Hello and I hate my red eyes!!

[GreekGirl]

Hello,
I've finally decided to write a post to see if anyone has anything they can suggest to help me (although from what I can see, many of us are in the same boat!).

I've had dry eyes for at least 20 years (early 40s now). They have been a bit better, they have been worse. Sometimes they have been so bad that I wake in the night with sharp pains in my eyes. There were times when I woke in the morning and had to force eye drops in because I couldn't open my eyes. I'm so fed up of people commenting on my red eyes.

I've tried many things (I think) and seen many doctors in Greece and in London. I've tried Restasis for over a year (nothing), Omega 7 oils supplements, vitamins especially for eyes, plugs, hot compresses, steroids.... Because I feel like I've had so many dry eye issues over the years, I'm even confused what my current problem is. I know I have low tear production but I believe the lipid part of my tears is currently ok (I've had tablets to increase the lipids in the past).

My eyes are marginally better at the moment but they are so sensitive. I'm on Cyclosporine 1% twice a day. I use a preservative free one so it has to be kept in the fridge. I've been using this for 18 months. At the start it was awful: burning eyes, very red. Now my eyes are more used to it but it's not great. My current ophthalmologist tried to reduce the cyclosporine to 0.5% but almost immediately I my eyes started drying out again and I couldn't open them after sleeping. I hate that when we have the heating on or when their is air conditioning, my eyes are just red. I don't use any other eye drops (hydrating etc) as they don't make a difference and I can't tolerate them now due to the cyclosporine.

I started seeing a homeopath recently. He has given me some supplements to take when friends say are making a difference. He also wanted me to reduce the cyclosporine to once a day and use a drop called Dulciphak (from France) instead. I tried but either than combination didn't work or I'm too paranoid.... Has anyone heard of Dulciphak?

I have to go back to my ophthalmologist soon and will take my husband with me to probe and insist some more (although I have to say, this current doctor has made more progress with me than any other).

Does anyone have anything to share with me?
Thank you!

[GreekGirl]

And just to add: I've been tested for Sjogrens (negative) and I don't have blepharitis.

[chuto]

Hi, long term dry eye can cause permanent veins in the sclera and conjunctiva which would never disappear but their appearance can a bit subside when eyes are more moist. I have the same problem and I wear tinted prescription glasses to hide my red eyes. Regarding your homeopatic eye drops, does it contain any preservatif ingredient, if so I would recommend not to use it in order not to further dry your eyes. Restasis had made my scleral veins more red and my eyes more dry.

[GreekGirl]

Thank you Chuto. "long term dry eye can cause permanent veins in the sclera and conjunctiva which would never disappear" <-- I didn't know this! I will mention it to my doctor. He has said that I have some kind of film over my eyes which can be removed with surgery but he wouldn't recommend it. I'm not entirely sure exactly what he means as all my consultations are in Greek which isn't my first language and my medical Greek is not always 100% (hence the reason I need to take my greek husband with me next time).

No, the eye drops from the homeopath don't contain preservatives. the homeopath isn't keen on me using the cyclosporine because of the side effects (which he is right about. It's really annoying that one of the side effects is redness...).

I take it from the wording of your post that you don't use Restasis any more. Do you use any cyclosporine?

[SirDryEye]

What is considered to be long term dry eyes - 2 years? 10 years?

[Rebecca Petris]

Γεια σου GreekGirl Sorry for what you're going through. A few thoughts for you.

1) If you're going to be seeing anybody in the UK, reach out to a member named LittleMermaid who knows the UK dry eye resources like no one else. She's amazing.

2)

Sometimes they have been so bad that I wake in the night with sharp pains in my eyes. There were times when I woke in the morning and had to force eye drops in because I couldn't open my eyes.

When I hear this I always want to say:
- Get the first appointment of the morning so they can see what your eyes look like before they heal from the night
- Ask about nocturnal lagophthalmos
- Ask if any current sighs of blepharitis
- Keep in mind that sharp pain can literally be cells ripping off the surface i.e. baby erosions.

3) Have you tried moisture goggles or at least a sleep mask overnight? or cling film or something? Maxing out overnight moisture can help with better days.
My personal recipe for good overnight eyes is warm compress and good lid hygiene plus moisture goggle, and I get my eyes wet for awhile before opening them in the morning. For most people, some really good drops too (just not my, i don't tolerate them well).

4)

I believe the lipid part of my tears is currently ok (I've had tablets to increase the lipids in the past).

Are you still doing maintenance? Make sure at every appointment hey press on the glands and tell you whether the oil is clear and runny and whether they're seeing any inflammation....

5) Cold packs in the morning for any increased redness? chilled eyedrops? Also try lube drops 10 minutes before restasis to cut down on burning?

6) Allergies? Redness so often associated with that. Do you, and if so are you on anything for it?

Oh, and dry eye glasses. Anytime you can stand to. If it's environmental, any time spent under protection is good

Never heard of Dulciphak and, no disrespect to homeopathy but honestly, I almost never hear from anybody who found it helpful specifically for dry eye. Anything else from acupuncture to meditation to diet to chinese herbal medicine, I hear good stories now and then, but not homeopathic drops, unless I just missed those posts somehow

Anyway FWIW

[Rebecca Petris]

He has said that I have some kind of film over my eyes which can be removed with surgery but he wouldn't recommend it.

Ask them for a term for this next time. Are they talking about conjunctivochalasis by chance? (That's wrinkles in the conjunctiva which they can remove surgically, pretty simple procedure.) The only other thing I can think of would be - Oh, I wonder if they mean EBMD where they might want to remove the epithelium with PTK or something. You'd probably know if they meant that - they do that if you're having recurrent corneal erosions. See last line on #2 above. Worth asking. I might be completely wrong, just trying to figure out what could be described as a film.

[chuto]

Thank you Chuto. "long term dry eye can cause permanent veins in the sclera and conjunctiva which would never disappear" <-- I didn't know this! I will mention it to my doctor. He has said that I have some kind of film over my eyes which can be removed with surgery but he wouldn't recommend it. I'm not entirely sure exactly what he means as all my consultations are in Greek which isn't my first language and my medical Greek is not always 100% (hence the reason I need to take my greek husband with me next time).

No, the eye drops from the homeopath don't contain preservatives. the homeopath isn't keen on me using the cyclosporine because of the side effects (which he is right about. It's really annoying that one of the side effects is redness...).

I take it from the wording of your post that you don't use Restasis any more. Do you use any cyclosporine?

No I dont use any form of cyclosporine right now..

Rebecca refered to conjunctivochalasis for what your doctor might have mentioned about a film layer in your eyes, maybe he could refer to pingueculas, yellow bumps in conjunctiva over which red veins grow in general. Do you have some kind of those spots?

SirDryEye it depends on your eyes' predisposition, I had been wearing contact lenses for 15 years and also due to side effects of some medications (Accutane and antidepressants) my dryness got worse over years and after a doctor's wrong prescription of Visine to reduce my eye redness (I didnt know it was harmful since in my country it is not a common thing eye redness relievers over the counter), my scleral veins diluted and I ended up with never disappearing veins all over the white of my eyes..

[GreekGirl]

Hi Rebecca,
Thank you for taking the time and trouble to respond in such detail. I really appreciate it. I've noted down all the information you gave me so I can ask the doctor next time I go. As I mentioned before, I've tried a few doctors here and in London (when I was living there - I'm in Athens now) and the ophthalmologist I have right now is the one who has made the most progress with me. If I decide to go back to UK doctors, then I will definitely get in touch with Little Mermaid.

As to the other points you made:
1. Yes I'm aware that very sharp pains are erosion. This was a big problem with me a few years ago (when I was in an air-conditioned office and staring at a computer screen for most of the day) but I get these pains only occasionally now (thank goodness - at least that has improved). When I was getting recurrent erosions and terrible pains at night, the doctor I had then did perform PTK on me and also corrected my myopia. That was back in 2004.

2. I've had blepharitis once in the past but in the last few years, I haven't had it. I believe they check for this every time. Similarly I think they also check the meibomian glands every time. At one of my first appointments with his doctor, they said my lipids were low and I took a low dose antibiotic (doxycycline IIRC). I remember this helping a lot.

3. I tried a moisturising eye ointment for a night a few years ago but I developed an allergic reaction to it, even though it was quite a simple one without preservatives etc. I agree with you though that I need to step things up a bit at night-time and I'll be asking the doctor about this. I have wondered about nocturnal lagophthalmos but the doctor has never raised this issue. Next appointment I'm definitely taking my husband so that I have some support to raise all these issues plus help with the language.

4. As to other drops, I find my eyes are so sensitive because of the 1% cyclosporine, that I really can't tolerate other drops. The homeopath has also given me oral supplements which I take - so desperate that I will try anything!!

5. Re the film over my eyes, I will get a term and get back to you. He did say a term but it was in greek and I didn't catch it properly. It was to do with the redness though - would wrinkles in the conjunctiva cause redness?

What I really don't understand is how I can be on a strong dose of cyclosporine yet still I have symptoms? Although I read everywhere that cyclosporine increases tear production, is this correct? Does cyclosporine reduce inflammation of the eye to allow the tear film to spread more easily?

Thank you.

[GreekGirl]

Hi again Chuto, no I don't have those kind of spots that you describe. Sorry to hear about your experience with red eyes.

[GreekGirl]

Chuto - I think I dismissed your suggestion of pingueculas too quickly. Been looking in a magnifying mirror in very good daylight and I believe I might be able to see a pale yellow raised bit each side of my iris. Never heard of this before and will be asking doctor that too! Is this something that can go away?

[chuto]

Chuto - I think I dismissed your suggestion of pingueculas too quickly. Been looking in a magnifying mirror in very good daylight and I believe I might be able to see a pale yellow raised bit each side of my iris. Never heard of this before and will be asking doctor that too! Is this something that can go away?

Hi GreekGirl, pingueculas dont go away by their own unfortunately, they can be removed with surgery if the doctor accepts but since those are benign tissues, generally ophtalmologists dont accept to intervene with a surgery. But I think your Greek doctor may have suggested this, next time go to consultation with your husband to better understand what he suggests

[TARYN]

Hi GreekGirl. I had a problem with redness and a veiny appearance in the both eyes. I also had symptoms of burning and tearing. I had a pingueculas in one eye and conjunctivochalasis in the other eye which is wrinkling of the conjunctiva. When your doctor mentioned a film I am wondering if he thinks you have chalasis? That is what was causing all my problems. My doctor removed the damaged or wrinkled tissue and placed amniotic membrane over that area for quicker healing and to prevent formation of scar tissue. It solved my problems with redness and burning and tearing because I have a smooth ocular surface now.

[GreekGirl]

Hi Chuto, I did some research and I definitely think I have pingueculas. Also recall my doctor saying it was something that could be caused by the sun (don't think thats the case for me though as I grew up in the UK (where not much sun) and now in Greece, I always wear good quality sunglasses (polarised). I think dry eyes must have caused the pingueculas.

Thank you Taryn. It's nice to hear a positive story with a good outcome. I will ask the doctor about that too. Can I tell by looking in my eye if I have wrinkling of the conjunctiva? And was the procedure simple or did it require general anaesthetic?

[TARYN]

Hi Greek Girl. It depends on how slight or severe the wrinkling is. The conjunctiva is clear so it is difficult to tell if what you looking at is wrinkling or tears. The pinguecula cause redness and tearing and the chalasis caused burning and redness because the damaged conjunctival tissue wasn't allowing my tears to spread evenly over a smooth ocular surface. The procedure was simple. The surgery took aproximately 1/2 hour. I was under tight twilight anesthesia and had its done in a hospital. My eyes felt great immediately. I had redness from the surgery for about 3-4 weeks and used a steroid drop and an antibiotic drop during that time period. My eyes are white and comfortable now.