Feel very down - nothing works. Will this ever go?

[Shell]

For Sazy123 and sympathies with SallyP

I was just reading what you wrote about allergens.... Have you considered these as possible allergens if you use them:

nail polish on your fingernails? (I knew one person, similar to what you describe for yourself, who found nail polish to be the cause...she was touching her eyes and this was causing an allergic conjunctivitis/ dry eye response)

hairspray if you use it or other hair products esp leave-in products, those containing fragrance or sunscreens

mineral powder foundation: this can migrate into the eyes esp if it is loose as can moisturisers with fragrance, sunscreens esp the chemical sunscreens

eye lash curlers...most of these contain nickel which is a common allergen, some mascara tubes are also lined with nickel-containing materials and can cause symptoms like you describe..

Just throwing some ideas out there...
This, of course, doesn't explain why your symptoms improve when you are afflicted by sickness...
I have ocular rosacea and can't get to the bottom of my symptoms...I seem to have some sort of chemical senstivity going on to....my symptoms are awful and I need to ask for some advice on here myself. I hope you find some answers...

SallyP...I hope you find some relief...it's so discouraging and frustrating when you do all you can and end up still suffering or feeling worse...

Shell

[Lucy]

Hi Marge-I have dry eye from 10 years ago caused by Lasik. Then, if that wasn't bad enough, I was dx with Sjogrens 3 years ago. Dr says not sure how long I had it. Normal time for dx is 7 years.

I have tried both Salagen (generic) and Evozax. Neither helped my eyes at all. I read over on the Sjogrens board that the drugs help SOME people a certain degree.

I have not liked either of these drugs because of side effects. The Salagen gives you a spurt of saliva for about an hour and then you're dry as a desert again. You must take them 4xday to get max help. The Evozax(sp) gives me hot flashes as does the Salagen.

I'd say they are both worth trying if you can get your doc to go along. Lucy

[mylittlem]

Salagen

I see very little if anything written about Salagen as a treatment for dry eye in addition to dry mouth. I plan to ask my doctor about it tomorrow when I do have an appointment.

Anyone have an experience and/or luck with this prescription drug?

[thistledown]

ALLERGIES!!! ... ...I've had a hell of a time finding shampoo/conditioner without fragrance, and the biggest problem of all was a washing product here in the UK. Finally found Ecover - not the liquid (which is highly perfumed, albeit with natural essential oils) - but the original unscented powder.
..... Well, my eyes were getting a little better late last year, but I got some other (dental) problems and general stress stuff which led me to fall off the waggon so to speak regarding my diet. ... .

hello everyone,

i date my dry eye problems to way back - maybe seven years or more - but i didn't realise at the time that that's what those horrific middle-of-the-night waking up with your eyelids tearing away from your eyes, was about. in fact, it was only after getting something in my eye and having it removed under anaesthetic at the local hospital's eye department, that things got worse. i really begin to wonder if the learner-doctor rubbing away vigorously on the surface of my eye with his cotton wool bud (and the teaching specialist sitting calmly watching him do it) didn't do some damage, too.

i've also had dental problems, too - major root canal stuff last summer. i suspect there's a connection, but don't know for sure.

anyway - i too believe there's an allergy element to all this - i've always been a sneezy, itchy-skin over-histamined type - and i also think that stress has a very big part to play. in fact, perhaps the greatest part, in keeping the condition going and making it chronic? the depression i feel, on waking to yet another sore-eye day is profound, and not being able to work in my studio compounds the problem, because that's my way of de-stressing (among other things).

i reckon in my case the allergen is probably house dust, because i live in a rambly old cottage, with too many dusty corners to count (yes, in the UK ) but i have also noticed that the number of people with dry-eye is going up and up - and i think there must be something else going on. maybe oil seed rape? maybe pesticides? maybe... whatever.

for some time i've only used Ecover washing-up liquid in my washing machine - as a liquid detergent: it's much milder than their actual clothes washing liquid - use one teaspoon per wash, and make sure to give it the full rinse, not the eco-rinse. i started using it because a member of my family had bad eczema - it helped his skin a lot. but you can also get those ionising spheres which don't use any soap or detergent at all. Google for them.

i never use make-up, and only Pear's soap, which seems very mild. for shampoo: Avalon Organics lavender shampoo (no nasties) which is a little more expensive but lasts ages, and causes me no problems. i also use Avalon Organics lemon hand and body lotion as a facial moisturiser (etc) and have done for years. on the label it says: 'without artificial colours, synthetic fragrances or parabens. no harsh preservatives or grapefruit seed extract.' don't know what the actual preservative is; anyway, it works for me. you can get both the shampoo and the moisturiser at many health food shops, or buy them online - again, Google for them.

for eyedrops i'm using Refresh Plus, but it isn't enough for the night, so i've just got some Lacri-lube (PF in the UK) which i'm going to try tonight. and i've ordered a small humidifier from Amazon.co.uk - 'Vicks V-610E Warm Mist Humidifier £34.99' - delivery free. i truly hope to get a better night's sleep with this lot... well, one can always hope!

all the best, and here's to the good-eye days!

[diggylove]

just getting older

Thanks for sharing... This all just took a grip on my life in late '04...I am told, as best as has been tested, that is not auto-immune, but hormone-related (I am 60). Ths scariest thing is that I am getting worse over time...for all I've tried. I wonder about seeing my PCP for guidance with sleep/pain/anxiety but I realize her perspective would not necessarily be in line with "what's good Rx-wise for dry eyes." Still, my quality of life is slipping terribly & I need help with the depression, the headaches, the exhaustion. I feel sort of sub-human as I push thru my days &, yes, do go to work...in a hospital, of all places. What helps you to feel better? How compliant are you? What are your therapies? Right now, I'm on Restasis, Xibrom, moist compresses, Fresh Kote, Bio Tears & zo-omega 3 oil tablets, Oasis tears, Genteel gel at night. Also, too many pain relievers that don't help! My current doc just says to hang in there...but it's so hard. I feel I need something drastic. I am scared. Have a good day day!!

[Sabrina]

So sorry you are feeling so bad...

You never said what is your diagnosis and what you have tried... Do you ever have good days with this? Mine come and go and very thankful there are good days sometimes but trying to figure out what I am doing differently on those days...if anything. There are alot of good suggestions on here and of course alot seems to be trial and error. Did they tell you why you weren't a candidate for scerals? I think we can all relate to the frustration and depression that can occur with this.. I am saying prayers that you will feel better..

[diggylove]

it's ruining my life

For what it's worth, I wish I could get together with all of you...I am 60 & have been suffering & getting worse for 4+ years. My friends are you, names on the DEZ, who know how awful this condition is. In the real world, how can anyone know? My eyes are parched, burn all the time, I can't sleep more than 2-3 hours at a time, so I am totally sleep deprived, I get evil headaches, for which I take too may pain pills (that's a joke when it comes to helping the eyes themselves)...I currently am on Restasis for the 3rd trial...2 months later, no change...Bio Tears 4X a day (for 3-4 months), Fresh Kote & Oasis tears, I have Panoptyx moisture chamber glasses, do the heat therapy, & recently got 2 Form Fit plugs (after having 4 plugs for years, but then developed a nasty infection last year & all plugs were removed)...my doc was reluctant to try any plugs again, but finally gave in to Form Fit. No change! Next course: 2 more plugs...what else is out there? I went to Doheny Eye Institute at USC to inquire about the scleral lens & was brushed off. Maddening experience...do you have to have corneal damage first? My pressures are normal but high/normal, so steroids are ill-advised, but I've tried an array of anti-inflammatory drops, antibiotics, etc. ANYWAY, THIS IS RUINING MY LIFE...the constant misery is disabling to the point that, even if I get things done, I am in pain & exhausted to boot. Anyone live in So. Cal.? Please share...

[calcan]

I just wonder if any of you have had this experience. I have just had a week of hell; dry , red , swollen , burning eyes and putting in drops every 15 minutes. I have complained endlessly to friends about this and been totally isolating myself because I am so miserable. I have nothing else to talk about because it consumes my life. Like someone else posted, (while I am not actively suicidal) I feel many days like I would be happy to just not wake up. Today I had a good day. I had some friends over and I swear when I started to talk about my week of hell they "eye rolled" each other. I look normal today and almost feel normal. The few other times (since I've had this) I have seen friends I have also looked "normal" as when I am having a good eye day I want to get together with people. I am even wearing eye liner.. (thanks to the person who suggested the Mac liquid water proof kind). Even though I have put in drops a few times today it has stayed put and not irritated my eyes. All in all I had a day where I felt normal. What I have done different is use a humidifier and the ecco googles last night and am on my 6th day of Doxycycline...that (Doxy) I presume is what got me better the last time so I am assuming that is what may work for me (crossing fingers) although we all know long term antibiotic use is not good b/c eventually it will not work. But, While I want to be hopeful I know better than to be too much so ..as we know it can all come crashing down tomorrow. Have the rest of you had this experience with people; co-workers and friends? How do you deal with it? I know this is a real emotional roller coaster!!!

I never really talk about it with friends or co-workers. I always try to avoid being too close (physically) in hopes that my irritated eyes will be less noticeable. I guess I should talk about my condition (because I know people notice when they say things like "you look tired") - but I am embarrassed by it. I avoid a lot of social contact. Like you, I have good days and bad days. I have kept a food and eye-drop diary - but I cannot seem to identify the factors that give me good days or bad days. I feel like I have tried everything; however, I have not tried the anti-biotics - I usually have bad reactions to those.

[Sabrina]

genteal gel

In response to Liz... the gel provides immediate but not long lasting relief for me. I almost do better with the ointment. I know some people have cloudy vision but my poor eyeballs just seem to soak it up. The only thing I don't like is the oily goop all over the outside of my eyes but hey, what ever works. After my 6th day of Doxy I think I may be alittle better. I still don't have tears to speak of but the pain and inflammation is definately improved. Thanks again so much for all of you on here and your advice and kind responses. It makes such a difference!

[Sabrina]

Had a good day. Will it last?

I just wonder if any of you have had this experience. I have just had a week of hell; dry , red , swollen , burning eyes and putting in drops every 15 minutes. I have complained endlessly to friends about this and been totally isolating myself because I am so miserable. I have nothing else to talk about because it consumes my life. Like someone else posted, (while I am not actively suicidal) I feel many days like I would be happy to just not wake up. Today I had a good day. I had some friends over and I swear when I started to talk about my week of hell they "eye rolled" each other. I look normal today and almost feel normal. The few other times (since I've had this) I have seen friends I have also looked "normal" as when I am having a good eye day I want to get together with people. I am even wearing eye liner.. (thanks to the person who suggested the Mac liquid water proof kind). Even though I have put in drops a few times today it has stayed put and not irritated my eyes. All in all I had a day where I felt normal. What I have done different is use a humidifier and the ecco googles last night and am on my 6th day of Doxycycline...that (Doxy) I presume is what got me better the last time so I am assuming that is what may work for me (crossing fingers) although we all know long term antibiotic use is not good b/c eventually it will not work. But, While I want to be hopeful I know better than to be too much so ..as we know it can all come crashing down tomorrow. Have the rest of you had this experience with people; co-workers and friends? How do you deal with it? I know this is a real emotional roller coaster!!!

[msienkiewicz]

Sabrina,

I am a relatively newbie as well. I did start seeing a counselor, and it has helped me tremendously. My outlook is definitely brighter, and my eyes have improved as the restasis has begun to work. I have more tears, but the oil problem is still there. I wear goggles almost 24-7.

Ironically, I find that my eyes do much better in the air conditioning.
I'm sure my eye issues are also allergy related.

Best wishes,
Melissa

[liz56]

Sabrina,

Have you tried Genteal Gel rather than the ointment? A lot of us have had success with that.

You can get moisture-chamber glasses from a company, called Wiley and Panoptx are two brands that are discussed frequently on this board, and some of their models are sold at the Dry Eye Shop.

--Liz

[Sabrina]

Dry in AZ

Liz, I have recently ordered the moisture googles (I believe they are called Tranquil eyes) for the night. I have not gotten them yet. Right now I am just wearing a sleep mask. I did try the drops right before bed and then put saran wrap over my eyes and the mask on top as some other have said the plastic helps keep moisture in. Didn't seem to make a difference. Where do I find the moisture chamber goggles for day? I am in a new office (cube)as of Friday and have a/c vents hitting me from all areas with no way to adjust them. I am actually finding that putting the ointment in (even during the day) retains my comfort the longest. The blurry only lasts a bit. There is this goopy look to your eyes but at this point I don't even care so much how I look. I am more concerned with comfort.
As far as the depression that comes with this... I have tried Prozac. It helped but dried my eyes out worse so I had to stop. Has anyone tired meds. for depression that didn't make their eyes worse? Am thinking about counseling and hoping it might help...

[liz56]

Hi, Sabrina.

I sounds like the conditions of the air have a huge effect on your eyes. Have you tried or considered moisture-chamber glasses for daytime or something to cover your eyes at night?

--Liz

[Sabrina]

dry climate

My newest eye Dr. told me he tells people to move to Houston. He thought he was being funny but I have no sense of humor left about this. I grew up in ND and family would love me to come back. But I think it would be the same as far as cold winters, the need for heaters, and then there is the wind. I am actually thinking of some place where it is fairly warm and humid most of the time...Hawaii, San Diego etc... Of course I'd need to rob a bank first! I actually had a Dr. here tell me to avoid fans and air conditioning. I live in ARIZONA so that's not even realistic. This makes me so crabby! The good news is I am single and so if I have to uproot it is only myself. However, I am 46 and not to thrilled about having to start over somewhere new.
I am so thankful for this site. I think back to the complaining I used to do over mundane things. I so wish I could go back to those days!