not enough/too much info ?.

[Colin P]

Is it just me?.
Or regarding D.E.S did you also start out desperate for as much info as possible, but some time later, find yourself bombarded with do's and don't that your head spins sometimes?. .
Is there mileage in the thought, that some professional body needs to do some sort of clarification on D.E.S because half the time I think to myself, 'am I doing the right thing here?'..

[lizlou29]

Colin, this forum has helped me immensely and my current ophth encourages me to research but it is overwhelming sometimes and I think am I doing enough or am I doing too much. The problem is there isn't a one size fits all treatment which took me a while to figure out. Some of the ophths I've seen have led me to believe if I do warm compresses 2 or 3 times a day I'll feel much better in a few weeks. This isn't the case for me but for some it's all that is needed.

Some ophths are still pushing baby shampoo even though I could tell them myself its not recommended any more. In an ideal world all ophths would have an interest in dry eye and work with the current recommended treatments to try to help the patient improve then try other treatments e.g Azyter that isn't prescribed as standard if the standard treatments aren't helping.

[Faith1989]

Liz what is your current regime now? I just had a huge flare 2 weeks ago, so my doctor has me using lotemax for a month. It helps me.. I am also avoiding \ totally eliminating sugars. I find my lids function better without it.

[Colin P]

youre right there lizlou. in the beginning, finding this forum was the most important thing in the world at that time. my opth told me there was nothing wrong with me, and heres some drops, shut the door on the way out.
you really are both the patient, and the doctor with D.E.S.

[lizlou29]

youre right there lizlou. in the beginning, finding this forum was the most important thing in the world at that time. my opth told me there was nothing wrong with me, and heres some drops, shut the door on the way out.
you really are both the patient, and the doctor with D.E.S.

I've been asked by colleagues and various people why am I still suffering with my eyes when I see eye doctors so regularly and "isn't anything working?" etc. I've seen quite a few doctors with little knowledge of dry eye disease as well as a lack of bed side manner. I remember the early days of thinking 'great, I'm seeing an Ophthalmologist soon so it won't be long until I'm better". Not I understand the nature of the condition far better because of this forum and my own research so I don't get as despondent after my appointments now.

Faith - I'm just doing a warm compress once a day and expression. It's all my eyes can handle. Eyes seem to hate the steroid drops and so I'm only using Celluvisc right now. Things are a tiny bit better as I haven't had sugar, wheat or dairy for 10 days and sugar normally has a pretty immediate impact on my skin. I'm looking for a new moisturiser as I normally use REN Global Protection but it's not moisturising enough in the cold weather we have here right now.

[Faith1989]

Every time I tell someone I have "dry eyes" I always get "can't you just use drops?" So now I don't tell people I have dry eyes, I say a complicated eye disease. Then they don't ask or tell me to "use drops". It's very frustrating. I had a reaction to using wet ones, very bad. It still hasn't gone away. The lotemax is helping but the wipes like ate away at my lids... I've been suffering bad for two weeks

The cyclosporine didn't help any?

[LaDiva]

Faith, thanks for a great idea! From now on, I am going to tell people I have ocular rosacea, meibomiam glad disfunction and aqueous tear deficiency. I now have a friend who yells at me because I can't tell her exactly what I am able eat. She told me I need to take tests and find out. Well, it isn't that simple, is it? I agree with what everyone here has said about their medical experiences. I've learned more here than from any of the doctors I've seen.

[sunshinelover]

Almost all other cronic deseases that disable people have organisations that work go spread information and work as advocates for finding treatments and educatind doctors.Wonder why there isn't one for DES?

[Jade]

Good question. Those organizations have a support group network as well.