WHY is this happening?

[Raven93]

I've seen over 10 docs, and I don't have a diagnosis. My eyes are red and they burn all the time.

I recently tried cutting out coffee. For about a week my eyes make enormous amounts of tears and my glands secreted oil all day. My eyes were SO comfortable and hardly red at all. But after a week, everything dried up and I am back where I started. My glands stopped working again. Every time I think I made progress, my glands suddenly dry up again for no apparent reason overnight. And there is no telling when they will come back.

I do lid scrubs, warm compresses, blink exercises, and every vitamin in the world. I just don't understand what is wrong with me.

[TARYN]

Hi Raven93, Like you, burning and red eyes were my 2 main complaints. I also saw many doctors who were not helpful at all. I ended up traveling to see a true dry eye specialist. I finally got the correct diagnosis and a treatment plan and ultimately I had surgery to correct the burning and redness.

[Raven93]

Hi Raven93, Like you, burning and red eyes were my 2 main complaints. I also saw many doctors who were not helpful at all. I ended up traveling to see a true dry eye specialist. I finally got the correct diagnosis and a treatment plan and ultimately I had surgery to correct the burning and redness.

what was your diagnosis?

[TARYN]

I had comjunctivochalasis in the right eye which is wrinkling of the conjunctival tissue. The wrinkling was preventing my tears from spreading evenly over the ocular surface when I blinked and I had constant redness and burning. I had pingueculas in the left eye which was also preventing me from having a smooth ocular surface. This was less problematic. This was causing tearing which was annoying but didn't bother me as much as the the right eye. Until I gotot the diagnosis I was using Patanol eye drops followed by cold compresses which was giving me some relief. But the surgery solved all the problems of burning and redness in the right eye and tearing in the left eye. The surgery was called amniotic membrane transplantation (AMT) where the doctor removed the damaged conjunctival tissue and placed amniotic membrane over the surgical area so it would heal without scarring. It's a relatively simple surgery and I felt great right away but the healing takes about 3 weeks. My eyes are clear and comfortable now.

[Guest]

Taryn said sonething important that I urge everyone to do. Find a dry eye specialist, a good one and get a diagnosis. That’s the key. Dry eye is so complex, if you don’t go to a specialist, you end up getting doctors that have no idea how to treat you. As you’re already 10 doctors deep, you understand very well what I’m saying.

I saw 8 doctors before I was properly diagnosed with floppy eyelid syndrome. I spent about a year in torturous pain, corneal erosions, eyes not closing when I sleep. Now that we have a plan, I have my life back. Im not out of the woods just yet. But I have a plan that allows me to live pain free for now. I also found out that I’m predisposed to pressure spikes in my eye. I woukd have never found that out if I didn’t go to a really good specialist. It’s a university, so all the doctors I would need to see are on staff and they take patients fast. I saw the glaucoma doctor 5 days after my pressure jumped. I have all preservative free meds, I’m doing good.

Goid luck, I hope you find someone who can help soon.

[Alix]

I've seen over 10 docs, and I don't have a diagnosis. My eyes are red and they burn all the time.

I recently tried cutting out coffee. For about a week my eyes make enormous amounts of tears and my glands secreted oil all day. My eyes were SO comfortable and hardly red at all. But after a week, everything dried up and I am back where I started. My glands stopped working again. Every time I think I made progress, my glands suddenly dry up again for no apparent reason overnight. And there is no telling when they will come back.

I do lid scrubs, warm compresses, blink exercises, and every vitamin in the world. I just don't understand what is wrong with me.

First of all I am sorry you are in pain, I can relate. How do you know you have a problem with your glands if you have not had any diagnoses? It could be aqueous deficiency or something else like CCH which Taryn pointed out.

I have seen many doctors as well and they have given me different diagnoses. What have they said to you exactly?

I would say if you have not done so already is to get meibography/lipiview to check out the state of your glands and to see if you are a partial blinker or not. Then you will be able to know what the best course of treatment is.

Echoing dowork you need to carry on and find a doctor who will give you a correct diagnosis.

Have you been tested for Sjögrens?

[TARYN]

Yes hopefully you will find someone who is a true specialist that will give you a thorough exam and treatment plan. Dowork brought up the importance of preservative free medications. My doctor has his own preservative free steroid drops that I tried in the past before I had the surgery. I am also wondering if you completely close your eyes when you are sleeping. If your eyelids don't form a seal, you might have to tape them shut or simply use a sleep mask at night to keep the moisture in so your eyes don't dry out. You need a doctor who is willing to dig deep to find what is going on.

[Raven93]

First of all I am sorry you are in pain, I can relate. How do you know you have a problem with your glands if you have not had any diagnoses? It could be aqueous deficiency or something else like CCH which Taryn pointed out.

I have seen many doctors as well and they have given me different diagnoses. What have they said to you exactly?

I would say if you have not done so already is to get meibography/lipiview to check out the state of your glands and to see if you are a partial blinker or not. Then you will be able to know what the best course of treatment is.

Echoing dowork you need to carry on and find a doctor who will give you a correct diagnosis.

Have you been tested for Sjögrens?

I do have FES. However, the first week I started sealing my eyes - things were great. And then they turned red again. And then I had my puncta occluded. Once again, for a week they were great. Then turned red again. And then I quit coffee. The exact same thing. They are MUCH worse when I don't tape them shut, but I don't know why everything works for a while, then stops.

I know my glands are working/not working because I can tell by the way they look during those days when my eyes were perfect. I can also express oil manually. I've had normal schirmers tests also, but I know from experience that my aqueous layer fluctuates as well. I've had all thyroid issues ruled out. I have not been tested for Sjogrens. I don't have dry mouth. Also, warm compresses make my eyes feel good for a few minutes then it starts to make them burn even worse all day. I've had a few random instances where warm compresses actually helped. I don't know why everything works so intermittently.

[TARYN]

Sounds like you have tried a number of treatments that work at first but ultimately don't give you relief. If you do have chalasis or pinguecula or Sjogrens you might be helped by the surgery I had.
In the past when I used warm compresses, they used to make the burning and redness worse because I did not have a smooth ocular surface due to the wrinkles in the conjunctiva. If I wanted to open up my glands, I found stream from a facial steamer much more beneficial than warm compresses. Also cold compresses always helped with inflammation in both the lids and eyes.

[Raven93]

Sounds like you have tried a number of treatments that work at first but ultimately don't give you relief. If you do have chalasis or pinguecula or Sjogrens you might be helped by the surgery I had.
In the past when I used warm compresses, they used to make the burning and redness worse because I did not have a smooth ocular surface due to the wrinkles in the conjunctiva. If I wanted to open up my glands, I found stream from a facial steamer much more beneficial than warm compresses. Also cold compresses always helped with inflammation in both the lids and eyes.

Did you have CCH in both eyes? Were you able to see redundant conjuncta folds when you pulled your lower eyelid back? I don't see any in my eyes

[TARYN]

I had CCH in the temporal area of my right eye. The doctor considered it a mild case but he thought it could be responsible for the redness and burning. I could not see it. My doctor took a video of it and enlarged it and I could see it in the video. Since he thought it was a mild case, we tried other things first like a few weeks on preservative free steroid drops, probing, compresses, IPL etc. and nothing worked. I had the surgery and it got rid of the visible veins and redness and burning. I had a few pingueculas in temporal area of my left eye. I could see them. They were not causing many problems for a number of years. When I started tearing and getting some redness I decided to have the AMT surgery on that eye. Surgery got rid of the symptoms on both eyes. The amniotic membrane helped heal the area so there was not scarring. My eyes are clear and comfortable now.

[Alix]

I do have FES. However, the first week I started sealing my eyes - things were great. And then they turned red again. And then I had my puncta occluded. Once again, for a week they were great. Then turned red again. And then I quit coffee. The exact same thing. They are MUCH worse when I don't tape them shut, but I don't know why everything works for a while, then stops.

I know my glands are working/not working because I can tell by the way they look during those days when my eyes were perfect. I can also express oil manually. I've had normal schirmers tests also, but I know from experience that my aqueous layer fluctuates as well. I've had all thyroid issues ruled out. I have not been tested for Sjogrens. I don't have dry mouth. Also, warm compresses make my eyes feel good for a few minutes then it starts to make them burn even worse all day. I've had a few random instances where warm compresses actually helped. I don't know why everything works so intermittently.

What is FES? My symptoms fluctuate as well, randomly. So I feel your frustration.