i just cannot stand this anymore.... :(

plus me no longer being able to wear my Wilex cause the foam just burn my skin and my upper lids.... just feel like im so fuc**ed up

So sorry to hear you're still having so much trouble!!!

However, the foam thing to me, is a giant clue that maybe you have some kind of chemical sensitivity thing going on... Why are YOU sensitive to foam, when most others (even total dry eye freaks like me) are not?

If I were you, I'd do the following:

a) try a different brand of moisture chamber glasses - maybe the foam they use won't bother you - OR, look into getting a pair of custom moisture chamber glasses made (everything you need to know is in my blog post: http://www.dryeyezone.com/talk/entry...e-chamber-pics ) since those use a plastic, rather than foam - with eyes as irritated as yours, you NEED to protect them and odds are high that moisture chambers will help, as long as the foam doesn't cause a bad reaction.
b) start eliminating as much as possible the chemicals that your eyes are exposed to - ex. rather than a regular cleanser for your face, try one made for sensitive skin that has no fragrance and is hypoallergenic - when you're in the shower, maybe the shampoo washes over your closed eyes when rinsing and you are reacting to that, could try a hypo-allergenic shampoo etc. - maybe you've developed a sensitivity to the laundry detergent you use and that's messing with your eyes since they are touching the bedding that said laundry detergent was used to wash - basically, just experimenting like made - I'd give any changes you make about 4 weeks before you decide if they are helping (and take care to change nothing else that could affect your eyes during that time, since otherwise you won't have a clue what made the difference)
c) go hard-core on babying your eyes - bank on doing this for 2-6 months before noticing any major improvements (and even then, the "major" improvements may not be as big as you'd like, but as long as you're moving in the right direction, it's better than nothing, right?) - by hard-core babying your eyes I mean:
(i) wear moisture chambers for all waking hours
(ii) no TV (do the listening to it with eyes closed thing)
(iii) no computer other than the bare minimum (for me, this meant 15 minutes a day at most)
(iv) no reading (I used audiobooks instead)
(v) eliminate the things that drive your eyes bonkers
(vi) eyes hurt? then rest them - close them and relax with a cool compress - yes, this might mean doing so for a few hours each night (I speak from experience) - yes, that totally sucks - but, it's doable, and you won't be doing this forever, it's just to get your eyes over this flare-up

Again, up to 6 months of that nonsense sounds like forever, but it's a tiny blip in the big scheme of your life... trudge through it and you'll get to the good stuff waiting for you on the other side...

Aaaaand, if you haven't already, read through the chapter on the treatment of dry eye in the DEWS report that I linked to in a previous post in this thread (this is the one exception to the no-reading-rule for hard-core babying your eyes) - you can use all the downtime you'll have resting your eyes thinking over what you've read and strategizing what your ideal treatment plan will be, and strategizing for how you'll obtain said treatments. This is all a total pain-in-the-a$$, but you gotta do what you've gotta do - you only get one life, and you need to fight for it to be good sometimes - it's worth fighting for, and no-one will do a better job of it than you can.

Become an expert on all-things-dry-eye - for most of us, it's necessary, since no-one will know your eyes better than you do, and no-one will care more than you do about getting them back on track.

Hang in there!!

[nicolasdu92130]

i did but no numbers

by the way, there is clearly something wrong, and it get me very anxious:
like i said my eyes burn a lot, i took a look at them five minutes ago and there were almost bloodshot (its congruant with the burning sensation) so i don't know why, maybe an infection from serum drops ?? its just piss me off that nothing can go in the right direction, there is always a problem, i was expecting a relief with serum drops and 10 ten day after my eyes are worse.
will call the doc

plus me no longer being able to wear my Wilex cause the foam just burn my skin and my upper lids.... just feel like im so fuc**ed up

[Katewest]

did you not get a lipiview? I thought you had to get one with the other ?

[nicolasdu92130]

ok months, but come on 2 months right now and absolutely nothing, there is something wrong...
and they did not tell me the numbers no , she just said that its was toothpaste-like...

[Katewest]

I've heard it could take months to start feeling better after lipiflow. Nic- What were your lipiview numbers?

[nicolasdu92130]

thx for replying, it helps me to stand back and see the bigger picture: serum drops might be healing my eyes right now even if i don't feel any relief now.
okay so i will wait until it works lol, sometimes we got to go by faith right^^

by the way, about Lipiflow, its been almost 2 months and absolutely no relief, my MGs may produce more/better oïl but i feel no positive change, so its was just a major waste of money...

When I was on 25% serum tears I could only tolerate 6 drops per day. Anything more and my eyes would feel horrible, like something was in them. They did not soothe very much at all. I felt no better after a few months using them and stopped.

As ebel says, we are all different and all of our conditions and co-morbidities are different. So what works for one may not work for another. And always, all the co-morbidities will eventually need to be addressed.

[ebel]

About autologous serum eye drops , I’ve never felt a real relief using them . Rather, many times I’ve felt a little burning sensation (I also believe the saline is the reason. My concentration is 20%). So I 've always tried to alternate it with other eyedrops, especially the Endura and sometimes Hylo Comod . And why do I like the autologous serum eye drops ?
Because , even though I do not feel relief with it, I feel that it heals my ocular surface . When I started using it my situation was hopeless . Then gradually I felt that my cornea was “getting healed”, gaining strength . Before it , I had tried doxycycline for a month and felt no diference . I had tried steroids for more than 40 days and nothing . My eye ocular pressure reached 19 . Things only began to improve with autologous serum eyedrops .
As soon as I started using it I felt something different. In fact , I felt symptoms like yours, but at no time felt relief with it . In a few moments, the serum drops bothered me . But the interesting thing is that gradually the Endura and Restasis started giving me some comfort .
In a summary, I had to work with my sensations until you I find the best balance (the pathway has many ups and downs).
I started using it eight times per day. Currently, I only use it 3 or 4 times per day (in good days, sometimes less, and in bad days I put more).
The beneficial effect really did not come in just three days . It took over. After almost three months using them I think I 'm still in progress and I plan to continue with the concentration.
I have searched a lot. About MGD, about medications under research and about remedies not available over here . I am perfecting techniques of cleaning the eyelids. Trying other medicines. I’ve been using doxycycline again (four months ago it didn’t help me, and I think it has given a little improvement with only 15 days)
Anyway , we are all different and we react differently to treatments. In my case, the autologous serum eyedrops helped me overcome one my worst moments. It allowed me to regain hope and to fight.

[nicolasdu92130]

ok little update:
got my serum drops 10 days ago and right now thing are not as good as i expected: it seems that serum drop do nothing to my eyes ( no stinging, no burning right after i put them, no improvement either in inflammation or in symptoms).
The drop itself is not soothing, i do not have any relief when i put them in my eyes and my eyes feel a bit sticky and itch a little bit after.
By and large my eyes burn more than before, especially in the afternoon and it becomes pretty unbereable at nighttime.

so whats wrong with my eyes ?? doc said that autologous drops were fantastics, that i should feel relief in days ( he said 3 days ).

maybe 20% is not enough and i should ask 100%.
the saline might be at issue for the sticky and burning felling???

any thoughts ?? especially people who had side effects with serum drops

[nicolasdu92130]

again a rude rude journey: start to suffer 3 mn after i got to school, paiunful, sticky, dry and burning eye all day long. wear my wiley-x outside, but they are very incomfortable (need the headband very tightened on my face) + my eyes are not comfortable in them (sticky feeling, maybe because of the foam), therefore i don't wear them Inside and at home...
i have very very high expectation and hope about serum drop, don't even want to read nything about it cause i might see something bad that could discouraged me.

[nicolasdu92130]

too late for the dark ones lol too expenseive (400 dollar for wilex (prescription)).

i have an appointment for the blood for the serum drop in 10 days, they i will have the serum drop in 20 days. its just so fuc**ing long, every day i got the feeling that my eyes worsen, despite all im doing (im in wilex every time at home and outside just before and after school), left school earlier today cause too much pain.

im really counting the day for the serum drop cause im just gonna explode if it continue like this.

[bakunin]

nicolas,

I wear Wiley-Xs (air rage either) and I know what you mean.

I had to wear with clear lenses at waork because the AC was unbearable. The lenses had prescription.

Ths year I bought one with dark lenses (no prescription), and I wear them when I'm outdoors, in shops etc. It was the best thing I did this year (buying an air rage with dark lenses). The lenses aren't so dark, and for my level of photophoby, they are perfect. I'm not pretty wearing them, but they looks by far more normal them wthe clear lenses one.
So, I would suggest you get one with dark lenses. Maybe you would look 'normal' enough to wear them in the class.

I know it is hard and your symptons are much like mines, or like they were last year. This year I'm much better. I know wearing the wiley-x outdoors has a lot to do with it, and even more the AC kept off at my workplace.

wish you best

[ebel]

It is really strange, but what bothers me most is that it does not give me a complete comfort (it doesn't block all the wind). Regarding the aesthetic part, I have overcome. At the beginning, I avoided using it, but not anymore. After all, the people who supported me at my worst moments did not bother with the googles. Also, to my surprise, there are people who think the googles give me a sophisticated/fashion look. Unfortunately, I do not agree. I try to put in my mind that they are only temporary.
Another problem: the way to wash the original foam, considering the msg posted by Bakunin in a different thread: “But unfortunately the replaceable cartridges you can buy when the foam gets old aren't as thick as the originals, so they don't fit as well".

Serum drops can be done quick from our own blood. I don’t know the reason to wait one month.

[farmgirl]

I hear you re: the glasses. I call them my raccoon glasses and am very self conscious in them. The ones with dark lenses on the other hand look fine because you can't see that dark ring and I wear them constantly with my head up even lol. Why don't you get some dark ones?...F/G

[nicolasdu92130]

okay okay some good news (finally): just cameback from a specialist of ocular surface. he was nice, knowledgeable+ give me hope:

he said that clinically speaking, my eyes are not so bad : mild blepharitis, and TBUT of 10 sec ( i was shocked). he also said that i have allergic signs.

butr considering how sensitive are my eyes he made my a Cofoncal Microscopy and turned out that although my cornea's nerves are normal, there are a proeminent amount of inflammatory cells (basically my corneas is hypersensitive).
so since i tried ciclo and many other treatments, he told me that i will gave me serum drop to alleviate the inflammation and because its very well tolerated. will get that in a month. ALso said that if it doesn't work, will consider sclera lense.

so a month is long, but now i got hope and i will wait

btw, now i don't give a fuc* about how bad i look with wilex, just walk head down and thats it (prefer this to Wind in my eyes)