I had this condition un-diagnosed for many years its frequency has increased from once a year to twice a month or so. Eye drops such as chloramphenicol and chloromycetin make it worse. Chloramphencol ointment Chloromycetin ointment and Simple eye ointment seem to be the only treatment that works. I have to sleep on my back to avoid my eye burying into the pillow if I sleep on my side. To ensure I wake up and have no problem I have to apply a blob of chloromycetin and a line of simple eye ointment into both eyes at bedtime.
I don't really know where to go from here. Any successes out there?
Hi Dave
I really feel for you, done all the drops creams contact bandages Just had a procedure called alcohol delamination and I can not believe the difference
Hallo dave,wonder how you are getting on with the corneal erosions? I had this very painful condition for some time before being diagnosed with Thygersons keratitis. This is inherited from my Mothers side of the family although no one else has it apart from my aunt. Used to get ulcers on the cornea quite regularly,and found that the chloramphenicol ointment was much kinder to the corneas that the drops. My regime now is Simple eye ointment every night,but 'squirted' under the top eyelid rather than in the bottom eyelid. This seems to give better results. Keep any sort of soap or shower gel etc away from your eyes. I use 1% Carmellose sodium drops during the day if necessary. The individual ampoules are best for sterility and being able to take a few with you in your pocket during the day. Also use close fitting polarised glasses when I am out or driving. These have been wonderful for keeping out any breeze,dust etc. Although took me some time to find the ideal ones,and spent a fortune. Have now bought 3 pairs from a well known web retailer
Last but not least have had punctal plugs put in to conserve any tears that I do make. Felt the difference immediately.
I now feel I am leading a fairly normal life instead always being laid low with painful erosions. Hope you have also found a solution...would be interested to know. Are you in UK?
Hi Marina The NHS cinsultant recently commented that only "toothpaste" could be squeezed from my lower eyelids , so they are now calling it dry eye syndrome I get by with nightly fills of simple eye ointment and daytime applications of Celluvisc as required. I can often go for several day off the celluvisc, but always carry it.
you problem sounds horrific. I wish you all the best with it.
So glad you have been sorted Brin this is a very complex issue by the look of things. The biggest probem seems to be, that its a bit of a lottery as to whom you see, as to whether they have the experience and knowledge to diagnose you, as there is so much to learn in this subject.
I sympathise with you and the consultants too.
Hi Marina yes in UK thanks for the tip in putting the ointment under the top eyelid I will try that tonight. I will bring up the punctal plugs at my next visit to the hospital.
I have only just realise how to work this website !
Yes,do mention the punctal plugs. I thought it would have to be a special appt to do it but my consultant did it immediately with some anaesthetic drops to numb the area."Probably wont help" he said but the immediate effect was amazing.
I'm in Kent now but the major breakthrough came with my diagnosis when I saw a corneal specialist at Peterborough Hospital. Up til then I was always met with puzzled looks when I complained of pain in the eye. "nothing there" was the often repeated response to my frustration. Had so many tests for bacterial and viral triggers...and no one saw the erosions! Havent heard of alcohol delamination Brin but must mention it at my next appointment.
I also have glaucoma,another inheritance,but very well controlled and pressures stable for over 6 years now so consultant doesnt think any further deterioration probable. A retinal occlusion started all this off many years ago,treated by laser almost immediately luckily as I worked for the NHS at the time and was seen by the consultant as soon as I mentioned it to a colleague. Apparently this was the start of the Thygersons,according to an optician but having read up so much about it I realise I had been photophobic for many years,and always preferred to wear sunglasses even as a child.
You are so right that it is a lottery as to who you see and what they know about these conditions,especially the dry eye syndrome. A nightmare for so many people.
Do keep posting Dave,and let me know how things are going.
Yes,I suppose my condition sounds terrible but having found the right treatments for everything I now dont think about them too much and lead a normal life. Would love to go on a cruise but always put off by the "air conditioning" aspect. not good for dry eyes. Wonder if anyone with dry eye has any experience of this?
Sorry about the length of this,but sometimes its good to talk!
Hi Marina I am particularly concerned to keep my eyes in as best condition as possible as my main hobby is astrophotograpy , I have already accepted I can see more on screen from the feed from my camera than I can at the eyepiece. On high power the pinhole of light from the eyepiece act like a lens tester and I see all the rubish in and on my dominant eye. Like you I have a settled routine that I get by on. The simple eye ointment does not stick in my left eye to well as it gets "watered out easily" I leave it untill I am ready to sleep before applying the ointment I am unclear as to whether normal tears contain the necessary eye lubricant, as I dont have a shortage of normal tears. It feels as they are just not oily enough ? My left eye is more of a problem than the right. Google dave astrophotographer. Celluvisc contains the same stuff as in your drops, so we use exactly the same treatment. Isnt it curious how the ointment as it leaves the tube always curls away from ones eye instead of diving in it . I often have to bite off a loop of it with a blink!
Hi again Dave, Yes,had to smile at the mention of 'curly' eye ointment. Sometimes have several attempts with wrestling the 'snake'. !! Have you had any problems with getting Simple eye ointment as there are licensing problems at the moment,and not expected to be resolved until January 2016 at the earliest. I have discovered that Martindale [ who make 'simple'] are making an identical product just for Boots at the moment. As to tears,I can cry OK but the Meibomian glands in the eyelids have packed up. They secrete the necessary oily ingredient to keep eyes healthy...sounds the same for you. Try Googling Meibomian Gland dysfunction. Keep smiling!
Hi Marina, yes same here I'm also on the Boots own just now. This is the third manufacturer I have had it from. Licensing problems !! Whatever next, bet it's a Brussles thing. What a fuss over tube of vaseline. Before I got to this level of resolution with the nhs, I found Brolene to be helpful but that went off the shelves overnight. Like TCP ointment a cure-all for any wound for 50 years that's gone now. One really has to project manage ones own ills. I will Google that, thanks.
my theory...privatisation by stealth......
Hi Dave, im a 31yo male and I also have the same issue. Luckily it is only in one eye my right eye. Over a year ago I started some medication for my mental health but as soon as I started the meds I started getting these abrasions eventually being diagnosed with RCEs. Some of the atacks were bad enough I would be rushed to ED at the hospital to have a local anasthetic put into the eye and a band-aid contact lense inserted. When ever I take the meds my eye's dry out causing the symptoms to come back and another erosion to occur. when I am not taking my medication my eye's are fine but ofcourse my head isn't. Are you aware of anyone else having this issue with any medication?
Hi Lindsay. Its quite well known that meds for depression can cause dry eyes or dry mouth or both. I'm guessing you are not in UK. Whats a band aid contact lens?
Hi Linsey Hi Marina. Marina seems much more clued up here than I. What I will say though, it is difficult to see someone who convinces me that thy understand the condition, I know we are all different, and respond differently to treatments. I can only speak from personal experiences.
If I sleep wiithout applying simple eye ointment to both eyes I run a high risk of waking with a VERY sore eye.This lasts about 6 hrs during which I apply Celluvisc, which I also apply as required, this is the only way I can keep it under control. I have never used the contact lens " bandage". I would say try the simple eye ointment nightly and the celuvisc you can carry it wherever you go. Dont sleep with your eye buried in the pillow either.
Dave T
Hi Marina, a band-aid contact lens is basically a contact lens but it is slightly different but same principle. it stays on the eye for about a week or up to a month. it stops the eye lid going over the part of the cornea that has an abrasion/tear so provides instant relief from the pain how ever it has its risks the main one being infection but it gives the chance for the cornea to heal. I am in New Zealand but I would say the eye clinic's there should be able to do the same. I think they do try to avoid using them mainly because of the infection risk as you dont take this one out at night time it stays in 24/7
Ok thanks I am from New Zealand so I might try and see if I can get those ointment's, I do have drops I put in every hour or two but they dry up quickly. I have found the contact lens bandage an instant relief from the intense pain but you will see my comment above to Marina I think the eye clinic's use these as a last resort due to the risk of infection. I know what it's like with the intense pain but I can't imagine what it must be like to have it happen in both eyes at the same time. When the bad abrasions/tear's have happened I can't use the good eye to see because it moves the bad eye causing more intense pain so for those first hours I am basically stuck in bed with all the curtains closed to stop light getting in the eye too. when these bad attacks/abrasions occur I have sometimes had to get taken in by ambulance to the hospital/ED because the only instant relief are the anasthetic drops which relieve the pain for about 20 minutes. They stick the contact lens on and give it a week or a month to heal up again. I will see if I can find that particular ointment that you use here in New Zealand and see how it goes 
Hi again Lindsay The eye consultant at Wycombe pressed my lower lid and described the lubricant exuded as being like toothpaste, instead of "oil". I can't stress enough that sleep with no sticky ointent is my enemy.
For your info Lindsay this website describes simple eye ointment:-
https://www.medicines.org.uk/emc/medicine/29615rafin, It is quite "bulky" when in the eye but comfortable when they are closed. I dont get that horrendous soreness with this regime, but do get the sensation of "soft dust" in my eye during the day and have to apply one drop of Celluvisc every 45 minutes , but I do have days with no problems at all.
http://xpil.medicines.org.uk/ViewPil.aspx?DocID=12103,
"Viscotears" I find no help at all. Chlorampenicol and Chloromycetin offer no lubrication but used in conjunction with simple eye o', it seems to stop or prevent infection. With me anyway.
Being from New Zealand Lindsay there should be no shortage of andydrous lanolin, one of the SIMPLE E'O' components !
http://www.livestrong.com/article/182699-uses-for-anhydrous-lanolin/
good luck
Dave T
Hi again Dave and Lindsay. I think you and I Dave have found the right regime for these dry eyes...we both seem to be on the same track [at least for us]. Totally know what you mean about finding a professional who knows what you are talking about. I have suffered blank looks,shrugs and the constant phrase "nothing there". Grrr.
I tried Viscotears initially but they are no better than hypromellose...you have to use them constantly during the day for any effect. Just had a painful eye infection and went to Docs. I now tell the professionals what it is and what I want..makes my other half laugh. Always ask for cloramphenicol ointment. Its better than the drops as it has more staying power than the drops,especially at night. If you are desperate you can get the drops from a pharmacist who is supposed to examine the eye first and ask relevant questions about your eye health in general. Only the drops can be obtained from the pharmacist,not the ointment which is a higher dose.