Am I correct to assume what we are experiencing is rare?

[Guest]

How many people do you think deal with ocular surface disease, dry eye and MGD to the point it ruins their life's? Maybe ruin is a strong word, how about, greatly limits their lives. I just feel so alone in this sometimes. No one can understand it. I can't even understand why this happened. Some days I feel good, others I feel like I can't go on. I just don't understand how to deal with this and have a life I enjoy living.

[Hokucat]

You’re right, it is SO rare to have the degree of severity we in this forum have. Even some of my doctors have commented I had one of the worse cases they had ever seen. It’s like I was a freak, and made me feel so alone and helpless.

It’s only in this forum have I encountered others like me, and am thankful we all at least have each other. Personally, I have not ever met ANYONE who is/was as bad off as we are. I mean, a lot of people sympathize when they see how bad off I was and say, “I have dry eyes too”, or “Can’t you use drops?”, but they just don’t understand and probably never will because they’ve never seen anyone like us.

A few months ago, a friend told me an acquaintance was experiencing difficulties with severe dry eyes like I had, where she could no longer drive, keep her eyes open, go outside, etc. so I told them to have her contact me and to check out this forum. Your post here makes me realize I should take the initiative to get in contact with her, she may need help.

It’s normal to have these ups and downs with such a painful and chronic condition. I see your continuing determination, which is key, You’ve found and shared so many things that have helped you so far...the right temperature to make compresses effective, figuring out your corneal erosions are due to your eyes slightly open at night and wearing night protection and applying drops, finding serum tears help, and more. So overall you have moved forward from where you were at several months ago, that’s indeed an accomplishment. I know it’s tiring, but you are moving in the right direction, and even encouraging others along the way. I know members of this forum have been thankful for all this.

Although my issues are manageable now, things you have shared have also helped me continue to look for further improvements, so I really want to thank you for that too.

[edmunder]

I hope its rare and few are suffering. But i joined the facebook dry eye group and there seem to be a large number of people globally suffering.

I think few people are at the TBUT very few second group where many of us reside.

Ive explained recently to my friends the issues going on and all have been helpful and supportive. I think its just not as well known as other issues.
Dowork123

part of the reality for me is really coming to grips that i am somewhat disabled now. Even though if you saw me i look like aformer athlete and played full court competitive basketball at 36 just a few short months ago. My mind is adjusting.

[hopeful_hiker]

You know, I think partially people have different pain thresholds. Several docs said “my eyes don’t look too bad”. One said they have other ocular rosacea patients that don’t have many symptoms but their inflammation is worse. It might be physiological predisposition of sorts to notice more sensations.

Age is another factor. From what I understand, senior patients and children have different symptoms that may not be as severe as adult symptoms.

I am also beginning to suspect that corneal neuropathy is probably overlooked. You need to have a special microscope to diagnose this issue (or make an educated guess). So people may have pretty dry eyes but still have normal nerves. They would feel dryness but not necessary constant pain. Whereas someone with corneal neuropathy will sense harmless things even if their corneas do not have scratches, etc.

[Guest]

Hokucat thank you for the kind words, you've helped me a lot too with sclerals. You are the main reason I'm probably going to follow through with the fitting.

I think you should reach out if you can. I think it would actually make you both feel better. I feel good knowing that a few word could possibly give someome relief.

edmunder I get it man, I have had plenty mental breakdowns about this. I'm 6'3" 235lbs and I'm not fat. I'm a gorilla...I have been a bodybuilder for 16 years, natural for 9 then I jumped on the juice. It's hard for me...I'll even look at my eyes and they're less red than they were before the dry eye. They look healthy. The glands look healthy, but I'm unable to function unless I'm hermetically sealed in a house. I read someone say once, id rather have my leg blown off, then you could at least see I was suffering. I get it. It's a mind **** man. I'm sorry.

hopeful_hiker I'm in the same boat as you, minimal signs, big symptoms. I believe there was some nerve damage. I wanted a confocal microscopy done to see the nerves. Problem is, and this complicates things, it could show nerve density. It cannot however show if those nerves are working properly. So even the confocal microscope is limited.

This is is so mentally taxing. I had a great life, it's still great but damn this throws a shadow over everything I do now. This happened to me a month before my daughter was born. She was sick and was in the NICU for 8 days. My eyes were the worst during that time. Not to mention worrying about her. My cat died a few months ago. I have been with my cat longer than my wife. That was hard. This year has just been really hard. I could use a break. Thanks for listening.

[hopeful_hiker]

Dowork123 Do you wear any sports/motorcycle glasses outdoors?
What kind of serum are you using? I am using 100%.

[Guest]

Dowork123 Do you wear any sports/motorcycle glasses outdoors?
What kind of serum are you using? I am using 100%.

I'm using 20% serum as needed. My understanding is that if you use serum at too high a concentration, too frequently, you could actually inhibit certain growth factors and anti inflammatory agents. I'm not saying 100% serum is bad, ive den studies where its worked wonders. I've also seen confocal micros copies of nerves 3 months after 20% serum and the change was HUGE. So I'd say you're doing everything you can at the moment.

I cant really wear anything because I wear glasses. I wanted to buy the prescription moisture chambers from the dry eye shop but my prescription is too high. I need to find a solution though. Around the house I wear lab goggles or motorcycle goggles but not when I go out.

[Hokucat]

I do hope the sclerals work out for you. A few people in the forum who saw my fitter were not able to tolerate PROSE lenses. If you have good medical insurance that will cover the lenses, the PROSE clinic is fairly local to you, and you are able to wear their lenses, that would be most economical. Not only are their fitters very well trained and experienced, but they take care of absolutely ALL the insurance paperwork and know what’s required to get it approved, all I had to do is give them my insurance card. I only paid a few hundred dollars total for the appointments and lenses. And every few years you’ll likely need an update, so local is ideal where possible.

That said, some people cannot wear PROSE and might be able to wear sclerals if they have a completely custom-made lens to the shape of their eyeball. If I couldn’t wear PROSE, I would try Dr. Gemoules in Texas based on the positive input in this forum on him, or EyePrintPro like Rebecca has. My PROSE fitter says she refers some patients to EPP when they cannot wear PROSE. I know EPP is offered at several locations in the U.S. so may be more convenient. I think you have to submit your own insurance paperwork for both places, and am not sure the success rate of coverage, although have read Dr. G’s total cost including travel and lodging is a lot less than PROSE and EPP.

If you get sclerals, perhaps having some 100% serum tears would be helpful if you put in a few drops with the PF saline, vs putting in 20% and it getting too diluted. But as I mentioned before, I have been putting a few drops of my 30% serum in with my PF saline for a few months, and my PROSE fitter said the surface of my eyes looked a little better than last time, so maybe this concentration of serum tears in the sclerals is still beneficial. I think Pythonidler filled his sclerals with mostly his 20% serum tears if I’m not mistaken, but best to check with your doctor before doing anything different than just the PF saline.

You still have lots of options. I had to do probing several times, then find the right diet changes, then PROSE lenses to help with remaining dryness. That was the three things that helped the most, and in that order. Sometimes the order of the treatment can make a huge difference. Once my glands developed scar tissue, nothing was working for several years, so I had to get probing to unblock them first.

im glad your daughter is ok now. I’m very sorry about your cat. I am a cat lover too...when I lost my kitty after 15 years, it was like losing my sweet, best friend.

[hopeful_hiker]

Hmm, interesting stuff about serum drops.

Perhaps, 20% is too weak to feel the difference?