DRY EYE VETERNS!!! Advice please

[nori2015]

I'd hope that they'd allow you to try serum drop without confocal microscopy. Frankly, even if the results of that procedure show that everything looks normal (i.e. that the nerves are innervating the cornea properly), it doesn't mean that those nerves are functioning properly.

I used serum drops for many years and found them helpful. As long as they are kept sterile, it's highly unlikely that you'll have any problems from trying them, and if they help you, then what a bonus!

Thanks SAAG. I'll ask and see if its possible to be prescribed some. I'm in the UK and I don't know if they are given very often here.
Can I ask you what has helped you the most, or what your routine is now? I know you have suffered for a long time, maybe you have some helpful tips on what does/doesn't work.
God I hope restasis does the trick

[Guest]

Can I ask you what has helped you the most, or what your routine is now? I know you have suffered for a long time, maybe you have some helpful tips on what does/doesn't work.
God I hope restasis does the trick

I'm currently using Restasis 3 times daily, Genteal ointment (not the gel or drop) at night, Refresh celluvisc as needed during the day, and Bion Tears to get my eyes unstuck when I wake up after sleeping. Also, avoiding wheat helps - I seems to have some kind of sensitivity to it, so obviously this wouldn't help everyone I have all 4 puncta cauterized shut. I wear Wiley X moisture chamber glasses most of the time too.

And I'm living/travelling in the tropics (humidity around 80% every single day) - this does wonders for my comfort level - it's like having my eyes in a soothing bath all the time.

How did I get here?

Aside from my current regimen, I used to use 100% serum drop several times a day, naltrexone drops twice a day (if you do a forum search you should be able to find some of my posts on that), doxycycline 100mg once daily (for MGD), warm compresses for MGD etc. I also worked obsessively as much as I was able to on building an online business that would allow me to work from anywhere in the world... it was tough going, but I managed it. Now I work online self-publishing books, freelance writing, and selling courses I've created (all under a pen name), spend hours every day on the computer, and can tolerate it just fine. Sure, I'm not normal, far from it... but at least I can travel full-time comfortably in the tropics where my eyes feel better, and I don't have a boss to answer to if I need to give my eyes a break. (Sure, it's a drastic solution to my eye problem, but an effective one, and quite fun.)

And even if one starts off feeling way too overheated in hot humid environments, your body can adjust if you give it time.

I've been through hell, but come out the other side doing ok. So hang in there - you'll come out the other side eventually too!

Oh, and as for what does and doesn't work...

The biggest thing I've learned from these forums, and my own experience, is that you can't possibly know what will work for you unless you experiment. Even if something is useless for 99% of people, maybe you'll be one of the 1% for whom it works. So be patient, and try whatever reasonable treatments are made available to you.

[LaDiva]

Saag, I too have problems with all kinds of wheat and flour products, but have found that I can tolerate spelt. Berlin Bakery makes a good spelt bread, and there are spelt pastas and other products out there including pretzels. (Found at the health food store.) Also, I've discovered that if I rinse my eyes with saline after compresses and expression before going to bed that my eyes aren't as stuck together in the morning. Food is a definite link to my eyes being plastered shut. Bummer.

[nori2015]

I'm currently using Restasis 3 times daily, Genteal ointment (not the gel or drop) at night, Refresh celluvisc as needed during the day, and Bion Tears to get my eyes unstuck when I wake up after sleeping. Also, avoiding wheat helps - I seems to have some kind of sensitivity to it, so obviously this wouldn't help everyone I have all 4 puncta cauterized shut. I wear Wiley X moisture chamber glasses most of the time too.

And I'm living/travelling in the tropics (humidity around 80% every single day) - this does wonders for my comfort level - it's like having my eyes in a soothing bath all the time.

How did I get here?

Aside from my current regimen, I used to use 100% serum drop several times a day, naltrexone drops twice a day (if you do a forum search you should be able to find some of my posts on that), doxycycline 100mg once daily (for MGD), warm compresses for MGD etc. I also worked obsessively as much as I was able to on building an online business that would allow me to work from anywhere in the world... it was tough going, but I managed it. Now I work online self-publishing books, freelance writing, and selling courses I've created (all under a pen name), spend hours every day on the computer, and can tolerate it just fine. Sure, I'm not normal, far from it... but at least I can travel full-time comfortably in the tropics where my eyes feel better, and I don't have a boss to answer to if I need to give my eyes a break. (Sure, it's a drastic solution to my eye problem, but an effective one, and quite fun.)

And even if one starts off feeling way too overheated in hot humid environments, your body can adjust if you give it time.

I've been through hell, but come out the other side doing ok. So hang in there - you'll come out the other side eventually too!

Oh, and as for what does and doesn't work...

The biggest thing I've learned from these forums, and my own experience, is that you can't possibly know what will work for you unless you experiment. Even if something is useless for 99% of people, maybe you'll be one of the 1% for whom it works. So be patient, and try whatever reasonable treatments are made available to you.

I have noticed I feel much worse when I've been on a junk food binge....sugar, wheat and alcohol do make things worse. The absolute worst triggers are air con, central heating and fans. I bought a humidifier but it didn't help in the slightest unfortunately.

Have you found restasis helpful? Did your TBUT improve at all? If I could stop the burning feeling and the redness I'd be such a happy happy girl!

[Guest]

... I bought a humidifier but it didn't help in the slightest unfortunately.

Have you found restasis helpful? Did your TBUT improve at all? If I could stop the burning feeling and the redness I'd be such a happy happy girl!

re: humidifier

Did you measure the humidity in the room before and after running the humidifier? Because say the humidifier only raised the humidity by 2%, that won't make a difference to your comfort level. On the other hand, depending on the size of the room, you may need 3 or 4 portable humidifiers running at once to increase the humidity enough to make a difference (say, to raise it by 20 or 30% above the baseline)

re: restasis

Definitely helpful - here in the tropics I use it 3 times daily... when I go home to visit family (lower humidity), I have to increase it back to 4 times daily.

[Guest]

... I bought a humidifier but it didn't help in the slightest unfortunately.

Have you found restasis helpful? Did your TBUT improve at all? If I could stop the burning feeling and the redness I'd be such a happy happy girl!

re: humidifier

Did you measure the humidity in the room before and after running the humidifier? Because say the humidifier only raised the humidity by 2%, that won't make a difference to your comfort level. On the other hand, depending on the size of the room, you may need 3 or 4 portable humidifiers running at once to increase the humidity enough to make a difference (say, to raise it by 20 or 30% above the baseline)

re: restasis

Definitely helpful - here in the tropics I use it 3 times daily... when I go home to visit family (lower humidity), I have to increase it back to 4 times daily.

[DryInDenver]

I have noticed I feel much worse when I've been on a junk food binge....sugar, wheat and alcohol do make things worse. The absolute worst triggers are air con, central heating and fans. I bought a humidifier but it didn't help in the slightest unfortunately.

Have you found restasis helpful? Did your TBUT improve at all? If I could stop the burning feeling and the redness I'd be such a happy happy girl!

When I first started dealing with this I didn't get much help from humidifiers either. Since then I've changed my opinion and am positive I get some benefit.

In April of 2014, about 8 or 9 months into my dry eye journey we took a vacation to Florida. The humidity did seem to help. It didn't work miracles, and I was still in constant pain, but it was less pain. It wasn't helpful enough for me to buy a humidifier for each room in the house though.

Then in August of 2015, we took another trip to Hawaii. On this trip I noticed a vast difference from the humidity compared to the dry environment here in Colorado. By this point I was better at managing my symptoms and controlling my inflammation than I was in Florida (through lots of experimenting as SAAG suggests). I'd go 30 minutes without noticing my eyes, not wearing my sclerals, not wearing moisture chambers and remember thinking "Wow, I can't believe I forgot about my eyes for so long. But, put on some moisture chamber glasses stupid so they don't hurt later." So I think in combination with other things, increase humidity can make a very big difference. Because of this trip, I decided I wanted my house to be more humid and to do something about it.

I installed a whole house humidifier in our basement. There are some high ceilings in my house, so I couldn't get the humidity as high as I had hoped, but it still helps a lot. I have a couple cheap hygrometers that give me different readings but they both show improvement, It's gone from around 30% +- to about 40%. I notice quite a difference when I get home from a long day of work with fried eyes. The improvement is not immediate. It's not like I walk in and get instant relief. But after I've been there for a few hours I definitely notice that my eyes are not quite as angry.

This experience has helped me from my hypothesis that (at least in my case) dry eye symptoms are cumulative. Once you are burnt, your skin is much more sensitive to the sun. In this case, a humidifier works for me like a weak sunscreen. Putting sunscreen on a burn won’t make it feel immediately better. But, it might help it from getting worse and also might help give it a chance to heal.

The whole house humidifier has been one of the most cost-effective things I’ve tried. It was about $300 plus about $50 for tin snippers and some other tools I didn’t have to install it myself. Alternatively I could have had someone install it for $100-$200. Compared to the $ I spend on Restasis and serum drops and the relative benefits, this is defiantly the best bang for the buck.

Have you found restasis helpful? Did your TBUT improve at all? If I could stop the burning feeling and the redness I'd be such a happy happy girl!

I’m not sure if Restasis is helping me or not but I still use it at the encouragement of my doctor. Things aren’t as bad as they used to be but I don’t think much of the improvement is from restasis (but it might be). Also my doc says there is evidence it helps nerves grow so I'm still using it.

My TBUT is usually is between 1 and 4 seconds. I don’t follow it very close anymore but I feel like it was correlated with how bad my eyes hurt. Perhaps the inflammation on the surface of the eye was decreasing the TBUT.

[nori2015]

Unfortunately I don't own my own home so there's not a lot I can do in term of installing professional equipment. Saag the one I got didn't say what it would increase the humidity to, and I didn't have it measured beforehand either so that was possibly a mistake on my part.
My TBUT is 5 seconds, and I have lower plugs. Docs say both eyes are the same. However my left eye doesn't give me any trouble, my right eye constantly burns. How can this be when they both measure the same?

[Guest]

Unfortunately I don't own my own home so there's not a lot I can do in term of installing professional equipment. Saag the one I got didn't say what it would increase the humidity to, and I didn't have it measured beforehand either so that was possibly a mistake on my part.

They can't predict how much it will raise humidity. A home with forced air heating and an HRV on 24/7 will be harder to raise the humidity in. A tightly sealed home withOUT an HVAC running all the time is probably easier to raise the humidity in (because whatever humidity is produced by the humidifier will stay put longer).

Anyhow, it's not like it's too late. Buy a cheap device to measure the humidity before you turn on the humidifier. Then let the humidifier run for a few hours and re-measure the humidity. Then you'll have your answer

And if you can't install professional equipment, it doesn't matter - buy several portable devices and use those instead. Say you spend most of your day in the living room - run 3 or 4 larger portable humidifiers (i.e. as opposed to the little bitty ones) in there at the same time and it's bound to increase the humidity significantly. Ditto for the kitchen, or bedroom.

My TBUT is 5 seconds, and I have lower plugs. Docs say both eyes are the same. However my left eye doesn't give me any trouble, my right eye constantly burns. How can this be when they both measure the same?

Who knows. Lots of potential reasons. Perhaps at the moment the doctor measured it they were the same... doesn't mean they are always the same. If they'd measured it at some other time when your bad eye was doing horribly compared to the good eye at that exact moment, the odds are higher that the test would pick that up and reflect it in the results.

And maybe your bad eye WAS doing worse than the good eye at the moment your doc did the test, but maybe it wasn't a large enough difference for the test to be able to measure the difference (i.e. it might have been a large enough difference for YOU to notice it, but not the test)

[nori2015]

[QUOTE=SAAG;

Anyhow, it's not like it's too late. Buy a cheap device to measure the humidity before you turn on the humidifier. Then let the humidifier run for a few hours and re-measure the humidity. Then you'll have your answer

[/QUOTE]

Great idea! Ill get on to it. Thank you for all your advice.

[NatUK]

Hi all - can I ask what your consultant said was wrong with your eyes. Is it nerve damage? Is it MGD or recurrent inflammation? my consultant says my meibomian glands aren't expressing enough and are a little infected so I have been on 50mg doxycycline for 3 months now. He says it should clear up which will stop the dryness as my eyelids are inflamed too. He said it was a long road though...

[nori2015]

Hi all - can I ask what your consultant said was wrong with your eyes. Is it nerve damage? Is it MGD or recurrent inflammation? my consultant says my meibomian glands aren't expressing enough and are a little infected so I have been on 50mg doxycycline for 3 months now. He says it should clear up which will stop the dryness as my eyelids are inflamed too. He said it was a long road though...

They never gave me a name for it Nat. Which is what's frustrating as I don't know what I should be treating myself for. All they did say was that my tears were evaporating quickly, that I definitely did not have mgd or blepharitis and that everything else looked fine. In terms of nerve damage they've never mentioned it, I don't think that's something I can find out without getting a confocal microscopy but please correct me if I'm wrong. I assume if there is damage the clinic will be in no rush to tell me that.
They have not been great with that sort of info. I'm hoping when I go to moorfields they'll tell me more. They didn't perform the surgery so they have nothing to lose by being brutally honest.
Your new regime sounds very promising, hoping it works for you and that you'll soon be able to put all this behind you.

[Jovver]

Just noticed his thread. I uses to be a regular here, but I don't come here at all now as this is a time in my life I'm trying to forget for obvious reasons!

My Lasek was just over 2.5 years ago, and although I still have symptoms, they have greatly improved (not to the extent I am normal, but certainly to the point I would have sold my soul for a couple of years ago).

Time seems to be a healer, and I haven't used drops or night time gel for a little under a year. Drops never seemed to help at all, and I couldn't tolerate them.

I still have scratchy or itchy eyes occasionally but those bad days seem to be interspersed with good days now and the bad ones are becoming more and more infrequent. My eyes now water in the cold (yay) and look just fine, not red at all. The corneal erosions have subsided but I still tape my right eye shut at night as I found out I slept with it partially open. Since I started doing that the erosions have more or less stopped.

If it does take up to 5 years for the nerves to for back, I'm hoping I have a little more improvement. It sounds as though your eyes are improving and as you've no doubt been told they should get better with time!

Hang on in there!

Apologies to the people who have messaged me, I'll respond today.

[nori2015]

Thanks Jovver! Yourself and all the other improvement stories are a great help. I'm 10 months out now and still suffering but very hopeful that things will get better. The redness is driving me mad!!!! Could live with the constant burning if I could have white eyes again.

Started restasis yeasterday everyone. Obviously there's no improvement yet as it can take months to work, if it works at all, but on the plus side there's no stinging or anything so at least it's not made things any worse just yet. I'll keep you all posted. Moorfields on Thursday for a second opinion, just in case the laser clinic has missed anything!

[Ericska]

Hi Nori,

I am using Restasis, taking Omega 3 and Flax and use artificial tears every day and gel at night. I have been told and have read that if you use Restasis, you can't get plugs. For some reason they do not work together. I started Restasis last September and understand it takes 4 - 6 months if you're going to notice a difference. I am holding off on the plugs until I figure out weather the Restasis is actually helping me.

I am Aqueous Deficient so what helps me may not help you but if you're going to start the Restasis, start as soon as possible.

I also do cool compresses and hold the cold pop can to my eyes like DryinDenver as I too work on the computer all day. It's amazing what helps in a pinch. I find the cool actually helps me better than the warm. The warm is supposed to help unblock the glands and the cool is for irritation.

I have yet to find something that helps me during the night. The gel isn't enough. I find i get up at least twice a night to use drops otherwise I wouldn't make it through the night.

I'm also trying to be a little more gluten free as I understand that this causes internal inflammation as well. I'm not sure if it's the Flax capsules or the Restasis but since I started taking the flax capsules (3 a day), I have noticed a slight improvement. I see my opto in March to see if the Restasis has started working yet or not.

How do you get through the night?