To Hell and Back - My year battling dry eyes

[Logandly]

MARTY your recovery profile is very similar to mine as is the onset of your condition. We both had eye damage but from different causes but we are very similar otherwise. I just started(because of the recommendations on this site) using vitamin e oil in my eyes at night as my overnight lubricant and I noticed a marked improvement that has been durable. I have been using it for over two weeks with the improvement being stable. It burns like hell when it goes in but to no apparent ill effect. In fact after the burning stops my eyes start lubricating more within about 10 minutes after application. I would use it as my only lubricating drop during the day but my eyes are too sensitive and it burns to badly to do this. I use the Solgar because it meets German purity standards and it contains the entire spectrum of vitamin e compounds. Here is a link to the kind:
http://www.vitaminshoppe.com/p/solga...s#.Ut6CyfYo5n4

Hi dave,

I'm glad the vitamin e oil is working for you! I didn't notice before but when someone sent me the link to the solgar Vit e oil, i didnt notice it had wheat germ oil which has a ph of 4.25. The normal eye is neutral with a ph between 7.0-7.3 so that why it stings!!!

Coconut oil has a ph of 5.5 and olive oil also around 4.5 hence they should sting as well.

I think you might want to try the one I originally recommended in another thread, the natures bounty one, as that has the same neutral ph as your eye around ph level 7so it shouldn't sting at all. I use it everyday in the morning, afternoon, night etc. honestly, I would not feel comfortable putting in something that acidic in my eye and I strongly suggest you make a switch.

Logan x

[lizlou29]

Logan, is there another Nature's Bounty vitamin e oil aside from this one? http://www.amazon.com/gp/aw/d/B000052YOH

The ingredients other ingredients are: Soybean oil, Corn oil, Sesame oil, Wheat Germ oil and Lemon oil.

Obviously most people would prefer to use natural products but I for one wouldn't want to put something in my eye without a fair amount of evidence that it is safe. Also I worry about the sterility.

[Logandly]

Logan, is there another Nature's Bounty vitamin e oil aside from this one? http://www.amazon.com/gp/aw/d/B000052YOH

The ingredients other ingredients are: Soybean oil, Corn oil, Sesame oil, Wheat Germ oil and Lemon oil.

Obviously most people would prefer to use natural products but I for one wouldn't want to put something in my eye without a fair amount of evidence that it is safe. Also I worry about the sterility.

Lizlou, I'm really glad you brought this up and you make a very important valid point which I haven't considered before. Sterility is a huge issue, and ideally nothing should be put into eyes that isn't formulated for the eyes. Soybean oil isn't exactly great either for eyes or for one's health in general

I think the oil solution should only be used for a short time as long term effects aren't known especially with ph balance issues etc. I'm really at a point where my eyes aren't dry anymore and don't really need the oil and preservative free drops seem to work for me right now after my sclera healed.

I found a drop specifically made for eyes which I'm planning to order. It has vitamins b2 b6 and vitamin e
Here is the link. It is made by a Japanese company and this site ships abroad:

http://global.rakuten.com/en/store/e..._browsehist_en

Logan x

[dryeyedave]

Hi dave,

I'm glad the vitamin e oil is working for you! I didn't notice before but when someone sent me the link to the solgar Vit e oil, i didnt notice it had wheat germ oil which has a ph of 4.25. The normal eye is neutral with a ph between 7.0-7.3 so that why it stings!!!

Coconut oil has a ph of 5.5 and olive oil also around 4.5 hence they should sting as well.

I think you might want to try the one I originally recommended in another thread, the natures bounty one, as that has the same neutral ph as your eye around ph level 7so it shouldn't sting at all. I use it everyday in the morning, afternoon, night etc. honestly, I would not feel comfortable putting in something that acidic in my eye and I strongly suggest you make a switch.

Logan x

Where are you getting these ph values? According to what I have read the ph of oil cannot be accurately measured. Also, where did you find the information on the ph of the nature made product? I steered away from it due to the presence of lemon oil and the fact it does not contain all of the essential vitamin e compounds which are supposed to be required for wound healing and scar reduction. I have discussed oils extensively with my compounding pharma and they use corn, olive, and coconut oils routinely in their compounded eye meds. So these oils are at least from his experience and those of the MDs that proscribe them safe. Lastly I posted the wrong Solgar product the one I purchased is this one:
http://www.vitamindiscountcenter.net...FVQV7AodIWYA-g

Anyway not trying to argue just curious please use any alternative therapy at your own risk. I also wanted to add that it does not burn my ocular surface but the areas of my conjunctive that were burned by the SJS. I doubt it will burn someone who has not had my lid damage. If I use the oil on my lids and lid margins only it still gets in my eyes and burns much less and keeps my eyes lubricated all night as opposed to actually dropping it into my eye.

[MartyM1985]

Quick update for me... would appreciate any input you have.

I've been struggling the last few weeks as I'm hitting the one-year anniversary of my "crash." I'm not sure whether it's because I'm working more or because I'm just depressed about not being back to 100% yet. Kind of a mystery.

I also recently added Taurine, SOD, & EGCG into my supplement regimen as Logan suggested. It's been about a week, so we'll see how it goes.

Regardless, I went back to my main doctor today for the first time in a while. He said I have improved a bunch... my TBUT time is apparently 10 seconds now (up from 5 this summer), but honestly, I find that hard to believe. Working on the computer can still be very, very hard. He says my eyes don't look that bad, but he also accounted for the plugs being in.


Jumping back a bit... last July, I went to see a retinal specialist to check for retinal damage due to my eye injury. None was found. Apparently, my retina is 100% fine. Still, no one can explain why my eyes can't handle bright light and why I have severe after-images when looking at light sources or looking out windows. Or why my eyes feel generally strained most of the time (especially the right one). No one has any answers or insight into the cause of these problems.


So... I got my doctor to finally prescribe serum drops for me. He admittedly didn't know much about them at all, but he was happy to prescribe them for me. So that's happening now... if anyone has any advice or info on serum drops, please let me know because my doc was kinda clueless.

It's hard for me to be positive lately. It's very sad to leave the doctor's office and not have any more answers or insight into my condition after a year of battling. They can't even figure out why I'm having the problems I'm having, so they have no idea how to treat it further. So I'm left to go home and wander through life guessing on how to get healthy again. I guess we go with the serum for now.

[Rebecca Petris]

Hi MartyM… sorry to hear you're feeling discouraged

I'd be careful with the supplements unless you've got some professional input into them… never know what kind of advice you might get from people you don't know on the internet

Regardless, I went back to my main doctor today for the first time in a while. He said I have improved a bunch... my TBUT time is apparently 10 seconds now (up from 5 this summer), but honestly, I find that hard to believe. Working on the computer can still be very, very hard. He says my eyes don't look that bad, but he also accounted for the plugs being in.

One thing to keep in mind here: Clinical improvement often precedes symptom improvement… meaning, they'll see improvement before you FEEL it… one of the reasons it's important to be monitored clinically, so you know if you're going in the right direction. So I'd work on extracting lots of hope from that observation. Plus, there's everything that serum may be able to do for you. Not trying to pep-talk you, really, when you're feeling down you're feeling down, but just wanting to share my perspective, that it sounds like there is definitely hope with the way you're moving forward even if you don't have answers to a lot of things yet.

[MartyM1985]

Hi MartyM… sorry to hear you're feeling discouraged

I'd be careful with the supplements unless you've got some professional input into them… never know what kind of advice you might get from people you don't know on the internet



One thing to keep in mind here: Clinical improvement often precedes symptom improvement… meaning, they'll see improvement before you FEEL it… one of the reasons it's important to be monitored clinically, so you know if you're going in the right direction. So I'd work on extracting lots of hope from that observation. Plus, there's everything that serum may be able to do for you. Not trying to pep-talk you, really, when you're feeling down you're feeling down, but just wanting to share my perspective, that it sounds like there is definitely hope with the way you're moving forward even if you don't have answers to a lot of things yet.

I'll gladly take any and all pep-talks I can get Rebecca, thank you so much. Today has been a better day so far, so I'm thankful for that. I just need to continue to stay positive and have faith that I'm headed in the right direction.

[bojan89]

Lizlou, I'm really glad you brought this up and you make a very important valid point which I haven't considered before. Sterility is a huge issue, and ideally nothing should be put into eyes that isn't formulated for the eyes. Soybean oil isn't exactly great either for eyes or for one's health in general

I think the oil solution should only be used for a short time as long term effects aren't known especially with ph balance issues etc. I'm really at a point where my eyes aren't dry anymore and don't really need the oil and preservative free drops seem to work for me right now after my sclera healed.

I found a drop specifically made for eyes which I'm planning to order. It has vitamins b2 b6 and vitamin e
Here is the link. It is made by a Japanese company and this site ships abroad:

http://global.rakuten.com/en/store/e..._browsehist_en

Logan x

Logan x thanks for posting your solutions in here. I have MGD and tried almost every preservative free eye drop --> with no success. The only thing which helped me where (triphala ghritam taken orally with milk and omega 3 fat acids pils), but the success only lasted for a month or so. I just ordered the japanese drops and will report as soon as they arrive.
These eye drops are of a oily consistence and that could help my problem...I believe

Bojan

[MartyM1985]

Logan x thanks for posting your solutions in here. I have MGD and tried almost every preservative free eye drop --> with no success. The only thing which helped me where (triphala ghritam taken orally with milk and omega 3 fat acids pils), but the success only lasted for a month or so. I just ordered the japanese drops and will report as soon as they arrive.
These eye drops are of a oily consistence and that could help my problem...I believe

Bojan

I'm interested to see how these Japanese drops work, so please report back when you get a sec. And hang in there.

[runnergirl]

Hi Marty,

We all have our good days and bad. I have been to 7 eye doctors and 2 neurologists in the past year and they ALL have something different to say to me. I still have no idea why one day a year ago I struggled to see. How did I get dry eye? I do not have any other ailments. I have been tested for EVERYTHING. One doctor finally yelled at me because I was crying and said, "there is NOTHING wrong with your eyes!" It makes you wonder if you are crazy! Doctors are just people, they do not know everything, most of them have NEVER even experienced dry eye and have no idea what we all go thru. they want to help us but only go with what they have learned. All I can say is just keep going each day. God says not to worry about tomorrow and do not be afraid - just give it all to him. I have good days and bad days and days that are bad in the morning and good at night. HOwever, the bottom line is disease, disabitilty and just plain being different is not a bad word. I am thankful that I am not blind, I can see - you can see. sounds like you were blessed that day of your accident in the fact that you did not loose your sight. There is much worse things. I have just come to the conclusion that some day God will heal me and until that day, I will be stong with what I have - know that the only thing wrong with me is painful eyes and I may have this the rest of my life. Just keep trying all that YOU believe may work for you and I am going to keep trying things too. It seems that everyone has something different that works for them and you will never know until you try. sounds like you are a guy that has alot going for him...we all get in the dumps sometimes, but you cant stay in it....pull yourself up on a good day and make yourself strong enought to carry yourself through a bad day. Depression is just the devil telling you that you should feel sad and down, dont let him get you there, you have lots to be thankful for, just look for them. You got this! sue

[bojan89]

I just received the japanese eye drops and tried it on my left eye. In the beginning I was bit frightened!

After puting one drop in my left eye it stung maybe for 5-10 seconds and then it just felt fresh and kind of relieved. The next morning when I woke up I noticed that the left eye looked a bit less red then the right one, and it didn´t feel as dry. (FYI: My left eye was always a bit drier than the right one). In the morning I put another drop inside and it felt the same as with the first drop.
I will visit my eye doctor today and see what he thinks about these drops!

Conclusion: Until now I can only say, that it doesn´t make my eye red and it doesn´t make it feel sticky or even more dry. Further information will follow

Bojan

[wokoko]

Which japanese drops are you talking about?
Tks

[vinnieblanco]

Hi Marty,

We all have our good days and bad. I have been to 7 eye doctors and 2 neurologists in the past year and they ALL have something different to say to me. I still have no idea why one day a year ago I struggled to see. How did I get dry eye? I do not have any other ailments. I have been tested for EVERYTHING. One doctor finally yelled at me because I was crying and said, "there is NOTHING wrong with your eyes!" It makes you wonder if you are crazy! Doctors are just people, they do not know everything, most of them have NEVER even experienced dry eye and have no idea what we all go thru. they want to help us but only go with what they have learned. All I can say is just keep going each day. God says not to worry about tomorrow and do not be afraid - just give it all to him. I have good days and bad days and days that are bad in the morning and good at night. HOwever, the bottom line is disease, disabitilty and just plain being different is not a bad word. I am thankful that I am not blind, I can see - you can see. sounds like you were blessed that day of your accident in the fact that you did not loose your sight. There is much worse things. I have just come to the conclusion that some day God will heal me and until that day, I will be stong with what I have - know that the only thing wrong with me is painful eyes and I may have this the rest of my life. Just keep trying all that YOU believe may work for you and I am going to keep trying things too. It seems that everyone has something different that works for them and you will never know until you try. sounds like you are a guy that has alot going for him...we all get in the dumps sometimes, but you cant stay in it....pull yourself up on a good day and make yourself strong enought to carry yourself through a bad day. Depression is just the devil telling you that you should feel sad and down, dont let him get you there, you have lots to be thankful for, just look for them. You got this! sue

Philippians 4:13

I can do all this through him who gives me strength.

[MartyM1985]

Quick update... I am doing better after a three month break from computers & screens & etc. Easing myself back into semi-normal life. The pain in my right eye has lessened, but still flares up a tiny bit if I push myself too much.

So I am seeing a retinal specialist at the Jules Stein Eye Center at UCLA. Last week, I had a cornea topography done as well as a retinal ERG. My new doctor is trying to get to the root of all my issues and is a true leader in his field.

So there's a lot of hope lately... at least I can get an updated diagnosis and then we can work from there. It could be the retina, could be the cornea. Regardless, I'm on a new path in terms of trying to beat this whole deal. So thank you for all the support. I'll have another update in about a month. Thanks again.

[MartyM1985]

Another update...

The good news... two weeks ago I was killing it on the eye front! Was feeling great and getting back to work. I even got out to play some flag football again!!!

But then disaster struck, but it's not what you're thinking. I tore my right Achilles' tendon just taking off from the line of scrimmage. I basically started running and heard a big POP on my first step. This was after 90 minutes of play by the way... guess I just didn't have my foot planted or something on that play.

And soon after, my right eye took a crap again. I'm not sure why... maybe because of the pain medication? Dunno.

Went back to Jules Stein at UCLA, but before my right eye got bad again though. Doc said just stay on my meds... right now it's Restasis, Serum, & FML. Sadly, there was no new suggestion of treatment during my last appointment.

But the good news is that the right eye is slowly bouncing back again. It's very tough... I feel like I have to baby myself a lot with computer use and phone use. I have a big job coming up in two weeks where I'm gonna have to be on the computer 8 hours a day. If I can't do it, I'm gonna be very, very, very broken up about it. It could mean a lot of lost money (as if I haven't lost tens of thousands over the last two years anyway).

This is a ****ing battle I swear. I'm waiting for the day where it's going to be easy again. My leg will eventually get better, but Christ alive will my eyes ever be remotely normal again? Will a company finally come out with a drug that will enable me to live a full life again and let me follow my dreams?

Compromise is hard. Acceptance is harder. My life has been upside down these past two years. I'm tired of being "sick." I'm tired of having to fib to all my acquaintances about what's been going on with my life these past two years. I'm ready for this to end already.

Another day passes, but I'll wake up in the morning tomorrow, and it will be the same shitty situation. I'll continue to remain positive in the face of all this BS... I know I can do more than many in this world. But I can't help but thinking about how much I miss my old life. It seems so far away.

And I'm out. Take care friends.