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

[izzy3usa2002]

get blood work done

Sally sorry to hear of all your pain. Have you had blood work done to check for Graves disease or a thyroid disorder? I did and I will be on meds and the doc said will cure my dry eye. Please go to an internist they specialize in the whole body. plase get blood work done to rule out other problens. Hope it works for you.

[SallyP]

I've ordered some Systane ultra to try. I love the lead up to trying something new, it briefly makes me feel hopeful, but will probably lead to more disappointment and pain, like the two i tried recently. The last one I tried, forget it's name, made my eyes so unbelievably bad, I just had to go to bed, and in desperation, flushed my eyes out with water - bad move, but I was desperate. Fingers crossed, I'll let you know how it goes.

[east12]

I had many problems that randomly came up.
By Chance I happened to get Systane Ultra eyedrops which had really saved my life (no joke). The pain was not tolerable and doctors had said "yes there is irritation but no dryness" and that "you're eye is physically healthy"..... yeah right.

Systane Ultra is certainly worth looking into, i cant make any guarantees but it really did save me from going insane.
Although I dont think I have dry eye, because the only complication that is present everyday is the eyelash feeling, the rest are...... varied by week.

If you havent tried it I hope it helps

I also know the mental state you're talking about, knowing it will always be here. I've had Lasik which does depress me at times to, especially when a starburst takes up my entire field of vision. It may sound empty but try not to let it get the best of you. Its a battle on its own.

[stephgurl1986]

I also believe that allergies might be the key problem- I got tested on loads of stuff but it seems that I'm not that allergic - BUT you have to keep in mind that there are also food intolerances which cannot be measured- and that might cause dry eyes as well...

[skygoddess]

I had mostly very bad days with an occasional good one thrown in just to make me crazy. I did not have the itchy watery thing either.
I saw countless "experts" they diagnosed me with blepharitis, ocular rosacea and severe dry eye. About Dr # 5 or 6, casually mentioned it may be allergies.
I had done everything else to not much avail.
Tried every drop made, including allergy drops, only Azasite had helped at all.

Finally decided to get serious and determine once and for all if it was allergies,
Got tested for contact allergies, then
Took EVERY SINGLE product, bottle, jar ,box, tube, bar, creme , powder etc, and put them in big totes. Washed all my linens and clothes in fragrance free detergent, and introduced only items without fragrance very slowly back into my life. Actually had to give away most things. Repurchased items with the fewest possible allergens.
And HOORAY! It works!
Changed almost every product in my life, have to carry my own towels and sheets to hotels. I don't allow any fragrance in my home.
Unless I have a accidental exposure , I am pain free!
I was nearly suicidal from the pain before. I had a mini breakdown in the pharmacy one day after another futile Dr visit, just couldn't stop crying.
Now it is just a hassle, but I am so much better it is wonderful..

[eva b]

Allergies

ALLERGIES!!!

sorry to shout, everyone, but this topic really makes my blood boil as so many docs are completely dismissive about it, whereas I feel it plays a major part in many of our problems...but on a subtle level.

Since no specialist has been able to find the cause of my posterior blepharitis, an inflammatory condition - and rememember inflammation is caused by the body producing histamine in response to something it doesn't like - which is at the root of my MGD, that gives me a dodgy tear film...I am totally convinced that there is SOMETHING in my environment which I use, eat, breathe in, touch or whatever that my body doesn't like.

And I think FRAGRANCE is a major factor...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. Almost at the same time someone told me about Soap Nuts (yes, nuts which produce saponin, you can google it) which you put in a little bag with your washing. No smell at all. Both seem to work in terms of cleaning clothes,

It's only been 2 weeks, but I am cautiously optimistic - not that my eyes will get completely better, but at least I don't get that immediate "hit" of perfume when I open the wardrobe door!

Another factor I think is diet, which can play a big role. I know it doesn't really seem related, but here's my 2 cents worth anyway.

I've been a big follower of the Blood type Diet for about 7 years (www.dadamo.com for anyone who is interested) and cured myself of some chronic, long standing digestive problems which all medics had failed with in just a few days by eating the right foods for me.

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. Which means I've been eating quite a lot of foods which I know aggravate my system and cause inflammation (eg for me...I am type O...wheat is a real baddie, as are corn, potatos and certain beans) and myh eyes have been consistently getting worse and worse all year.

I've basically got very lazy and was eating loads of ready prepared, processed foods.

Last week I took the decision to go back to being really strict with my eating, which was very, very hard to do (as well as time consuming and boring!) and guess what....less than 2 weeks later, my optometrist said today "my goodness, what an unusually high amount of nice clear fluid we're getting out of your glands today..." - and my eyes have certainly felt a bit better in the last couple of days. It takes a while to get the c**p out of your system, obviously...

I rest my case.

I hope this is not just a coincidence or a flash in the pan, but for all you desperate people, it's something to think about.

I'll report back again in a week's time with an update.

Sorry for the length of this post, but I felt it worth sharing my experience, as we're all in the same desparate situation.

[sazy123]

I get the opposite, my eye problems end up being being blamed on allergies despite me saying no itching etc and tried everything.

I really think its just ocular roscea, allergies for me doesnt make much sense- i dont really use products near my face-dont wear maycup as i cant, tried organic shampos etc but dont wash hair for 3 days as it doesnt need it. Eliminated dust (going to do this more thorough at some point though). Just washed with water- no products for a while. One thing i havent tried is evaluating washing clothes.

skygoddess did your eyes fluctuate when they were bad? when you used more products at certain times?

Mine dont flutuate - always the same (except if ill) so that doesnt suggest allergies.

also did you have benefit from allergy drops- patonal or steroids etc?

Im interested to see what Dr toyos thinks i expect he will say theres an allergy component again, im just so frustrated because theres no match between what the eye doctors say and what the allergists and everything ive done for allergies suggests. Feel like banging my head against a wall!

[Jamus]

Hi Sally P and 'all who replied'!!

I think one of the problems is that we are all so different although we've all got 'dry eye' My tear glands just don't work anymore and I do watch the allergy situation as I also have excema. It is funny how you are worse in the evening Sally. I've had corneal abrasions in the past, tried all sorts of eye drops and gave up on lacrilube but back using it now as I feel safest with it at night. I am considering a humidifier this winter. I totally understand your feelings of despair. I felt very isolated when first diagnosed 27 years ago as I was told by my doctor I was too young to have dry eye. it was mild then certainly but got severe about 10 years ago without as much as a 'you ready for this girl.' This site has let me see there are other people out there with dry eye and a lot are much worse but some days I get very down too and would love to be able to do things without having to give my eyes a second thought. Mother Nature has the tear structure just right but when she goes wrong .......
Best wishes to all

[irish eyes]

Hello Sally

That is exactly the response I get if I mention allergies.

Having said that, I did go through some rigorous testing several years back and nothing came up as being a problem. The practitioner wrote back to my GP - detailing the test and describing me as `.....fast becoming a wreck because of the problems with (my) eyes.....'. Not the most flattering of descriptions but at least he acknowledged that something was wrong and that I needed help from someone!!!!

Dr L mentions the difficulties of allergy / Dry Eye on page 185

If you want to pursue the allergy angle, are you familiar with:

http://www.allergyuk.org/

http://www.ecomed.org.uk/practitioners

[SallyP]

This is so interesting, thank you everybody. Every time somebody suggests something new, it renews my hope that I may get better, and even if short lived, picks me up a bit. I'm going to try and eliminate the frangrance as you say. Painstaking, but also as you say, not as painful as dry eye pain!!

When I mentioned allergies to my eye specialist, he dismissed it and said I would have different symptoms, eg watery, itchy eyes??

Thank you again for your time as always everybody - fingers crossed.

[skygoddess]

I use Tide Free or Arm and Hammer Free.
I have a fragrance allergy, along with several others.
Fragrance is a fairly common culprit Its in almost everything, under one name or another. Even Fragrance free and unscented can be misleading labels.
The website I listed has a comprehensive list under allergens charts long.

It suggests going fragrance free for 6 weeks, and if your problem clears , reintroduce items one at a time.
I reintroduce one item a week. Sometimes a reaction takes 3 days to occur, then another 4 to clear up,
So a week is minimum for me to get up the courage to try a new product.
But, I start by using the items from the list with the fewest allergens listed,
and I have been pretty successful.

Its hard , but take inventory of all the potential allergens in your life.
You probably use dozens of potential allergens every day without realizing they can do so much harm. I really did not believe my Dr. ,
but when nothing else worked, I had nowhere else to turn.
It is a HUGE hassle to change out all the products in your life, just listing them can take weeks, but I will take a pain in the ass , over eye pain any day.

If allergies could be your problem, realize all your things are going to need re-washing , and everything needs to be reevaluated.
For instance, my make-up was fine, but, I was using a latex sponge to apply it with . ( A big no-no with a rubber allergy) Likewise for eyelash curlers!, rubber pen grips, coffee mugs, even my remote control on my TV has rubber buttons! My husband pointed out my electric toothbrush had rubber on it just recently. My point is I never suspected I could be in such extreme agony over something that I used every day, and had no other adverse reaction to, except for my eyes.

[sazy123]

I know just how you feel. I have gotten better, but memories of breaking down, screaming and crying, alone in my car, are never going to leave me.

I am convinced allergies play a bigger role than any of us knew.
I had a few bad days during the last couple of weeks, and I traced the problem back to detergent. I had changed my clothing out for the seasons,
but forgotten that my last years clothing had been previously washed in detergent containing fragrance.

Even a year later, trace amounts of fragrance put me right back into hell.
If you are constantly in pain, I am willing to bet it is a common item, rubber, nickel, or maybe a soap, shampoo, or cosmetic you use daily. Even permanent press fabric can be a problem for some.
Reactions can take up to 3 days, so you really have to be a detective, but if it is allergic conjunctivitis, you can get better.
I did.
http://www.scheman.com/brochure.asp
Look here for some useful lists of common allergens . Look under sensitive skin products for a list of cosmetics and a care routine for eyelids.

Hi,

I really wish this was the case for me, i have conjunctivitis of inner eyelids and docs have said i have allergies. But i cant find the allergen- i haven't looked into detergent though- but sometimes i wear the same clothes for days and i don't notice a difference. Also i dont use soap near my face and tried eliminating hair products etc.

What do you wash your clothes in?

[sazy123]

Sally

I wish there was something positive to contribute but I'm also living in silent desperation.

Eva - your point about losing hope really struck a chord because of the length of time I have suffered with it and how nothing has changed in terms of:

a) Me getting any better
b) The predictable display of doctors' nonchalance as I experienced years ago.

I'm waiting for the outcome of a request for autologous serum but in the meantime, the opthalmologist has tried to talk me into considering:

1) Punctal plugs again even though they were a disaster in the past
2) Cautery because he ignored what I said about the plugs
3) Some eye drops that I had trouble with in the first place
4) Salagen- even though I insisted that it would affect my stomach ulcer.

Doctors' dismissive attitudes towards this serves to intensify the feelings of isolation - and that certainly feeds depression.

Sazy, I am so looking forward to hearing how it all goes for you. Take care. By the way - did you get your lenses sorted out?

Thanks irish eyes, no i havent but i have a solution for now, i found some old glasses of mine not my proper prescription- but ive removed the lenses and put them into the goggles- works, so that should allow me to watch some movies on the plane without my eyes irritating. But they dont fit my face properly, and let air in.

[sazy123]

I honestly don't think there's any rhyme or reason to any of it, which makes it so diffiucult to pin point. I work part time all day Monday and Tuesday, and half day Wednesday, and the full days I'm at work and away from the house I'm far worse. I've always attributed the severity and time of day mine gets worse to tiredness. I know what you mean about having other illnesses. When I fell down the stairs and injured my foot, the pain was unbelievable, and I think it took my mind off my eyes. However, the pain killers I was given have definitely aggrevated things, and it was the lesser of the two evils! I suppose, like you say, try lots of avenues. By the way, does the heat/sun effect any of you?

Did your eyes feel fine when you hurt your foot?
For me anyway its not my mind being taken of my eyes, the inflammation actually goes away and i can see the oil is much thicker and my eyes actually look like they have a tear film, and they fell normal.

[alisonW]

I can completely empathize...

I've had these dry eye problems for around six years now, have been to numerous doctors, have tried almost everything mentioned on this site and am still miserable. If my eyes weren't also red I could deal with the pain better - at least then I'd be the only one seeing that something was wrong with them. (Thanks for letting me join in on this pity-party too!) I think we are lucky to have a place like this not only to share our hopes, improvement, new ideas, and what's working - as well as what's not. Sometimes we just need to also be able to share our frustrations. {{HUGS}}

Sally - as far as waking up goes, one thing you might try (if you haven't already) is an ointment at night. I know many on the board are not fans of them but for myself and a few others, it is the only way to get through the night. (I use Refresh PM (PF) usually but just picked up Systane's PF ointment because it only has 3% mineral oil.) For me, the ointments allow me to sleep comfortably and not have my eyeballs sticking to my lids in the morning. (Goggles, sleep masks, etc. didn't do a thing for me unfortunately.)

Anyway, it's something to think about. Thanks for the link Skygodess - I'm off to check it out.