Hello, I'm 2 months into suddenly getting debilitating DES

[ltree]

Hello everyone here,

Two months ago in the middle of a work day, I suddenly noticed my eyes getting dry and sore. It got progressively worse and by the end of the week, I was having trouble keeping my eyes open from the pain, and was developing severe droopy eyelids. My job involves 100% computer work and it had been a tough battle surviving through work and day-to-day living.

Thank goodness for this community, to see I am not alone! That I am not limited to the frustratingly limited options presented to me so far. After seeing many specialists, trying many eye drops, treatments, remedies and spending so much money, I still do not have a satisfactory diagnosis nor a combination that can reliably get me fully functional. I suppose I am grateful things are at least under control, and that I can take a breath, find time and READ, and partake in this community to figure out with everyone how to deal with the rest of this journey.

For me, the breakthrough was when I finally got serum tears two weeks ago. Prior to that, my eyes were reacting to almost all drops, both prescription and OTC. Even the anesthetizing drops used by the opthamologist for his checkkups. At best, some drops did not irritate, but they did not soothe much either. On the other hand, the serum tears were actually *improving* my condition and helping my eyes heal.

I would like to make a separate post to talk about this, and ask about your input, when I have a chance. I'd also like to discuss supplementation, and also ask about getting eyewear in Canada. I have gotten so much useful information so far from all of you here (so, thank you!), and am looking forward to making more progress in this, to get my life back.

-V

[PG]

Welcome Itree . I also work on a computer 8+ hrs a day.

I suggest -

- moisture chamber glasses if you are working in an air conditioned environment. I have 7eye Ziena Nereus, but I am going to get Wiley instead. The former is really only for a large head or for men, and has a clear gasket. There are Wiley's with a small gasket, although it is black. These are better for a smaller head. You can find these at motorcycle shops like Harley.

- turning on www.protectyourvision.org every time you get on the computer, and dowloading f.lux.

- taking 3 grams of fish oil. Nutrigold Triple Strength, Nordic Naturals Ultimate or Carlen's Norweigan.

[ltree]

Welcome Itree . I also work on a computer 8+ hrs a day.

I suggest -

- moisture chamber glasses if you are working in an air conditioned environment. I have 7eye Ziena Nereus, but I am going to get Wiley instead. The former is really only for a large head or for men, and has a clear gasket. There are Wiley's with a small gasket, although it is black. These are better for a smaller head. You can find these at motorcycle shops like Harley.

- turning on www.protectyourvision.org every time you get on the computer, and dowloading f.lux.

- taking 3 grams of fish oil. Nutrigold Triple Strength, Nordic Naturals Ultimate or Carlen's Norweigan.

Thanks PG :-) Thanks for your checklist of suggestions - I am already doing some of them.

One thing is, I am in Canada and it is hard to locate stores that carry these models for a fitting. I already have to send back the Onion Goggles I ordered because they do not fit at all. I read that it may have to do that I am Asian and the glasses are generally designed to other facial profiles. I found online information on an optician who seems to carry Wiley's, so I am going to call and ask about them soon. I'll look up Harley shops too - it's hard when all I want to do weekends is to rest my eyes at home.

And what a cute site to help with eye health. I started PV on my laptop just now and am going to do the same at work tomorrow. I have f.lux already and cannot do without it.

Also, I use Carlson's fish oil too, although not consistently. Do you find that it made a difference for you? I am considering adding GLA and ALA (evening primrose /bilberry seed oil).

[PG]

I am afraid to stop the fish oil as all doctors recommend it, and have done so many other things that I cannot flush out whether the fish oil is having a specific effect. I have been taking bilberry for 3 weeks, and it has not changed anything.

I would say that the sizing claims on the 7eye website are not reliable, so beware. You have to try them on.

[farmgirl]

I have discovered that it true what you are saying that it is difficult to find a good fit for Asian profiles having met with another member on this forum who wanted to try on my glasses. Her face was narrow and her forehead very flat compared to mine. What I did was I found a company online who sells safety glasses (those are what we use) and they sent me about 5 pairs which I put a deposit on with a CC and then I tried them on and sent them back. Unfortunately I can't remember the name of the company but you can make inquiries. Try www.safetyglassesusa.com I think that may have been the company. It worked well if you can't find anyone local who carries them.

I am here to tell you that you need to specify the older thicker gaskets for the Wiley X glasses though as apparently the new ones are thin and do not seal well. If I am not mistaken the old ones are available on this website, at least they were some time ago. I have a pair of 7 eye frames BRIZA F3106 that I love but I cannot get a prescription in them as they have too much curvature to the lens so I can only wear them with contacts. If you are really desperate try good (not cheap) swim goggles.At home and if you are buried in an office out of the public eye then beauty can become a non-issue.

As regards oils I found that there is conflicting information regarding the safety and efficacy of fish oils, in fact one of my eye specialists no longer recommends them. What seems to be a better alternative are Parent Essential Oils. I am attaching a link so that you can read about them. In fact I should really do a separate post on this as so many of us require these oils daily. I cannot source them locally so I order them online in bulk a couple of times a year. I take 4 a day. They are more money than fish oil but I want the best because my eyes are worth it and I want it to actually work and not be rancid and causing more problems than I already have.

http://www.healthy-living.org/html/p...tial_oils.html

Might I suggest that you also try punctual plugs, those have been a lifesaver for me. You can start with temporary dissolvable ones that last a few weeks and that will give you some idea of whether or not they will help. You can start with lowers and do the uppers as well if that is not enough. In the end I had my uppers permanently cauterized and the lowers plugged with removable plugs. They were a game changer for me.

Unfortunately it is a process and you have to find that magic combination that works for you but hang in there you are doing well. This forum was lifesaver/game changer for me as well! I also have done a post on eye drops which you may find interesting since you said in a prior post that nothing seems to help and in fact can make it worse.

http://www.dryeyezone.com/talk/forum...bout-eye-drops

Good luck...cheers...F/G

[Hokucat]

Hi V. I am also Asian, so totally understand your problems having chamber glasses fit your profile!

If your issue persists and you cannot find further relief, like I've mentioned to others in this forum, perhaps look into scleral lenses. These are nickel-sized dome-shaped contacts that keep a layer of saline over your eyes. I wear them 12 hours a day, and these have helped me and others be more comfortable and for a longer length of time when using the computer, read, etc. These lenses are definitely an integral part of managing my dryness. I've only had experience with Boston Prose Scleral lenses, but there are other doctors who are skilled at fitting sclerals who are mentioned on other threads on this website, so would look for a recommendation if not Boston PROSE, because experience in fitting the lens is key. Here is the link at least to Boston PROSE so you can get some overview of sclerals, as well as their locations:

http://www.bostonsight.org/PROSE-tre...y-Eye-Syndrome

Periodic forced blinking exercises may also help, and drinking lots of water.

Once you have a diagnosis or a better idea on the root cause of your dry eye, that should help narrow down the various treatment options most successful for your situation. Good for you for being proctive!

[ltree]

I am afraid to stop the fish oil as all doctors recommend it, and have done so many other things that I cannot flush out whether the fish oil is having a specific effect. I have been taking bilberry for 3 weeks, and it has not changed anything.

That's so true.. I am taking a whole bunch of supplements now and am afraid to stop any, in case they help. At some point, it would be nice to make a poll on the efficacy of each supplement.

On the other hand, farmgirl in the other post mentioned about parent essential oils.. It's a relatively new concept for me and I want to make use of that information too.

[ltree]

Hi V. I am also Asian, so totally understand your problems having chamber glasses fit your profile!

If your issue persists and you cannot find further relief, like I've mentioned to others in this forum, perhaps look into scleral lenses. These are nickel-sized dome-shaped contacts that keep a layer of saline over your eyes. I wear them 12 hours a day, and these have helped me and others be more comfortable and for a longer length of time when using the computer, read, etc. These lenses are definitely an integral part of managing my dryness. I've only had experience with Boston Prose Scleral lenses, but there are other doctors who are skilled at fitting sclerals who are mentioned on other threads on this website, so would look for a recommendation if not Boston PROSE, because experience in fitting the lens is key. Here is the link at least to Boston PROSE so you can get some overview of sclerals, as well as their locations:

http://www.bostonsight.org/PROSE-tre...y-Eye-Syndrome

Periodic forced blinking exercises may also help, and drinking lots of water.

Once you have a diagnosis or a better idea on the root cause of your dry eye, that should help narrow down the various treatment options most successful for your situation. Good for you for being proctive!

Hello Hokucat, so it confirms that it's going to be not easy to find the glasses for us! So far I have found these, made in Taiwan and not too bad - there's only a slight gap at my forehead if I use the included straps, although safety goggles from Home Depot offer the best seal:

http://www.hilco.com/Optometry/Detai...tFamilyID=5090

Thanks for pointing me to the scleral lenses. I'd want to find someone whom I can trust to fit me with them, soon - in Canada. I'm tired already of having people stare at me in my goggle-like glasses.

I'll look up the blinking exercises too. About hydration - I haven't had a chance to read up a lot on it, but am taking supplements that also supposedly help "hydrate" - collagen, hyaluronic acid, Biosil.. Maybe I'll start a post to poll for everyone's supplements.

I'm feeling somewhat more hopeful now, that everyone is so helpful here. Thanks again all!

[ltree]

I am here to tell you that you need to specify the older thicker gaskets for the Wiley X glasses though as apparently the new ones are thin and do not seal well. If I am not mistaken the old ones are available on this website, at least they were some time ago. I have a pair of 7 eye frames BRIZA F3106 that I love but I cannot get a prescription in them as they have too much curvature to the lens so I can only wear them with contacts. If you are really desperate try good (not cheap) swim goggles.At home and if you are buried in an office out of the public eye then beauty can become a non-issue.

As regards oils I found that there is conflicting information regarding the safety and efficacy of fish oils, in fact one of my eye specialists no longer recommends them. What seems to be a better alternative are Parent Essential Oils. I am attaching a link so that you can read about them. In fact I should really do a separate post on this as so many of us require these oils daily. I cannot source them locally so I order them online in bulk a couple of times a year. I take 4 a day. They are more money than fish oil but I want the best because my eyes are worth it and I want it to actually work and not be rancid and causing more problems than I already have.

http://www.healthy-living.org/html/p...tial_oils.html

Might I suggest that you also try punctual plugs, those have been a lifesaver for me. You can start with temporary dissolvable ones that last a few weeks and that will give you some idea of whether or not they will help. You can start with lowers and do the uppers as well if that is not enough. In the end I had my uppers permanently cauterized and the lowers plugged with removable plugs. They were a game changer for me.

Unfortunately it is a process and you have to find that magic combination that works for you but hang in there you are doing well. This forum was lifesaver/game changer for me as well! I also have done a post on eye drops which you may find interesting since you said in a prior post that nothing seems to help and in fact can make it worse.

http://www.dryeyezone.com/talk/forum...bout-eye-drops

Good luck...cheers...F/G

Hello Farmgirl, thanks for your helpful tips. I'll take a look at the options for shopping for glasses remotely.. I googled your 7 eye BRIZA model and it looks so much more like glasses, and yes the curvature looks like it would hug the face quite well. I will put plugs on the list, although I don't think I'm ready to consider them yet, but who knows.

The concept of parent essential oils is pretty intriguing. I also found this link somewhere, that seems to speak along the same lines:
https://chriskresser.com/essential-f...ial-after-all/

This is in conflict with what I've been doing, taking lots of fish oil. Will read and learn more when I have a chance. I'll balance it with the other oils at home meanwhile.

Yes, I hope to find a magic combination soon, cheers!

[Hokucat]

Hi V. I just mentioned on another post about an oral medication called Evoxac (generic name Cevimeline) that gives additional moisture to my eyes, which you might find beneficial. Its a 30mg capsule I can take up to 3x daily, that gives moisture for about four hours after each dosage. If helps a great deal, especially when I'm staring for long periods of time, like driving, using the computer, going to a movie, etc. I take it when I'm wearing my sclerals and also when wearing glasses. When wearing sclerals, the effects of the Evoxac makes the edges of the lenses touching the white/sclera part of the eye even more comfortable, and the lenses come off easily at the end of the day as if I had just rewetted them.

[farmgirl]

That's interesting how something helps one person and does nothing for another. That is why it is such a process to find what works for you. Hokucat loves the sclereals and $1200 later I couldn't tolerate them. They made my eyes sore and bloodshot even with just nonpreserved Saline in them. I have Sjogren's and have been prescribed Evoxac (Pilocarpina) and it made me drool like a dog and did nothing to help my eyes....yesh

Also Itree don't hesitate to try plugs they are painless to insert and you don't even know they are there. The uppers can be scratchy, that is why in the end I had my upper cauterized when I realized that my situation was permanent and that they helped. In fact, if I had to remove them I would not be able to live normally they help that much. I must warn you though, NEVER get plugs that are inserted into the canal and cannot be removed or don't dissolve. That is the cardinal rule for plugs.

You just have to keep trying until something clicks. You go with what helps and abandon what doesn't. We are all still in the process but I have improved 70% from 4 years ago when I joined this forum....good luck

[filmmaker67]

Everyone Please try Punctal Plugs- They have changed my life!

I had severe symptoms with dry eye, which started 3 years ago aged 47. I went to opticians, doctors & pharmacists, who all recommended various eye drops & goggles, but my eyes reacted badly to most of the drops, my vision became seriously impaired and my eyes were red raw & itchy. My eyes ached all day & I had to stop driving, because I couldn’t see through the heavy tear production & stopped working, as a film maker-I couldn’t focus my camera. I was afraid for my future and hid away at home as the symptoms were so unsightly. I felt really hopeless. I tried hot & cold compresses, diet change, lifestyle change as well as 11 different types of eye drops. I read lots of forums desperate for a cure-but none I read mentioned the treatment below, which worked brilliantly for me.
I begged my Doctor to refer me to the local eye clinic in Lancaster (UK). The consultant gave me steroid eyedrops (FML) to get my eyes back into a better condition, as they were so bad he couldn’t actually see the back of the retina due to inflammation. Once my eye condition improved I still continued with all the usual dry eye symptoms, gritty feeling, over watering of eyes & eyelids stuck to my eyes morning & night.
I went back & he suggested I try tiny inserts in my tear ducts called punctal plugs in my lower tear ducts. The inserts stop the drainage of the tiny amount of moisture you are still producing, so it stays on the eyeball longer. The procedure was done there & then in his office.

It took about 5 seconds per eye and I just felt a little sting as they went in. My eyes were back to “normal” within 24 hours. I could not believe it.

I have now had a year free of any eye symptoms, I have not needed any eye drops & my eyes feel normal, I’m back to filming & editing & driving. YAY!

I can’t recommend it highly enough. I don’t know if it’s successful for every one-but for me it was life changing. ( I've read clinical reports that 86% of patients report improvement)
You can try temporary plugs first (these melt away within 3 months) to see if it improves your condition, before having the permanent ones inserted.

Ask your opthamologist about it. It was quick, pain free, and has saved me from the torture & depression that comes with severe dry eye and you can’t see them, except in a magnifying mirror when you can see a little clear rim. One recently fell out (can happen if you rub your eyes a lot) & I had it replaced asap as the dry eye symptoms returned immediately.

What have you got to lose. Good Luck!

[farmgirl]

Yes Filmmaker........my sentiments exactly. I was thinking today after I urged Itree to try plugs sooner than later, that if I had to give up all but one of the things that I have found helpful in dealing with my dry eye, my plugs would be the thing would I hang on to for dear life. If I so much as sense that they are leaking (sometimes you can taste medicated drops) then I get them looked at. I would be like you if they were to come out, I would immediately be back to square one.