DRY EYE VETERNS!!! Advice please

[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.

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.

[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

Should I demand a confocal microscopy? If nerves is the issue, maybe I should be looking for serum drops?

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!

I still do not understand why people use artificial tears in hoping to get better. They provide a temporary relief. A typical eye drop will provide you with a 3 min relief. That's it. They don't treat the cause of dry eye.

Perhaps this is true in your experience, but be careful before you extrapolate what has been true for YOU, to all of us. There are many different causes of dry eye, and it isn't always an easy thing to figure out what that cause is. Artificial tears can be a great help at minimizing inflammation and increasing comfort in the meantime. No, they don't lower inflammation the same way a steroid or cyclosporine drop does, but by reducing friction on the ocular surface and reducing irritation, they indirectly CAN reduce inflammation. If you'd like some reputable sources of reading on the topic, I'd be happy to provide you with plenty of it.

Furthermore, for some of us, the cause cannot be reversed. The damage is permanent. So no, a person in that situation doesn't use artificial tears naively "hoping to get better"... they use them because without them they can't function as a productive member of society at all.

They might bring temporary comfort but eye drops dont reduce inflammation. Having a healthy natural tear film does. My point was I see a lot of people spending so much money on buying every kind of drop and hoping it would somehow magically make them better. In my opinion the only drops that are worth using are the ones with phospholipids as they bind to the water layer.

You don't give us enough credit saying we hope it will "somehow magically make them better."

Would you mind sharing your credentials and training?

[nori2015]

Emustil arrived today. I hope they help!

[nori2015]

Yeah I've been using PF drops over 90% of the time and I find no difference I'm afraid. I haven't tried emustil, I'll be going to moorfields next month so I'll enquire then.
Savino, I bought systane balance just yesterday, they are not PF but I'll use them once a day to see if they make any difference.
Ill try anything. While I know I should accept this could be permanent, and I know I'll be ok if that is the case, right now I really want to try everything.
Restasis begins next month as it is being ordered from the states.
Any brand recommendations for nighttime goggles?
Thanks everyone, all of your advice means so much to me.

[rm14dp]

Hello. I have found that using drops that are preservative free helped stop a lot of the burning sensation. Have you tried Emustil eye drops from Moorfields ( local chemists can order it ) its an emulsion and i found it really helps. We are all individuals and heal at different rates just stick with it only time will tell.

[savino]

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[savino]

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[DryInDenver]

Hi Nori,

I'm 2.5 years post-lasik and I can remember being 9 months post-lasik like it was yesterday. Well not exactly like it was yesterday because yesterday was a great day and when I was 9-months post-lasik good times were harder to come by. Nine-months post is a difficult period. At two months out, the doctors told me I'd be better at the 3-month mark. Okay, hope and expectations of healing. I can do this. At 4 months out they told me I'd be better by the 6-month mark. Well, still hopeful, still should get better. Then at 9-months out I was like, "Oh, no. I think this is – no could it be? Could this be permanent?"

I can’t say whether or not your issues will get better or not. There are stories of people healing within 12 months. Some 2 years. Evidence I’ve read that nerves keep healing for 5 years. A lady I spoke to with lasik issues that included some dryness had a miracle 12 years after the fact. Her eyes started watering continuously for 2-weeks, then stopped, and her eyes have been normal since they stopped gushing.

Some of us heal and some of us don’t. Most of the people on the forums are the people that don’t. But what you will see over and over on these forums is that it gets better. Even if you don’t heal, it gets better. Life gets better. That is important. As I came to realize this it provided me some comfort.

Now, when people are asking how my eyes are doing I tell them, "“still sh*tty, but I manage it and it'’s okay".” As you live with it, you learn to manage it. And as you learn to manage it, you learn to live with it.

Make sure as you go through all the different treatment options you also focus on controlling the anxiety and depression. That is worse than the pain. When I was at 9-months I kept asking doctors “do you think this is permanent?” It’s a question you hope, pray, and worry over. Here'’s the weird thing. When I finally accepted the answer for me was “"yes it’s permanent,"” things got a little easier. When I had real hope -– real desperate hope -– it was accompanied with a painful anxiety. Sometimes it almost felt suffocating. I felt like my heart was being squeezed, like it was a submarine at bottom of the ocean about to implode from the pressure pushing in from all sides.

I don’'t get that paralyzing anxiety anymore. I’'ve followed a lot tips from users on this site. Some helped, some didn'’t. Some that I thought were helping, well maybe weren'’t. Some that didn'’t, were worth another try. It took some time, but I started to learn what was best for me.

I’'ll try to give you some advice on what to do to manage your symptoms. Coincidently, the biggest turning point for me occurred around 9 months when I decided to get scleral lenses. At first they were a godsend. I could wear them all day and be almost normal. Now can wear them 8 hours if I have to, but try to keep it down to 2-4 at a time but they are still incredibly helpful in helping me manage my symptoms and keep inflammation from getting out of control. I can use them to break the vicious inflation-dryness cycle. Our symptoms seem to have some similarities and some differences, but you might want to at least look into those.

I'’d also recommend trying serum drops. They weren’t miracle workers for me, but they definitely aid in maintaining the health of the surface of your eye and part of me hopes they help stimulate healing inside the cornea.

I'’m not sure why you would wait on Restasis. Most of the reviews I’'ve read on this site don’t indicate much of an improvement from it, but there are studies that say it can help healing if used right before or soon after lasik. A doctor once told me it's about a third, a third, a third. It burns too much for a third of his patients, it does nothing for a third of his patients, and it helps a third of his patients.

Warm compresses helped relieve symptoms temporarily. Cold compresses help me more though and I find myself holding a cold pop can to my eyes when they get sore during the day (I spend a lot of time on the computer at work).

Get some moisture chamber glasses that fit your face well. Try wearing them as much as you can for at least a week. There is some immediate help when I put them on, but I find the most benefit wearing them as much as possible so they stop some of the irritation before it starts. Before you spend a lot of money on a pair, you can try some ski goggles or safety goggles for a while to see if they help.

Work out. Put on some moisture chambers and work out. I do those Insanity work outs and 20 minutes into it my eyes felt great. It’s also great to clear the mind. And, if you can’t see great, at least maybe you’ll look and feel great :-)

Sleep! Getting lots of sleep makes a huge difference in my day to day symptoms.

Above all, one thing that helped me figure out what to do next was to find people on here with similar symptoms and read all his or her previous posts (often in chronical order). I found it as a great way to hunt for what to try next.

For emotional support try reading posts by some of the up beat folks around here. I think SAAG is a complete inspiration. Find a post called Diana’s Story (http://www.dryeyezone.com/talk/forum...s-story-part-1) It’'s well written, heart wrenching, and has an update that’ I consider a happy ending.

These people helped me and now I’'m productive at work, I'’m a good dad, and I have a happy life. Dry eye gives me some pain here and there. Real pain. Every day. But I'’ve learned to manage it. And I still get to experience and enjoy the best that life has to offer. Next week, my third baby boy is going to arrive. I can’t wait!

You’'ll figure this out. It will get better.

[nori2015]

Hi savino, the drops with phospholipids are news to me. Ive never heard anything about them. Are they over the counter? I'm of the opinion inflammation is the main issue but doc is reluctant to prescribe an anti inflammatory. He said he will prescribe restasis in a few weeks if my symptoms persist.
La diva, the extra plugs might also be an option. Only one eye gives me grief, the other is pretty much fine.

[savino]

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[LaDiva]

Hi Nori,
You are very welcome. I had the bottoms plugged first, and it wasn't enough, so then had the tops done as well and that made a big difference. Just a thought.

[nori2015]

Hi ladiva, I actually got lower plugs a month ago, and while they haven't made things worse, they definitely haven't made an improvement I'm afraid. I've been told the next step is restasis. I hope it works. Thank you for taking the time to reply. It means a lot to hear any advice.
Savino, in my case I use them to stop erosions and to help my eyes feel better, even if it is just temporarily. The burning just hurts so badly sometimes.