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

[SallyP]

Hi, just a rant really. I don't know what I can do anymore. I thought things were getting better, well they did briefly. Never completely better, but an improvement. I take all the supplements recommended and more, I do the heat compress, and lid clean etc etc, I make every effort to keep my home dust free and clean, and I use the eye drops 4 x daily, and I'm at my worst to be honest. I cannot bear the mornings when my eyes don't even open properly and I look pretty horrific. Evenings are a right off after about 7pm and I've had enough. I don't know what to do. I think even if I didnt do any of the above I'd still get no respite from DES. I'm sorry to sound so despondant, and I'm normally optimistic, but I feel I've come to the point of knowing it's always going to be like this, which is so depressing.

[eva b]

not much comfort really, I know, but I feel exactly the same as you do.

Nothing I do seems to make any difference - and like you I wonder if there's any point in continuing - my days seems to be completely taken up with eye care routines.

I see no light at the end of the tunnel...and I'm sure the longer it goes on the worse it gets, possibly because of the psychological aspect where you just lose hope.

Do you regularly see any kind of specialist or clinic, and have you had a "proper" diagnosis...or just the usual "well, you've got dry eyes, it's not really that serious" number?

hugs,
eva

[SallyP]

Hi Eva

Thank you for your kind reply. I see you're also from the UK. Did you see I did advertise a new UK forum - Lumecare - that needs new members, and I did check with Rebecca Petris on here that it was OK to advertise.

Yes, for all the good it does, I see a specialist, but my next appointment's in December, and I think he just sees me because he thinks he has to. One of his colleagues saw me and actually said "you have dry eye, you really have to get on with it". I've had various blood tests to rule more serious things out like sjrogens etc. The optician has been the most sympathetic and helpful and said I had blepharitis, and recommended the time consuming lid scrub etc, but as I said, nothing seems to be working. I may consider seeing an allergy specialist, but as I'm sure you know, it's not easy seeing any kind of specialist. To see the eye specialist I had to perisist and pester. I suppose to some extent you do have to deal with it, and I know it could be so much worse, but it really gets me quite down, and even the sun makes me worse and I can't tolerate sitting in it anymore, but in the winter the central heating makes thing worse, so there's a brief couple of months, spring time, where things settle a bit, but I'm struggling with it all really, especiallyevenings and mornings.

[sazy123]

Your not alone, ive tried absolutely everything and nothing works. Only thing that works is living with another illness as it makes my eyes better.
Heres hoping i will have more luck with IPL.

I have prob tried more things than you guys (although i dont know everything you have tried), but ive tried alot. So i suggest keep trying things and hopefully something will help or at last become manageable.

Assessing allergies is always an option, but i dont think theres much in it if your doing everything for allergies and it makes no difference, as i have. Although dry eye could make you more susceptible to allergies. Although sallyp, its weird that your eyes get much worse after 7pm. maybe your around an allergen? Your out of the house i presume in the day? and obviously when you wake up you are in the house, maybe theres something in that.

[SallyP]

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?

[irish eyes]

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?

[skygoddess]

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.

[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.

[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.

[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 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?

[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.

[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.

[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

[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