I think I'm gonna explode.

[dominorose]

Time goes by, and my eyes still hurt like HELL. I've been suffering for nearly two years now, and even if my doc is the best I can find here (I live in France), he doesn't have much more to offer to help my symptoms.

My MAIN problems are :

- Chronic, white, mucus balls/strands and "gooey" eyes
- TOXIC, burning, stinging feeling on the cornea

More than dryness, those symptoms just CAN'T stop. My doc keeps telling me it's just "because of dryness", but I want to find something, anything to be less in pain. Because it HURTS so much :'(

Current regimen:

- Omega 3
- Doxy 100mg
- Cyclosporine 0.005%
- Blephagel
- Castor oil drops
- Cationorm / Vismed / Hylo Confort eye drops

I know my symptoms are not very common, and it's hard to find someone experiencing the same things... But if someone here has anything to share, I'm really interested. I'm a mess.
Thanks

[waterbee]

Hiya,
I totaly understand how the stinging sensation
Wears you down, especially over time.
I'm not sure if it's of any help but my optician
Told me that the burning sensation comes
From the tear film being damaged (or having gaps
In) which let's the dry air in, and it caurses irritation.
Tear film holes are made dramatically worse
By the eyes being stuck together in the morning and them
Being prised open, she suggested correcting
That issues as a first prority would benfit me
Greatly and I've found it has worked wonders as a first step
To gaining some relief. I corrected this issue
By using the most thick eye gel at night I coud find and adding
It again through out the night in large amounts, (if get through a tube every few days)
Gradually my eyes got some relief and the tear film healed, this advice she
Gave me really helped improve the stinging and even now I use more
Gel then I really need a help to make sure the issue doesn't return.
Hope this helps.
Waterbee x

[grant555]

hang in there domino. i used to feel the same way. even though i'm really far from normal, things eventually might calm down.

with so much mucus, it seems like it could be allergies? have you ruled that out completely?

[LaDiva]

Hi Domino,
Try a lubricant ointment for night time and use goggles during the day. The surface of your eye needs to heal, and that is one of the reasons you have so much mucous. (I've been there too and know how you feel.) You might need to experiment with the ointment. Systane Nighttime worked the best for me as I think it contains less mineral oil than some of the other ointments. My eyes did not start getting better until I used ointment and wore goggles. I don't need ointment anymore, but still wear goggles. It will take awhile for your eye to heal. You might try hot compresses and expression if you are not already doing that. Best wishes to you.

[ebel]

Hi Domino,
Try a lubricant ointment for night time and use goggles during the day. The surface of your eye needs to heal, and that is one of the reasons you have so much mucous. (I've been there too and know how you feel.) You might need to experiment with the ointment. Systane Nighttime worked the best for me as I think it contains less mineral oil than some of the other ointments. My eyes did not start getting better until I used ointment and wore goggles. I don't need ointment anymore, but still wear goggles. It will take awhile for your eye to heal. You might try hot compresses and expression if you are not already doing that. Best wishes to you.

Yes, Domino, the goggles make a diference. They are not comfortable and I feel uglier when I use them (Even though, a few people told me they are fashion. Definitely, I don’t agree). But with them I can have peace. I can forget my eyes a little bit. I use less (much less) eyedrops and I feel my eyes healthier. I’ve never tried scleral lenses. While nothing appears to solve my problem in the eyes, I keep using the goggles.
The main difficult is to find one that offers the protection that you need. I use the WileyX Brick, but I looking for other options.

[waterbee]

Yes I was told 6 to 8 weeks for the film to start to heal. My Goggles have been so valuable to me, even though they transform me into a complete dork

[Faith1989]

A doctor has never given you a mild steroid like FML to ease the pain a little? I couldn't imagine not having a steroid on my hard days.

[No tears in ATL]

First thing I would do? Get off the cyclosporine. Is this the same drug that is named Restasis here in the U.S.? That stuff burns terribly--I was in pain for an entire day after using it, even after weeks, and no, I did not get used to it ever. I have super sensitive eyes (almost any eye drop sends me into an inflamed mess), so I really do feel your pain here.

Castor oil can also be irritating to some people, so maybe eliminate those also. I think you've got to keep it as simple as possible with stuff that goes in your eyes--the more artificial stuff we put in them, the more upset the balance becomes, for a lot of folks.

Just my personal experience, anyway. Moisture chambers as often as possible, serum if you are really bad off, and the most gentle of drops you can find, maybe 4-5 times a day at most, and ice packs do help.

[LaDiva]

LOL! I am a dork too waterbee! Thanks for making me smile! People have told me that I am very "fashion forward". LOL!!!

[dominorose]

Thanks for your answers. No Faith he didnt prescribed FML, I tried once but it mademy eyes even worse so I stopped using it. My doc told me to do a cure of Azyter to calm things down and it helps a little but not so much ànd it burns like crazy...

Faith why haven't you tried sclerals yet?

LaDiva, I already use Systane Gel but Ive seen it contains a preservative so stopped it...is it safe for long term use?

I wanted to buy the small Zienna goggles, i bought the old model this summer but they are too big for me. I would love to try them on but in France the only goggles option are motorcycle/sports glasses... I am ok to stop wearing makeup, but not for this. My sanity depends on it lol.

NTIATL : Yep, castor oil burns a little when I use it, same thing for cyclosporine... But I'm so afraid to have a "rebound" if I stop them! But you're right, the more I put things into my eyes, the worse. And I don't have any prescription for serum... My doc wants me to try sclerals first :/

[DryMichael]

Hi Dom,
What about your diet? It does a lot. Try to find your intolerance for some foods (intolerance, not allergy !). They sell some do-it-yourself kits on the internet, which is better i think, it's too expensive in hospitals (at least in my country, it might be different in France). If you drop some foods you don't tolerate well, it might help you with the inflammation & help your MGD. It's also a good idea to test yourself on Coeliac disease. I heard there might be connection with eyes.

Also eat more fish (Omega oils and vitamin D) & buy some quality Omega 3 & flaxseed capsules and take 3+3 every day. By quality I mean - don't buy it in your pharmacy, they usually sell only shi*y stuff. Do your research and buy it online - fitness e-shops are a great source I think. And take your time, these things needs your patience. But you know it already

I don't know about Cyclosporine and castor oil, have no experience with it, but maybe if you are not feeling better, i would suggest to stop using them. Try for example 3 months of healthy diet, omega 3 and preservative-free drops only (and maybe small dose of Doxy). Be careful also with Blephagel, it always irritates my eyes when I use it. But eyelid hygiene is definitely important.

Good luck

[waterbee]

i use the NEREUS Ziena Brand with a clear lens for just being in the house, they are a little big, (i'm quite petite anyway and even regular sunglasses from high street stores always turned up a little big on me.) so I simply just push them back up all the time (then wait for them to fall down after a 5 mins and repeat!) i don't really notice i'm doing it now, its just wonderful to get bit of rest.
I miss wearing makeup, i can understand why you don't want to stop wearing it, feels like a part of your ID you want to keep safe, but it might be worth just trying to limit anything you put on your eyes and see if it helps? I try just wearing lipstick and blush if on a special occasion i have to attend (the natural ones that are promoted as being healthy and such for skin) though i sure miss my false eye lashes and eyeliner, i decided to stop wearing anything on my eyes for a year to see if it helps. (quite liberating to tbh )

[dominorose]

DrMichael : I've cut out gluten, wheat, dairy, all sugars, all processed foods, all nuts, eggs, and only use coconut and olive oil. Been on this diet for 3 weeks only so maybe I should wait longer? I still drink TONS of Coca Zero though, but already planned to cut that too on the 1st of June (one thing at a time...)

For the Omega 3's, I use these, but I think I should take more than just one pill ?

http://www.nutrigold.com/Triple-Stre...ega-3-Fish-Oil

[dominorose]

Waterbee : will check the goggles, thank you. I haven't worn make up for more than a year now so I understand perfectly

[LaDiva]

Hi domino,
The Systane nighttime ointment we get in the states is preservative free. I don't think anyone should use any of the ointments for prolonged periods. I used it until my photophobia cleared up, probably about two months, but I don't remember exactly. I'm not sure we are talking about the same Systane. The nighttime ointment is in a little tube.

The only oil I can tolerate is olive oil. It does take awhile for diet to help. I found that I cannot tolerate any form of sugar or sweeteners, including stevia. I had a bunch of food allergy tests done, and was not allergic to any foods, but I do have big food sensitivities to rosacea trigger foods, foods high in histamine and histamine liberators. It is a big pain in the yazoonie and doesn't leave much to eat. I would love a grilled cheese sandwich or a big piece of warm fruit pie with vanilla ice cream melting through the cracks...sigh.