new member

[locky]

i have been battling eye problems since 1996 which over the years has effected my life i suffer from mgd ,ocular surface disease .allergic eyes and hope to meet people to share problems and solutions

[atta]

hi locky

Hi,
Welcome! I feel sorry for you...
I suffered from dry eye when I was 21 years old. I got dry eyes probably even earlier but it hadnt bothered me much then.
I'm feeling my life is very much disturbed now...The redness is killing me, plus its uncomfortable...

[locky]

atta

Hi,
Welcome! I feel sorry for you...
I suffered from dry eye when I was 21 years old. I got dry eyes probably even earlier but it hadnt bothered me much then.
I'm feeling my life is very much disturbed now...The redness is killing me, plus its uncomfortable...

thankyou for your reply atta, are you in the u.k or in europe ? I hope to relate to you in the mental and phycical problems that eye conditions cause i hope you can reply in your symptoms and treatments you have tried as i have seen all the top u.k surgeons and have alot of information o safe long term treatments.
locky

[Rojzen]

time teaches (and heals, in some ways)

Greetings, locky. . .We have much to learn from you. . .So happy to have you on board. . .I've been affected since 1998, and my life has changed COMPLETELY since then. . .In many ways, miraculously, for the better. . .Hope the same is true for you. . .We'll talk more. . .

[locky]

Greetings, locky. . .We have much to learn from you. . .So happy to have you on board. . .I've been affected since 1998, and my life has changed COMPLETELY since then. . .In many ways, miraculously, for the better. . .Hope the same is true for you. . . .

hello rojzen,.. Thankyou for your reply..yr conditions sound very destressing to live with saying that you seem to be a positive human being please tell me about you ,your conditions and treatments that you are currently on and hope to talk to you some more .
locky

[Rojzen]

mgd, mostly; a fan of moisture chambers

Thank you for asking, locky. . .I have MGD with probable atrophy of most glands. My aqueous production fluctuates wildly, and is generally low, but not too low. A tear break-up time not greater than 1 sec., on any test, is what causes most of my symptoms, which are 1) a menthol/windy sensation all the time, and 2) burning pain, sometimes intense. I have, so far, "white eye," which is highly symptomatic dry eye without steady redness. One cornea is slightly loose from its basement membrane. I did have recurrent corneal erosions, at one point, but these have faded, for the moment.

I've tried oral doxycycline, high doses of Omega 3 oils, scrubs/heat, plugs, a retinoic acid chemical peel of the lid margins, topical doxycycline, bandage (soft) lenses, and systemic medications for pain (amitriptyline, nortriptyline, tiagabene, bupropion), along with every existing artificial tear and ointment. I have also tried supracutaneous gels, like Vaseline on the eyelids. I have gotten pain relief from Restasis, but am currently not using that, and am trying a long course of Dr. Holly's FreshKote Rx drops (after which I will switch to Dwelle, full-time). MOST important in my regimen has been the wearing, full-time, of custom-fitted moisture chamber glasses. I started with these in 1999, and have never taken them off since. They almost completely eliminate my symptoms, and have enabled me to work, drive, and go outdoors, freely again.

I'm exploring non-custom moisture chambers, now, so as to be able to work with a product that is easy to wash and alter. Soon, a product called MicroEnvironment glasses will be available, and the Dry Eye Shop carries several fabulous sport glass frames that can be made with or without Rx lenses.

If MGD causes rapid tear evaporation, I believe it must be treated with a constant barrier, like moisture chambers. . .

On this site, we have photos of everything along these lines. . .

Also, you'll find that our compatriots have tried MANY things beyond what I have. . .like autologous serum/plasma, DHEA drops, and a boatload of interesting supplements.

I'll close by adding that I have had to treat sometimes serious depression arising from my eye problem, pretty steadily, since 1998. I've become a big fan of any anti-depressant that works, but right now, I'm on dietary doses of Lithium Aspartate, which have greatly remedied my depression, and also helped reduce the brain fog I've had from being a decrepit 53-year-old (:^)). . .

Yes, I'm positive, mostly. . .The dry eye triggered a thousand changes in my life. . .These include 2 good career changes, a new marriage, and adoption of the most delectable and monstrous little doggy ever born (she is my Avatar). .

Let us know what you're using these days, please. . .Sending hugs!

[locky]

Thankyou for your in depth discreption of your symptoms,treatments and your general well being.
I myself suffer from ocular surface disease with miebomain gland disease
and to top it a allergic eye disease ,also ingrowing eye lashes....
This all started in 1996 when i was 16 years of age and has over time ruled my life .
My social life became very difficult and started to effect my work life and then stopped me from working (2 years ago).
I too suffer from severe depression a illness in its self so i can understand the nightmare of depression.
Currently my treatment consists of warm compresses ,lid scrubs ,lid message
clarymist,plugs ,doxycycline....I have tried all forms of topical treatment with unsuccessful results as i am sensitive to drops or ointments.....
My treatment is mainly therapeutic ..... could you please explain what the costom made moisture chamber glasses and rx lenses plz?
In closing my life is good you have to take the positives from the bad and i am currently studying law (first year) which i am enjoying....
remember , A LIFE NOT PUT TO THE TEST IS NOT WORTH LIVING....

[Rojzen]

tough, strong, growing

Bravo, locky, from a fellow lawyer (me (:^))...You amaze me with your toughness, starting a law career while continuing to seek solutions for the ocular surface problems and depression. . .

With all you have accomplished already, there is no chance you will not come through this, and settle on some real solutions. . .and because you are so young, you are going eventually to enjoy the benefits of the revolution taking place in treatments for our disease. . .

What do your docs say about the in-turning eyelids, long-term? I would not casually advocate surgery, of course, but I'm unfamiliar with the standard treatments for this. . .Is your condition called entropion? Do the docs know how much of your chronic irritation may be due to that, alone, moreover?

Moisture chambers have been around a long time, I think, but here in the U.S., opticians have not clamored to learn how to make these, on any significant scale. . .Here, we have to go to a small handful of opticians who know how to make them, or educate a new one who may be motivated. . .Bascom Palmer Eye Institute in Miami, FL has a master optometrist/optician who has created his own version, and I have found them to be wondrous. An optician named Scott Kornfeld, in NY, makes a slightly different kind, and beautifully. Basically, the opticians get clear plastic (soft or hard), and insert cylinders of it between the frame and lens. They then crop the plastic to fit the shape of the wearer's face, creating either a tight or loose seal, as needed.

If you check out all my posts (using Rojzen/name searching), one of them shows me wearing a pair. . .

Does anyone here know where moisture chambers have been made, in the UK? Is there such a thing as an opthalmology teaching hospital, where citizens can go, to bypass restrictions imposed by the NHS? Possibly such a hospital would have someone ready to make a pair. . .Instructions for making them are available online, and through Eagle Vision, a company that can supply the plastic. . .

Our dotanne, here at the Zone, has made her own moisture chambers. . .And George T is planning to, next time around. . .Please visit their posts, for details on that. . .

Also, if you link over to the Shop, here, you'll see the amazing over-the-counter wrap-around glasses that our leader and inspiration Rebecca Petris has found and made available. I have RecSpecs, as a back-up to my moisture chambers. They're a lot like Wiley's (at the Shop, here). They feel fabulous, and work well to shield my eyes, but my Rx is too strong for the lenses to be very good. . .

Do you have a fairly average refraction/Rx? or possibly don't need corrective glasses at all? If so, locky, you're in great luck, because you could try some of the wraparound glasses we have at the Shop, and see if they provide relief, without going through the trouble of a custom moisture chamber. . .

Finally, please check our Treatment options link, here. . .Much of what's there you may have tried, but Rebecca has a link in progress on the phenomenal Boston Scleral Lens. . .I have no idea whether entropion contraindicates use of such lenses, but here, and worldwide, these BSLs are used by people who cannot get full protection of their ocular surfaces in other ways, or who need the BSLs in order to have complete vision correction. . .

Let us know your reactions to what you find here. . .I will try to find out who in the UK may make moisture chambers, in meantime. . .That may take a little while. . .

[locky]

Dear rojzen,
Thankyou for your reply....I am happy i have more in common with you than the eye condition (law) lol......I have ingrowing eye lashes which i have electroylosis every 4-5 months(not inturning eye lids).....
I have located a stockest who deals in wiley x sunglasses ( watchesgb.com)
Also addidas do a clima cool sunglasses simlar or the same concept as wileys products....I have found your communications very supportive it is nice not to feel alone with these conditions thankyou....
I look forward to any future communication with you........
locky

[Rojzen]

thank you; we can do messages, too

Hi, again, locky. . .You've got some good resources going there, for the glasses. . .Also, I like the sound of the eyelash condition, as I sense entropion would be far more difficult to handle. . .

Please feel free to send me messages, through our private message system. . .I am so long-winded, much of the time, that I sometimes need to be coaxed back in to the corridors. . .

Will post something if I locate a moisture chamber person in the UK. . .

Happy studying. . .Law is an engrossing and brain-strengthening pursuit!