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

[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...

[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]

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!!

[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!

[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?

[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

[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