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

[Lucy]

Sabrina, I live in the great lakes region fairly close to one of the lakes. We have pretty good humidity around here in the summer. Problem is, summer is only 3 months long. During much of the year, we are running our furnaces and that is the pitts. Then you have to add humidifiers, one for the house, one for the bedroom.

Also car heaters is another thing that will kill you!! I think humidity does help, but it doesn't occur all the time. Lucy

[Sabrina]

I feel the same

I can so relate to what you are all saying. I have had this condition only 5 months but have tried many things. I am just hearing some things about IPL so will need a chance to research it. I don't think anyone can relate until they have been where we are ; not co-workers, friends, or Docs. My quality of life has suffered so much. I used to be a social person but don't want to leave my house for anything these days. I feel like everyone is tired of not only hearing about this but my bad mood in relation to it. I can't imagine spending the rest of my life like this. I try to stay optimistic but hard when nothing seems to work. I can't imagine spending the rest of my life like this. Do any of you live in humid climates? I have heard that helps. I am in AZ and will consider moving if it would make a difference.

[SallyP]

well irish eyes,, unfortuunately me eyes bad again yesterday and the systane didnt work too well. i wont give up though. i do wonder, as nothing seems to work, whether the diagnosis is even right. I don't have an appointment with the hospital until December, and to be honest the anaesthetic drops make my eyes so bad for about 3-5 days after, I dread going. I hope you are having more success, and not suffering too much. I do find the hot spell we are having here in the UK makes me worse.

Sandra lee thankyou for replying and welcome to this site. It's brilliant, and has been such a support, everybody's very kind and understands what we go through. Gool luck to you also!

[sandra lee]

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.

Hi Sally!I know exactly how you feel.I have meibomitis and have been in a constant battle for over 8 months and the depression is very common from what I have researched.Please don't give up and keep researching your DES and keep looking for a doctor who can help you.I am in the process of getting a 3rd opinion because my doctor has been very unhelpful and from posts that I have read some people just need to find the right doctor to treat them.I hope you get some relief soon.I am excited to have found this site and learn how others are coping.Good Luck to you!!!!!

[irish eyes]

Hi Sally

I know exactly what you mean about not wanting to get too carried away, only to feel disappointment.

I feel on a real `high' when I have a good (ish) day. That is probably why I feel so low when the bad times follow. I could get so used to feeling OK, It wouldn't be any trouble at all.

I hope today is a good day for you.

[SallyP]

Hi Irish Eyes, nice to hear from you as always.

My eyes stop me from actually getting off to sleep,rather than waking me up, but I struggle to explain the sensation. The eyeball feels huge and just incredibly dry, and the feeling in the morning is something else. Stuck fast, and I ususally have to phsyically unpick them, but the worst feeling is if I've only been to sleep for an hour or two and then wake up, it's such a horrible feeling. They feel very heavy, and the lids don't quite open properly, and I even feel dizzy with it. I also get the same feeling if I doze off during the day for a while, which, because of it, I try not to do. I have to say though the systane drops seems to be helping considerably so far, but it may just be a good run. I don't like to get too carried away about them being "better", as run the risk of being further disappointed. I will carry on using the systane then throughout the day, as you say before they get bad.

[irish eyes]

Sally

I have always had great difficulty with drops.

Just now, I'm swapping between Systane and Vismed multi.

I use Systane around 3 / 4 times a day and I try not to wait until my eyes are `screaming' for help. I put drops in both eyes in the morning as a routine measure and then again in the afternoon. Sometimes, I might only use them in the eye that is hurting the most - with me it is usually the left one.

I find it's better (for me anyway) to instil them a while before I go to bed because otherwise, my eyelids / lashes become irritated during sleep. The discomfort can be severe enough to wake me up but I don't put drops in during the night - although I used to.

My eyes can feel very strange when I wake up; I can only describe it as like having cramp in them!!

[SallyP]

systane - seems to be working, but question about it also?

Hi, just thought I'd tell you I've used the systane ultra, it's the best one so far, and I got relief in the evening for more than 15 minutes. Rightly or wrongly and maybe somebody could tell me, but now I'm not scared it's going to make me flare up, I'm going to use it 4 x a day, more of a preventative measure, which I did yesterday, and I was far better in the evening. However, as I'm sure you're all aware, it's such a hit and miss thing, I might have had a good evening anyway, but these new drops have definitely provided the most long term relief, so thank you so much East 12 for your suggestion. Is it OK to use throughout the day rather than waiting until they're at their worst at the end of the day?

[SallyP]

Stella, although I get very down sometime, I won't give up, I can't, and East 12 I look forward to trying the new drops, I'm hoping they'll arrive this morning! I did think about getting rid of the oil myself, but I'm afraid of not doing it properly and making things worse, I may go and have a chat with my optician about that. I'll let you know how I get on.

I think when I first got this, 2 years ago, I did expect to get completely better,obviously unrealistic, but am now happy with what we would probably know as a "good" day, but for those with healthy eyes, would be intolerable. I thnk the fact that I injured my foot so badly about 8 weeks ago didn't help, and I was on a high dose, and very strong pain killers, which I'm sure aggrevated things and now I've virtually come of them in the last couple of days, things seem to have settled down considerably, but as you say, you just know that it can flare up at any time for no obvious reasons. I do the hot compress every day, for the reasons mentioned, but I follow that with the cold water, which I have to say, is very soothing.

Everybody's been so very kind, and I cannot tell you how much you've all helped, and this site is a godsend x

[Lucy]

Don't forget to try cold cloth compresses on your eyes occasionally, too. Rotating with the warm/hot if you're using them. I always found cold/ice to relieve the pain better. It's not better for opening up the meibs, but kills the pain.

[east12]

I'm going to try systane, which somebody recommended

It did save my life, I couldnt take the pain and itchiness anymore. However as someone else had pointed out above, its important for you not to have high expectations. I had actually thought before trying systane that it was a useless drop which would do nothing (except increase pain) like the other drops I had tried BUT it worked.

I'm glad to see you ordered some, that you're giving it a try and really hope it works for you. Have you tried warm cloth compress? The heat water really goes away fast so its constant up and down up and down type routine (which the rice baggy in the shop was designed to eliminate), I find that helps to.

[stella]

Hi Sally
My heart goes out to you -----
All i can say is to experiment and keep experimenting with the things that have helped people on this site until you find something or things, that will control your condition
It may be a combination of eyelid care + the right drops or goggles humidifiers allergy control but NEVER give up
Dont aim for a 100% solution as that will only disapoint you ,but aim to get it at a manageable level, and expect bad days as this condition does have flare-ups

I am in a place now where i have good control --
Some of my methods are a bit unconventional - like steaming my eyes and squeezing each lid between my finger and thumb - but it is working for me and my optician photographed my eyes today, and tells me my glands are not blocked at all and look very clean and my tear film is thin but just about adequate
Also my use of chloramphenical eyeointment on the lid margins at night + vasaline on the outer lids at night - unconvensional ,but at least i can open my eyes in the am more easily now
Then there is clinitas ultra 3 that helps the tear film - it stings on instillation -not al lthe time, but if my eyes are not quite so good i notice it
Fortunately the times they are not so good is very mild compared with what used to be
So do keep trying different things and i will be praying for you
Take a day at a time
Stella

[SallyP]

Hi izzy3usa

Thank you for your reply. I was tested for Graves, and had an overactive thyroid about 6/7 years ago and had most of it removed, so my thyroid levels are checked and are at a healthy level. I don't even need thyroxin or any medication.

I'm in the UK and can't always get the same medication as you,or same shops, but I will look on the internet. I'm going to try systane, which somebody recommended. Apart from Celluvisc,they've all made me worse, but I always look forward to trying a new one. Gives me brief hope.

Thanks again for your time in replying.

Sally

[eva b]

skygoddess,

how do you cope with the rubber allergy part of it?

I perhaps misunderstood that it was just black rubber you were allergic to...how do you deal with it otherwise?

e.g. you said your electric toothbrush has rubber on it (so does mine)...so have you stopped using it, or do you just wash your hands after you've used it making sure you don't touch your eyes?

and what about rubber gloves - the ones we use for washing up etc???

[izzy3usa2002]

try Soothe XP

I also see you cant seem to find good tears that work. i like the Soothe XP. It has mineral oil in it and it is the only drop that gives me any relief. It is by Baush & Lomb. I get mine at Krogers or Walmart. Good luck!