Is there a cure?

[Mawsky]

I know that there are all kinds of different reasons for DES, but after trying to deal with this for 3 years now, I've started asking myself if there are any real cures for really dry eyes. I've not cried a tear for so long, It is becoming harder to be hopeful. I try to stay possitive, and can't imagine this being my life forever....I lay awake at night sometimes thinking about all the ways my life has changed, I could never have imagined that my tears would just dry up one day. I can't drive very long distances anymore because I have to always be putting in drops, may be even more dangerous than texting while driving?!? I wonder what would happen if I was ever trapped somewhere without my bottle of tears I'm sorry for venting like this, but I would Love to feel hopeful, I have gotten better, but it doesn't take much for my eyes to really flare up. I do have good (better) days, and I try and tell myself that one day it may just get better, like one day it went bad. I'm seeing the Corneal Doc in a couple of weeks...I'll have lots of questions. Have there been anyone whoes tears returned out there?
Having a bad day...sorry
Christine

[Guest]

I know that there are all kinds of different reasons for DES, but after trying to deal with this for 3 years now, I've started asking myself if there are any real cures for really dry eyes... Have there been anyone whoes tears returned out there?

As for the cure question, I believe there will be cures someday... but many cures, for the many different causes of dry eye - we're all so different. The questino is, how SOON will we each find the cure that will fix us? 6 months? 1 year? 25 years? etc.

As for tears returning, I see your dryness is also surgery-induced, although unlike mine, yours was medically necessary. In any case, for what it's worth, in summer 2009, if I cried, my right eye made hardly any tears, and my left, maybe only 1 or 2 odd tears... my eyes would get really red, but not stream tears like they should - it was very unsettling, to say the least. However, ever so slowly, I was able to reduce inflammation of my ocular surface, and little by little, my tears came back. I'm not normal, but my eyes are way better than they were, and if I cry, my eyes will stream tears like a waterfall

So, there's hope for you too, I think.

The only advice I can give you is that when your eyes are insanely inflamed and dry like they are, baby them like crazy - no computer (except maybe 15 minutes per day to do the absolute musts like skim your e-mail), no TV (just listen to it), no reading (try audiobooks), no cooking/chopping (use a slow cooker and just take 5 minutes to toss everything in there in the morning), eat a low sugar diet with lots of fresh healthy vegies every day (but for your sanity, if I were you, I'd eat whatever I pleased at social occasions like birthdays... it's too depressing to deprive yourself at those times), and get at least 8 hours of sleep per night so your eyes get a good long break (and it helps the mental side to be well-rested too).

Try whatever anti-inflammatory treatments you can get your hands on.

ex. Restasis (try 4 times daily if need be, but so the drug doesn't irritate too much...
1) keep the vial you're using in the fridge so you can put a drop of COLD Restasis in your eyes
2) put a drop of PF artificial tears in about 15 minutes before Restasis - I liked Refresh Celluvisc for this
3) 15 minutes after Restasis, close your eyes tight and flush your lashes under the tap with cold water to wash away any Restasis residue
4) dry off with your eyes shut (since if you open your eyes too soon water will drip in and that hurts!!!!)
5) then flush each eye with a vial of artifical tears - I liked Bion tears for this purpose

ex. oral tetracycline antibiotics for their anti-inflammatory effects - I was on both doxycycline 100mg twice daily and tetracycline 250mg 4 times daily - both worked equally well for me - I also tried doxycycline 40mg per day, and that did nothing for me (although your mileage may vary)

ex. cool compresses as often as you like

ex. as often as needed, head to the bathroom, let the tap water run until ice cold, then close your eyes well, and run the cold water over them - it feels like pure bliss - dry off, and carry on with your day - repeat as often as you need (I used to do it several times an hour if needed when having a tough time of day)

Also, not sure if you're working or not - when my eyes were at their worst, I had no choice but to drastically cut back - max 4 hour shifts, and never 2 days in a row - any more than that would set my eyes back too much and I was scared my eyes wouldn't be able to claw their way back out of the setback each time.

And, totally unrelated, but get out and do stuff - if your eyes will hurt no matter what you do, you might as well get out and try to enjoy yourself, right? Whip on those Wiley X's (or whatever kind you wear), and get out there - it's good for the mental side of things since you can only listen to so many audiobooks without getting ridiculously bored, right?

[NotADryEye]

Regarding the question of a cure: Since DES is just a term that covers a host of diseases, who knows. Maybe for some of the diseases there will be a cure and for others it will just have to be something that we manage.

SAAG's advice is excellent. Don't read or drive or do anything that sends your eyes over the edge. Baby them as much as you can but do whatever you can.

Here are a few others:

Try not to even think about the parts of life you are missing out on. It's a matter of mental discipline. If you have practiced meditation you will know what I mean. If not, you might try meditation.

I like warm compresses, but not too long and not too often and not too hot. They help a lot, but your condition and mine are not the same.

Get tested for food sensitivities, low levels of various nutrients, autoimmune diseases, etc. Whatever you discover, address it religiously.

Defend your meibomian glands. It is important that whatever the cause, these little guys keep functioning as optimally as possible. This means increasing Omega 3's and consuming a better ratio of Omega 3's to Omega 6's. Keep your eye lids, margins and lashes clean. Doxy, but very low dose, 20mg daily. Prevent a Demodex or bacterial infestation.

Rest your eyes a lot. Close them whenever you need to, if you are on the phone or speaking with someone. Just close them.

If you can't drive, there may be a service in your area that shuttles people with disabilities. Maybe someone can help you research transportation. The first time I got on the shuttle I cried. I had gotten a tiny little piece of my life back, a modicum of independence. The service is provided by the county bus service where I live.

My MP3 people has toggle switches so I can feel around without having to look at it much. I love my MP3 player. It's a Sansa SanDisk.

Don't be surprised if you are not able to tolerate drops after a while. I can't use anything anymore, no PF, it's just not an option. And I used to use drops every 5 minutes, now I don't use them at all.

Pray. Have faith.

[Guest]

Try not to even think about the parts of life you are missing out on. It's a matter of mental discipline.

This is vitally important to fighting off any depression that threatens to rear it's ugly head in all this. Excellent advice - I wish I'd thought to mention it myself! This strategy helped me a LOT on the mental side of things - you just train your thoughts to NOT GO THERE. Thinking of what you can't do, thinking of what your eyes have screwed up for you, focusing your thoughts on the discomfort are FORBIDDEN. Sounds overly simplistic, but with practice, you can get really darned good at it, and it helps, a LOT!

The flip side of this is, cheesy as it sounds, train yourself to devote at least some time every single day to think of all the things that make you SO LUCKY compared to others in the world. It can be things as simple as being grateful that you are not starving and have ample food, being grateful that you have clean water to drink, being grateful that you have a roof over your head to protect you from the elements, being grateful that you live in a safe and secure country (no warlords kidnapping children forcing them to be soldiers, no epidemics of random pillaging and rape etc.) We take these things for granted, and when so much is going wrong with our eyes, it is helpful to remind ourselves of what IS good in our life... no matter how silly it may seem. It helps... it really does.

Get tested for food sensitivities, low levels of various nutrients, autoimmune diseases, etc. Whatever you discover, address it religiously.

Excellent advice. And if food sensitivity testing is too expensive, then simplify it - cut out the most common food allergens for a month, cut out sugar 100%, and see how you feel. If anything improves, even slightly, this may give you an edge at beating down your dry eye symptoms. Then you gradually add back to your diet one food at a time and see which one is causing the reaction. Free. Easy. (well, easy other than the willpower it requires... but hey, desperate times call for desperate measures!)

Don't be surprised if you are not able to tolerate drops after a while. I can't use anything anymore, no PF, it's just not an option. And I used to use drops every 5 minutes, now I don't use them at all.

Pray. Have faith.

And keep in mind that if drops are a problem for you now, it may NOT be forever... it could be that your eyes are just overexposed to them now and need time to recover before they become helpful again. Back in 2009 drops didn't work for me at all anymore - how awful! But now they do help again, so yippy for me! Same could be for you.

[Mawsky]

Oh Thank you so much, for your advice, and what you said really encouraged me!! I guess I have been afraid that because I haven't had tears to cry in such a long time, that it would never be possible again, thanks to you I know that they can come back, and they may not be gone forever. It sounds strange but when I see people on TV cry, I get pretty depressed, because I think that I can't even do that one thing that eveyone in the world can do..cry. My eyes are so up and down, and I know that inflamation is a key to it all, so your "tips" are wonderful. I'm going to see the specialist next week, and will be asking him about the Tetracycline. Unfortunately I can not do the Restasis, I've tried it at least four times now, and it inflames my eye even worse than they are. I've recently tried putting my drops on some ice to keep them really cold, and I hope that isn't wrong, they do feel pretty good when my eyes are acting up, the cold helps. I've contiued working and my eyes can be pretty bad at work, but I get through it, and forutately don't work full time so that helps. I can't express fully how much your words meant to me, we all need hope.
Christine

[Guest]

So glad you found it helpful Christine! Hang in there!

[NotADryEye]

Mawsky,
Everyone is here to help as much as we possibly can. We're all in this together.
One other thing, if you havent' been tested for Sjogren's consider getting tested. Not being able to cry, produce tears, is one of the symptoms.
Please keep us posted.

[Mawsky]

Hi to all you very encouraging people!!! I went to see the Corneal specialist I've been seeing yesterday, my eyes have been especially good the last two days, he said my eyes looked amazingly well, my cornea looked healthy and he said my eyes looked moist with a good tear film???? I told him that I have some really bad spells, but don't know what the trigger is, but felt that inflamation was at the root. I asked him if he thought it were possible for my eyes to just recover to the point where I would be as I was before...his answer was NO! I was a bit surprised by it, I asked him if he had any thoughts as to what may help me, he said that his only suggestion at this point was cautery, as I had a DCR done many years before. He said they would do them one at a time, and that I didn't need to come back for a year. It was rather shocking to hear that his experience is that DES does not ever go away, he did say I may get to the point where I would not use tears as often, but would need artificial tears for the rest of my life. Any thought on that?? I'm chosing to think that I can recover, at least much better than I have been in the past. It's easy to get down about this, but I'm thankful that I was feeling more possitive after your posts before I went to see him.
"feeling better thanks to you wonderful people"
Christine

[Guest]

I asked him if he thought it were possible for my eyes to just recover to the point where I would be as I was before...his answer was NO!...It was rather shocking to hear that his experience is that DES does not ever go away, he did say I may get to the point where I would not use tears as often, but would need artificial tears for the rest of my life. Any thought on that?? I'm chosing to think that I can recover, at least much better than I have been in the past.

Who knows? Maybe he's right, and maybe he isn't. However, odds are high that your eyes WILL improve significantly with good treatment, and THAT will be worth celebrating regardless of whether or not you end up your pre-dry-eye self... savour the victories, make the most of what you've got.. it's all you can do!

[MartyM1985]

Who knows? Maybe he's right, and maybe he isn't. However, odds are high that your eyes WILL improve significantly with good treatment, and THAT will be worth celebrating regardless of whether or not you end up your pre-dry-eye self... savour the victories, make the most of what you've got.. it's all you can do!

Agree with this. I'm on month 8, which is about 80% better than I was during month 1. Still getting better.

Take control of your situation. Be patient. Be good to your body and your eyes. You can get better, but of course, there are no guarantees.

[Faith1989]

Marty,

I am so glad to hear you are so much better! Are u still just using Restasis twice a day?

[Gemma90]

I can relate to your post Christine! Every night when I go to bed it always crosses my mind how my life has changed and how it should be, if it will ever get back to how it was. I also feel a bit bitter tbh, I wouldn't wish this horrible thing on anybody but to think about how I don't know a single person in real life who understands what im going through, and that other 22 year olds are living their lives to the full right now and I don't know what each day will bring with this.

Im a bit worried that your specialist said your eyes can't go back to how they were, I'd like to think we can all have hope. But glad your feeling more positive overall and its good that the tear film and cornea look healthy.

[nitrodrops]

I know that there are all kinds of different reasons for DES, but after trying to deal with this for 3 years now, I've started asking myself if there are any real cures for really dry eyes. I've not cried a tear for so long, It is becoming harder to be hopeful. I try to stay possitive, and can't imagine this being my life forever....I lay awake at night sometimes thinking about all the ways my life has changed, I could never have imagined that my tears would just dry up one day. I can't drive very long distances anymore because I have to always be putting in drops, may be even more dangerous than texting while driving?!? I wonder what would happen if I was ever trapped somewhere without my bottle of tears I'm sorry for venting like this, but I would Love to feel hopeful, I have gotten better, but it doesn't take much for my eyes to really flare up. I do have good (better) days, and I try and tell myself that one day it may just get better, like one day it went bad. I'm seeing the Corneal Doc in a couple of weeks...I'll have lots of questions. Have there been anyone whoes tears returned out there?
Having a bad day...sorry
Christine

Hi Chris,

I am in the same shoes as you 3 years ago....where my DES worsen till Schrimmer test measures only 1mm (L) and 4mm (R). Since i am the main income earner, I am pretty worried that i will go blind and become a burden to my missus.

I share my thoughts and pre-empt my missus of my situation. Turned out, she bravely told me 'if you ever turned blind, so long you don't mind 3 simple meals a day, with a simple lifestyle, i shall be able to support you for the rest of your life'.

Her words and encouragement has helped me to think positively. During the last 3 years, i have tried all sorts of combo, eye drops, omega tablets, eye compress, plugs and restasis. Today my Schrimmer scores are 17mm (L) and 17mm (R). From 16 ear-drops per day reduced to 4 ear-drops per day.

On top of this, i have resumed back my sports activities living normally.

There is no point looking back at the bad decision of going for lasik. I can only look forward how to battle this DES.

My DES receipe as
1.) Morning uses BelphaGel to wash my earlips
2.) Morning 1 drop of Restasis
3.) Morning Eye Compress
4.) Morning 2 x BioTears capsules
5.) Afternoon 1 drop of BionTears
6.) Late Afternoon 1 drop of Bion Tears
7.) Night 1 drop of Restasis
8.) After dinner 2 x BioTears capsules
9.) Before bed, apply Duratears gel

I strongly recommend BioTears capsules, i felt the differences.

On top of this, diet is very important. In office everyday
- 2 litres of water
- think 3 cups of green tea (anti-oxidants)
- limit to one cup of coffee and tea everyday
- mostly soupy or salad for lunch


Last but not least, there is still Sclera lens and Serum drops, which is not end of the world!

Think positively, and live fully!

[patientpatrick]

Hi Chris,

I am in the same shoes as you 3 years ago....where my DES worsen till Schrimmer test measures only 1mm (L) and 4mm (R). Since i am the main income earner, I am pretty worried that i will go blind and become a burden to my missus.

I share my thoughts and pre-empt my missus of my situation. Turned out, she bravely told me 'if you ever turned blind, so long you don't mind 3 simple meals a day, with a simple lifestyle, i shall be able to support you for the rest of your life'.

Her words and encouragement has helped me to think positively. During the last 3 years, i have tried all sorts of combo, eye drops, omega tablets, eye compress, plugs and restasis. Today my Schrimmer scores are 17mm (L) and 17mm (R). From 16 ear-drops per day reduced to 4 ear-drops per day.

On top of this, i have resumed back my sports activities living normally.

There is no point looking back at the bad decision of going for lasik. I can only look forward how to battle this DES.

My DES receipe as
1.) Morning uses BelphaGel to wash my earlips
2.) Morning 1 drop of Restasis
3.) Morning Eye Compress
4.) Morning 2 x BioTears capsules
5.) Afternoon 1 drop of BionTears
6.) Late Afternoon 1 drop of Bion Tears
7.) Night 1 drop of Restasis
8.) After dinner 2 x BioTears capsules
9.) Before bed, apply Duratears gel

I strongly recommend BioTears capsules, i felt the differences.

On top of this, diet is very important. In office everyday
- 2 litres of water
- think 3 cups of green tea (anti-oxidants)
- limit to one cup of coffee and tea everyday
- mostly soupy or salad for lunch


Last but not least, there is still Sclera lens and Serum drops, which is not end of the world!

Think positively, and live fully!

Damn from schrimer scores of 1 and 4 to both 17!!! How did that happen? I'd think you'd be free of drops with that much moisture. Seriously how did that happen?

P

[Guest]

Nitrodrops, your story is AMAZING! Thanks for sharing that, and I'm so happy for you!

re: Biotears ingred. list...
Vitamin A (1000 IU), Vitamin C (100 mg), Vitamin D3 (50 IU), Vitamin E (32 IU), Vitamin B6 (8 mg), Magnesium (20 mg), Proprietary Blend (802 mg), Mucopolysccharide (50 mg), Turmeric Extract (100 mg), Lactoferrin (10 mg)

Haven't tried anything like this... might give it a go to see what happens... I feel like I'm moving forward, but no idea how far my eyes are capable of going, and sometimes improvement come from the most surprising places (ex. giving up wheat in my case)