New to this site and I am hoping to gain some "Eye wisdom"

[Arcluce]

I was diagnosed with TEN(S) on March 17, 2015. I am thankful that I have a great ophthalmologist who is very enthusiastic about his work. I have only been dealing with severe dry eyes for almost a year now (subtract the month and 2 weeks that I was in the hospital), and I can say that this is nowhere near as easy as a walk in the park. I have tried scleral lenses, but due to my eyes not being able to open as wide as they once did, I went a different route. I ended up getting Wiley X prescription goggles with their handy foam inserts and transition lenses (helps with my light sensitivity), which helps to some extent, but with the aid of Thera Tears, Purilens Plus Ultra PF (Same as Unisol 4 and roughly the same price and so far seems to be the most cost effective), and Refresh Plus (Which is a tad overpriced in my opinion) my days can somewhat continue. I have tried serum tears, but eventually that started to burn my eyes and I discontinued the use of them. I try to always go for the preservative free solution (No burning). I can't tell you how much Unisol 4 and Purilens Plus PF has helped me throughout these painful times. If I could I would squirt Purilens Plus PF in my eyes 24/7, but that would destroy my wallet and what's inside of it. I'm curious what other members on this site are using for their dry eyes. So, if you come across this post feel free to post away!

[LaDiva]

Hi Arcluce,
First, let me say that you have a great attitude in the middle of a very difficult situation. I am hoping you will tell us that your problem will resolve? Not sure what to tell you as it sounds like you are already doing some great stuff for your dry eye problem. Goggles have saved my life. Everyone responds differently to OTC eye drops, and I am not sure if you are like the rest of us in that you have tried everything available in the drug store... TheraTears work well for me in terms of helping discomfort, but again, the drop thing is very individual and it sounds like you are OK with Refresh. Not sure about giving advice, as it sounds like you are doing well managing your situation, but welcome to you, and good wishes.

[Arcluce]

What I have is permanent damage. Let's just say if I really wanted to cry, I couldn't, because it's impossible for me to. I could go on about the daily pain that I have, but in reality that's not going to help anyone. To be honest I would rather have my eyes ripped out from my sockets, but who wants to hear that or maybe people do, who knows. I'd rather not even have my eyes at this point. To put it in the most simplistic way I feel as though that I am in limbo when it comes to my eyes, and I'd rather have them closed for eternity. Marijuana is the only thing that helps with the pain more so than drops, because drops really only give me relief for a couple minutes, hence why I stated if I could, I would dump Purilens Plus PF in my eyes 24/7, 7 days a week, but that's not even remotely realistic. In all reality I am in hell and I know for a fact that I am not alone.

[meibomian]

How much scarring/sympblepharon did you develop on the eyelids and cornea following your Toxic Epidermal Necrosis Syndrom (TENS) - Stevens-Johnson Syndrome, I assume was what occurred. Did you have an amniotic membrane or conjunctiva placed over your cornea? If there's significant scarring, would eyelid reconstruction be helpful? Were both eyes affected?

[LaDiva]

Just want to say that I know how you feel Arcluce. I've thought about having my eyes removed too, but figure there would still be a huge mess of blocked oil to deal with. Also, I wouldn't be able to watch The Voice! Hang in there. I hope someone comes up with something great for you.

[Arcluce]

I give up on trying to type this crap out and describing everything, this forum is garbage due to the time-out, plus, I continue to hit the back button and this is my third attempt at writing this reply. I also keep on getting invalid server response. Where is the upkeep off this website, must be terrible programming and or servers malfunctioning. I highly doubt that it is due to my connection. Guess, I need to just periodically copy and paste my text, so that it is saved. Just ridiculous lol.

To keep this as short as possible and to some everything up.

Meibomian- Both eyes did have an amniotic membrane placed over them, thus, both eyes were affected and I dont see how eyelid reconstruction would be helpful due to my main issues being tear poduction. Keep in mind I'm open-minded so any notes from experience or just any ideas I'm open to hearing. As for the percentage of scarring I would have to get back to you with that information.

Ladiva- Good observation! As a worse case scenario where I'm unable to get dissability, I will then leave this country and become a monk trying to live my life in peace. I can live with having my eyes closed for eternity. To live a peaceful life is more important to me than trying to live a life full of misery due to my condition. I love when people are honest and true to themselves, hence, why I love hearing stories, because then, maybe, I can pass useful information onto the next person. Real life experience is more absolute than theories of what could be (uncertainty).

[Greg Dahlen]

Have you tried a cycloporine product (such as Restasis) for three to six months? That is mentioned on NEI's page on dry eye: https://nei.nih.gov/health/dryeye/dryeye.

If you've tried that and it hasn't worked, or just to tell you about a different option: here is one thing that helped me with eye pain. It is an extreme solution, but for me it has worked quite well: for the last eight years, and currently, I have been living on milk. Every day I drink somewhere between one and two gallons of cow skim milk, and really hardly eat or drink anything else. It really seems to make my eyes feel tolerable. I think the reason is that milk is a very easy food for the body to process because it is made from food that has already been broken up by the mother. I have tried the kind of diet that nutritionists recommend, which is fruits and vegetables, and fish; but for me that diet didn't work, and I had eye pain on it. But when I returned to milk, my eyes felt better, and tolerable. Since my body probably doesn't work too differently from other people's, I would guess that since it worked for me, it might work for others. In truth I can't see any harm from trying. Living on milk you might miss a few nutrients, but I believe it has enough of the important ones that one does okay. If people on dryeyezone tried it for a few weeks and it wasn't working for them, I suppose they could stop it, and return to whatever they were doing. But wouldn't it be nice if it helped them as it has helped me?
My primary care physician knows about the diet and is okay with it. She says if it works for the patient, then she's okay with it.
The diet may sound a bit monotonous, but surprisingly in practice it's quite enjoyable. Milk tastes quite nice and is quite refreshing. For me I'm really motivated to do it because it makes me feel better physically. It might work that way for other people as well.
If you do try it, would you let me know how it goes, whether it works for you, and how well, doesn't work, or whatever your experience is. If it turns out it works for people other than me, I can spread the word.
The idea isn't mine. I got it from the Masai tribe of Kenya, who are famous for living only on food from their cattle, beef and milk. I just emphasize the milk part.

I will say that for about six years I was living on milk and that was a sufficient solution to my dry eye. Then about two years ago I started getting to feeling tired, a feeling I couldn't shake. So I started going to daily Catholic Mass in addition to living on milk. That solved it, my eyes felt good and I was otherwise good. Religion I think has real physical health benefits as well as emotional.

If you try living on milk and it helps let me know. Then if I share it with other people I can say it has helped two people rather than one.