Pretty down... Can anyone help?

[Guest]

Hi,

I am very very low ATM and praying someone on here might be able to offer some words of encouragement or share a similar experience so I don't feel so alone.

After seeing a GP six times over what I thought was reoccurring conjunctivitis they finally referred me to an eye specialist. At this point my eyes were very dry and inflamed, to the point I struggled emotionally as well as physically. The eye specialist wasn't helpful, I was given more steroids and on asking her is it blepharitis she said no, which a month later I found out wasn't true.

I asked to switch to an eye consultant and found out I have evaporative dry eye, blepharitis and Mgd (which is basically same thing right?) so started all the treatments like unperserved artificial tears, lid scrubs, warm compresses etc.

I am four months down the line and still no better. My eyes have many pink lines all reaching out to the pupil. It looks unsightly, I have left my job due to depression.
Has anyone out there successfully got their eyes back to the way they were? Everything I try doesn't work. Also I pour artifical tears in every hour in desperation, is too many drops counterproductive? I need some hope!

[lizlou29]

Hi ClaireW

Sorry you are feeling so down. I've had depression so I hope you are dealing with that whether through therapy or anti-depressants (or both). I have CBT for pain management due to my eye condition which is basically the same as yours and if helps.

One question - have you tried Doxycycline? It helps a lot of people. Azyter (topical azithromycin) and manual expression performed by my ophthalmologist has helped me somewhat so that may be something to consider.

[Guest]

Hi Claire,

Sorry to hear you're feeling so down - lots of us have been there.

If you read back from my posts in 2009, you'll see how bad off I was back then.

Fastforward to today, and things are much better for me - I can do almost everything I'd like to do now. I say this to give you hope (and because it's true!!)

So, if I were you, I'd try to remind yourself often that this is a blip in your life - this may go on for months, maybe longer - BUT, when you consider that you likely have DECADES of life ahead of you, this is a blip on the radar.

So keep slogging through this difficult time, do not give up trying to figure out what is causing this. Eventually, you will figure it out and things will improve - the hard part is getting through uncertain times that you are in now, when you still don't know why this is happening. But it can be done - and it'll be worth it in the end!

[littlemermaid]

My eyes have many pink lines all reaching out to the pupil

Clare, are the new veins (neovascularisation) in the white of the eye (sclera) or starting to grow over the clear tissue (cornea)? It might be useful to get eye surface photographs from the high street opticians eg Specsavers and some help from them on what is happening and which Cornea specialists can look after you.

If the basic treatments haven't worked, and you've lost your job, then maybe you need to start the next stage treatments. http://www.nhs.uk/conditions/dry-eye...roduction.aspx http://www.nhs.uk/conditions/blephar...roduction.aspx If the red lines are starting over the cornea, a high street Optometrist can refer you. The big regional hospital Eye Clinics are the best and you need regular follow-up to feel safer.

Lizlou's posts show us how cornea specialists can treat very well within the NHS from the British Formulary if they are up to date professionally.

[No tears in ATL]

Having battled this for some time, maybe give doxycycline a try. Also, drops instilled too frequently can do more harm than good. They certainly irritated me. Try tapering the drops down to 5-6 times per day, and in the meantime, try ice compresses to cool the inflammation and warm compresses to get the oil flowing.

[Guest]

Hi everyone, thank you so much for all your support. Very comforting to know that so many people care and share a similar experience. ATM I have no one to relate to, which makes it more of a struggle.

I have tried doxy now for about eight weeks that has helped clear it up a bit. Little mermaid, thank you for you reply, fortunately the veins aren't growing over the pupil but there are many little thread like veins all running from the corner of my eye to the pupil, they grow redder when they get irritated and I have formed a pinguela in either eye that some run into. I have managed to calm the veins down but there are so many of them it's depressing.

Problem is I have huge light blue eyes, they used to be my best feature and now they are my biggest flaw : ( the psychological effects of this is overwhelming, I have social anxiety and some days can't get out of bed. Looking in the mirror is my biggest fear!

No tears - yes I thought too many artificial tears would be counterproductive! I have formed a bit if an obsession and been pouring then in (going through one bottle every three days that cannot be good) it was only did I stumbled on some info on the web that I saw too many tears can wash away your natural tear film that I thought ok, this has to stop. I have brought myself a lid spray to avoid tampering too much with the eye and going to use as little drops as possible (I use hylo forte which are the best ones for me I found).

I pray this is just a blip. I am a shadow of my former self.

[littlemermaid]

It is peak pollen allergy season here and we are looking round universities - driving at crack of dawn, outside in 27+ degree heat, airconditioned lecture theatres all day, driving 3+ hours home in a/c at night. My eyes are killing and I don't even have dry eye but junior does, OMG.

Everyone there - mums, young folks - is wearing close-fitting wraparound sunglasses and using various eyedrops and it's more noticeable who actually isn't, blinking away and rubbing their eyes.

Sunglasses make a huge difference for eye protection and keeping the moisture in - have you got good ones? or moisture-chambers for the house? The fashionable people seem to be wearing eg Dolce & Gabbana or sports wraparounds - I normally go for so-called 'designer' copies. There's plenty info on eye protection on http://dryeyezone.com/ and moisture chambers might reduce the need for frequent drops and help the eye surface heal.

[Guest]

Aw that sounds horrible! Lucky for me I don't have allergies but have invested in some new sunglasses so if I do go out I feel protected.

Little mermaid, can eye veins due to blepharitis heal over time? The eye specialist wasn't very helpful and said that everyone has veins but what I really wanted to know is if these little veins that have appeared have the potential to go?

[littlemermaid]

Hope so. I think so. I'm not medical but people here talk about their eyes going back to white when there's healing. If you wanted to get technical, you would look at vascular endothelial growth factors. The question short-term is whether what we have to use to suppress inflammation is worth long-term side effects, as you were saying about steroid eyedrops. Moorfields uses topical cyclosporine as a 'steroid sparing agent' - they gave us Optimmune - but we wanted a formulated version without preservatives in an aqueous or oil base and I haven't been able to get it from our current docs so we have been stuck on these awful tapered steroid regimes for flareups. No choice, because the veins were growing into the cornea.

I think if it's blepharitis causing probs with the tear film, if we can keep the eye surface moist then the veins don't need to go crazy trying to maintain it or see off invaders. That might mean goggles for a bit and some people move on to scleral lenses.

If it's systemic inflammation like my d's 'rosacea', whatever that is, my best doc is thinking how inflammation is carried through the veins, shows in the skin, and we are seeing some wiggly new veins on the eye surface (neovascularisation) when we are not maintaining the eyelid glands + tear film well, and interestingly, possibly on the retina. When we do manage it well, the eye surface veins empty and become 'ghost vessels' although he says they are 'ready to go again any time'. TG yours are staying in the sclera though. That means your cornea is maintaining itself well despite the stress of insuffcient tear film.

Obviously people with allergy or infection stop red-eye when their eyes are more comfortable.

How are you getting on with clearing the meibomian glands? what are the docs saying? did you use a computer or have a/c all day at work? has this triggered dry eye?

Have you tried covering or taping your eyes at night? And dropping before you open them in the morning?

Cornea docs are big on blinking exercises these days.

Diet and hydration makes a big difference, in that if we slip on it, she suffers. It has to be low-carb, no sugar, no wheat, very careful with fats, otherwise the MGD comes back and she gets chalazia. She won't try honey to wash even though it's in the cupboard ready - like you, she has to use regular eyelid scrubs and compresses. A mild but effective antibacterial facewash is a help.

We do have a big problem with bathroom, skin, makeup and hair products, and have to use hypersensitive, minimum chemicals. Anyone with sore eyes and insufficient tear film would, I guess.

Does cold compress help? Some people even like cucumber or green tea bags. My d uses eyedrops from the fridge.

[Guest]

I am a shadow of my former self.

Hang in there Clair - honestly.

If it's any consolation, here is something that helped me on the appearance side of things.

It'll sound stupid, but it is surprisingly effective hehe

In 2009 when my eyes went to hell, and yes, they were red all the time, I had to not only stop wearing makeup ("horrifying" for me lol since I never, ever left my house without a full face of makeup: concealer, foundation, blush, shadow, liner, mascara, lip liner, lipstick) and, to make matters worse, I had to start wearing moisture chambers (Wiley X is my brand of choice) which do not look like normal sunglasses, although they aren't tooo bad.

So, my solution to feeling self conscious about my not-so-spiffy "new look" was to not look in the mirror. Seriously. It was that simple.

Every time I looked in the mirror, I was reminded of how I now looked and that made me feel self-conscious, and it was therefore difficult not to retreat inwards, trapped by shyness and embarassment.

But by making a point of NOT looking in the mirror, especially when out in public, I was able to force myself to forget that I now looked different, pretend I was the same old me, and therefore act normally.

Shyness and embarassment gone. Just like that.

You get better with it over time, and eventually, you just stop caring and worrying about how you look. But after a lifetime of trying so hard to appear a certain way, it takes time for those old habits to die. Just don't give up - when you eventually succeed at not caring how you look compared to yourself before the eye problems, it's actually quite liberating in a way.

[cathy8889]

Hi Claire,

I am so sorry that your eyes are causing you so much physical and emoitional pain. Reading through your post made me cry as I have just gone/going through something very similar, almost exactly the same. I had to leave my job 2 months ago due to the discomfort and psychological effect of dry eye and the inflammation and redness. I felt highly anxious about leaving the house and getting up in the morning was so difficult. Looking in the mirror was pretty difficult too, I started wearing my sunglasses in the house I felt so awful. I am still trying to avoid looking close up at my eyes in the mirror and as SAAG said avoid looking in mirrors. I felt like I would never be the old me again, I prey and am still preying that I can get back to that person.

I hope my post can give you hope, I have never been so low in all my life as I was 3 months ago and when I think back to it, the feeling I had then comes back to me, its horrible.

I have evaporative dry eye (still not sure its caused by lack of tears or mgd) and 2 pinguecula in each eye. I have had the pinguecula on the nasal side for quite a long time, the ones of my temporal side are a new addition. I'm not sure where youre from Claire but I will tell you what I have done to reduce the redness in my eyes, I will send you a picture of my eyes three months ago and today if you would like to see how much they have improved.

I was taking antidepressants which I realised were exscaberating my dry eye, the psychological effect from dryness and redness that they were having on me was causing me to be more depressed so I stopped taking them and my dryness improved considerably in a week.

I take Omega Eye omega three by Scope - http://www.scopeomegahealth.co.uk/omega-eye,ec/ (triglyceride form) (a member of this forum kindly recommended them to me as I was buying fortifeye omega three from america and they were costing a fortune), i take omega 7 seabuckthorn oil capsule -http://www.mossopnaturalremedies.com/shop/product/detail.aspx?rvdsfpid=Omega-7-%28Pharma-Nord%29-110&utm_source=google&utm_medium=prdsearch&utm_cam paign=prdsearch&gclid=CMHq44bd6L4CFSbKtAodSAQAjQ&r vdsfpvid=150-capsules-505 (cheapest I have found them for). I also take fortifeye focus. I think I may have had a b2 deficiency so I started taking a b2 supplement.

I have changed my diet quite a lot, Ive stopped drinking caffeine and any fizzy drinks, I drink a lot of water each day too. I just googled anti inflammatory foods and foods that caused inflammation and modified my diet. I think this is all helping.

As you said too I forced myself to stop crying because I knew that it was making my eyes worse.

I did a lot of reading and found Michael Lange's blog good to get my head round everything http://dryeyetreatmentblog.com/ and http://dryeyenutrition.net/
I also watched a few of John Hovanesians you tube videos.

I put drops in 2 times an hour depending on where I am and what the weather is like, Im going through so many eye drops with this damn hot weather we are having the UK at moment, cant wait for it to absolutely pour down! I use Vismed Multi 0.18 preservative free, the vismed multi gel irritates my eyes. I was using systane for years not knowing that some contain preservatives, they were making my eyes worse. I was using thera tears viles from america before I discovered Vismed (once again thanks to kind forum member for telling me about them, they are a god send and I can get them on prescription).

I found this forum so helpful and everyone on here is so nice, I can relate to everything people say, reading what SAAG wrote in last post about not caring how you look compared to yourself before the eye problems is so important, I am still going through this and I still get terribly sad. It can feel like youre the only one but I promise you you are not and not everyone has perfect eyes, I now notice everyone eyes now and everyone has some veins in them.

It is quite overwhelming at first and I didnt think I had the energy to get through it, but I tried to keep hope and am still preying for things to get better, I still have my very bad days believe me. My eyes are not perfect my all means but they are like 70% better than they were 3 months ago.

I have seen three ophalmologists over the past 2 years, the first in September 2012 told me that my eyes were not dry as my tear break up time was over 10 seconds but because I have pinguecula I should use drops every 2 hours (unfortunately he forgot to tell me this during my consultation and my doctor never relayed this to me after appointment - i only found out last week when I requested a copy of the letter he sent to my gp, pretty upset about this as I think I coould have prevented what I have just been through had I known). The second was not very helpful, I saw him in feb 2014, he prescribed me optive and sent me on my way, didnt tell me I had dry eye even though my pinguecula were ridiculously inflamed. The third in April 2014 who I paid to see told me I had dry eye, tear break up time of 3(r) and 4(L), he presribed me sno tears (cheapest option for nhs) which contain benozenium chloride which is damaging to eye surface if used more that 4 times a day . I have found that the only person who can help me is myself, I have done a lot of research and when I hopefully get an appointment with specialist at birmingham midland eye centre I am going to ask about restasis (cycosplorine), doxycycline and punctual plugs. I know that if I could just get the dryness under control my eyes would be a lot less red.

I also realised that lots of environmental factors make my eyes dry and red, cigarette smoke, air freshener plug ins, dust (took up my carpet and painted my floor boards), the list goes on.

I am sorry this message is so long, I hope its not too overwhelming, its just that I have and am still going through what you are going through and want to give you all advice I can. A lot of people on here know a lot more than me, I am still learning a lot.

I am concerned that I am using too man drops, I too am using a bottle every three days but they realy bring the redness down so I dont know what to do.

Best wishes

Cath

[cathy8889]

Hi Little Mermaid, I was really intrigued by this post as I have just started researching eye veins and was wondering if they were different, I think the squiggly veins I have that are leading to my pupil are neovascularisation and I dont think they will ever go, have you ever been told that they might?Other veins leading to my pinguecula I hope are growing over the clear tissue but I am not sure. I am going to get in touch with specsavers and ask for their help, thank you

Clare, are the new veins (neovascularisation) in the white of the eye (sclera) or starting to grow over the clear tissue (cornea)? It might be useful to get eye surface photographs from the high street opticians eg Specsavers and some help from them on what is happening and which Cornea specialists can look after you.

If the basic treatments haven't worked, and you've lost your job, then maybe you need to start the next stage treatments. http://www.nhs.uk/conditions/dry-eye...roduction.aspx http://www.nhs.uk/conditions/blephar...roduction.aspx If the red lines are starting over the cornea, a high street Optometrist can refer you. The big regional hospital Eye Clinics are the best and you need regular follow-up to feel safer.

Lizlou's posts show us how cornea specialists can treat very well within the NHS from the British Formulary if they are up to date professionally.

[littlemermaid]

squiggly veins I have that are leading to my pupil are neovascularisation and I dont think they will ever go, have you ever been told that they might?

I really don't know, Cathy, because TBH we are just so grateful she can still see. By the time I found a paediatric cornea specialist, there was vascularisation half way from the limbus to the pupil, and TG he arrested that with his tapering regime - oral antibiotic, topical antibacterial, FML, Celluvisc - and they were ghost vessels after 2m, looking good by 4wk.

Now local ophth had been blitzing with steroids + topical antibac for 1y and got nowhere because there was no understanding of how to control the MGD problem or use lubricants through the day and she was serially discharged then back to A&E with red-eye and photophobia many times.

This is why we need cornea specialists with experience and skill and maybe one of them could fix that and the pinguecula, especially the inflammation and angiogenesis. After surgery, eg, skilled docs might use anti-VEGF topicals and they might also inhibit nerve regrowth in a good way. Certainly these dodgy 'get the red out' vasoconstrictor eyedrops have caused people here terrible problems in long-term cornea damage. PubMed and Medscape 'pinguecula' shows some experimental options but maybe it's safer to be conservative and careful with meds, I think, if you can maintain things, unless they are affecting your vision, which is what they would do at the children's hospital. I am very afraid of these gung-ho surgeons in the private sector.

It was easier when we got the lower punctal plugs. The eye surface just didn't seem to get as bad.

Have you been to Manchester to the eye specialists? (search here eg 'Manchester', there were some recommendations, and good experience from Nadz)

[Guest]

catchy I am so sorry to hear what you have/are going through. I wouldn't wish this on anyone. It was crazy how it happened, my eyes have always been fine and really white, next day bam and they were inflamed. I was prescribed fusidic drops three times (first they worked beautifully but it kept coming back) then I was told I had allergies, next visit I was told I needed glasses (which I didn't) by the time they referred me - which I begged them to do- it was four agonising months of painful red eyes. The eye specialist gave me more steroid drops, told me it wasn't blepharitis as I asked, month later I found out it was on a return visit because the nurse read my file out loud. I felt so let down.

I have worked hard all my life and went to god knows how many interviews before I got a dream job. My eyes were so bad that by this point I wouldn't go out, couldn't look at people, I couldn't look at myself and wore nothing but old track suits. Even brushing my hair felt pointless. I managed one day at the new job through desperate blinking and trying not to let people see the state of my eyes. You can't help but look at others and think how come? Why are your eyes perfect? Why can't mine heal???

I lasted one day and left. My dream job gone. I was beyond broken. My appearance and then my career... I got counselling but one doctor said it's not cancer (really???) and if you had dry eyes you wouldn't be able to cry. I walked out on him.

I have a feeling my antidepressants might not be helping, it is making my mouth very dry.

On the positive side my family are very supportive, my little sister has done post it notes next to all the mirrors saying things like 'it will get better!' My gp is amazing, she said they will get there but it's a long road. She promises me I will get them restored. I see her most weeks and hang onto that hope.

Also since I have been noticing other peoples eyes I have noticed some people to have a lot of veins naturally. I never noticed that before so maybe it isn't as obvious to others.

I share your pain cathy. Get a gp that really cares, or an eye specialist that will be thorough with you, I demanded I saw a consultant after the last one.

[cathy8889]

Hi little mermaid, thanks ever so much, you have a lot of knowledge and I am grateful for you sharing it with me. It sounds like you have had to battle so hard, I hope you're getting there now. I am still trying to get my mind around all the new vocab and terms. How did you learn so much? I bet you know more than most ophalmologists now! I read want to educate must more. I am waiting to find out if I can get an appointment on the nhs with a consultant called saaeha rauz, another dry eye zone member with pings has seen her and she was very caring, I just want to find someone who will work with me to make my eyes better. I was also debating whether or not to book a private appointment with teifi James, however with not working at the moment I can't really afford to. I will search Manchester on here though thanks.

I was just wondering how you went about finding a good corneal specialist if you don't mind me asking.

Thanks again

I really don't know, Cathy, because TBH we are just so grateful she can still see. By the time I found a paediatric cornea specialist, there was vascularisation half way from the limbus to the pupil, and TG he arrested that with his tapering regime - oral antibiotic, topical antibacterial, FML, Celluvisc - and they were ghost vessels after 2m, looking good by 4wk.

Now local ophth had been blitzing with steroids + topical antibac for 1y and got nowhere because there was no understanding of how to control the MGD problem or use lubricants through the day and she was serially discharged then back to A&E with red-eye and photophobia many times.

This is why we need cornea specialists with experience and skill and maybe one of them could fix that and the pinguecula, especially the inflammation and angiogenesis. After surgery, eg, skilled docs might use anti-VEGF topicals and they might also inhibit nerve regrowth in a good way. Certainly these dodgy 'get the red out' vasoconstrictor eyedrops have caused people here terrible problems in long-term cornea damage. PubMed and Medscape 'pinguecula' shows some experimental options but maybe it's safer to be conservative and careful with meds, I think, if you can maintain things, unless they are affecting your vision, which is what they would do at the children's hospital. I am very afraid of these gung-ho surgeons in the private sector.

It was easier when we got the lower punctal plugs. The eye surface just didn't seem to get as bad.

Have you been to Manchester to the eye specialists? (search here eg 'Manchester', there were some recommendations, and good experience from Nadz)