 20-Jun-2012, 03:43

Thank you, LittleMermaid - handling it with style... well I'm not sure but it's kind of you to say so!

I've been reading the archive section on this forum regarding ocular allergies and finding it all very overwhelming and disheartening. Sometimes too much information isn't the best thing, especially for those of an anxious disposition. I need to keep reminding myself that every individual is different and all I can do is go forward with my current advice/information and take it from there - I guess we all just want to be 'fixed' in a short a time as possible! I do have my Opthamology appt at Gartnavel on July 20th so I suppose I can see then if I've made any progress.

I agree with your definition of rosacea/ocular rosacea and I do think DC needs to educate himself a bit further regarding this. I have read somewhere the papillae can in fact be a sign of ocular rosacea but I'm thinking that this is probably because of the hypersensitivity of rosacea - reacting more easily to chemicals etc, whether a true 'allergy' or not.

Haven't tried TheraTears yet as I need to order it online, along with the Nutrition tablets. Will do that today. The only drop I've used that stung (badly!) was Systane. Viscotears was fine - although didn't really help much.

Very interested to be learning more about the possible long-term damage caused by contacts, as well - thank you. I think because I've always made a big effort not to 'overwear' mine is why I don't have much in the way of surface damage or desensitisation, along with wearing silicone hydrogel lenses which will not cause hypoxia. So perhaps the occasional wear of daily disposables is the way to go for me.

I have actually made an appointment with my doctors for this afternoon - the GP I saw last time is on holiday, so I'm seeing another doctor. (I'm new to the area, so the visit I'd made to the GP who put me on Doxy was the first time I'd seen him). I want to ask about allergy testing and also the possibility of a thyroid function test.

Thanks for the link to the Oliver Burkeman article - I always read his column in the weekend Guardian. I'd read the article last weekend about this book - very interesting, and definitely something I can relate to. I've had CBT in the past - about 8 sessions - it seemed to make me worse, if anything. One really positive thing that may be emerging from my eye problems is a desire to actually tackle my anxiety/depression in a more determined way.

**unicorn** · 20-Jun-2012, 07:07

Just back from the GP. Regarding allergy testing, the waiting list on the NHS for the allergy clinic is 2.5 years... so at the moment I don't think this the way to go. She did however suggest that the Opthalmology dept may be able access the allergy clinics more quickly if this is what they recommend.

Am having blood tests for thyroid function, basic allergies (ie pollen, pets, grass, dust mites etc), as well as a few other things, including Coeliac disease - not eye related, but glad someone is finally taking my other symptoms (fatigue, stomach problems etc) seriously.

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