almost 4 years of severe dry eyes since Lasik...

[MGD1701]

Thanks.

GLA: also increases tear production. Best is combined with omega 3 and food (Vit. E & C) & x2-3/day instead of x1. Not all supplements are the same. Many docs in USA recommend PRN and ___, I forgot the name - one of the brands has GLA. Omega 3: bio, cold pressed flaxseed oil. All these are based on my research from American professional journals.

Mask pad: Not sure if 50C is safe. Maybe better 15-20 min but 43C is effective but safer?
Interestingly recently I read an article - which one American dr said most people perforum warm compress incorrectly.
She added, should be at least 42C and 10 min.

Avenova: thanks for sharing. I have heard/read a lots of it and seems it is a trend. But only available in USA - however I have managed to find an alernative, which helped me in 2 days. Some 6 doctors said I did not have inflammation but I was curious to try NEW stuff.

[Guest]

Hi SAAG, are you still on here? I wanted to see if Restasis helps you since our stories are similar.

Hey Kayla,

You're right, our stories do sound very similar - even the timing of our Lasik was in the ballpark - I had mine in fall of 2005. Worst decision of my entire life. Grrrrr!

In any case, yes, I still use Restasis. I was using it four times daily for a long time, but since relocating to a humid, tropical climate, I can get away with only using it 3 times daily. However, when I return home to visit every summer, I find increasing back to 4 times daily starting a month before my arrival and continuing for the duration of my stay is useful (back home it's not tropical, so drier air and increased Restasis dose helps compensate a bit).

re: pain of dry eyes

Have you tried wearing moisture chambers? They were the single BIGGEST help at alleviating/preventing the pain of dry eye. Wiley X makes them... for something more subtle, Harley Davidson has some nice frames too (their foam gaskets are much more discreet compared to to the Wiley X's). If you wear the sunglasses version when shopping, people just assume you forgot to take off your sunglasses when you came indoors - makes a huge difference in comfort to wear them. For around the house, I used to wear the clear-lens Wiley X's all the time (nowadays, I only need them sometimes) - I hate the look of the ones with the clear lenses, but try to avoid looking in the mirror when I'm wearing them so I'm not reminded of that fact haha

Whatever you do, leave no stone unturned to find relief - there's hope! I rarely experience pain from my eyes these days as long as I take good care of them (including putting on my clear-lens Wiley X moisture chambers indoors at home if needed, and always having the sunglasses version (I currently wear Harley Davidson ones) when I go out - I even wear them after dark if I need the protection they provide from the wind.

[KaylaR]

SAAG Thank you

i am on restasis and also started Xiidra. I actually did find restasis helps to create tears. But still dry. i actually think doxycycline helps with my mgd. I was on it for one month and I swear oil was coming out. Then I stopped and got worse again. I didn’t realize at first what changed, So back on it. Wondering if it’s safe long term?? 50mg.

Love your stories and so so glad your doing well. Did you stop taking restasis when you were pregnant? If I remember correctly you had kids. I’ve read your stories on here.

[Guest]

I kept using Restasis when pregnant, for several reasons...
1) Absorption into the body at twice daily dosing is miniscule even if all 4 puncta are open... but see #2 because in my case...
2) I had all 4 puncta blocked (2 cauterized and 2 with permanent plugs at the time), thus blocking probably 99.9% of the already miniscule systemic absorption that would have been possible due to drainage of the medication down the tear ducts to the throat where it would be swallowed (that is the source of almost all of the active ingredient that ends up absorbed into the rest of one's body, and in my case, that route was blocked completely). I was using it 4 times a day, so exposed to twice the normal amount, but due to puncta blockage, not much of that was going in to my body as a whole anyhow.
3) My eye problems were over-the-top severe. To the point where if Restasis usage wasn't wise, I'd have seriously considered avoiding pregnancy altogether as I don't know how I would have made it through 2 x 9 mo. pregnancies (plus months of breastfeeding) without it.
4) I felt the risks were so small in my case that I honestly wasn't worried about it (see #1 and #2). Obviously if I felt the risk to a potential child was significant, that would be another story. But in this case, I likened the risk to being no more serious than the risk I take when I board a plane. Rare. Am I right? Or am I wrong? Definitely do your own research and come to your own conclusions, since it's an important decision, your situation could be different from my own.

Cyclosporine is a nasty drug when taken in the higher doses used for other medical conditions by MOUTH, with many awful potential side effects. So it's not something to be taken lightly. But the concentration in Restasis is very, very low and there is little systemic absorption into the body as a whole, when applied to the eyes as a drop, with normal use. How low is low enough? At the time I took it, Restasis wasn't well studied in pregnant women, if at all (I don't remember anymore if there were no studies or just hardly any studies, it's been a years since I researched that for my own situation) ... for this reason, I had to make my own choice based on what I knew and what seemed reasonable to assume.

re: Doxycycline long term

I used it for a few years because I was desperate and running out of treatment options. Due to the severity of my situation, short term needs for relief so I could function in life were far more urgent than any possible long term risks at that point - I figured I'd cross that bridge when I came to it. In the end, I was able to discontinue it eventually so I never had to think about "what if I need this for 5 years? What if I need this for 10 years? 20 years? 40 years?" etc. There are some concerns/risks with long term use - so definitely use it only as long as you need it. Just be sure to stick to science for your research, and don't waste your time reading fear-mongering "doxycycline is poison" pseudoscience type of websites/articles. It's not black and white... you need to know the nuances... stick to science and logic. I feel like severe dry eye causes us to make many trade-offs. Sure, the ideal is not to take anything that might harm us... but if not taking anything that might harm us means we're guaranteed harmed by our inability to work, inability to enjoy life, inability to even keep our eyes open (in my case), then the possibility of harm needs to be remembered as a mere possibility, not certainty. Whereas doing nothing is certain to doom us to a crappy quality of life. Anyhow, this last bit may not have been necessary for me to say... it doesn't sound like you're the type of person to be overly paranoid (we're all a bit paranoid, and that's probably healthy hehe... but you know... just don't let it take over).

Anyhow, I wish you all the best in your decision!!!

[maiuyen1909]

I have had 6 months lasik, that is the most wrong decision in my life. I am a single mom ,my daughter just 3 years old .My life is nothing too difficult. But now I am so desperate and think of death every day. dry eyes and pain. Who will take care my daughter ????

I can not do anything ... little things also can’t ...... just swimming wt her ... no i can’t ... and many other things i can’t . Bad thoughts like killing me day by day .... then after 20, 30 years .... when i get older ... my eyes will go away .... am i blind?!? ... really too afraid of the future .... what should I do now?!?
Sr for my sad story....

[Guest]

I have had 6 months lasik, that is the most wrong decision in my life. I am a single mom ,my daughter just 3 years old .My life is nothing too difficult. But now I am so desperate and think of death every day. dry eyes and pain. Who will take care my daughter ????

I can not do anything ... little things also can’t ...... just swimming wt her ... no i can’t ... and many other things i can’t . Bad thoughts like killing me day by day .... then after 20, 30 years .... when i get older ... my eyes will go away .... am i blind?!? ... really too afraid of the future .... what should I do now?!?
Sr for my sad story....

The best advice I can give you is to take it one day (or minute) at a time. Odds are extremely high that things will improve as they did for me, and countless others. Also, don't let yourself worry about the what if's for what will happen to you decades from now (easier said, than done, I know). This worry is useless, and will only cause you needless worry, sadness, and stress. Besides, for all we know, there will be a cure by the time we're old and grey. Cross that bridge when you come to it. Instead, focus on what you can do right now to get through this. It'll be worth it in the long run when you're back to enjoying life again. Even a year of suffering is nothing when you consider that you have decades of life to enjoy afterwards. Don't let this break you. You can get through it!!!

When your eyes can take it, read through the forums looking for things that have worked for others... there will be lots of trial and error, so you'll need to be patient as you try different things. But keep going... eventually you'll figure out a routine that allows you to get back to enjoying life again.