Hello- I've been following along here for a few weeks. I've begun to feel desperate and need some hope, inspiration and advice. I'm relatively new to dry eyes. I am a healthy 35 yr old female who has worn contacts since I was 15 and never had a problem (or so I thought) Mid May of this year I developed pink eye that I believe I contracted from my daughter. It was a particularly bad case in my R eye. I was treated with two kinds of antibiotics as the Polymyxcin (sp?) didn't work and finally the Tobramycin did. After 7 days of treating (and I occasionally gave my good eye the L a drop or two so the infection didn't spread) I was left with unbearably dry eyes. They are the kind that burn during the day and I'm almost unable to open them at night. My regular MD told me to use artificial tears. He didn't tell me what kind so I went out and bought some cheapie stuff with preservatives. I dind't know. They burned my eyes all the more. I sought out an opth who did the rose bengal staining and the tear break-up. He didn't tell me the results but did say that he could definitely see dry eye damage. He told me to use Refresh Endura. That seemed to help for a few days, but the burning continued. 2 wks later I saw him again and this time he put me on Restasis. They burn a bit when I use them but I got used to it. It seemed like about 3 wks into them I started to feel some relief (not a whole lot) I still barely have tears. If I yawn, the slight tear that I do form is very delayed. Also, I have cried a lot over this condition and the amount of tears is far less. I also must tell you that I have seen a dermatologist who ruled out ocular rocasea and a rheaumatologist that ruled out Sjogrens.
I have a good long standing relationship with my optometrist- so I went to him for my usual exam. He spent a lot more quality time with me and did a Schrimer's test. I thing it was 3mm on the R and 5mm on the L. (this was 4 wks into Restasis) I never ever thought I'd be wearing contacts again, but he prescribed the Focus Night&Day for dry eyes. I have an Acuvue in the L because that eye has stygmatism and they do not make the Toric lense in the brand he recommended. Anyway, for the first few days - I was thrilled to be back in contacts. Then, my eyes began to hurt quite badly and even after I would remove them. When removing them they would stick to my eyes. The hot weather here 80's and 90's has not helped. I dry out much more quickly. Everything I have read says that people with dry eyes should not wear contacts. I guess I should consult the opth about that, but I don't get a warm feeling from him that I do with the optom. I feel like this may now be a permanent situation and it depresses me totally. It is sad to think that my tear glands could be shot. I now refer to my life before May 16th and after that awful infection/antibiotics. If any of you have ever heard of Medicamentosa- I think that is the reaction I had- a toxicity to the antibiotics. I am not sure whether I should continue with the Restasis because the burning upon insertion has become more and more. I hate to keep putting drops in my eyes. I 'm just dealing day to day, but this has severely affected my quality of life. I don't mind too much wearing glasses, but the constant discomfort from dryness is intolerable. Oh yah, the opth also told me that I may have Bleph and to do the warm compresses and lid scrubs. I do have oily skin, but I do not have dandruff or any particles in the lash line. Never had a problem before that infection.

I haven't tried the Doxycycline or plugs yet. I wanted to give the Restasis a full try. I'm not too happy and I'm none to happy to hear that there is no cure for dry eye and that some people take Restasis indefinitely. I hate the thought of the future ahead. So far my vision has not been affected with the exception of light sensitivity in the AM. I have to use a gel at night so that my eye lid can roll over my eyeball. This sucks.

Thank you so much for reading my story. Please, I would be happy to hear any input or if you just want to commiserate with me. :rolleyes:

Thank you,
Amy

Hi Amy! Welcome to the boards!

I want to tell you that you are not alone. I totally understand your frustration. I've been battling dry eyes for almost 3 years and every day they feel miserable. Your'e new to this, and I've got a lot of advice. So forgive me for rambling! I'll start by filling you in a little bit on my own story.

I have had so many eye problems associated with my dry eye. Infections, altered vision, corneal ulcers, pain, etc... My doctor and I have been desperate to find something that would work. We tried every possible treatment and drop known to man. I even go down to see a specialist at John's Hopkins' Wilmer Eye Institute in Maryland. With everything that we tried not working, we were thrilled when Restasis came out. WE thought it would be the miracle I am waiting for.

We tried it immediately and quickly found out that I am allergic to Restasis. :(

Now we are waiting impatiently for Diquafosol to be approdved by the FDA.

The only thing that has helped is permanently closing all 4 of my tear ducts with cauterization. Now I have enough tears. But it doesn't matter because I only have the watery layer. I am missing the mucus and oily layers, which are what make the tears stick to the cornea and provide nourishment and lubrication to the surface of the eye. He doesn't even do schirmer tests, because we know that I have enough tears. I just don't have the right kind. For me, I think that is even worse. Because I've got water dripping down my face (since it doesn't stick to my eyeballs, it just runs right out of my eyes) but at the same time my eyes are SEVERELY dry. Schirmer tests don't always tell the whole story. You don't have enough tears, but has your doctor said anything about what your TEAR QUALITY is like? That can be a much harder problem to cure.

Lack of tear quality usually stems from clogged meibomian glands. I don't have the flakiness at the base of my eyelashes, but all of the oil glands (meibomian glands) in my eyelids are clogged. I use hot compresses and Doxycycline to unclog them. Hot compresses and Doxy will ONLY help you if you have Blepharitis or Meibomitis. (the clogged glands) So it is a good idea to ask your doctor about your tear quality. If you have poor tear quality, it is likely that you have one of these conditions.

The major thing I have learned over the last 3 years is that I have to be very pro-active in my care. I love my doctor, but he can't help me if I don't tell him what is bothering me and alert him to new situations. I am lucky that I found a wonderful ophthalmologist who really knows his stuff. He's the most compassionate man I've ever met. He's become not only my doctor, but my friend. I most certainly do get that warm feeling from him. :) Keep searching until you find an ophthalmologist who you trust and feel comfortable with allowing him/her to treat you. An optometrist is good, but most don't know as much as ophthalmologists do about medical conditions of the eye, such as dryness. You can always contact your local teaching hospital or medical school and speak with the department of ophthalmology. Find out who is their very best corneal specialist and/or dry eye specialist and see him. I'm really good at doing internet searches for doctors. If you tell me where you live I might be able to help you find someone.

But most importantly, be pro-active. I can't emphasize it enough. You are your own best advocate.

I pay very very close attention to my eyes, and if I notice the slightest change (redness, green/yellow crust, swelling, pain, vision changes, etc....) I know it means a change in my condition, and I am in the doctor's office very quickly. The other most important thing I can tell you is that not one product works for everybody. Try all of the artificial tears out there (only preservative free) until you find the one that makes your eyes feel the most comfortable. Personally, I prefer Bion Tears. Some people love Thera Tears. I hated it. You also might like to use an ointment when you go to sleep, to help with nighttime dryness. I use Hypo Tears Ointment, preservative free. But there are lots of others out there. You can also use something called Thera Tears Nutrition. It is an oral supplement that contains flaxseed oil and other essential nutrients for your tear composition.

For relief when it gets really bad, I use cold compresses. Sometimes I live on them for days. They enable me to be able to open my eyes, and stop the itching and burning.

Also, be very sanitary. Wash your hands every 5 minutes if you have to! If your eyes are dry, they are more prone to infection.

You defintely should not be wearing contacts if your eyes are dry. You are putting yourself at risk for infection and corneal abrasions. The reason for this is that contact lenses float in your tears. If you have no tears for them to float in, they are going to stick to your eyeballs, move around in your eyes, fall out, or even scratch your corneas. I tried contacts once before I knew I had dry eyes, and I couldn't tolerate them. They always fell out.

I hope you have gotten something useful out of my ramblings. If you have any other questions about dry eyes, I am your woman. Since I've suffered so much with this, I have learned everything I can about it. I am very happy to share my knowledge. Ask away.

Good luck with everything,
Elyse

P.S. I learned this lesson the hard way: NEVER, NEVER, NEVER, ALLOW ANYBODY BUT AN EYE DOCTOR TO TREAT YOUR EYE PROBLEMS. DON'T GO TO A "REGULAR DOCTOR" TO TREAT YOUR EYES. THEY KNOW NOTHING! (You wouldn't go to an eye doctor for strep throat, would you?)

Thank you Elsyse for your response. I really appreciate it. I am feeling so low and it helps to remember that there are others out there in similar boats if not worse. I read on WebMD's Dr Lloyd's column (the opth) that once the lacrimal glands have been damaged either by inflammation, medications, trauma, radiation etc, that their function does not come back. That hovers like a fog over my conscience making me depressed that I did this to myself with that one bad infection. Oh, and the fact that I treated the opposite eye (the one without the inf) to be proactive I thought, just kills me. I am guilty for doing this to myself and now I probably am doomed to a lifelong consequence. grrrrr.
It is too bad Restasis did not work for you. How did you know you were allergic to it? Have you tried Refresh Endura as well? I guess it has similar make-up. I'm not sure whether I should stay on the Restasis. It burns. I did make an appt with a new opth for next week. Of course, I'll have to go through all my history again, but I'm hoping for a better "connection" this time around. As much as I love my optom. personality- I don't quite understand his thinking in returning me to contacts. Kind of contradictory, I think.
Can you tell me about Diquefosol?
I will definitely ask about my tear quality and quantity.

Thanks again, I will write again later when time affords it.

Amy

you know what is weird...i think i was prescribed that medicine for my eyes, and that's when I began having probs with dry eyes..is it a steroid eye drop?

Nope, it was straight up Tobramycin antibiotic drops. I had a really bad pink eye that cultured out strep pneumonie. I wish now, however, that I had been given something else. I had inquired about a systemic (oral) antibiotic, but oh no........couldn't have that. Strep pneumonie can be deadly if its in your lungs so I wanted to be sure that I wasn't harboring it anywhere else.

Why and when did you develop problems and are they still plaguing you and to what degree? Hope you don't mind all my questions.

Amy

When I had dry eyes the Dr. told me to use pm fresh at night and thera tears 3x's a day. This helped me greatly. The thera tears are one of the best eye drops in my opinion. They took 20 years of research to make these the closest eye drops that are very similar to your own natural tears. These 2 products are available over the counter so you don't need a perscription. I hope this helps someone.

Different people have different reactions to medicines. The Tobramycin might have been great for somebody else, but for you it may have caused more problems. The thing about Tobramycin is that it is a good antibiotic for eye infections, but it's not used too much anymore because there are so many other, newer ones out there. I have been on it twice. Once it was prescribed by my General Practicioner when I had my first case of pink eye, and did not have an ophthalmologist available to go to. The infection went away, but I was still having a lot of problems. It is hard to differentiate between what is an infection and what is an allergy. Still not feeling well, I went back to my GP. He prescribed something called Neomycin ointment. He said he wasn't sure if I was still infected or not, but thought that would take care of any residual bacteria. But I got SOOOOOOO much worse on it. I immediately got out the phone book and started calling every ophthalmology office in town until I got somebody who could see me that day. I went to the office not even knowing the name of the doctor I would be seeing, and thinking that I would only go to this guy once, and then when my family's ophthalmologist got back from her vacation, I would go back to her. Well, within 5 minutes of having met him, this doctor made such an impression on me with his knowledge and expertise and caring, that I knew I would never go to anybody else as long as I lived. He told me that my eyes were no longer infected, I was having a very bad allergic reaction to the Neomycin ointment. He gave me allergy drops and tear drops, and also told me how severely dry my eyes were (are). I told him that a few months ago I had tried contact lenses, but they kept falling out of my eyes. He told me that my eyes are too dry to wear contacts, and wanted to know what quack prescribed them for me. It was actually three doctors that allowed me to wear them. My original ophthalmologist, and two optometrists who measured my eyes and fitted me. And nobody ever said to me "hey, your eyes are dry, don't get contacts." :rolleyes:

Anyway, after trying plugs several times and having no luck (they kept irritating me and falling out) I ran into much more severe problems. December 24, 2001 I developed a severe ulcer in my right eye from the dryness. My eyes were so dry that just by blinking, I created a sore and rubbed off a section of the first layer of my cornea. Conventional antibiotics didn't even touch the infection that I had. I had to get fortified Tobraymcin drops and Vancomycin drops. Vancomycin is the antibiotic that they give in the hospital to people with Pneumonia and other deadly infections. My doctor called and called and called until he found a pharmacy that could make it into an eyedrop. I was on those drops for over a month, around the clock. Then it took another month of regular anti-biotic drops. Then, about two weeks after stopping the anti-biotics, we were in the process of cauterizing my tear ducts. But I got a corneal abrasion anyway. Same eye, just a different spot. Luckily I was able to use regular antibiotics for that. Soon after, all 4 of my tear ducts were permanently closed by cauterization. That helped the problem of lack of tears immensely. But it won't do anything for my tear quality. There is help for people with a lack of tears. The Restasis certainly could help you.

I even tried a form of Cyclosporine befor Restasis was approved. I was allergic to that too. But since Restasis was a different compound of cyclosporine, we thought I should try it. I am allergic to that too. My whole face gets red and my eyelids swell. My eyes itch and burn and look awful. Diquafosol is a drop that is supposed to stimulate the production of the oily and fatty layers of tears, which would tackle the problem of tear quality. It is still in the trial stages.

Have you tried plugs?

If you are not allergic to the Restasis, you should at least give it the full 6 months. It does help some people.

It is probably true that once the lacrimal glands are damaged they don't produce tears like they should, but don't let that WebMD doctor scare you. It doesn't mean that there is no help, or that your eyes will never get better.

Have you been tested for allergies? A lot of people have seasonal allergies that can make their eyes dry. It's a big contributing factor for me. I also have auto-immune problems, which can make your eyes dry as well.

I hope that you love the new ophthalmologist and that he can help you. Let me know how it goes. :)

Elyse

Oh, and I use Refresh Endura as well. :) But we found that too much of it bothered my eyes, so I only use it 2 or 3 times a day, as opposed to the Bion Tears which I use about 6 times that much!

Thanks to all who have added some support.

Thank you especially, Elyse.
For someone who doesn't have very good eyes, you seem to spend a lot of time at the computer. :)
No, I don't have plugs, but I may be exploring them.
I was wondering about you....do you wear glasses now? I guess you must since you used to wear contacts. I am wondering if there is a special kind of glasses out there for dry eyes. Maybe some kind of a wrap around kind/and or sunglasses that would help to alleviate wind and sun etc. I am also looking into Transitions just for ease in going from regular glasses into automatic sunglasses mode. (obviously those wouldn't be wind resistant though) I have worn contacts for 20 yrs- so the thought of possibly no more contacts for the rest of my life is making me re-look into the best prospects for glasses. Some people on here are so dismayed and upset about being told that they should not wear contacts again. And that is fine....that it how they feel. However, I would be happy as a clam if I could just find comfort. Glasses are fine, bring them on!! :D That is most important to me. Looks ain't everything in life :cool:

You mentioned in your post something about allergies or perhaps being tested. My question to you is this..........(since you are so knowledgable) Can a person develop an eye allergy (mid life) that causes dryness, gritty, red eyes that DO NOT tear?? That is the kicker that I can't figure out. Like you said that your eyes tear a lot, but that the quality (lacking the mucus and oil) still causes dry eye. I know that that can be true. But doesn't an allergy mean that there is some type of histamine reaction that causes watery weepy eyes? That is the only kind of allergy I knew about. Maybe there are others. I have not asked a Dr about allergy. I will at my appt this week. I have heard that Patanol is good for allergies. I have never had an allergy of any kind, to a med or to the environment. I have been suffering since mid May though, but I attributed it to the Poymixcin and Tobramycin that I was on. Maybe I'll never figure it out. :confused:

Thank you for writing about your eye history and woes. I sympathize wholeheartedly.

Amy

Yeah, I tend to write long answers, but if my response is going to be as long as some of the ones I've posted here, I do it in installments! I copy and paste what I've typed into microsoft word and come back to it at a later time. Plus, I type very fast. It usually only takes me about 5 minutes to post one of these long responses. I haven't been on the computer at all for the last 2 days because I am having my own little crisis at the moment. Both eyes have been feeling exceptionally bad the past few days. I may have been having an allergic reaction to this preservative free, all natural eye mist that I tried. So I've had to use a steroid ointment to help with that. And when I went to the eye doctor today, he discovered the reason that my left eye, in particular has been so painful. I've got 7 or 8 micro-abrasions on the surface of my cornea. :( So I'm using anti-biotic drops and cold compresses. And the best advice that my doctor could give me to keep my eye(s) comfortable is to "lubricate, lubricate, lubricate!" I'll go back in a week for a follow up to make sure it's all healed.

Staring at the computer for long periods of time is definitely not recommended for people with dry eyes! I've also got a flat screen monitor which is supposed to reduce glare and eye strain.


In response to your question, you can definitely develop an eye allergy later on in life. I never had eye problems as a kid. Maybe once in a blue moon I would get a little hayfever and have to use an allergy drop for a few days. But it was never anything more than that. Most people think of watery eyes when they think of eye allergies, but I have had extensive conversations with my doctor on this very topic! He says that allergies can cause dryness because histamines can cause inflammation which can make your lacrimal glands become inflamed. Then you get more allergens in your eyes (dust, etc...) and since you have no tears to wash them out, they just sit there and cause more of an allergic reaction which causes less tears to be produced. That's how I understand it, anyway.

To respond to your other question, yes I wear glasses now. I couldn't tolerate the contact lenses. I tried them for about 2 weeks and could not take it anymore. I have the transitions lenses in my glasses. I got them when I started having a problem with bright sunlight. They help me a lot.

Well, I'm off to use another cold compress. Feel good!

Elyse

Sorry to hear about your micro abrasions. I hope the cold compresses and the antibiotics help that.
I appreciate your responses.
I saw a new opth yesterday and was a bit disappointed in that I asked when I scheduled for an extended appt time since I had a lot of notes and history to review. I had seen her partner before, but was looking for another opinion and a more pleasing bedside manner. I got neither. A 10 minute (or less) appt on her on-call day. It was very rushed, but she did stain my eyes and tell me that the dryness appeared more mild, however, that did not mesh with how I've been feeling. I'm dry as a bone. My lids feel like rubber with sandpaper in them. She told me she understood my stopping Restasis at 7 wks. She said in her practice, it is 50/50 or even less for improvement with Restasis. She put me on Doxy 100mg twice a day for 1 month. That seems like a very short time, but she wants to re-evaluate then. I'm not tickled pink to be on antibiotics because I really doubt I have a meiobian problem. I started to cry a little bit in her office (this has been an emotional struggle for me) so she could see my lacrimal glands work on reflex....although diminished output a little) but the problem seems to be with my accessory lacrimal glands. The ones that provide continuous moisture. Elyse, do you think the plugs will help with that? I am having them inserted next week. I'm so worried that this is permanent (the dryness prob), but the Drs never can say either way. If you have had plugs can you explain the procedure to me? I'm having the lower ones. I bet they will be uncomfortable. Will they stick out like little spikes?? I've heard that infection is a possibility. I would hate for that to happen. Please advise if you would.

So that is all. I'm to keep up the lubes. She recommends Refresh Endura as well as the other Refresh brands. She probably gets a kick-back from Allergan. Haha :rolleyes: Then, get the plugs and try the Doxy. I also made her aware of a supplement I am trying called Bio Tears which has all the omega 3 and 6 and lactoferrin stuff in it. Could be a gimmick, but it's worth a try (Geeez- when I think of the amount of money I spend now on drops, copays, ointments, supplements.....ugh)

Hope you are feeling better. Thanks for listening to my problems.

Amy

Inserting the plugs is a very very simple, painless procedure. Your doctor really should have told you about it. It's amazing how some doctors just have no bedside manner, and lack compassion. I realize what a true gem my own doctor is, and how lucky I am to have him. And to think, that I only found him by looking in the yellow pages! So much for relying on recommendations!

Anyway, I have had plugs in all 4 of my ducts. The only problems that I found with them were that they continually fell out, because the longer they are in, the more your skin stretches around them, and the looser the hold on them becomes. My doctor had to keep trying larger and larger sizes until they eventually wouldn't stay in anymore. He also told me that sometimes a miniscule amount of tears can seep out around the edges, but I did not have the smart plugs. Smart plugs are new and were not around when I needed plugs. They are different from silicone plugs because isntead of sitting on the surface of the tear duct near your eye, they go all the way down in your duct and mold to fit your body. The dissolve in 3-4 months and have to be replaced. They're also harder to remove than regular silicone plugs because they are all the way down.

I'm guessing that all plugs are inserted in the same way. The doctor numbs your eye with drops and takes a small, tweezer-like tool to push them into your tear duct. You won't feel anything except for some pushing. If you have the regular silicone plugs and not the smart plugs, you will feel them for the next few days, every time you look to the right or left. But that will go away once you get used to having them in your eyes. They can be removed by the doctor (just by squeezing the tear duct) if it becomes a problem for you. I don't know how the smart plugs feel. They won't stick out like spikes. If you have anything but the smart plugs, you'll be able to see them because they'll be clear and shiny, but they won't stick out. They'll be flat. Infection is a very very rare possibility. With regular silicone plugs, they could just be removed and the infectiob treated. I don't know what they do with the smart plugs, because they are harder to get out.

Yes, I think that the plugs can help with any lack of water, even if it is caused by the accessory lacrimal glands. The idea is just to keep whatever tears your eyes do produce in your eyes! If you're lucky, you might even have a problem with some overflow of tears down your cheeks immediately after you get the plugs. Your eyes have to adjust to not having the tear ducts.

And don't feel bad about being upset about this situation. I have cried over it many times. (but actually, being that we only produce reflex tears when crying, my emotional tears have actually washed out the "good" tears with the oil and mucus, and made my eyes even drier!) I have cried in front of my doctor and cried on the phone to him. But he can handle it. :) He always knows how to make me feel better. He basically just tells me "don't worry, we are in this together, I'm going to take care of you." It's so important to have a doctor that you feel comfortable talking to. If you felt like your doctor was annoyed that you were crying, or only using your emotional tears as a measure of your dryness, then this is not the right doctor. You need to have somebody compassionate, who will talk to you. If you're going to be emotional about it (who wouldn't be?) you need to have a doctor who is understanding and able to deal with that.

I hate feeling rushed when I am at the doctor's office. I have gone through a lot of doctors before I found the bunch that I have now. Sometimes I have a long wait in the eye doctor's office. But I never mind, because I know that he is just giving the other patients the same standard of care that he gives to me. With any doctor, if I have got 20 questions to ask them, I am not leaving until they answer them to my satisfaction. My primary care doctor has got a great sign posted in his waiting room. "If you leave here with unanswered questions, you have done us both a disservice." I say ask away! If they turn to walk out and you still have more questions or concerns, you've got to tell them "hey, I'm not done yet. Get back here!" (If they're getting paid for this visit, they ain't leavin until I'm done!"

I know all about the expenses of this situation! I happen to be luckier than most because my uncle is a pharmacist and owns his own small pharmacy. Every couple of weeks I get a case of about 10 boxes of tears and all the ointments and supplements that I need, for wholesale cost. And my doctor is such a great guy, he refuses to charge me copayments. Even when I didn't have health insurance, he would see me as much as I needed and refuse to charge me for the visit. So, I buy him presents!

But the copayments for prescription drugs certainly add up! (Walgreens isn't as nice as my uncle, and he's too far away to get my prescriptions from!) It's gotten up to over $200 a month on eyedrops and copays for prescriptions. I swear, why does it cost money to be sick?

Well, I hope you are feeling better. My eye is much better today with the anti-biotics.

Hope to hear from you soon,
Elyse

Hello again!
I was out of town for a few days. My eyes didn't feel so bad during the day (mild burning, I guess you would say) but the nights are the worst. From the time I start washing my face to get ready for bed- they just seem to feel bone dry- like my lids are rubber against an ocular surface with no moisture. It's awful. I force cry sometimes just for temp. relief. I had to use ointment several times during the night. I also think the petrol. jelly/mineral oil stuff irritates my eye somewhat. Are there other nighttime ointments out there with different ingredients? I used to try Refresh Celluvisc at night and although it is refreshing at instillation, later it drys to an uncomfortable crust on my eyes. I hate that.

Anyway, Elyse, thank you for your response. I wish I were lucky enough to pull an opth MD name out of a hat like you did and get so lucky. (out of a phone book, that is) I took your email to heart and since I didn't feel exceptional chemistry with the new opth last week, I have decided to seek out one more. This one is from a new office. The two I had previously seen worked as partners. I did not care for the "cattle call" patient rotation. I am supposed to explain all aspects of my dry eye syndrome in a 10 minute appt?????? You've got to be kidding. No wonder no one wants to administer a Schrimer's test- that takes 5 minutes in itself??!!
I have also decided to postpone the plugs until after I see what this new Dr says. He is a Lasiks surgeon which is probably most of his practice. Not sure if that is good or bad, but I know he deals with dry eyes a lot. However, I DO KNOW that my type is considerably different. (not surgically induced) This will be my 3rd opinion (actually 4th if you count my optom) I took the Doxy 100mg for 1 wk and felt like it was irritating my stomach at night. Also, not sure, but it seemed to make me have a dry mouth as well. Yuck! I guess I'm not very good with RX patient compliance. I quit the Restasis at about 6 wks as well. Wonder what will happen if I don't use anything (except tears) and my oral eye suppliment? I have been on that 1 1/2 wks and the manufacturer says that most people notice improvement in about the 3rd week- so I am keeping my fingers crossed......like a fool probably. But I'm desperate.
I am compiling questions for the appt this Thus. I wonder why nobody has mentioned a steroid ointment or drop?? The optom said that even Patanol can sort of halt inflamm symptoms (but what if not allergy driven?.... and I doubt that it could be)
Also, before getting plugs, I have more questions. This way, after the three Drs, I can make a decision as to which one to continure care with. If I see any more than that, my insurance (I always need referrals) might be getting suspicious.

Well, that is all from this dry eye camp. I hope yours are stable and all the micro abrasions are healed up. If you get any closer to finding out about the new drug Diquefosol (sp?)- please let us all know. I know you will? Are you back East -maybe New York area? I get that impression. I am in Washington State. It has been 90 degree unusual weather here and I am "drying up."

Later~
Amy

oh man, i depend on restasis every day. 2 drops a day every day.. i used to be on lotemax also but my doctor switched me to just restasis because it is not a steroid. maybe if you used a steroid it upset your eye? a side effect of restasis is dry eyes and feeling like you have something in it (which i had to get over, so i could get rid of my infultrates that i got from a bad bad bad bad case of pink eye) maybe you should talk to your doctor about the side effects if he didn't inform you, hope this helps!!!!!

also, find something fun to do where you don't concentrate on your eye. be busy, trust me. getting your mind off of it is half the problem!

Hi-
I'm confused. Do I understand correctly?? A side effect of Restasis is dry eyes??!! How can it be doing anything positive then? Did you find the Lotemax helped? I have not been on any kind of steroid for the eye ever. I'm just wondering why that road was never taken (or given to me as an option?) How long have you been on Restasis? If it helps you, when did you notice?

Also, I KNOW that my eye problems began with my eye infection. I was taking two drugs. Polymixycin and Tobramycin. The first didn't seem to have effect before switching to Tobra. I wish I had never taken them. For lack of more medical scientific talk, "They totally screwed with my eye glands."
What are infultrates?? and I would be intrigued to hear about your story. Thanks

Amy

I never heard that Restasis could cause dryness. Then what is the point in using it? I tried it too, but had a severe allergic reaction to it. My eyes got extremely red, and my eyelids swelled and turned red. So, no more Restasis for me.

Amy, the reason that nobody has recommended steroids for you is because they are a last resort. I totally understand that you feel like you have tried every option and that you are ready for a last resort. Anybody who has lived with dry eyes for even one day would understand that. But you've got to try everything else first. I had my dryness for at least a year before we experimented with steroids. And while they may help with the symptoms, you've got to be sooooo careful with them. They can cause your intra-ocular pressure to go up (in some people this can happen after just one dose) and this can cause glaucoma or damage to the optic nerve. You have to be followed very carefully by your eye doctor while on them. There are some non-steroidal anti-inflammatory drops, such as Patanol and Elestat (which are really allergy drops but have anti-inflammatory qualities to them as well.) There is also Voltaren. I tried that, and had an even worse reaction to it than I did to the Restasis. I put one drop into one eye and then sat there and POURED tears in by the gallon because it hurt so bad. But not everybody will have the same reaction as me. My doctor says that I am the most unique patient he has ever seen, so chances are that NOBODY will have the same reaction as me! Restasis is also another non-steroidal anti-inflammatory drop that works for some people. But it doesn't work overnight, and that's what we all wish would happen.

For me, there is just such a huge difference after being on ocular steroids for a few days. My ocular surface becomes much less inflamed, and my eyes are less red and not so sensitive and irritated. But because of the harsh side-effects, I can't be on them for more than a few days. So whatever progress I make is short lived. There was a time last year when I was on an extremely strong steroid, dexamethasone, for several months. But eventually my intra-ocular pressure started to go up, so while we were very happy with what it did for my dry eyes, I had to kiss it goodbye forever. I miss it very much, but my doctor has to be conservative. He refuses to allow me to use it anymore because I'll develop vision problems, and I agree with him. In fact, I was very upset and am still very nervous when he told me that I have to use FML, which is a much milder steroid (but still strong) for at least 10 days to get rid of the problem I'm having now.

But I do have to say that my eye feels much better since I started using it. I'm not talking about the dryness though. That would take several weeks. It just feels much less irritated and over a few days the surface will become much less inflamed, which will allow my abrasions to heal. Sigh, it's all so complicated. :(

So even if a doctor recommends steroids, be very reluctant to use it. Use it if you have to, but be careful. It's nothing to play around with, and I will get off of them as soon as I possibly can.

Yep, Drs seem real reluctant to try a steroid. How come they so often prescribe Tobradex (not Tobramycin) for infections though?? It must be only comprised of a small amount of steroid. I'm still gonna ask about steroids tomorrow when I see the the new opth. Perhaps, my kind of dry eyes isn't all that inflammatory. Maybe that is why the Restasis didn't kick in quicker. Who knows!! I didn't give it all that long a trial, but then my eyes seemed to get perpetually drier and drier (almost like another poster mentioned) That new Diquefosol is supposed to be helpful for those even without an inflammatory process going on. What is the hold up? Why 2006?? I see where they were just about to release it in either 2003 or 2004. I'm desperate for options, as I know you must really be, Elyse. I'm glad your eyes are feeling better on the FML. Feeling better NOW is a good thing. Your Dr seems like he is taking good care of you and looking out for you.

Ugh! I can't stand the burning and last night my eyes were stuck shut every time I rolled over. I hate this.

I'll be in touch~

Amy

Yes, my doctor takes VERY good care of me. He is my greatest advocate. He truly is looking out for my best interests, as he does for all of his other patients. I'm lucky to have a doctor who I have a good relationship with. When he's examining me, he is never rushed. I always feel like I am the only one in the office and for those 20 or so minutes I am his only concern. There have been times when I've needed a more extensive exam and he'll have 12 patients in the waiting room. Pretty much he just tells me that they can wait, he's with me now. That's why I never mind having to wait for him, because I know that he's just giving the other patients the same standard of care that he gives to me.


My eyelids stick together at night too. I also wake up severely dry. I use tears ointment in my eyes at night and that helps my eyelids to not stick together so much. There are a few different ones. I must use preservative free only, so I prefer HypoTears ointment or Tears Naturale PM lubricant eye ointment. I also like tears Again gel. I use Tears Again Gel Drops during the day when my eyes get really bad. Unfortunately all we have are these mediocre treatments though. No cure. :(


We've talked about Diquafosol and the most that anybody knows right now is that the FDA is holding it up for more clinical trials. Apparently the company was all set to release it, but hadn't done the amount of trials that the FDA wanted. They requested permission to use an earlier study, but they were turned down. So it's going to take longer. I wanted to get in on one of the trial studies, but they are only being done in North Carolina (Duke University) and you are right Amy, I am in New York. I'm desperate for it to come out already. But I don't want to get my hopes up either. Everyone, including me, thought Restasis would be the "miracle drug". We waited and waited and waited for it to come out, and now it turns out that it is not the great cure we were all waiting for. For some people it works great, but it doesn't help everyone. I'm not going to get my hopes up again only to possibly be let down. I have a very cynical view, but after all this time and all the different treatments I have tried, it gets a little discouraging. I'll find out more about it in September when I go down to Maryland to see the eye specialist at the Wilmer Eye Institute. He's one of the world's leading dry eye specialist. My doctor met him a few times and decided I needed to see him. His name is Dr. Terrence O'Brien. He's very very good, and really nice. He is involved in all the latest studies, etc....

It just seems to me that the treatment that I need, whatever it may be, has not been invented yet. :(

for me, the point of restasis is to get rid of my infultrates i got from a bad case of pink eye. i tapered off a strong steroid which was a name i forgot, and then to lotemax (which is a steroid) and then to restasis which is not a steroid. the answer to your question aj about when did i notice it started helping was when my vision cleared up. i'm not sure why you are using restasis.. if you said you were. I know there are things you can do for dry eyes and next time i go to the doctor i'll probably remember what this one flyer said. i go back in about a week and a half. another side effect is feeling like there's dirt or an eyelash (anything) in your eye. it sucks, i know.

Hey, LookslikeRain........
I'm curious to hear more about your dry eyes that came on after an infection? Can you tell me about "infultrates" as you mentioned. What symtoms did you have post infection. It must have been severe to have been put on two kinds of steroids. How long have you been on Restasis? I have quite Restasis after 5 weeks, but am comtemplating beginning it again. Please post if you read this. Thank you for your support.

Amy

Okay, I'm back from my camp trip (which was awkward having dry eyes) I felt like a mummy in my sleeping bag and having to turn over and try not to wake hubby and the kids to douse my eyes with drops and goop. Nights are the worst. For you people with MGD who report feeling better after having 8+ hours of sleep, how the heck do you do it? I find it so uncomfortable to sleep with dry eyes that stick shut. It is a constant reminder to me all night long that I am not normal. I hate it and can't get past it.....
Okay, I had my third opth appt with the new guy this last week. I didn't like him any better. He was short, abrupt and to the point. He suggested plugs as did the other ones I saw. I said okay. He put in lower collagen temporary plugs and said they would dissolve in a week, but at least I could get a feel for them and see if I improve. Nada! I noticed absolutely no increase in tears in my eyes. I must be super dry as the dessert. Also, one of them popped out the day after he inserted them. Thought maybe that could be a test to see if one eye feels better. Nope. They both feel awful. He told me to try and wean off drops and use Genteal gel at night. It doesn't dry as crusty as the Refresh Celluvisc I've been using. It feels good when I apply it, but I find that these gels are dried up practically by the time I drift off to sleep. Then I feel worse. It is almost better to get up and splash some water on my face and eyes. I hate nighttimes. I don't even want to be intimate with hubby anymore. Sorry for the details. It just plain sucks and I'm consumed with worry.

So there I have it. Three opinions from different opths. All of them say- that there is no permanent damage only superficial cells dying off due to dryness. Not one of them will answer my question about the permanency of this situation.
Not sure if I should continue the Restasis or not. The last guy, said to let my eyes have a rest and not use drops much at all. That is contadictory to what I have heard, but maybe I will try that. My eyes sting and burn and itch- especially in the corners at the little patch/notch of skin. Elyse, do you find that Patanol helps with burning and itching? The corners of my eyes are so dry. Oh yah, this Dr wouldn't even do a tear break up analysis or Schrimers. He said there was "no need" since he could tell my eyes are already dry. What ever happenend to getting what you paid for? I wanted those tests. Grrrrrrr! Is every opthamolgist in Wa state a complete jack ***?? He thought I probably didn't have meibomian dysfunction, more lacrimal. I asked him about my accessory lacrimal glands and he laughed and said "You're throwing around a lot of big terms." Kind of like,you stupid person, I'm the Dr. here. Who are you? Anyway, yes, stupid Dr, I have been doing a lot of research and I do think that that is where my problem lies. (the accessory lacrimals) The problem is what to do about it!! Can anyone- Dr or not, answer that question.

Well, thanks for listening to me rant and rave. I hope you other dry eye suffers are doing well. Elyse, how are are your eyes??

Amy

Hi Amy, I could relate to so many things that you wrote about in your post. I wrote about my dry eye story in another post labeled "Surgical cure for dry eye problem". After so many years of having treatment plans that didn't work, I traveled out of state to a corneal doctor who specialized in ocular surface disorders. My first appointment was about 2 hours long and consisted of so many diagnostic tests that I had never seen before. Dr Tseng (his office is in Miami Florida and he was formerly head of corneal services at Bascom Palmer Eye Institute at University of Miami) was able to diagnose my problem and surgically treat it. I hope this gives you hope that there are great doctors out there who know what they are doing. It took me over 5 years to find a doctor who could solve my dry eye problem that consisted of constant burning,redness and inflammation.

Prowley, could you tell me please if now you can use contact lenses? or if your eyes are not red anymore?

I never wore contact lenses. My eye is not red anymore. The surgery was a success...so far everything looks and feels great

Hi Amy!

When I read your posts, I feel like I’m reading the story of MY life for the last 6 months! The only difference is how it started. I was a long-term contact lens user (7 years, 16-18+ hours/day), and around Jan 2004 noticed some redness/inflammation in my eyes. It was always the worst in the morning. I went to see an opthamologist, who told me to use Refresh PM ointment at night; he wouldn’t prescribe anything else for me as he said my eyes were too sensitive and wouldn’t tolerate anything. In hindsight, I probably should have listened to him, but he had such an arrogant and abrasive manner that I decided to seek another opinion.

My second opth immediately prescribed FML (a steroid drop), which did nothing to clear up the inflammation. However, this is when I started to experience a foreign body sensation in my left eye. (Before this, my eyes were red, but always FELT perfectly fine). He then diagnosed me with dry eye and put me on Restasis; this started a terrifying downward spiral for me. My eyes were red, I had constant burning and foreign body sensation, and for the first time, my eyes felt desert-dry. I quit the Restasis after 11 days. Next my dr tried plugs, which I had removed after 5 days because I could feel them against my eyes (and it hurt). At this point my eyes were so bad I was using ointment during the DAY. For some reason I decided to give the Restasis another go, as I figured my eyes couldn’t feel any worse. This time I had constant itching, and the inner upper part of my left eyelid became red and swollen. My dr put me on Alrex (another steroid drop), to take along with the Restasis. This is when I hit rock bottom; my eyes were shattered-glass dry, they actually went blurry once when I was driving, and I completely lost the ability to cry. Very scary stuff. So I stopped all medications right then and there (this was in late May 2004). Since then, I have been using Refresh Endura during the day and Refresh Celluvisc at night (the ointment seemed to be irritating my eyes, and after I stopped it, the foreign body sensation actually decreased). My eyes are still dry (I have to use drops about once per hour—but I work on a computer all day), but feel marginally better; I also seem to have somewhat regained my reflex (crying) tears, although certainly not to a normal level.

I completely understand your frustration with doctors. My opth referred me to a corneal specialist at one point. I had to wait 2 1/2 months to see him, and kept holding out hope that he would have the answer to my problem. I did a ton of research before I saw him, and went armed with a lot of information and well thought-out questions. He was very condescending, found it amusing when I asked him about MGD, etc, and concluded with “your symptoms are all out of proportion to how your eyes look”—ie, implying it was all in my head. He put some dissolvable collagen plugs in my eyes (which didn’t help at all) and sent me on my way. It was such a crushing disappointment to not gain anything at all after months of waiting.

So here I am. My eyes are red and dry, but I seem to have rebounded somewhat from my worst levels. The only new thing I’ve added to my regimen is Patanol, as an anti-inflammatory, as my eyes are still so red. I’ve been nervous to try it because of the preservative. Purple, I think you mentioned that you use Patanol; does the preservative bother you, or have you been able to obtain some preservative-free version?

So Amy, when you figure out what’s wrong with your eyes (and if anything provides you with any relief!), please share! At least now I know there is someone else whose eyes actually felt DRYER with the Restasis; my dr said he had never heard such a thing before. And like you, I haven’t been able to get any answers as to whether or not this is a permanent condition. Is it possible that medications can do permanent damage to lacrimal glands? Can lacrimal glands repair themselves and resume normal functioning? Are there any doctors who will answer these questions?!

I am so grateful to all who are posting re. dry eyes...I've learned so much more here than from the countless dr visits I've had over the last few months!

Prowley-
Thank you for your encouragement. I have been doing searches to see if I can find the best dry eye specialist in my vicinity. I now have been recommended to two in Seattle area about 50 miles from me. I'm hoping that one of these cornea specialists can help me. Of course I saw a local cornea specialist too. I can't get my hopes up too much because I am continuously let down. I'm glad you found such relief and a cure in your Miami Dr.

Amy

Amy, Yes I am so grateful that I met this new doctor in Miami. I live in Maryland, so unfortunately I had to travel to find the solution to my problems. For me it was having a smooth ocular surface and the amniotic membrane transplantation surgery to correct a wrinkled conjunctiva. My eyes are no longer red and do not burn. You might want to ask your doctor about conjunctivochalasis (which is what I had) I went to so many doctors and none of them told me I had this and that it could be fixed. Dr Tseng pioneered this surgery...so maybe I got lucky that he was the one that found this problem....maybe another doctor might not have done the surgery so successfully. After he smmothed out the conjunctiva, he used the amniotic membrane to resurface the eye. I don't know how many other doctors do that.

Hi Lulu-

Thank you so much for your post. I went back and read through your history myself. I really understand and can completely identify with the heartache that sudden dry eye syndrome can cause. I am getting very depressed. My eyes seem to be getting worse. My vision is only impaired in the morning (foggy haze) but I am scared of the day that things go from bad to worse.
I have been thinking about trying the Restasis again. I'm not sure. The only relief I had from it was about at wk 2, then things just got drier. Of course, this also was about the time I went to see my old optometrist (that always did my contacts) and he prescribed me a new and better contact for dry eye. At first I was thrilled to be back in contacts, but after 4 days of wearing them in my ultra dry state, I really realized how much I regressed. Not sure if the Restasis was to blame or the contacts. I am soooo desperate. My trial with lower temp punctum plugs did not work and irritated my eyes. Still I had no tears. I'd almost rather go with cauterization instead. I have not tried any type of steroid as all the opths I've consulted would not prescribe them. I kept thinking that could be the magic answer and the one silver bullet I haven't tried yet. Have you been told that your dry eye is lacrimal or meibobian?? It sounds lacrimal. Heck, I probably have both deficiencies, but I'm leaning toward lacrimal. I have less tears when I yawn or cry and absolutely none of the "autonomic" moisture that should be produced during the night especially.
I am seeing a new Dr in a few weeks who is supposedly the best in the Seattle area for Dry eye. I will let you all know how it goes and I will share any info. Instead of paying all this money to go and be advised of a better artificial OTC tear drop to make me more comfortable, I want to get to the Why's and the How's that this happened to me. What is my real prognosis......that is the question. Each day I become more and more depressed and unable to function. It takes its toll physcially and emotionally.

Well, I just wanted to thank you for your response. I have not yet tried Patanol. I seem to have very very sensitive eyes as well. I worry that each new preparation I may try- may set me back each time. Oh by the way, for those of you who have had all four plugs and/or cauterization, did you notice a much drier nose?? My nose is already very dry and chronically stuffy (not with mucus, just dry feeling constantly) from lack of tears.

Thanks again LULU! p.S. How old are you? Where are you from? Married with kids or anything?? One thing for sure, I find that it is much harder to take care of my kids while worrying about this at the same time.

Amy

Hi Amy,
Before I had this surgery, I had also tried all the drops. I tried Tobradex and Lotemax which are steroids and they both helped with the inflammation. I always got my eye pressure checked while I was on them and my pressure was ok. But I never wanted to stay on them too long because I was afraid of cataracts and glaucoma. I was also on Patanol. I thought that it helped but not enough...that's why I kept searching for a better solution. I tried Restasis but my eye could not tolerate it because it burned so much.

Hi Amy,
Thanks for your response! None of my doctors have ever told me if my dry eye is lacrimal or meibomian; I asked my current opth once if my meibomian glands were okay, and he looked surprised at the question and just said “they look fine”—but he didn’t seem to inspect them closely or anything. My guess is it’s mainly lacrimal, since I can barely produce tears when I yawn/blink/cry. And I have absolutely no moisture at night; my eyes are extremely dry when I wake up in the morning (or during the night). I just can’t understand how my lacrimal glands could shut down so suddenly; and I can’t help but wonder if it was due to the meds. Or perhaps it was the long-term contact use, and my corneas were so desensitized I just couldn’t feel the dryness. Are your eyes actually red or veiny? Or do they just FEEL bad?
Sometimes I think about trying the Restasis again too (I too felt some relief around the second week!—then downhill from there), but I honestly don’t think I can bring myself to do it after my last experience. I’m nervous enough about the Patanol; I’ve been using it for a few days now, with no significant change for the better or worse…but I feel like I should be doing something to try to control the inflammation. I’ve also thought about cauterization, but am hesitant to do something so permanent when the plugs didn’t seem to help.
I’m in my early thirties, from the Northeast US, no children. Dealing with this problem is so physically and mentally draining, it’s taken a toll on my work, social life, etc; I feel for you, as I can’t imagine what it must be like to have to be a “mom” at the same time. My fiancé has been very supportive, though I think it’s difficult for him to understand how awful I feel; if I wasn’t going through it myself, I could never imagine eyes could actually FEEL like this :-(
I am seeing my opth at the end of Aug and will press him on the lacrimal vs MGD issue. Please let me know how everything goes with your dry eye doc. It seems like our symptoms are very similar; maybe between the two of us we can get some answers and a proper diagnosis!
Lulu

Hi Lulu-
Just a quickie before I head off to bed. My eyes are extremely "stingy" tonite and burn like hell. Just to answer a few of your questions.......my eyes look tired all the time. Not real red, but have a pink appearance to them. The blood vessels don't stand out "blood shot" red against white, because the whites of my eyes are irritated and pink.
My husband has tried to be supportive, but he doesn't understand really. He thinks I should be able just to go on with life, but in reality, it's really crippling. I can't decide if I want to keep looking at this computer with my burning eyes or head off to bed so that my lids will stick together. Every time I try to open them, it is like I have this sandpaper texture all around my lashes (during the PM)

I hope my appt is enlightening on the 20th. I'm doing a lot of praying as well.


By the way, I started using Refresh Endura again (cause I had box laying around) I had used it before with no problems. Now when I use it - it seems to irritate my eyes. (just like the Restasis did only not quite as severe) It must be the oil in that drop. Also, my eyes have a tendency to feel oily. I guess when there is no lacrimal water- the oil part is off balance. I'm pretty positive I don't have MGD though.

How is the Patanol working for you?? I was amazed to hear that the steroids you tried in the past actually made your eyes feel worse (shattered glass dry- as you explained) I would have thought bringing the inflammation down would produce more tears. Hmmmmmmm. All so confusing.

Off to bed I go~

Amy

Hello.Im 14 years old and I get headachs in my eyes everyday..I have been to the eye doctor many times because I have a lazzy eye..But they never did anything about it. :)

Hi Amy,
I hope your night wasn't too bad...
I was surprised at the effect of the steroids too...but afterwards (too late), I looked up the potential side effects of Alrex and one of them was DRY EYES! But also, perhaps my eyes are just bizarre, as even Restasis made them feel dry...
I had the same problem with Refresh Endura right after I stopped using the Restasis; I kept using it anyway though, because it's the only thing that lasts on my eyes for more than 5-10 minutes (and I have tried practically every drop out there--I have a small arsenal of partly-used boxes of eyedrops). After awhile, the Endura seemed to irritate my eyes less and less.
Not much to report with the Patanol, good or bad. I don't know if it should be clearing up the inflammation right away, or if my eyes need a steady regimen of anti-inflammatories since they've been inflamed for so long now.
I really hope you have luck with the corneal specialist. Mine dismissed my dry eye as "just an annoyance, not vision-threatening"! Just an annoyance?!?!--Grrr--I wonder how he would feel if he had to live through just one day with this?!
Take care,
Lulu

lulu, I agree with you. As I've said before, optomotrists and optomologists don't care for dry eyes syndrom and the emotional pain together with it.

Hi Lulu,
I just re-read one of your posts and saw that you live in th Northeast. I live in Maryland. What doctors are you seeing now? Maybe I've seen them and could give you feedback on my experience with them and the dry eye problem.
As I said I found very little relief before Dr Tseng correctly diagnosed my problem and surgically fixed it. One thing I didn't mention is that Dr Tseng said I had delayed tear clearance and that I should use Unisol (an over the counter salin solution) to irrigate my eyes and that it would help with any accumulation of debris in my eye. Everything he's told me to do...and especially the surgery has helped.
Dr Tseng did try to put me on steroids first before I did the surgery but it did not resolve the problem.

Prowley-
How did you find out about Dr Tseng? Was it on the internet or were you referred etc?

Amy

Hi Lulu-
I had a particularly bad night last night. I'm reaching my lowest levels. I had a good long cry. Then I usually get a headache and pain around the sides of my eyes. (kind of where the lacrimals are) My eyes have been stinging and burning more throughout the day lately too. I just started taking three weeks ago a supplement called BIO Tears- which is like a flax oil, but is actually Black Current oil and Cod oil. It has all the omega 3 and 6's, plus lactoferrin and mucin. I have been so hopeful that this would provide relief. But instead, what is happening is I am feeling extremely oily and greasy all over. My hair, face, and yes, eyes. But unfortunately, the oily eyes seem to burn- almost like a toxic tear film. I know I'm really missing the aquaeous layer. Do you ever touch the white of your eye? It supposed to be wet, mine is just dry and sticky. yuck!

Today is my yearly physical. I know BP will be up from stress and of course I have depression now too. Certainly can't take an anti-depressant because of the dry eye issues already. This summer has flown by and I feel like I have nothing to show for it. My poor kids and husband pay the price too.

I'm interesed in your post to Prowley. What did Dr Tseng respond to you with?? I emailed him as well. (before I read your post that you did) :p
Prowley is making quite an impression on us!!! I just want to see someone who will help me figure out what is wrong. So many opths just "poo-poo" dry eye. I want the whole gamut of testing and some solutions.

Well, have a great day.

Amy

Hi Amy, If you want the whole gamut of tests then you will be going to the right place if you go see Dr Tseng. I went to see Dr O'Brien at Johns Hopkins because I thought that was to be a top place for dry eye problems...but there were so many more diagnostic tests with Dr Tseng. It was so much more comprehensive. Since Dr Tseng is a corneal specialist he does corneal transplants and deals with so many major eye problems...but he does not put dry eye on the bottom of the list. He realizes how debilitating it can be and treats it that way. Even while I was recovering from the surgery and I would e-mail him questions, he would e-mail his answers back immediately.

Prowley, did you sign a consent form that state that the surgery you have done is totally new and you are taking a risk?

This procedure has been around for many years. If you do a google search about the surgery you will see this. I also wanted to be sure that this is a surgery that he does frequently...and it is

Prowley- You've been really helpful and supportive during this trying time. Just wanted to say "thanks."

Lulu- Where are you? How are you doing??

Amy

I need some advice on some nighttime relief. I used to use Refresh Celluvisc at night or Refresh PM ointment. Didn't much care for them. As of current, I've been using Genteal Gel although I find it slightly irritating (it has the dissolving preservative) What else do you guys like to use? I'm not especially fond of the petroleum jelly and mineral oil concoctions either. Is there anything else? It has to be preservative free. Nights are the worst for me. Thanks!

Amy

Hi Amy! I took a weekend away from the computer, as I am in front of it everyday (all day) for work, and this is when my eyes feel the worst :( Driving is no picnic either. Since I avoided these activities as much as possible this weekend, it wasn't too bad.
I asked Dr. Tseng some questions about the connection between pinguecula and dry eyes, and the possibility of removing them. Pinguecula are a build-up of conjunctival tissue on the whites of your eye, which can happen from sun, wind, dryness, etc. My opth said many people have them and never notice--I have small ones that I shouldn't notice, except for the fact they are red/inflamed--presumably due to the dryness. What I don't know is if the dryness is causing the inflammation, or the pinguecula/inflammation is causing the dryness. If the latter is the case, Dr. Tseng indicated that removal should be considered, to provide a smooth corneal surface and better tear film stability. None of the three opths I've seen would even consider removing them; it's good to know that I have an option now if I decide to go this route. Of course I'd still love to find a non-surgical solution! I'm afraid that my dryness may be an independent problem (from the pinguecula), especially if I am not producing enough tears.
Did Dr. Tseng respond to your email? Would you mind sharing any information he provided? There are a million things I wanted to ask him about dry eye, but I didn't want to bother him with lots of questions...
Hope you are doing okay...
Lulu

Hi Lulu, I can give you some info on pingueculae. I have a small one in my other eye that I just noticed this year. It doesn't seem to bother me...i.e. redness or burning. I asked Dr Tseng about it and he said he could correct it by doing almost the same procedure of smoothing aout the ocular surface with the amniotic membrane transplantation. It's a slightly easier procedure but it would achieve the same thing which is to have a smooth ocular surface. He said that the problems that a pingueculae can cause is to have a tear film that breaks up too quickly and it could generate dryness, burning and irritation. I will not do anything unless it bothers me.
I am still happy with the surgery on the other eye. It is 6 weeks now. it looks good and feels good. If you would have asked me 6 months ago if I thought I would ever find a doctor that could help me I would have said no.

Hi Lulu
I know what you mean, if I stare at the computer too long- my eyes just burn. Course, they burn most of the time.
Well, I got my email back from Dr Tseng. I had written him about a paragragh synopsis of my problem. He was pretty brief in his reply. Basically, I wanted to know if he had seen this happen before- a sudden severe dry eye onset following an infection and if he could help me. Although, he didn't answer thr first question, he did tell me that he emphathized with my situation and that he feels very confident that he could help me. He says he has all the sophisticated equiptment for testing to get to the root of the problem. I had asked if maybe he knew of someone in the Seattle or northwest even that he could refer me to. He just said that the best place would be there in Miami and to contact Rachel (his assistant) if I decided to do so.
Lulu and Prowley, I am seriously considering it- possibly as soon as Sept. I have to research expenses and insurance etc for out of network. Round trip airfare is only $213 from here and mapquest says he is only 10 miles from the Miami airport. Plus from Seattle, I found a direct flight. Not bad. Wouldn't that be something if he could help us and solve our problems? Just something I'm kicking around in my head.

In other news, I had my physical last Friday with my GP. We are re-running the lab work I had done in June- once again looking at auto-immune just to be sure this is not Sjogrens. Lulu, did you have that done?? I hate the waiting for the results. 10 days.

I ordered new glasses yesterday. I got those Transitions which I am pretty excited about. They should help with the glare and if I have to wear glasses from now on~ at least they are pretty neat looking. :cool:

Thanks for sharing your info. I was hoping to get a little more specifics wise, but that is okay. I have a good vibe from Tseng and all that Prowley has said.
I will see the new cornea specialist on Friday and see what he has to say. If he is anything like the rest, I'm not holding my breath though.

Later~
Amy

Prowley, thanks for the pinguecula info; I'm going to question my opth as to whether this is the root cause of my problem, or if my primary problem is dryness (ie dysfunctioning lacrimal glands). I guess if I have poor tear film stability, that would be evaporative dry eye?

Amy, did any of your opths give you tests to determine evaporative dry eye vs aqueous deficient dry eye? All I had was a Schirmer's test, which was low (can't remember the scores). I'll be seeing my opth again in a few weeks, and would like to know what tests to ask for so that I can determine if I have evaporative dry eye as well. Yes, I had the bloodwork done to test for auto-immune diseases, and everything came back negative. My opth said I should also visit a rheumatologist, but I haven't gotten around to it (it was getting really hard to arrange all these appointments!). I can't believe you might be going to Miami as early as Sept.! :bouncing: Please keep me updated on your plans, and let me know how things go with your corneal specialist :)

I would say that the quickest, easiest way to test for evaporative dry eye is for your doctor to stain your eyes (with either fluorescein or rose bengal) and look to see how quickly your tears break up. Ask him to check your tear break-up time. Staining your eyes will also allow him to get a better look at your corneas.

Thanks for the advice Purple! I will ask my doctor to do this. While you're here, may I ask you another question? I think you mentioned you are using Patanol; if so, does the preservative in it (benzalkonium chloride) bother you? Usually I can't use anything with preservatives, but so far I think the Patanol has been okay. Just wondering... Thanks again! :)

Lulu- I had a Schirmers test a couple months ago done by my optom. The scores were low, but he said not extremely low. This happened to be about week 2 of Restasis and I believed things were looking up at the time. As you know, they went downhill since then. I've since asked two other opths to do a Schirmers test and they all sort of excuse it as not very viable info. They can tell by looking and my symptoms that my eyes are dry. I had a tear break up test done once, but he never really told me the results. Unfortunately I had an opth that was not very forthcoming with results or in his bedside manner. I will definitely inquire once again about all those tests on Friday. I really hope to find some answers. I know I'm not doing plugs again. Returning to Restasis is a possibility. :rolleyes: All along I have felt like maybe a steroid would have been in order, but it makes me nervous to hear stories such as yours and others where a person has actually become "drier." Plus, I know that I need preservative free. That is another good thing about Dr Tseng. He compounds all his own preservative free drops. If I don't get some answers here, I will go down to his clinic to have him sort it all out. How did I ever become so complicated?? Just months ago I wore contacts freely and never had sensitive eyes or anything to the preserved saline solutions or anything. :confused:
I have been just miserable. If something like an irritant (particle or eyelash) lands in my eye, I have no reflex tearing to even blink it away. It is awful. Nights still put me over the edge. There is nothing worse than trying to drift off to sleep with eyes that are dry as cotton. Of course waking up that way is even worse.

Hope you're doing okay. Keep in contact.

Amy

anyone have pain with dry eyes? Anyne develop punctate keratitis from it?
Also anyone have had punctal plugs?

I have pain from dry eyes sometimes. Of course, when you have sever dry eyes syndrom you will have pain eventually.

Hey Everyone! (especially Lulu, Prowley and Sk11 and those who have been following along with me)

Well, I had my corneal specialist appt Friday (with a bigwig from a top Seattle opthomology group) For the first time, I felt like I got my moneys worth with a very thorough exam. It must have lasted at least 1 hour if not more. The very first thing they did was a Schirmer's and I was astounded at the results. I actually had 9mm R and 15mm L!! Can you believe that? I felt dry during the test, but that was barely below normal if you could even call it abnormal. Isn't 10mm normal?? Who knows, maybe reflex tearing kicked in a little bit. Go figure! Anyway, I definitely do not have meibomian gland dysfunction either. He checked very thoroughly with the slit lamp and also with VERY firm lid pressing and he said my oils were running clear. He put many drops in my eyes of all the various colors. It appears that my eyes are inflamed on the surface, but still my symptoms as I described were worse than what he saw. That is what they have all said thus far. This Dr who is in his early 60's and is very experienced, believes that my inflammation is hanging around from the old streptococcal pneumonie infection (a really virulent germ). The infection is long gone, but my immune system kind of went haywire. He said for sure that the toxicity effects of Tobramycin wouldn't still be causing a problem. It is confusing though since I never felt like my L eye was ever infected in the first place. That is the only part that doesn't quite "sit right" with me. He explained it that I had an immune reaction to the bacteria even though I treated what was my "good eye" before the infection really took hold. Anyway, the good news here is that he said my eyes should completely (or nearly completely) recover. He said if left alone it may take several months. He was amazed that after having seen three other opths- that none of them suggested a steroid but only plugs and restasis (which he said would not be best suited for me in this particular situation) Anyway, he gave me Prednisolone to take 4 X a day for 2 wks. Then he will recheck my pressure and taper off. I'm really hoping this will work as I dislike taking a steroid because of the side effects long term. It scares me. To those of you who have been on them- how long each time have you gone? This particular steroid is quite powerful- more than Lotemax and the others, but he thought a good heavy dose of cortisone initially and in the short term might do the trick and then I hopefully can get on with life and all of this could be in my rear-view mirror. Oh, wouldn't I love that. We'll see. I shutter every time I put a drop in just because I hate taking meds espcially steroids (plus these have preservatives- unlike Dr Tseng's) By the way, he said he knows of Dr Tseng and that Tseng went to Bascom Palmer soon after he was there. Spoke highly of him. It still feels very comforting to know that Dr Tseng could always be another option if I need him, but I wanted to see if I could find some competant local help first. I hope I've found it. For the first time someone listened to me and didn't "down talk" to me. Thank you all for listening to my story. Lulu, hang in there. How are you?

Anyway, I am feeling quite a lot better. The news of the day was encouraging and so that helps me emotionally so much.

Amy

Hi Amy, That's great news that you got such a thorough exam. I wouldn't worry about the steroid drops as long as you're getting your pressure checked in a few weeks. Dr Tseng had me on the steroid drops for 3 weeks and I got my pressure checked in Maryland where I live and it was ok. I would never want to be on streroids long term because of the side effects. Good luck...it sounds like you have a good doctor.

Hi Amy,

I am glad you are going to be all right. I may have had 2 -3 minute exam with my eye doctors. My insurance would allow only exam by certain group but if you would share the doctor's name I would not mind going to see him also.

I saw eye doctor last week also but I got just brush off about my questions. He could not spedn more than total of 5 minutes and then rushed out of the room. Just rude SOB. He even charged 1000 for plugs which is more than eye surgery but still treats me like a nusiance.

If you are sick, you are at the whim of these jerks.

I was prescribed FML for 3 weeks and not even tapering dose. He knows I have possible epithelial defects. Textbooks say not to use steroids if you have epithelial defects. But still he prescribed it.

In your case Amy it makes sense. Per textbook, there is no harm in use of steroids if the eye does not have epithelial defects i.e. ulcers.

It sounds very promising and I wish it was that simple for my case.

Thank you both for your replies. I am feeling slightly better, but have been dealing with sort of a feeling of eye strain. My eyes are soooo tired by the end of the day. Could that be related to the prednisolone?? Thank you also for making me feel better about taking the steroid. I return to the Dr in 2 wks for a pressure ck. My eyes are still dry at night, but not burning as much during the day. Sk11, I hope you can find help; I really do. Heck, I still hope that I've found it. ;)
Where are you located? As you know, I'm in Seattle and the Dr I saw was Dr Brian McKillop. It was the first time I never felt rushed during an exam and this Dr had absolutely no "hot shot" attitude like the others I had seen.
Hopefully he knows what he's doing. :p

Amy

Hi Amy! I'm so happy you finally found a good doctor! And just the knowledge that your problem isn't a permanent condition must make you feel a thousand times better. I know I'd be able to deal better with this on an everyday basis if I knew that one day it would be all over. That's amazing you had such high scores on your Schirmer's--do your eyes actually still feel dry? Did the doctor say if your lacrimal glands had been affected by the infection, ie. were you really producing less tears? Or did it just feel that way because of the inflammation? Maybe it was evaporative dry eye because of the inflammation. I asked my doctor for Pred, but he said it was too strong for my purposes--that I didn't need something that penetrated any further than the conjunctiva. I'm curious to see how you respond to it; maybe what I need is a stronger steroid to get rid of this inflammation (even though I am now petrified of using them!)
GOOD LUCK with it, and please keep me updated! :)

Amy, how long ago did you have that infection? Did your doctor provide any further explanation re. how your immune system was responding?
(Sorry for all the questions!!) I wish I lived out there and could go see him too!

Hi Amy and Lulu,

I am glad Amy is on the road to recovery. Lulu I don't know your situation but sounds like you could have full recovery too.

My eyes are so dry that if I don't use Naturale PM ointment I have severe pain. None of the tear drops will even touch the dryness. I think inflammation of my cornea is improving but I have lots of pain still. I can't look at something more than 5 seconds because I feel like I am staring into bright light.

I just don't know ths status of my tear glands. I have reflex tears but that is it. I think I lost all of my glands that make the aqueous portion of the tear. I don't know if it will come back.

I finally broke down and used FML this morning because it was burning so bad. If I had some tears I would heal up. I just take minute by minute and hour by hour to survive. I have never been really sick before so this has been devastating on my life. Thanks for listening.

I think the contact lenses are root of all of our eye problems. We take for granted the purity of our eyes and underestimate the fraility. God did not design for us to plastic lenses in eyes for prolonged period of time. Our bodies adapt but we become carless in the use.

Steve

Lulu-
I wish I could answer your questions. They were all good ones, but I'm afraid I just don't understand the mystery of this pink eye that caused inflammation to go haywire with my immune system and what it all means. I got the infection on May 16th and it was pretty much gone 5 days after. The inflammation and subsequent dryness just lingered on and on, I guess. I still don't undertand why what seemed like the good eye (the uninfected one) went the same inflamed route. It doesn't make much sense, but taking this Prednisolone is one route I haven't tried yet. Actually, the more I use it, the more it seems to sting (like Restasis) did. Probably those preservatives.!!!! I hope it is doing some good though. I will definitely keep you informed. I go back Sept 3rd. Still taking it day by day.

Sk11-
Hi Steve- glad to know your name. Now that I have had some eye problems myself, I can really sympathize with your situation. I know yours is on a much greater scale of discomfort and for that I'm so sorry. I really hope that through the combination of medical treatment, time, and God's help that you will recover.
I agree with you about contacts. I did take mine for granted too. Maybe that is why I contracted pink eye. Also, I tended to touch my eyes a lot more when I had lenses in. With my glasses, I don't touch my eyes nearly as much. Hopefully that will cut down on further risk. It is hard with a 4 and 7 yr old though!! They bring home every crud that goes through the school. If I do go back to contacts, I plan to only wear them once or twice a week. By the way, Lulu, did you find a contact for dryer eyes that is a once a day disposable??

What state are you in Steve (if you don't mind me asking)

Amy

Hi Steve!

I am so sorry for your situation and can certainly sympathize with what you're going through. There was a time (last spring) when I could not make it through the day without constantly putting Refresh PM ointment in my eyes. I too was taking it hour by hour, and day by day. I think my whole story is somewhere back in the beginning of this thread.

How long did you wear contacts? I wore mine for at least 12-15 hours/day, every day, for 7 years. They never bothered me, and never felt dry; the only reason I stopped wearing them was because my eyes became very red.

I stopped all meds (steroids, Restasis), and the ointment (became too irritating) in May, and since then I feel marginally better (not as much pain, but still very dry). I am now using Refresh Endura drops about once per hour, and Patanol as an anti-inflammatory. Don't give up hope; I'm trying very hard to believe that given time, our bodies have the ability to slowly heal themselves. And hopefully doctors (and researchers) will begin to take dry eye problems more seriously and provide us with more support in managing it...

Just remember you're not alone!

Lulu

Hi Amy!

I hope the Pred is giving you relief, especially from the burning. Unfortunately, no one ever answered my question about daily disposable contacts for dry eyes. My guess is that they probably don't exist; let me know if you find out otherwise. Like you, if I can ever wear contacts again, they will be reserved for once or twice a week. I don't like the idea of a pair sitting in solution for days between use, and it's such a waste of $$$ to throw away a 2-week pair after 1 or 2 uses.

Thanks again for taking the time to answer my questions and share your experiences; it gives me some hope! :)

Lulu

Hi Amy and Lulu,

I am glad I found you guys. It is really sad and ironic all of us suffered about same time in May.

Amy,

I live in upper part of FL.
I am glad you have a hope of wearing contacts again. And YOU WILL!!!! Trust me. But it is interesting that we suffered similar faith after wearing contacts for many years.

I became emboldened when my eyes tolerated ever increasing demands. I would were the contacts 12-14 hours a day without rest. Even though eyes felt dry by noon, I would continue to wear them. Of course when I took the contacts out my eyes were fine. So what did I do? I took them out in different places frequently to wash and clean them because they were uncomfortable. The more you handle them, there is more chance for problems. It sounds like you touched your contacts more because of discomfort.

I do blame myself for my situation but also the dumb optometrists who are out there. Most are just quacks. They are mostly interested in making money and could not care about patients. On my last visit in 1/04, I told him that I was having dry eyes with contacts in. So he puts me in same type of hard contacts and just made my contacts tighter against cornea? Which is not good. He should have told me about disposable contacts for people with astigmatism. Instead he told me to use Refresh tears with contacts IN!!!. It made my dryness worse and so I took them out more to clean. He is a quack getting kickback from that company. I really should have asked more questions. I found out later when I was examined after alkali burn that I had a scar on my cornea from using hard contacts. I talked with the optometrist to see why he failed to mention this. His reply was that people with hard contact have this scar all the time and did not feel I needed to know about it(?). Is this guy for real? If I was told of this scar, I may have changed way I wore the contacts and also may have switched to different contacts.

I do miss getting up on Saturday morning and feeling the gooey eyes. That followed by pouring of tears with yawning, and some more tears with steam from the coffee. I would do anything to experience that again.

Anyway, I don't think you can wear contact lens if you have severe dry eyes, but I did read about Accuve Hydraclear which is supposed to be for people with some dry eyes when the contact are in.

Amy,
I read your situation and feel that your doctors made your situation from bad to severe. It is mind boggling that they would reach for Restasis as the first medicine. It is like someone chasing a fly with sledge hammer. Most doctors do not research the medicine. They get most of info when they attend cozy dinner meeting where the drug company reps. Of ocurse the drug company wants you to believe it is the miracle drug. Most people do no know that it is very potent immunosuppresive medicine called cyclosporine. Why would you put cyclosporin in your eyes? I guesss when you trust your doctor or when one becomes desperate.

I am scared to use even a steroid as I have epithelial defect on my cornea. So for my opthmologist to even consider Restasis is just quackery.
Anyway you could tell I would never use Restasis. But if I get desperate I will let you know.

I had bad day. I don't really sleep well. Pain 24/7 breaks down human being's core fiber. I don't think one can wish this type of pain and dilemma on even worst enemy.

Please let me know how you guys progress.

Steve

Hi Steve and Lulu

I hear ya about all the quacks out there. The first guy I went to (several times) was trying to tell me that I had blepharitis all along and that I must have never known it. That was causing all my pain and dryness. Yah, right. :nono: He was just reaching for whatever was in his medicinal hat.......Restasis, plugs, Doxy etc.........
By the way, I also have an astygmatism. I always had to wear a torric lense. They are so darn expensive. Do you know if they make a one day disposable in torric? Probably not, since they are thicker and more expensive.
I miss the tears from yawning too.
The cortisone drops seem to really be drying out my eyes now. Not exactly the effect I had wanted, plus my aches ache. It feels like eye strain. I may call back in and ask about these symptoms. Last night my R eye was stuck shut again. See.....I am still a long way from recovery. I want to stick it out with the pred, but in a way I don't. I still have almost a week and a half to go.
This is just me, but if I were you and living in FL, I would try to travel down south to Miami and see Dr Tseng if it were at all feasible. (and $$$ wise) He sees burns frequently. Even my Dr up here clear across the country spoke highly of him. I think the word "brilliant" was used. Just food for thought.

Amy

You sound like you have lyme disease. I have those symptoms that you have and a lot more. I was diagnosed with lyme. I diagnosed myself.Asked doctor for test and it came back positive. request a western blott for lyme just to be sure. Lyme starts out with the eyes and ends with the whole body.

Hi Lyme5, that doesn't sound so cool What is lyme disease? how can I test it.
I'm worried.

Thanks for the advice. I re-read my former post and due to my lack of clarity, I only meant it to say that my "eyes" ache occasionally like eye strain. I have no other aches or pains elsewhere. I do not think I could have Lyme's, but I appreciate the suggestion. It just may have been of help to someone here.

Amy

Amy,

I think they make daily lens for people with astigmatism from Ciba called daillies or something. Also check out coopervision. They have toric soft lens monthly disposables. I wish I had known about these before. I am sure you were enormed with word toric like I was and synomous with hard lens. I should have changed my contacts to soft. Many years ago I was told there were no soft contact lens for bad astigmatism. So I assumed never. I should have done more to take care of my health. If I had done that I would not be in this hopless situation.

I will bet your optometrists never mentioned differnet options to you too.
Why do we pay money to these idiots? I got better service and more information when I got my tires replaced at Costco. At least they sell you the best when I ask for it. It is ironic I spent more time researching different tires than I did for contacts before my accident. I guess that is for lots of people.

I think you have very sensitive eyes. I think it would be safe to finish out the steroids but is it on tapering dose? Make sure you also use tear drops and ointments along with steroids. I have all the confidence you are gonna get your tears back. It is gonna take its sweet time.

Steve

Don't be so sure sk11, I'm well informed about dry eyes. For 99.999% of people with dry eyes the situation will never get better.
It's my real dream to have my tears back to normal so I can wear contact lenses. No steroids will ever ever bring back the tears to anybody. They can only make things better while you are on it. Once you stop, that's it.
dont tell lies to people.

Don't be so sure sk11, I'm well informed about dry eyes. For 99.999% of people with dry eyes the situation will never get better.
It's my real dream to have my tears back to normal so I can wear contact lenses. No steroids will ever ever bring back the tears to anybody. They can only make things better while you are on it. Once you stop, that's it.
dont tell lies to people.

I don't know your story. How long have you had dry eyes?
I think tear status depends on what started the problem.
Where did you get the number from your research?

To Iwantacure:
You are right about steroids being only a temporary cure. They only worked while I was on them. As soon as I stopped them my symptoms of burning, redness and inflammation returned. For me the problem was having a wrinkled conjunctiva. When that was surgically fixed to give me a smooth ocular surface I did not need the steoids anymore.

To Amy,
If you think that the cortisone drops are drying out your eyes or you are having any other side effects you should report them to your doctor immediately. He might want to put you on another steroid or one without a preservative or he might want you to stop using steroids completely.
When I was recovering from surgery, Dr Tseng prescribed steroid drops and antibiotic drops. They were stinging my eyes. I told him this immediately. He changed the drops and everything was fine. I was in constant contact with him (either by e-mail or phone) and it really helped

HI Amy and Lulu

How are you guys doing? Hope going well.

Hi everyone!
I'm still here........and surprise surprise.....my eyes are still dry. :rolleyes: I have been plugging along with the prednisolone and although I have felt some relief from the inflammation and dryness, I had some other symptoms that I couldn't figure out for awhile. I was having an aching feeling in my eyes and especially my R one. Then I realized it was sinus pressure. Before I realized what it was, I stopped the Pred for a few days because I was scared it was from that. I called and the nurse assured me it wasn't, but for me continuing to put a drop in my eyes when they were aching like that- just didn't feel right. Although I've felt sinus pressure before, never around and behind my eyes. I barely have a cold at all. During this whole dry eye thing, I find that my nose is very dry as well (from no tears) Maybe the sinus lining just became inflamed. Anyway, I'll return to the Dr next week for the pressure check. I know others of you have mentioned how steroids are usually a temporary fix and I'm afraid you are right. When I stopped them for a few days (and I know.........tisk, tisk for stopping them without Dr's knowledge) my dry eyes became worse. I was hoping to use them to jumpstart my system from the inflammation over the course of the last 3 1/2 months. We'll see.
How is everyone else doing?? Lulu..how about that Patanol? Any luck? By the way, I did get all those labs back again after I had them redone. All autoimmune stuff negative. Whee! :bouncing: Even that reassurance helps as I am a high anxiety person.
Steve, did it turn out that you got an infection? I hope not. Keep me informed.

Amy

Hi everyone!

Amy, great news on the autoimmune tests! One less thing to worry about, right? Did your sinus problems start at the same time as the steroids? When I was on Alrex, I got a really bad sore throat and runny nose; turns out they are known side effects of the drops. I didn't have any similar problems with the FML; the FML actually seemed to alleviate the inflammation for the 2 weeks I was on it, but it came right back when I stopped. Has the pred relieved the burning?

I went to a new opth yesterday. She was very thorough, respected the fact that I had done a lot of research, and tried to answer all of my questions. I figured a female opth would be smarter :p and perhaps more sympathetic to dry eye problems. She did not do a Schirmer's because she doesn't believe in them, but she did a tear break-up test (I had 5 sec in one eye, 4 sec in the other--NOT GOOD!). So I obviously have evaporative dry eye, as well as aqueous-deficient (given my past Schirmer's, and no-tears experiences). A double whammy. And to top it all off, she said I have posterior blepharitis (MGD)--she is the first of four doctors (one being a corneal specialist) to diagnose me with this, even though I directly asked the last two about it. So they either missed it, or my meibomian glands just recently began to malfunction :dizzy:

Anyway, I kind of like the Patanol, as it quiets the inflammation a little bit. However, the new doc says to stop using it, as it can be drying. Anyway, she wants me to do the warm compresses, eyelid massages, etc--can this stuff get any more complicated?? I miss my easy, carefree life!

Prowley, I completely forgot to ask my new doc about conjunctivochalasis, though I think she mentioned something about parts of the conjunctiva touching or rubbing together, but she didn't think it was a problem--I will have to get more details on my next visit. (Like I need anything else wrong with me!)

Steve, I hope you're doing okay--let us know how you are!

One more thing, and this is just for the girls! Not to get too personal, but I have been doing some reading on oral contraceptives and dry eyes. It is believed that androgens regulate the meibomian and lacrimal glands, and help promote a non-inflammatory ocular environment; unfortunately, birth control pills greatly reduce circulating androgens. Don't know if this applies to you, but it was an eye opener for me! I always wondered why the prescribing information said it might cause "intolerance to contact lenses"...

Hi Lulu,
Since everyone is using their name now...my name is Joy. I think in another post Amy thought I was a male.
I think that we have some similar eye problems. The interesting thing is that before my surgery none of the things that my doctors told me to do were of any help because I had the wrinkled conjunctiva. Now that I have a smooth ocular surface...everything seems to help. I am thrilled not to have the redness, burning and dryness.
I have meibomian gland dysfunction (I do the warm compresses and lid massages in the morning and evening). I have delayed tear clearance (I irrigate my eyes with Unisol morning and night to get rid of the accumulated debris due to the delayed tear clearance...this has really helped).
I also use Patanol once or twice a day followed by a cold compress. Again...this never seemed to help before the surgery...now it makes my eyes feel even better.
You really should find out if you have conjunctivochalasis...if you do have it and get it fixed it could really be the key to getting everything under control. I still don't know why all of the other doctors I saw missed it.
What is the name of your doctor?

Joy

Hi Amy and Lulu,

I have had bad few days. I am just not healing up. Right eye felt itchy Friday and noticed on Saturday much redness. I think it is eye infection. I started myself on antibiotic ointment. I did call the docotor's office and after finally after multiple tries I talked with a nurse. She didn't even check with the doctor and just told me to keep using the ointment until appotinment( which had been scheduled earlier)

I have appointment with same eye doctor that has been rude to me, for tommorrow. I have to drive and hour and then wait an hour to see him. Usually exam is less than 5-10 minutes and really I am not expecting much. If he could at least tell me why I am having so much pain.

My pain is more in the upper part of my eye now. It feels like a skin burn but it is in the eye. He only sees punctate keratitis. I think sclera is burnt but it doesn't stain with flourescein. It feels like upper part of my cornea and whole upper part of sclera is burnt. Light causes more pain. I cannot stare more than few seconds at anything because it feels like I am staring into light bulb. If I don't get ointment in every 4 hours I am in severe pain. The pain will not let go. The pain would be comparable to skin burn that tightnes with dryness, It keeps me hostage especially when I am trying to hold conversations with others. My eyes are so greased up it does not even feel like eyes.

Amy and Lulu you have burning sensation of eye. What kind of sensation is it? Could you describe it? I would like to know if it is at all similar or different than mine. Do you have to use ointments during the day too?

I am trying to keep it together but I am very sad all the time. I am quite and speak so softly that others think I am mumbling. This was never me. I worked out all the time. I was very intelligent self-confident person. I loved my life. Now I am in such dark place I am not sure how I can find my way out. I am worried about my job. I have very high stress job and my eye need to heal for me to function. What do I do?

As I am typing this I realize the pain is back again now. I blink my eyes and realize my eyes are dry again. I cannot believe the misery I am in. There is no one that can restore me back to myself except for almighty.

If I could get just few drops of tear I could be happy again. I am going to find another doctor if he is rude again.

Amy and Lulu, do you guys any reflex tears in the moring with yawning?

Hi Steve,
Do you live anywhere near Tampa, Florida? When I was researching my problem, I found 2 doctors who were dry eye corneal specialists. Dr Tseng in Miami(the one I ended up seeing) and Dr Maskin in Tampa.
I actually corresponded with someone who was a patient of Dr Maskin and he helped him enormously with his eye problems. Both doctors have very informative websites.

Lulu-
That is great that you found a Dr that will listen and one who is thorough. So she is having you quit the Patanol, is that right? She is having you do lids scrubs and warm compresses. Anything else? Did she prescribe Doxy or anything? Also, for the lacrimal dysfunction, what did she have to say about Restasis? Was she able to give you any sort of answer as to what your prognosis is and if this will get better with time? I know these are a lot of questions. My Dr probably did a tear break-up (I had lots of different colored dyes) but I didn't ask the results. I think I am definitely more lacrimally affected (sp?) He never mentioned otherwise except to say that he didn't seen plugged glands or clogged oils.
Not sure why I got these sinus symptoms lately, but they seem to be getting better. Glad to get off the Pred on Friday (well, at least to tapering dose)
In regards to oral contraceptives, I have not been on them in years. I never had a problem with dryness when I was on them either (8+ years ago) I had heard of that same ocular dryness problem too which is why I am definitely not considering them now. Thanks for the info though.
Glad you had a good appt. Keep me informed. Let me know what she says next time about conjunctivochalasis.

To Prowley......"Joy" ha ha
I actually did think you were male!!! Sorry about that. ;) So glad that your eye is so much improved after Tseng's surgery. When you say you have poor tear clearance, does that mean that your tears well up in your eye without draining? I'm not clear on that. Thanks for all your help and advice over the last few weeks.

Steve-
I hope you have a good appt tomorrow and find this Dr to be informative. If he can't help you, ask him who can. I'm sorry to hear of the burning pain in your sclera. My burning pain is from generalized dryness. It just feels like I need to blink all the time. It is the feeling you get when you try really hard not to blink and then you just have to cause you can't hold it off any longer. Usually during the afternoon is when I feel this the most. Nights are still bad (even with Pred) I awaken to turn over or something awakens me and my lids don't roll up over my eyes easily. My eyes are very dry. Sometimes I use my fingers to help my lid roll up. My worse fear is that I am going to get an erosion or ulcer sometime from the nighttime dryness. I just wish it would get better. In answer to your question, I do get some reflex tearing usually after the 3rd or 4th yawn. I purposely yawn before bed (when I'm dry) or in the AM to produce wetness to start the day. I took it all for granted before.

Take care and let us know how your appt goes. Keep your chin up.

Amy

Thanks you Amy, Joy and Lulu for all the information and concern.

I will look at Dr Maskin's website. I did email Dr Tseng and he did reply quickly.
I will need to get more information from him before I decide about visiting him. Thank you again for your information Joy.

I will let everyone know how my visit goes tommorrow.

Steve

Amy,
I just know that the with delayed tear clearance I sometimes get debris accumulated in my eye so the Unisol irrigates it out...but again since the surface is now smooth it doesn't bother me that much. Tears do not well up in my eyes...but last year I had a blocked tear duct and tears did well up in my eye. I had to have it opened up by having a small tube put in it for a couple of months (you couldn't see the tube but it had to stay in the punctum for that amount of time so it wouldn't close up again. Little by little I'm getting everything fixed. That was done by a local oculoplastic surgeon. It seems like when you have something wrong with the function of your eye you get related eye problems because that area is so delicate.


Steve,
Yes, these eye problems affect your personality. My husband says I'm like a different person because I'm not thinking about my eyes burning and being inflamed. When I had the blocked tear duct last year, I was worried about tears running out of my eye. Now I can actually enjoy having dinner with friends and having business meetings without worrying about my eyes.

Good luck
Joy

Steve-
I'm so happy that you corresponded with Dr Tseng. When I emailed him once, I got a reply in minutes!! What the heck.....was he just sitting at his computer?? :p Ha Steve, I just know you will find help. I'm hap