This Is So Frustrating

[Newandconfused]

Have been to 3 eye doctors: My symptoms are constant cycle of left eye filling with tears in left lower corner followed by feeling of itch and dry

1. Diagnosis: Infection - Prescribes strong antibiotic drop

2. Diagnosis: Possible MGD with mild bleph, possible occular roscea - Use warm compresses and clean lids, return in one month

3. Diagnosis: Dry eye with very mild bleph - Prescribes lots of meds including restasis, steroid, drops, ointment. No explanation of cause or testing to determine. Says restasis is a very strong med. and doesn't work for all types

I am more confused and frustrated. How can there be 3 very different opinions. The suggestion of so many meds that might not work without testing for cause makes no sense

My own perspective is that there is a small spot on the lower lid of my left eye with feels "puffy" and blocked

I have complicated my situation by searching the Internet for causes and have created more fear and uncertainty. Lots of very frightening medical conditions are listed

A doctor friend, not an opthamologist, who is also a dry eye patient suggested the most likely cause is lots of computer use

My wife is getting tired of my complaints. This isn't much fun

I think I will buy Dr Latkany's book and consider an appointment in New York

[beachblanketbingo]

hello

I can sympathize with you - my wife never wants to hear any complaints - if I tell her about dry eye, mouth - she says get over it

[Gretchen]

There really is no reliable "dry eye" test. It sounds like 2 of your doctors diagnosed you with bleph and MGD/evaporative dry eye. Dr L will likely tell you the same. You can start with scrubs and warm compresses but most need something beyond this, like doxy or restasis. Not sure what the concern is with Restasis - it will either work or not. If you're lucky it will be the former. Unlike steroids, Restasis is relatively safe for long term use.

Gretchen

[Newandconfused]

The concern is the use of a strong immunosuppressant medication which apparently only works in 15% of patients and not at all for some types of dry eye

I thought there were good methods to determine the type of dry eye and then it will be easier to consider the efficcacy of retasis. Perhaps I am incorrect. Further what is wrong with starting with otc drops and ointments

[Gretchen]

N&C -

Of course you should start with PF artificial tears, warm compresses and massages, lid scrubs and big doses of fish oil (get a reputable brand to avoid purity issues - I use Nordic Naturals triglyceride) immediately.

However, I believe that your doctor mentioned that you have severe dry eye in one of your eyes? Did he say why he thought this? Was it because you had a low Schirmer's (I doubt) or because he saw some corneal and conjunctival staining (my bet would be this). If it is the latter, he probably moved to the more aggressive options because he saw what he would call "staining" which really means that there are areas on your cornea where the epithelium is exposed and/or abraded. That's not good.

As for tests, there are Schirmer's test for tear adequacy. 10+ is normal. These are highly variable and really only used to determine if someone has tears at all. If you are consistently getting a 0-2, then you are probably not producing enough tears and your eye doc may ask you some other questions to determine if a referral to a rheum is in order. There is also the TBUT (tear break-up time) which can point to lipid deficiency. These are also highly variable and can be misleading. Usually doctors will look at you MGs under the slit lamp to see if they are blocked. If they are, he will probably diagnose you with MGD and tell you to maybe go see a derm to get help for undiagnosed and untreated Rosacea. Then there is the OSDI (ocular surface disease index) It is a questionnaire that gauges how miserable you are.

As for what type of dry eye Restasis works best for? Restasis suppresses the expression of cytokines on the ocular surface. The can help to reduce inflammation of the lacrimal gland as well as the meibomian gland. It disrupts the inflammatory cascade on the eye surface that can help the tear film mechanisms to work better. The 15% is from the initial trial and the measures that they have to use for FDA approval are very stringent. However, since the drug has been in use clinically, they see more around a 30% success rate. And I think even better now that they can get patients to stay compliant with the steroid phase-in approach.

I think that someone recommended that you read Dr Latkany's book that is available here on the DEZ shop. It will help you a lot to get your questions together for when you go see your doctor. Because Doctors are often not going to offer expansive ruminations on your condition unprompted. They see something, give you a curt reason for the "why" that you seek and prescribe you what he thinks appropriate for what he has just observed. He is not going to verbalize his whole thought process, unfortunately, so you really have to push to get the answers that you want.

Regards,
Gretchen

[msienkiewicz]

Gretchen,

Just out of curiosity... How much fish oil do you take? I bought Carlson's liquid and take one tablespoon. Is that enough or should I take more?

Melissa

[Gretchen]

I take 4 TBS of Nordic Naturals Fish Oil

[Newandconfused]

Gretchen And All:

I first want to thank Gretchen for the very informative post. I read it immediately after returning from a follow up appointment with eye doc #2 and he is a very experienced corneal and outer eye specialist

NOTE: It was doc #3 who diagnosed "very dry eye" and prescribed the restasis and said he thought plug surgery would be needed. This was without a Schirmer's test.

Today, doc #2 performed a Schirmer's test and said my results were "normal" in both eyes. When I inquired he told me that this means both eyes are producing sufficient tears and he would not call them "dry eye"

He diagnosed mild blepharitis with MGD. He wants me more compliant with warm compresses and scrubs. He thinks it is still possible to clear the blocked glands and return normal tear flow and cycle. He says I should supplement with PF AT for the next month and continue with the warm compresses. He didn't want to use restasis. He says if this doesn't result in significant improvement he might consider probing the lacriminal (sp?) glands.

I wanted to know the cause, however, other than to say the MG is blocked he didn't really offer an explanation. I attemted to explain that I was concerned that it might represent a bigger medical problem and he didn't react. Perhaps that question was fueled by my own anxiety and Internet research

I am trying to understand what I learned. I believe that I am producing sufficient tears, however, the proper cycle is being impacted by the clogged MG. This causes my body to produce "extra tears" which cause the feeling of fluid in the eye.

I think it is reasonable to try this approach for another month. The other aspects of my eye exam were all normal. There remains my question as to cause and whether it is a symptom of concern

This forum is a wealth of information and perhaps others here will let me know if I am on the right track

Tom

[Gretchen]

N&C -

So glad that you got a good consult. MGD sounds right. As for "tearing", one of the function of the MGs is to provide a thin lipid barrier on the lid margin that prevents tear overflow. This may account for the epiphora in your one eye.

I have MGD due to underlying ocular rosacea. Your goal with your treatment is to get your meibomian glands unblocked and get your oil flowing. Begin doing the warm compresses and qtip extraction. Supplement with artificial tears (PF free off course!). Start taking fish oil - I take 4 TBS of liquid Nordic Naturals every day (get a kids dropper and squirt it in the back of your mouth while holding your nose - chase with a shot of cold club soda to cut the oiliness - as you probably imagine it does not taste good). And if you use the computer a lot, I would recommend a pair of Panoptx or Wiley moisture chamber glasses for while you are on the computer or in windy conditions.

As for the "why" you have meibomitis, the most common cause is rosacea. Sometimes ocular rosacea presents before facial rosacea. And sometimes, you men just don't realize that you are getting a little rosy because you don't study yourself in the mirror to the extent that women do. Otherwise, past Accutane use can lead to MGD. There are some that think that allergies can lead to MGD. I am not sure about that, but do know that those of us with MGD seem to be more susceptible to allergies. But it is a chicken and egg issue. Otherwise, sometimes you can just get MGD.

I am not a fan of plugs for those of us with MGD. If your tears are sufficient, there is no need. And if you have MGD, you are going to have inflammation and you don't want plugs keeping that inflammation on the ocular surface. Also MGD folks have problems with their eyelids, best not to put foreign objects where the skin/tissue is acting up. I would just say no.

I have had some success with the "easy" stuff that I outline above, but I really did not get significant relief until I went on low dose oral doxy. I am now also on Restasis and I find that it is really helping. I am having a lot of good days these days. But start slow and see where it takes you.

Good luck.
Gretchen

[Newandconfused]

Gretchen and All:

Your response has again provided great information

I think I have an accurate diagnosis from a very good eye doctor. I will comply with his treatment suggestions and see what happens.

The real problem is the fear. My eye seems to tear all day and the symptoms are causing so much distress. When you read on the Internet there are many scary things listed as possible causes. This makes for a tough scenario in my head. I don't know if others have experienced these feelings. Not having much fun right now


Tom

[msienkiewicz]

Tom,

I believe my symptoms are very similar to yours and Gretchens.
I too have had to work very hard with the help of a wonderful counselor to overcome my fears as well.

This dry eye business can get the best of us at times.

Stay strong,
Melissa

[Lucy]

I have complicated my situation by searching the Internet for causes and have created more fear and uncertainty. Lots of very frightening medical conditions are listed

Hi Tom,
Fear is indeed one of the biggest obstacles to get over with the dry eye thing. I've been on dry eye/lasik boards for almost 10 years now and some people become so fearful, they really make things worse. By going on the internet (even DEZ) all the time, you are feeding your fears. If you feel you're spending too much time on this, make yourself stay off the internet for awhile. I can guarantee you no one will discover a cure in those few days.

Try and do something to take your mind off things. This varies from person to person. When I was at my worst, I could go see a movie and get involved in the story. I had to wear my goggles and use drops, but it kept me away from the internet for awhile. Anything you like to do, such as exercise will automatically force you to get your mind elsewhere for awhile.

I'm like Melissa and I love icepacks for my eyes. It works very well, but you should check with your doctor. This is likely to take time, trial and error, so be patient with yourself. Lucy

[Gretchen]

Tom -

I am going to second what Lucy says about the internet even though I am not very good at taking my advice! Researching on the internet can net you a lot of information but can also really freak you out. Especially if you are worried about having something systemic. From what you have described, it sounds like you have MGD and this is usually caused by rosacea which while a drag, is nothing like RA, Sjogren's or other autoimmune disorders that you have probably read about.


And stay off WrongDiagnosis.com! The information there is very misleading and alarming.

Have a good weekend and try not to worry.
Gretchen

[catlover]

Gretchen and All:

Your response has again provided great information

I think I have an accurate diagnosis from a very good eye doctor. I will comply with his treatment suggestions and see what happens.

The real problem is the fear. My eye seems to tear all day and the symptoms are causing so much distress. When you read on the Internet there are many scary things listed as possible causes. This makes for a tough scenario in my head. I don't know if others have experienced these feelings. Not having much fun right now


Tom

Tom, I've had a "teary eye" for about 2 months now. It is amazing to me that I judge if I've had a good or bad day by how much my eye tears. I have MGD, blepharitis, which stem from rosacea. Even though I've had rosacea for about 5-6 years, it wasn't until a couple of months ago that it affected my eyes. And even though my eye dr. said I have MGD in both eyes, only my right eye waters. I've been taking Oracea (40 mg doxy), warm compresses at least twice a day, lid scrubs, eating/drinking things specifically for this, and taking fish oil. Hang in there; You're not alone!!!!!!!!!

Gretchen, did you notice improvement when you started on the doxy. I am not on Restasis and other than that, it sounds like we are doing the same treatment.