So I know I dreamed last night, but I can't remember what I dreamt. Ever since Little One was born - 19 months ago - I've had what was first diagnosed as "dry eyes." After a year of dry eyes and then the most severe eye pain I've ever experienced, I was then diagnosed with Map Dot Fingerprint Dystrophy. It's called so because the lesions on my cornea looks like a map made of small fingerprints. I usually have an "episode" (for lack of a better word) when I wake up in the morning. Recently, though, the fear of an episode has been waking me in the middle of tdhe night, near morning.
An episode consists of blinding pain in my eye where it can't open but it hurts to stay shut. Light is painful. My eye looks like a big, red tomato and it lasts until my eye can heal itself - approximately 24 hours.
Last night I had an episode at 2:30 a.m. I don't know why but I had jerked my eyes open last night and I'm pretty sure it was the result of a dream but the pain overrode any dream memory I may have had.
"Complications of Map-dot-fingerprint Dystrophy?
In some cases, epithelial erosion may occur. Epithelial erosion can expose the nerves lining the cornea, causing severe pain. The cornea's normal curvature may be altered causing astigmatism and nearsightedness
As the cornea is altered, vision may be blurry and accompanied by:
Moderate to severe pain. The pain will be worse on awakening in the morning.
Increase sensitivity to light
Excessive tearing
A feeling that something is in your eye
Can Map-dot-fingerprint Dystrophy be Treated?
Yes. Treatment may include an eye patch, eye drops, and ointments."
In some cases, epithelial erosion may occur. Epithelial erosion can expose the nerves lining the cornea, causing severe pain. The cornea's normal curvature may be altered causing astigmatism and nearsightedness
As the cornea is altered, vision may be blurry and accompanied by:
Moderate to severe pain. The pain will be worse on awakening in the morning.
Increase sensitivity to light
Excessive tearing
A feeling that something is in your eye
Can Map-dot-fingerprint Dystrophy be Treated?
Yes. Treatment may include an eye patch, eye drops, and ointments."
Well, as the above information states, this can be treated. However, since I've been having episodes about once a month, I have a feeling my treatment isn't working. I think it's worse now because of the winter, but if these last much longer I might lose my mental sanity. Imagine pepper spray in your eye, but even worse, more often and completely uncontrollable.
43 comments:
smile, figures i go away for the weekend and suddenly youve become chatty cathy...
who really ?
thankshas heard of map dot fingerprint
thanks for the extra information...its important to share things like this i think, as
Hey, I did a quick Google search for map dot fingerprint dystrophy as I just found out this is what I have and I wanted to see how anyone else copes with it, your blog post came up.
I totally understand what you're going through, I've been using ointments and drops and taping my eyelids down at night for months, but it still sometimes happens and it's awful, terrifying, agonising. It's difficult to get people to understand because unless they see my eye first thing in the morning, or if they see me panicking in a huge amount of pain, then they don't understand what's going on - 24 hours later my eyes look fine and I'm completely recovered so if I've had to take a day off work, they think I'm faking.
I'm going to see a specialist next week to see about getting more treatment, they can give you bandage contact lenses or laser surgery, there are options (though ultimately no cure).
If you want to email me, my address is boo52@hotmail.com or go to http://www.dryeyezone.com/talk/ to talk to other people suffering from the same sort of thing.
Thanks for the reply. I don't think taping my eyes shut would help, because that doesn't lubricate the eyes. My doctor said I could get my tear duct blocked so that would put more tears in my eye, but I just haven't done it yet. I haven't heard about the contact lens or the laser surgery. I'd just about try anything because it affects me everyday. I only have a "bout" once or twice a month, but every morning my eye hurts a little, nothing I can't cope with. Even at its worst I haven't missed work - I even had to go in to my son's school and read to his class after a bad morning - that was fun. I was told that the cornea heals within 24 hours which is why you don't see any remnants of it.
If you find out anything, please let me know. Not that I wish this on anyone, but it's nice to know there are other people out there.
I have this condition also. I had the corneal scraping on my bad eye and I haven't had any pain since (about 1 month ago). I use drops and ointment. Seems to help. I read on the internet that this flares up for a few years and then just goes away on its own. Anyone else heard this?
My ophthalmologist said that in some people it can go away on its own, but there's no guarantee. I have heard some people had the scraping. There's also contact bandages and ductal plugs, but so far my only treatment has been ointment at night. I'm going to be looking for a specialist to see about this. You should check out the forum in Lindsey's comment above. There's some useful information there. Good luck with your healing process.
I'm a 3rd year optometry student currently, and I've so far been involved in 2 cases of Map Dot Fingerprint Dystrophy (also known as Anterior Basement Membrane Dystrophy - ABMD or Epithelial Basement Membrane Dystrophy - EBMD). This condition causes recurrent corneal erosions, or what you feel as extreme pain that wakes you up in the morning. It occurs because the cornea swells at night (5% swelling is normal in everyone), but in your case the eyelid adheres to the loosened corneal epithelium and when your eyelids flutter in the morning, it tears part of the epithelium off, thus, pain. An effective prophylactic treatment (to prevent this from happening) is using hyperosmotic ointment or drops such as Muro128. Ointment at night before bed is preferable as it stays on the eye longer, but it will cause some blurring of vision (all ointments do) and can sting upon instillation. These, when applied at night before bed, will help to pull the water out of the cornea and prevents the epithelium from getting too loose and reduces the chance of it pulling off upon awakening. It's a good habit to be into, especially if these happen frequently. Compliance with this seems to fall over time as people not to have so many "episodes" and since it stings a little . . . Anyways, this is something worth talking to your optometrist or ophthalmologist about.
Thank you anonymous. I appreciate what you wrote. As you can see from the post, that was in January and I've definitely learned all of what you said. I think it's funny that you write today - I use Muro religiously. It works better then the other ointment I was using, but it's not foolproof. I still have erosions 1-2 times a month, and usually the pain level is about a 2-4. Two nights ago I had an 8.5 - 9 episode! I could barely see yesterday and today my vision is still a bit blurry, but still on the mend. I've heard about the hypodermic needle puncture. Any thoughts on that? I just can't imagine having to live with this for the next 50 or so years.
Wow -- so glad I found this thread. It's like the only peer group out there for Map-Dot-Fingerprint Dystrophy (what an absurd name). I was officially diagnosed with it yesterday after suffering from mild erosions for the last 3-4 years. I just figured I had dry eyes and have been using Refresh Liquigel.
This all changed on Saturday night when I had such a terrible episode that I had my wife take me to the emergency room. Of course, the docs there had no idea what I was suffering from (they tried flushing my eye), and ended up giving me oral antibiotics, an ointment antibiotic for my eye, and a Vicodin. None of which did much.
When I finally saw my ophthalmologist yesterday, he looked at me with the appropriate instruments and just kept saying "it's hurting me to look at your eye" (he was doing this in an endearing way of course).
Bottom line -- I'm on a crazy regiment of stuff right now while this thing heals: Muro 128 (in both eyes), Fresh Kote gel (in both eyes), a few anti-inflamatories and antibiotic ointments for my affected eye, Omega 3s, and an oral antibiotic. We also put a humidifier in our bedroom. OY!
Can't wait to see where this goes ... like others have said, I can't imagine going through life fearing that I'm going to tear my cornea each night.
I'm so sorry that you were recently diagnosed. Mine was the same type of thing. I thought I had dry eyes for about a year after my younger son was born and then one night I had what we call an "erosion." Please find a doctor that specializes in corneas - unless, of course, you're happy with your opthalmologist - then don't change. I still haven't found someone I'm truly happy with. I still use the generic form of Muro every night and it doesn't always help. I'm at about 2 erosions a month, and they're mostly minor so I'm pretty happy with that right now. It's the bad ones that make me think I should stick a hypodermic needle in my eye like my doctor suggested to create scar tissue and adhere everything together. I'm just not ready for that yet. There's a web site http://www.dryeyezone.com/talk/. It's pretty good. I don't go on as often as I probably should but there's good information and they're a great resource. I'm always here to talk if you need it. I wish you the best of luck.
Oh, I found for me that taking some advil right when I get my erosion helps to cut down on the pain, mostly with a small erosion. Last month I had one so bad I had blurred vision for nearly 2 days and had a migraine in the middle of it - all while trying to work - Advil didn't help that much for that one. I wish you all the best of luck.
Thanks for the feedback and advice. I will see if I can find a corneal specialist and will also check out the Web site you recommended. Gotta love the Internet. There's a site for everything.
I think the erosion I had last Saturday night sounds like the flavor of the one you had last month. It's now 5 full days since the incident and my eye is still blurry. Like you, I have also been suffering from a terrible headache since Wednesday. The worst part is that I'm so nervous I will reinjure the bad eye at night. I'm up every 90 minutes or so to remoisten my eyes with something or other.
Bring on the summer and the moister air!!!
I know what you mean. I try not to rewet at night, just keep my eyes closed, but for days after an erosion I will get the worst sleep because I'm always afraid of another erosion. Plus, the medicine hurts more because you're eye is still healing. I hate it when my dream causes the erosion - I'll open my eyes or have REM that will cause it. I get so mad.
I'm a bit concerned that it's been 5 days and you're still blurry. Personally, the most I've ever gone has been 2 days. The cornea heals in 24 hours. Can I suggest that you at least call and talk to your opthalmologist to make sure everything's ok? Have you had any minor erosions since your big one? Good luck to you and will you please keep me informed?
My erosion episodes have been severe, but always every few months without a set schedule. I'm currently using Muro128 and it seems to be working so far. The corneal specialist I visited suggested to keep on the ointment and the disorder in most cases will burn itself out eventually. If not, the needle treatment is not actually that terrible.
Have you had the stromal puncture yet (the needle treatment)? I was having 2 erosions a month. Some weren't severe, but I think that was more in the summer months and once winter hit they became severe again. I'm now about 4 weeks post-surgery and daily take eye antibiotics and eye steroids. I still have a little blurriness and can wake up dry but haven't had an erosion. Unfortunately, my ophthalmologist just moved far, far away so I'm a bit stresses about seeing this new doctor, but life moves on and I have to see him for post-surgery follow-up. I liked the muro, except having to do it. I think I would have lived with once every few months. I was contemplating living with once very few weeks.
I hope everything works out for you.
Boy, this all sounds so familiar. I am in the middle of a medium erosion at this time. Blurred vision and slight headache, not the migraine type that I can commonly get.
I have been battling this for 3 years. The first two years, the Dr. treated me for severe dry eye. I switched doctors and he diagnosed as MDFD. This is not dry eye.
I have been doing Muro 128 for the past year. It has helped, but, I still get 2-3 erosions a month. Affects both eyes, but not at the same time. I have more trouble in altitudes, when I go snow skiing, and dry climates such as South Texas and New Mexico where I hunt.
This makes life miserable, at times. I have considered the laser and stromal puncture. I may have to do it if the erosions do not subside.
If you have had either of these procedures, please provide feedback on how long it puts you out of work and how effective it treates the issue.
I appreciate everyone's feedback. Sometimes I think I am going insane. This stuff is hard to explain to someone who has not experienced it firsthand.
Dear Anonymous,
You are not alone and you are not going crazy - although I understand both of those statements first hand. I only had erosions in one eye, but my story is extremely similar to yours. I have heard from my doctor that 2-3 erosions a month is A LOT. You should have not to put up with that and if Muro's not keeping them at bay you may want to seek alternative treatment. I was scared, but I finally did.
I had stromal puncture (no laser) in early January and it is now May and I have not had one erosion!!! I can't even explain to you how awesome that is, though I'm sure you can imagine.
The procedure itself was quick and easy - some numbing drops and about 5 minutes for the procedure. I was out of work the rest of the day and went back the next day - although I should have at least taken 1 more day off of work, if not 2 more, but I was more or less functioning. I had a contact bandage for about 2 months and had a lot of follow ups. I think the follow ups took just as much out of me as the initial procedure - a bit of a headache, slight discomfort. But by the next day after each follow up I was fine. I think that has to do with my stress level, too. I get pretty stressed at the opthalmologist - all those lights and drops.
I am still on a steroid drop in the morning and just last night switched from Muro ointment at night to Muro liquid drop. I woke up with some minor pain this morning but as soon as I put the steroid drop in my eye (although a tear drop would work just as well) I was fine. I don't know if I didn't use enough Muro eye drop or if I'm going to need to continue the Muro. My goal was to get off of all drops, especially the goopy Muro, but I'm just happy at this point that I haven't had one erosion in 5 months. To me it's a miracle.
If you live by Iowa, Dr. Anna Kitzmann just moved there and if you're by the Clinic Dr. Dupps is great too. Let me know if you have any other questions or need more information.
Thanks for the feedback. My current routine is to keep bandages (no-power contact lenses) with me at all times. When an erosion occurs, I can seem to avoid most of tte pain by popping in a bandage for a few days.
This does not address the root cause of the issue, but seems to fit my needs especially as I am always on the go. I do Muro 128 until an erosion occurs, then I put in a bandage with Steriod/antibiotic like Tobradex until fully healed.
I will leave for a week in Brazil tomorrow. I always carry extra bandages and pain medication everywhere I go. This seems to get me through trips snow skiing and hunting in dry climates. Prior to finding these bandages, I had spent many trips in pain.
I am still considering the surgery (stromal puncture or laser). But I have it bad in both eyes. Would doing both eyes at the same time be too much?
Just be careful about infection with the contact bandage. I never put one in myself, although I did used to use contacts in general. Everything I read about them on the dry eyes board is negative, but if they work for you, keep up the good work.
As far as a "double surgery" I can't speak for laser, but the stromal puncture wasn't bad. I'd definitely have someone drive you to and from because light sensitivity and blurred vision are common side effects. I was really scared about the procedure, but it wasn't bad at all. Seriously, just an office visit with about 4 follow up visits. If you have it bad in both eyes and you're getting 2-3 a month, I would think long and hard about the stromal puncture or laser, or whatever your opthalmologist would recommend - but definiltey go see someone who specializes in what we have. For as many people that have it, it's hard to find doctor's that know about it. I'll be thinking of you - and have a GREAT time in Brazil!
Hi people,
I'm from holland 36 years old
I have mdfp fron 2007. Last year i had an extreme episode that lasted 7 ours. Next morning in the hospital They found that the wound was infected. I'll make a long story short. It was a akanthamoebe infection that got in my eye caused bij the wound of mdfp. Thats the last thing you want. I had a cornea transplantation to getrid of the infection. Not all went well. my sight on that eye is 0%.
Lately i also have mdfp on mij other eye. I had a lazer treathment on the eye. (no big deal) But irritation on my eye seens to come back. As you can imagine i'm affraid mdfp wil come back.
Be hygenic!!!!! no fingers in your eye if you had an episode. Clean your eye before you go to bed.
Your cornea has almost no defence against bacteria when its wounded. Cause there is no blood running in your cornea. Don't end up like me!!!
The advices i got:
Drink lots of water
Use omega 3 and 6
use teardrops
no smoking!!!
no alcohol!!!
No cafe
Exersice
linseed oil seems to be working (oral)
Good luck to you all!!!!
If you have more tips please let us know
regards
rob
I've just been diagonsed with MDFD after suffering for about 3 years with what I that was severe dry eyes. Unfortunately I have the episodes every morning. It feels like I've been stabbed inthe eyes with a knife and then the skin torn off it. For several months now its accompanied with severe headache. I haven't tried Muro, but I'll try anything at this point! Dr, just told me to use OTC eye ointments(don't work). Will this every morning thing ever go away?!! Dolly
Dolly,
I feel for you and know what you're going through. Find a specialist in your hometown that specializes in MDFD. Ask them specifically if they've treated for it. It's difficult to find someone who knows what they do, but they do exist. Besides eye drops and treatments there are other ways of dealing with it, either stromal puncture or laser - it's really up to your doctor. I was having about 2 major erosions a month and was told that's a lot. I had stromal puncture in January and although I still use Muro drops twice a day and still wake up with dry eyes once in a while, I'd say that I haven't had an erosion since January which is, in my opinion, major. I had to go through 5 opthalmologists before I found one that worked well with me. Don't give up - go see every opthalmologist in your town if you have to. Life can be better!
Hello All,
I know this post is getting long in the tooth, but wanted to share what I've found out about my own MDFD.
mine was diagnosed after I stuck my finger in my eye, tearing the cornea back, and it didn't heal correctly. A couple of optometrist visits and then and opthamologist and it looks like I'm headed for PRL laser surgery. Here's the plan as I understand it:
Completely burn off my left cornea. Cap it with a contact for four days while it grows back. Final healing and "normal" eyesight return in two to three weeks.
It doesn't cure the disorder, but it should at least take my eye back to square one. Prior to injuring my eye, it was 20/25.
I'm headed for a second opinion. Anything about eyes is scary stuff, but thought I'd share this in case it helps anyone.
God bless!
That should have said "PRK" laser surgery. I'll leave the other typos and blame them on my eyes. :)
I have had recurrent corneal erosions for at least 6 years now, they gradually became more frequent and impossible to live with. I have punctal plugs but refuse to let any dr. near me with a knife. Your opthalmologist can't really feel your pain, try as they might, unless they have the same condition. So I took things into my own hands and my crazy solution is to wet a baby washcloth before bed, place it over my eyes and put a cheap pair of sunglasses over that (first apply ointment of course). I wake up one time and always apply some artificial tears, rewet the washcloth, put the sunglasses back on and go back to sleep. If I'm too tired for all that I just apply the tears while staying in bed. This has worked well for me, doesn't cost much and no real risks. Just make sure everything is clean - new washcloth each night. I have kept a journal of these erosions and wondered if there is a food trigger. The only one that keeps popping up is McDonalds coffee, not sure what they put in it but I'm convinced it triggers an erosion for me, I will NEVER drink it again. Hope this helps.
I was first diagnosed with MDF 9 years ago. It began with excessive tearing to the point I had sores I the outside of my eye where I was constantly rubbing the tears away. Then came the night when I had my first erosion. It was terrible. I went to my local opthalmologist and he diagnosed me with MFD. He scraped my eye and I began with the steriod drops. It worked for about 8 months when I had another bad erosion. I continued to have erosions on an almost nightly basis. By this point I was legally blind in my right eye and the left was not much better from all the erosions healing over and over. My opthalmologist recommended the puncture surgery. I had my left eye done first then 2 days later my right eye. It took 2 more surgeries on the right before it helped. I went 8 wonderful years with no episodes until 1 month ago. I am scheduled for surgery this afternoon in my right eye. I pray that I can get another 8 years out of this surgery. I know there is not a cure but this surgery does help subside the erosions. I love my big comfy bed but when my episodes are at their worst my bed might as well be a torture device that I am strapping myself into each night. I am happy that I am not alone with this disease. As someone said others that do not have this terrible disease can't understand what we go through. I will keep everyone posted on the outcome of today's surgery.
Good luck. I hope all goes well.
Hi everyone, I was diagnosed about 6 years ago after an eye injury to my cornea wouldn't heal. After reading al these post it is somewhat of a relief to know I am not alone. I have been to 3 opthmalagist and a cornea specilaist in Chicago, with nothing more that "use these eye drops" and see me in 6 months. I would like to have surgery but they don't give it much of a guarantee. I bet if one eye Dr suffererd from this horrible desease they would be more quick to help. Bessie how did your surgery turn out?
Keep the search up for a specialist who deals specifically with MDF. They are the only ones who really understand how painful this is and how to treat it.
You need to advocate for yourself. I think I went through about 5 doctors before I found one who both understood MDF AND who had the bedside manner I needed. I started my therapy with drops but then had stromal puncture. It's been 2 years!!! since I've had an erosion. I've had some small issues and still use plain eyedrops every day just to help with the dryness, but I don't wake up as scared anymore.
Good luck!
I can't believe I finally found this forum! I've been suffering for about 10 months--diagnosed about 8 months ago. I get stabbing pain sometimes as much as once a week and red eye but it resolves quickly. It seems to be episodic--like a migraine--the longer I go without an attack the more likely one becomes. I use a wt washcloth too, which really helps. Muro drops, holistic vitamin A ointment, homeopathic drops, jell drops, cod liver oil. It is ridiculous but I'm afraid of the surgery. It is indeed better--no burring for may months. But still, what a drag. Thank you for being there!
Miriam,
I feel your pain (almost literally). I am not a doctor so everything I say is my opinion, but I was also scared of the surgery. I had one doctor be so non-chalant about it that I never went back to him. I needed someone to take me seriously. We tried everything we could but after having bi-monthly erosions, we decided it was the best course of action to have the stromal puncture. It didn't hurt any worse then an erosion and, it's been more than 2 years now and I can count on ONE HAND (I love saying that) how many I've had. I still use an OTC eyedrop twice a day and still need to be careful to not open my eyes quickly but to let them lubricate but my life is so much better. I'm not in tears and fear every day. Talk it over with your doctor but 10 months is a long time to be in pain. Good luck to you.
I just wanted to say "thank you" for everyone who posted on here. After several months of suffering I was diagnosed with "Micro Dot Fingerprint Disorder" last week, and....well, the optometrist I saw literally told me to use OTC drops for it the rest of my life, with no discussion of other treatemnt until I asked about PRK, which he was all about me getting.
Online searches quickly showed he barely discussed anything with me, as "you have cell damage" was the extent of his discussion with me. I had no idea that the fact my eyelids stick when I wake up in the morning was related to this problem, such was the lack of explanation I go.
I really, really appreciate everyone who has posted on here, as my family and the one friend I've talked to about it have not taken it seriously. It's good to know people are out there who understand what I'm going through.
Tomorrow I'm going to see about meeting with another optometrist, as while I have no doubt about the diagonsis, I don't really want to put money into the pocket further of a doctor who did such a poor job of explaining things to me. Please wish me luck!
Hello all!
I was just diagnosed with "fingerprint dystrophy" yesterday and to;d to use Systane drops during the day and Muro ointment at bedtime. My main symptom was swollen bags under my eyes (MUCH worse under left eye) so much that my whole left side of my face looked swollen. The optometrist said that it was from exessive tearing at night. It happend before and gets better durring the day, but yesterday was kind of outrageous.
I do have some eye pain but nothing severe. I can't stand being outside without sunglasses though.
Has anyone else had the excessive tearing issue?? I couldn't understand why my eyes were so puffy every morning. I have been having excessive tearing for a few years, it seems like...
Thanks again to all who have shared!!
I've only teared after an erosion and never had an issue with tearing during the night. Good luck with your recovery.
Hey, I just want to say "thank you" for writing this post. It is nice to see your post AND all of the comments to know I'm not alone.
I've been dealing with SEVERE pain in my left eye for about a month now. It usually happens only in the morning when I wake up, but I have on occasion awakened in the middle of the night (say 2 or 3am) and thus had the joy of experiencing the extreme pain more than once. In my case, I deal with the pain, excessive tearing up, and can't help but rub my eyes (not that it helps) for about a half hour before my eye will calm down. Then I dread falling back asleep because I know it will all happen again when I wake up normal time.
I was officially diagnosed by an optometrist with Map Dot Fingerprint Dystrophy last week and have been using Muro128 eye drops 3x during the day and supposed to use a Muro ointment at night. Due to lack of availability at my pharmacy I got a generic ointment. Not sure if that was my downfall. My pain got better for a day or two, but has since resumed severe pain. Last night I got up 4 times during the night (no clue why) and experienced an "episode" every time and once again waking up this morning.
I'm considering seeing an opthalmologist soon, might need to get the contact lenses next. If this goes on much longer, I fear I will go insane!
Cod liver oil was mentioned briefly here. Fish oil is actually a very critical and key treatment that usually works very well. I have Map-dot-fingerprint Dystrophy and my symptoms and issues were exactly the same as described here. I tried high dose fish oil (1000mg EPA/500mg DHA per day to start) after reading about how it helps with other dry eye diseases and corneal problems. It worked wonders with a few weeks! I no longer go to bed in terror of night time erosions, and within weeks I went from 10 to 12 eye drop caplets per night, down to using a caplet of drops once a week or so on the rare occasion that I feel threat of an erosion. It seems to work by enhancing tear moisture and possibly also because of well documented anti-inflammatory effects at the cellular level (corneal epithelium in the case of this eye disease). Please try this safe treatment idea! Two or three high EPA/DHA gelcaps of Fish Oil a day will amaze most people suffering from this problem. It won't "cure" it, but has potential to put the problem almost completely into remission or greatly reduce erosion outbreaks. One other thing... drink plenty of daily water too to add a bit more moisture to your natural tears.
I've just started taking fish oil to help with my MAP problems. I'm happy to come back here in a few weeks and report if I found it helpful. I'm certainly hoping for results that I've seen others share.
I was using petroleum product on my eye at night prescribed by my dr. and was concerned about ingredients. SOmetimes it worked and sometimes it did not. I started taking Omega 3 fish oil by NOrdic Naturals because they purify it for my heart and lo and behold my eyes stopped hurting. I was astonished but needless to say I take Omega 3 every day now. I guess I am lubricating my eyes internally. I also use Now Argan oil to moisturize my face and eyelids every night. Not sure if that helps but it is helping my eyelashes stay soft so as not to assault my eye.
Julie,
I'm glad you found something that worked for you. Keep on doing what you're doing and hopefully all will stay healthy!
I have had an epithelial membrane disorder for over ten years. It is debilitating at times. I have had two PTK laser surgeries been on a long low dose of doxycycline and still no luck. I wake up a million times a night to pop in drops and my vision has deteriorated.I use Hylo-Forte eye drops,(expensive!) which are available in Australia, because they are as close to natural tears as I can find and everything else hurts. I have astigmatism, can't wear bandage lenses and basically have resigned to the fact that I will probably suffer this for the rest of my life. I am interested in other things that may be associated with this condition. I have droopy or heavy eye lids and I also have oily skin (I have heard oily skin may be correlated) . I am wondering if botox was used to relax the muscles around the eyes it might help? I find that when I wake in the morning with an erosion, I feel I might have been rolling my eyes back while I am asleep and this is causing the erosion. I think stress might add to the problem. I don't know....just always wondering that there may be an answer out there. I put a dampener over my alarm clock to deaden the sound so I am not startled when it goes off, but usually I am awake prior to the alarm going off in fear of my eye surface peeling. I am grateful I haven't lost my eyesight all together, sometimes it is better to be grateful than feel sorry for yourself :)
Sammi,
I am so sorry that you have suffered for so long. I'm not a doctor and have no idea any way to help you but to let you know that you're not alone and that you have a great attitude about this. Do not ever give up and keep looking for a solution. I've now had a second surgery (not lasik) to fix my erosions and am hoping this one sticks. I have been close to another erosion but thankfully haven't had one yet. Keep your chin up!!!!
I've just stumbled across this whilst in the middle of a 3 day, so far, 'attack'. Visited the hospital today and my drops have been changed and been given steroid drops. I've had EBMD for 10 years. Most mornings, my eyes are sore but settle quickly. They become very light sensitive and the only relief is when it runs.
Currently, I'm using Vita Pos at night and Hylocare and Hyloforte during the day. I have been using Lumicare, which is pretty good.
I feel your pain, completely. X
Anonymous,
10 years! I'm so sorry to hear that. How often are your erosions (what you would call an "attack")? I have had 2 surgeries now and while not 100% the relief is great! Have your new drops helped?
I had the triple superfical kerotechtaomy. Idk telling you how mine went will probably just scare you. Alot of people can go back to work in a week. But my case was really bad. I had scarring and was half blind for months and was having eye dr appointments at least every other day. In the long run my vision came back and stablized but my vision still was never as good as before. Also recovery was extremely painful for for the first three weeks at least.....but in spite of all this i still might reccomend it because i havent had any errosions since and i just couldnt go on the way things were. Too painful, too costly as the scraping and medical bills for each errosion was about $300, and they always came at the worst times lile finals week
If you do get it my best advice is to put up blackout curtains before hand and but audio books.
If the cornea becomes damaged beyond repair, or has become cloudy due to corneal disease, the only way to see an improvement in eyesight is by undergoing a corneal transplant (keratoplasty).
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