I am here with dry eye, but I don't know why.

[skeeter70]

Hello,

I am new to this site and would like to introduce myself. I am a 40 year old teacher and mother. I have been suffering with Dry eye for about 10 months now. I have been given very little help from doctors until recently. Because I have been suffering so with little help or relief, I have become very fearful of this condition. I am trying to stay strong, but I have weak many weak moments. I hope that this forum could give me some of the strength that I need and alleviate some of my fears.
I was officially diagnosed with dry eye about a month ago. I started having significant problems about a year ago. It started when I got this horrible burning in my right eye. I went to a few doctors who said that I had dry eye. I used over the counter drops with no success and then I went to a doctor who said that I had corneal erosions. She put me on steroid drops which gave me some relief, but I still had pain. She said that it could take up to 6 months to heal. In the meanwhile, I continued to use OTC drops and night ointment. It seemed that I was improving, but then it got worse about four months ago.

To make a long story short, I ended up at a corneal specialist who finally tested me for dry eye and he said that I have the kind where I am not producing enough tears. I have been put on restasis and have been using it for about a month. Right when I think that the restasis, I will have a bad day of burning in my eye. So, I am not sure yet.

I am not sure why I have dry eye, I had blood tests ran to rule out many of the underlying conditions such as RA, thyroid etc. I wish that I knew the problem so that I could treat it better. I have many questions that I was hoping someone on this forum could help me with. I will just list them and if anyone could help, I would appreciate it.

*Could I have sjogren's, and bloodtests not show it?
*Could lasik surgery that was done in 2005 now be causing dry eye?
*Could a previous chemical burn cause dry eyes much later?
*How effective is restasis?

Thanks for any help that you can give.

[Lucy]

*Could I have sjogren's, and bloodtests not show it? -yes
*Could lasik surgery that was done in 2005 now be causing dry eye? YES!!!
*Could a previous chemical burn cause dry eyes much later? YES!!!
*How effective is restasis? It is effective in 1/3 to 1/2 the patients. It can take as long as 6 months to work, so be diligent.

Hopefully others will come along and give you more info. I've given you the short answers, 1t's 4:07 a,m. I have both Lasik and Sjogrens. It's possible you could too, but don't go looking for trouble. My Lasik was 10 years ago and Sjogrens dx 3 years ago. Lucy

[Rebecca Petris]

What did the specialist say about the erosions?

What if anything is going on in your left eye?

You have brought up two separate issues, corneal erosions, and dry eye. These may be related but then again they may not and that is really, really important to getting properly diagnosed and treated.

Corneal erosions can happen as a consequence of severe dry eye, but they can also happen independent of dry eye either as a result of injury (in which case onset sometimes takes place long after recovery from the injury) or from an anatomical defect of the cornea known as ABMD or MDFD. Erosions often go undiagnosed, even by specialists, and it is important for the doctor to get a really detailed history and understand your symptom pattern thoroughly.

As for the dryness, LASIK is a common cause and symptoms do not always show right away. LASIK dry eye is also in some ways just plain different. And it's not uncommon for it to be much worse in one eye than another. Sometimes what happens is it just makes you drier without symptoms but later when anything new happens to your eyes it is a trigger that tips the balance and wham, you're symptomatic. At this stage I wouldn't stress too much about knowing the exact cause. Having a detailed diagnosis (aqueous deficient, oil deficient, lid closure, erosions, etc) is important to treating it properly, but that's different from knowing the cause specifically of aqueous deficient dry eye, which is much less likely to matter in terms of figuring out what's going to help get it under control.

I would really try to pin down the doctor about whether you've got RCE, and if so, have a look at the discussions and blogs here (there are many) - start with Liz56, one of our moderators, who has a lot of experience with this. Many people have gotten it under good control with the right lubricants, night eyewear, and other techniques for managing it.

[skeeter70]

Five years ago when I had my Lasik surgery, I got a chemical burn in my right eye during the healing process. I used steroid drops and was good for five years. However, I never quite felt like that right eye was perfect. I felt minor imperfections that I could deal with.

I July of 2009, that is when it all went South. The right eye had excruciating burning in the same way it did when I had the chemical burn. I was taking decongestants and I was exposed to a lot of campfire smoke. I wasn't using any drops either. This may have been what sent me over the edge. I began going to doctors at this point.

Optometrist #1 said I had dry eye and I started using OTC drops with no relief.

Otometrist#2 said he dry eye and a little speck of something in my eye where I was feeling so much pain. He gave me lotemax which helped some.

General Practitioner did blood work looking for conditions that might cause dry. She put me on antidepressants because I was having difficulty dealing with the pain. I lost about 15 pounds in 3 weeks. I guess my nerves. It was a horrible time in my life. My blood work showed nothing.

Opthamologist #1 said that I had dry eye. He asked to look at my driver's license pic and looked at me and decided that I had a thyroid disease based on how I looked in my pic. I told him that my thyroid test turned our fine. I explained that my nerves were shot and that I had been really sick to my stomach with all of this. I ended up having to run to the restroom with sickness at this time and when I came back, he pretty much told me that I had larger problems than just my eyes (in reference to my anxiety). He told me to get myself together before I came back. I felt like a beat dog. I did not go back to him.

Opthamologist #2 said that I had a corneal erosion. She gave me FML Forte and I improved. At my last visit, I was not really satisfied with my condition, but she told me it just might take time to heal, so I went home and used Lacrilube ointment at night and OTC drops during the day. At six months, I thought that I was getting better. I was good for two months and then it started again.

The worst burning is in that one particular spot in my right eye, but I do feel other burning sensation in both eyes.

I returned to Optha. #2. and she told me I could either live with a corneal erosion or try something that is not FDA appoved and that was putting breastmilk in my eye. She warned my of the risks. I found a woman that I work with and she help me. I was desperate. My eye did feel better, but began to feel very dry and the burning returned. I called the optha. and asked if I could come back in for a dry eye test. They told me just to wait.

Lastly, I found a corneal specialist in Louisville, KY about 2.5 hours away who really helped a friend of mine. He was the first one to finally conduct a dry eye test on me. He did not say that he saw an erosion. Of course, my bad eye felt good on this particular day. He actually ran the test of my left (good) eye and found the dryness. I go back to him in two weeks, perhaps I should ask him to test the bad eye too. Now, I am on restasis. I really hope to get some relief.

Do others deal with just one area of their eye that drives them crazy? I could handle this condition better if it were not for that one burning spot on my right eye. Thanks for reading. Any insight is appreciated. Sorry so much written.

[Rebecca Petris]

If that's Gary Foulks then you're in good hands. Just as a general tip for these appointments though, if you didn't ask about erosions or describe it in detail, there may have been nothing to see (erosions heal very quickly - they are an episodic thing not a condition readily apparent on examination). So if you want more info make sure to ask lots of questions about it at the next exam.

LASIK + chemical burn......jeepers. Either of those can be bad enough on its own. I'm amazed you had 5 good years. What you said about the decongestant and the smoke makes sense to me. You'll find many people here date their dry eye symptoms to an environmental or drug trigger.

There are several people here with a painful spot on the cornea.

[Lucy]

Skeeter, until you get your problems solved, you can use Muro ointment to help with corneal erosions. I've used this for years. I had Lasik 10 years ago and had lots of erosions along the way. Sometimes you just need something NOW to help.

Muro ointment (not the drops) can be bought at most pharmacies although you might have to ask the pharmacist. Sometimes they keep it behind the counter. Although not ideal, my doc told me I could use Muro "forever." As long as my erosions aren't frequent and really bad, I feel better having that little tube around. Best, Lucy

[skeeter70]

Rebecca and Lucy, thank you for your prompt and helpful responses. I only know one other person who has DES, and I hate to constantly ask her questions, so this forum is wonderful for me. Yes, I am seeing Dr. Foulks and he worked wonders for my friend who was in much worse shape than me. I am trying to use that as a positive for my mental state. I will discuss the erosions with Dr. Foulks at my next visit. Lucy, you mentioned using Muro, and I will certainly check on this. You also said until my problems is solved. Do most people find relief with this? I fear that I may live with this torment. I am trying to be optimistic, but I having been dealing with this for about a year now. On the other hand, I am just starting treatment with Dr. Foulks, so that is a positive. Have you two found relief with your problems so that it does not consume your life? That is what I hope that we all find here at this site. My friend who referred me to Dr. Foulks was on the verge of going blind and was in horrible pain for about six months. She lives her life without this condition controlling her life. She inspires me. I wish she would tell her story on here to help others. I may mention that to her. Again, thanks for your responses.

[Lucy]

Skeeter, listen to Dr. Foulkes. Ask about the Muro 128 ointment. I am saying this will help you at times you cannot visit the dr and wake up in the middle of the night with an erosion. If you're traveling on business and you can't get to a dr. I don't use it all that often, but was told I can use it "forever." That should be discussed with your dr. It doesn't mean my doc meant every night FOREVER. I can use other things I so choose and do.

But, when you're caught with an erosion and need help healing it..Muro will not make you blind. It is expensive, but lasts a long time. Lucy

[Rebecca Petris]

In terms of the HOPE question, I think it may be helpful to break this down into a few constituent pieces:

1) Dry eye. This tends to be chronic (depending what kind you have - aqueous deficient probably less likely to improve than some other types). Most people ultimately get the most limiting symptoms under good control. Some people do much better than that.

2) Recurrent erosions (if you have that). These tend to occur in an escalating cycle until they are brought under proper control - then they can often be made to almost disappear. You will find many stories here of people who with relatively minor preventive steps no longer suffer from erosions.

3) Anxiety and depression from a dry eye crisis... or however you describe it, the stage where your eyes are running your life and you wonder whether you'll ever be able to experience life like a normal person again. This does NOT last forever. NOT NOT NOT. It is an emotional crisis that most people who have been through a severe dry eye crisis have experienced in some degree or another, from "just" down and anxious to overtly suicidal, and from a period of months to (for some few) years. But it does not last. You WILL come out the other side. Chances are, your eyes will be a lot better within a year as you progressively learn more and get more appropriate treatments. But even irrespective of that, physiologically and psychologically there is a shift at some stage of the process where it's just not so all-consuming anymore.

When you're in the middle of it, you just have to keep reminding yourself that this is not forever, you will not feel like this forever. Tape a note on the mirror in the bathroom to remind yourself! It's so important. Over the years I have had quite a lot of people who called me weekly just to be reminded of that until their crisis was over. Whatever it takes! You'll get there.

It would be great if your friend would write up her story for the board!! Those encouraging successes play a huge role in lifting people up when they're in a hard place.

[liz56]

Hi Skeeter70.

You are getting great advice from Rebecca and Lucy. I'm so glad to know that you are seeing Dr. Foulks. He is a caring person, and the corneal specialist who finally got me on the track to healing was a student of his (Dr. Francis Mah).

This part of one of your posts stood out to me: "The worst burning is in that one particular spot in my right eye, but I do feel other burning sensation in both eyes."

You may want to ask Dr. Foulks if you have EBMD (epithelial basement membrane dystrophy, and it goes by several other names). It results in RCEs "usually in the fourth decade of life," I read, and it started promptly for me when I turned 40, right in a spot where I had an injury when I was a teenager. People with this dystrophy are usually discouraged from LASIK, but it is so hard for doctors to detect (even my first corneal specialist, when he diagnosed it in my left eye failed to see that I had it in my right eye, too) that they pass people through to the surgery, thinking that everything is fine.

It is a long process of recovery, but you can manage it. I have not had an erosion in over three years, but I have a lot of new, annoying habits and am very picky about where and when I sleep these days. So, it did change my life.

Best wishes, and I'm glad you found this place. Rebecca, Lucy, and many others here turned things around for me, and I know they will do the same for you.

--Liz