New to dry eyes, I think...

[Julie from MI]

Hi all.
I have been suffering with severe dry eye and RCE (at least that's what I would call it from what I have read on here) for about 4 weeks now. I think this is a new problem, but in retrospect my eyes have probably been dry for many years and it finally caught up with me. I am forced to wear bandage contacts to bed, which has helped a little with reducing corneal tears, but they do sometimes tear in the morning when I wake up or when I take the contacts out. I have tried everything and anything to help with this, but I can't imagine being like this for the rest of my life. Before the bandage contacts I had corneal tears (very painful for 2-3 hours) daily. After the bandage contacts I am down to maybe 4-5 tears a week with about 1 or 2 severe. I have read a lot of suggestions on here already and am eager to find anything that I can do to change or add to my regimine. I is just great to know that I am not alone in this and there are others who know what I am going through.
Thanks for reading. I look forward to hearing your experiences and sharing mine.
Julie

[Guest]

Julie

My condition is different from yours in that mine was induced by corrective laser surgery.

However, I was a very very regular sufferer of RCE's.

If you haven't already, I think your first port of call is your Opth's office, to try and establish what caused this and whether there is an underlying problem.

As far as treatment goes, I found I got the worst of it under control by using genteal gel (or visco tears) and taping my eyes closed of a night, then before I even tried to do anything of a morning, I poured saline solution over my eyes before I removed the tape or even tried to open them.

On those days when the pain was intense, I used an ice pack (wrapped in a face flannel) to try to bring the pain down to a more manageable level.

Pain killers also helped in moderation and certainly under the supervision of my GP.

Once the worst of my RCE's were over, I now use Clinitas Ultra 3 (Freshkote in the US) every night instilled as the last thing I do before sleeping.

There are surgical solutions (PTK) and debridement, the latter is performed on a routine basis in laser eye factories prior to performing laser surgery (PRK or epi-lasek).

I think a discussion with your treating DR wouldn't go astray at this point.

Just some ideas to ponder, and welcome to the board.

Ian

[Julie from MI]

Thank you so much for your response to my post Ian.
I have been to the opthamologist many times in the past 4 weeks, no cause for my dry eye has been found. I have been doing many of the things you mentioned already with some relief, but it's inconsistant. Some days it helps and some days not so much. I have used Genteal PM nightly and it seems to help, but not all the time. I tried taping my eyes shut, but became clostrophobic(sp?) and just about had a panic attack--LOL. I did get a gel packed face mask with a soft cloth cover that seems to serve the same purpose in keeping the moisture in me eyes and insuring that my eyes are completely shot while sleeping. I will try the things you mentioned about ice packs and saline before opening my eyes. Ibuprophen does seem to help with the pain some, but it take a while. I have another eye appointment next week and I'm going to mention PTK surgery as an option if the Restasis, which I haven't been on for very long, doesn't work.
Thanks again,
Julie

[Guest]

Julie

Unfortunately, it appears with RCE's there isn't a quick fix. It seems to take a load of patience and persistence over a prolonged period.

I tried the taping for 3 months but I can certainly understand your concern about the restriction, it isn't easy.

I don't like talking about being healed of my RCE's because everytime I mention that on this board, I suffer one that night, so fingers crossed, that won't happen tomorrow.

You are right in discussing options with your DR, and if you don't understand something they tell you, ask questions - I'm sure my DRs cringe when they see my name appear on their appointment list for the day - LOL.

Sometimes a second opinion doesn't go astray either, it was my third doctor that discovered I had micro cysts under my epithelium which was causing my problems and when I pointed that out to Dr 1 and Dr 2 they said, Oh yes I can see them now.

It seems that I may have had an underlying problem prior to my surgery and it is even more ironic that the surgery I had is sometimes used as the cure for some people (debridement + laser = PRK). PTK (not to be confused with PRK) is where a laser is used to "spot weld" the epithelium.

I would be discussing Debridement and PTK as well as other non surgery options with your DR.

Good luck, you will find a workable solution.

Ian

[liz56]

Hi, Julie.

Ian is giving really sound advice, so I just wanted to pop in, because, I, too, live in Michigan. I had to go out of town before I found a corneal specialist who could get me on a program that suited me. I am adverse to surgery (PTK) right now, if I can manage the problem with lifestyle changes.

I'm sorry that you have this problem. It is not easy, and I am glad that you found this site. This place helped me and gave me support while I tested what worked best for me.

If I can be of any help, just let me know.

--Liz

[alisonW]

Hi all....

I'm in MI too.

Julie - Although not popular around here, the only thing that prevents me from getting erosions is to use an ointment (Refresh PM) rather then a gel at night. You may want to see what your doc thinks about using one before bed.

Liz - Have you found any really knowledgeable dry eye specialists in MI. I've been to several "corneal specialists" and none have offered much relief.

Thanks so much.
Alison

[Julie from MI]

Thank you for your advice and support Liz and Alison. I have Refresh PM in my bag of tricks (actually it's a big coffee cup full of various drops and ointments), but I haven't tried it yet. Maybe I'll try it tonight in place of the Genteal and see how it works. My opthamologist seems hesitant to send me to a corneal specialist for some reason. I live in the Flint area. Is it possible to go to a specialist without a referral? Do either of you know of anyone to recommend? It's nice to know there are people near by to lean on.
Thanks again,
Julie

[liz56]

Alison, you make a good point about ointment. I know that when my problems first started Muro 128 5% ointment, used with the Muro drops, helped. However, after initial healing, it seemed that the Muro ointment did more harm than good. It did not work for me, but I know people here, like Lucy, who had RCE's and ABMD, who found it to work well.

Julie, I went to six doctors here, including one corneal specialist, and while Dr. Mesaros in Midland helped me and did so much to accommodate me and ultimately referred me to a corneal specialist, it was not until I left town that I found a corneal specialist who correctly and completely diagnosed me and got me onto a routine that eventually healed the problem.

I don't know about the issue of seeing a specialist without a referral. I was referred to the first one, and I asked my family doctor to help me with the second one. I explained my problem and asked for a referral.

Like Ian, I still have to keep up on the threat of erosions, but they are much more under control with lots of maintenance-- Genteal Gel at night, Dwelle / Muro drops during the day, Tranquileyes, and lots of water and fish oil.

It took a long time to get it under control, and I had lots of setbacks, so if things don't seem like they are working right away or if they work and then take a turn for the worse, keep hanging in there and don't give up! Superficial healing of the cornea is rapid, but deep, long-term healing takes a long time, and with my dystrophy, I have to build new habits into my life.

Best wishes,
Liz