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

[dryeyedave]

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

[runnergirl]

Hi Faith,

My eyes have never been visibly red. No, I really did not notice a change until the 5 month mark on restasis. everyone is different I guess and like Marty said, you really have to be patient. I used to log my days on a scale of 1-5 1 being a bad day and each week carried a different number. But over the months, the 1 days seemed to taper off. Now I no longer log because my days are finally stabelized I would say a 3 or 4 and that is good enough for me. Nice and manageable. It has been a month since I have had a 1 day. So, yes, the restasis is helping. Along with praying of coarse! sue

[MartyM1985]

Hi Martym1985,

I just thinking 50 Doxy two time per day will give you the same effect at low price ...What do you think ?

Possibly. I don't pay much for Oracea, so it's not a big deal. I think it's $35 for Oracea and $15 for doxy.

[Dog2012]

Hi Martym1985,

I just thinking 50 Doxy two time per day will give you the same effect at low price ...What do you think ?

[MartyM1985]

I should mention something important I learned/experienced about doxycycline.

There was a small stretch at the beginning of my recovery where I was just on Oracea in terms of prescription pills. Oracea is an acne drug for rosacea acne conditions (I called it "oracea" in my first post, whoops) that is a form of doxycycline. It's a 40 MG dose, once a day.

Anyway, my "expensive" doctor I tried originally just wanted me to stay on Oracea and not use additional doxycycline pills. However, my "new" doctor (my current one/the good one) prescribed me 50 MG of doxy to help with inflammation to take in addition to the Oracea. So basically I had two doctors telling me two different things.

Long story short, once I added in the 50 MG of Doxy with the 40 MG of Oracea on a daily basis, I saw a pretty substantial improvement regarding the inflammation of my eyes. It was something I definitely noticed overnight after the first night I took the additional doxy. The inflammation decreased a substantial amount.

So I guess my take is that I do think doxy helps with inflammation. Regarding its affects on MGD & oil production, I have no idea. But I do believe doxy has helped me significantly in the last year, and I continue to take it on a daily basis.

[MartyM1985]

Hi Marty,

so much info. I have been reading your threads periodically - I like how you are so positive. I just started this venture Oct. 2012. It has been just a year for me. I started with blepharospasm - my eyes kept closing while I was driving or outside with the wind. I went through 2 rounds of botox, then I went to a new doctor that said my main problem was not blepharospasm but extreme dry eye. I started restasis last july - it has been almost 6 months and I really did not start feeling better until this month. I am just now noticing a difference, so you are sooooo right with being patient. I have been watching to see what you have been saying about it and you have been very encouraging so thank you.

Just curious about the fresh kote. I am surprised that no one really talks much about it. does it work good? thank you for your response. sue

Thanks Sue. It's not always easy for me to be positive, but I'm very blessed in that my condition has been consistently improving over time. However, this does not mean I don't have bad days and bad weeks, cause those definitely happen too. I just take one day at a time and focus on what I have to do in the immediate future with my life... can't worry about what's gonna happen way down the road.

In short, Fresh Kote usually gives me longer relief, but it also stings a bit when I am very dry. Back immediately following my eye injury in the summer of 2012, my original doc prescribed me Fresh Kote, and it did not sting back then, probably because I wasn't as dry back then. I think it's pretty good overall, but no magic bullet by any means. I also hate the applicator... the tip always gets clogged because when Fresh Kote dries up, it leaves a plastic-like residue.

Restasis stung a lot when I first started using it, but I noticed SLOOOOOOW improvement from the very beginning. Slow, meaning Restasis for me is like gaining 1 yard a day on a 1,000 yard journey... you're probably not going to see major day-to-day improvement (echoing what I said earlier about the progress you make in a week is what you would expect to make in a day). Also, I often get a lot of relief from Restasis at the end of the day, when my eyes are more dry and inflamed. But there is no reason to stop after a few months.

[Faith1989]

Runnergirl, so you didn't notice a difference with restasis for over six months?! Are your eyes visibly red? Has it helped this?

Thanks

[runnergirl]

Hi Marty,

so much info. I have been reading your threads periodically - I like how you are so positive. I just started this venture Oct. 2012. It has been just a year for me. I started with blepharospasm - my eyes kept closing while I was driving or outside with the wind. I went through 2 rounds of botox, then I went to a new doctor that said my main problem was not blepharospasm but extreme dry eye. I started restasis last july - it has been almost 6 months and I really did not start feeling better until this month. I am just now noticing a difference, so you are sooooo right with being patient. I have been watching to see what you have been saying about it and you have been very encouraging so thank you.

Just curious about the fresh kote. I am surprised that no one really talks much about it. does it work good? thank you for your response. sue

[MartyM1985]

Thanks for sharing your experience, Marty! I'm glad that you are doing better and I agree, the process of healing takes so much time. Can I inquire more about why PROSE didn't work for you? Was it the fit and/or you found no relief? Have you tried other scleral lenses? I'm currently looking into jupiter lenses.

Went to USC & tried the PROSE lenses. This was about... May 2013, so I was still pretty bad at this point.

In short, after I put them in, I still felt like I was drying out at the usual rate. Who knows why. It is very possible that if I tried them now, 8 months later, I might have more success. My eyes were still very stressed out and much worse off back then.

I remember they fit generally fine, but I can't say they were 100% comfortable either. I guess I'd just have to get used to them. It's hard to tell what they should feel like since there's also a suction-effect with the PROSE lenses... much different than contacts.

[MartyM1985]

Hi Marty,

You have forgotten the most important supplement, Taurine. Also in this study, Taurine, along with Superoxide Dismutase (SOD), Epigallocatechin gallate (EGCG) has protective aspects for UV exposure in the human eye:
http://www.ncbi.nlm.nih.gov/pubmed/17386139

More about SOD
http://www.lef.org/magazine/mag2006/...ort_sod_01.htm

Also, this study shows EGCG being important in protecting cells after UV exposure
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2629900/

I personally don't think people should take Fish oil as most of all has mercury in it. Also eyes need Nitric Oxide to regenerate cells, hence you might consider integration of L-Arginine supplementation.

Logan x

Funny how a year ago, no one was talking about Taurine whatsoever. NAC was the hot supplement of the moment.

Thanks Wolverine, I'll definitely look into it.

[hosanna13]

Thanks for sharing your experience, Marty! I'm glad that you are doing better and I agree, the process of healing takes so much time. Can I inquire more about why PROSE didn't work for you? Was it the fit and/or you found no relief? Have you tried other scleral lenses? I'm currently looking into jupiter lenses.

[littlemermaid]

Really, it's just been trusting my gut on what works and what doesn't.

Great advice, Marty

[Logandly]

So prescriptions & supplements...

SUPPLEMENTS
Whole Foods Multi-Vitamin - 1X (specifically recommended by my acupuncture guy)
Vitamin C - 1X
Vitamin D3 - 1X
NAC - 2X (I tried the NAC for a while, though MGD isn't my main problem... couldn't tell you how much helped cause I was taking everything)
Triphala - 2X (cleanser, I often stop taking it if I'm pooping out too much liquid)
Glucosamine-chondroitin - 2X (this is for joints)
Fish Oil - 2X
Cod Liver Oil - 1X
Lutein - 2X
Magnesium - 1X
Evening Primrose Oil - 1X (no longer take this one)
Sibu 7 Sea Buckthorn Oil - 2X (learned about this one through this site)
Probiotics 1X

I will post about my diet next, probably not today though. Any questions, leave them below.

Hi Marty,

You have forgotten the most important supplement, Taurine. Also in this study, Taurine, along with Superoxide Dismutase (SOD), Epigallocatechin gallate (EGCG) has protective aspects for UV exposure in the human eye:
http://www.ncbi.nlm.nih.gov/pubmed/17386139

More about SOD
http://www.lef.org/magazine/mag2006/...ort_sod_01.htm

Also, this study shows EGCG being important in protecting cells after UV exposure
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2629900/

I personally don't think people should take Fish oil as most of all has mercury in it. Also eyes need Nitric Oxide to regenerate cells, hence you might consider integration of L-Arginine supplementation.

Logan x

[MartyM1985]

So prescriptions & supplements...

I will first tell you it hasn't always been consistent. When I was REALLY bad at the beginning, I was taking a lot more stuff and trying a lot more things to try to get better. For example, I used to drink a lot of teas (highly recommend chrysanthemum tea!) and take a lot of Chinese herbs (try Qi Ju Di Huang) when it was REALLY bad. Who knows what worked and what didn't... I was taking so many supplements back then it was kinda crazy.

I should also mention I did try acupuncture as well (4 separate hour long sessions), which definitely helped with overall stress. I'm not sure medically how much it helped with my dry eyes, but I always felt better overall leaving the office. The doc also tried some needles in my knee (I was hit by a car on my bike in the past year as well... 2013 was not fun) and that helped a lot with some pain there. With that in mind, I'd say it's worth a shot. I'm a believer in the practice, just not sure how good it works for dry eyes.

ANYWAY... here is everything you want to know. 2X means "twice a day."


PRESCRIPTIONS
Restasis 0.05% - 2X
Oracea 40 MG - 1X a few hours after lunch
Doxycycline 50 MG - 1X at night
Permanent Plugs in all ducts (four total)

I am a believer in Restasis. I'm still seeing progress with my condition A YEAR later. So you people thinking about quitting after a couple months? I wouldn't. I also HIGHLY recommend "permanent" plugs. If you want more info on plugs, please ask... there's a lot to tell about em that I've learned.

I should mention I'm about to start pushing my doc to get me on autologus serum drops. Both of my docs I've seen in the last year have been hesitant to put me on them, not sure why, but I'm tired of being just "OK" when I could potentially be making more progress. I'm determined to find a doc who will allow me to at least give them a shot if my current doc still isn't all about it.


DROPS & GOOP
Refresh Plus (preservative free)
Refresh Celluvisc (preservative free)
Refresh Optive Sensitive (preservative free)
Systane Nightime Overnight Relief Gel (preservative free)
Fresh Kote

I have tried almost all the drops over the course of a year. What's important is using the ones without preservatives. Otherwise, whatever you like best, use em. The Refresh Plus drops are available at Coscto for cheap, so I use those the most. The other two listed are also good and work better overall though, just cost more money. I also like Systane Ultra, but they're also too expensive to buy regularly. Finally, I put the Systane Nightime in my eyes at night. I would love to get off it at some point, but not sure when that time will come. Fresh Kote works really good, but can sting if I'm really dry.


SUPPLEMENTS
Whole Foods Multi-Vitamin - 1X (specifically recommended by my acupuncture guy)
Vitamin C - 1X
Vitamin D3 - 1X
NAC - 2X (I tried the NAC for a while, though MGD isn't my main problem... couldn't tell you how much helped cause I was taking everything)
Triphala - 2X (cleanser, I often stop taking it if I'm pooping out too much liquid)
Glucosamine-chondroitin - 2X (this is for joints)
Fish Oil - 2X
Cod Liver Oil - 1X
Lutein - 2X
Magnesium - 1X
Evening Primrose Oil - 1X (no longer take this one)
Sibu 7 Sea Buckthorn Oil - 2X (learned about this one through this site)
Probiotics 1X

Again, I also tried many Chinese herbs and other various supplements along the way, but have cut them out in recent months dude to general improvement. Really, it's just been trusting my gut on what works and what doesn't. I'm gonna stick with the Sea Buckthorn oil for a while though... you'd think that one is unique enough to where it might be helping? Dunno.

But I will say I should probably still be drinking chrysanthemum tea. You really can feel it working. Maybe I should go buy some again... :P

I will post about my diet next, probably not today though. Any questions, leave them below.