Seriously, does it get any better? A new Blepharitis sufferer.

[vivian3090]

So today I called my cornea specialist and spoke with his head nurse.
It had been a month since I saw him and my eyes had steadily been getting worse...

I originally went there b/c I wanted to find out why my left eye was always the one that was the reddest if not the only eye red....

The paper they gave me when I checked out stated I was diagnosed with "aqueous deficiency"; they have me on 50mg of doxy, restasis 1x a day (since it burns my eyes), systane balance (I stopped using it b/c they irriated my eyes and made them ever redder), and thera tears every 15 mins.

When I talked to her today I suggested that when I see him next, to see if I may have blepharitis/mgd (I noticed that my lower inner eyelid is ALWAYS red.). She told me that he has it in his notes that he felt that is what was going on, and that I probably have had a history of it.

I'm pissed that NO ONE told me this. I'm mad that out of all the opthamologists and specialists I have seen; not ONE has suggested it. And I'm even mad at this one for not telling me what he really thinks.

I'm also upset b/c I had hopes that the dryness and redness was b/c of lasik and that I had a chance of it clearing up once it has healed; but with the information I know on MGD/Blehparitis.....I hear its a chronic condition....I will be stuck with one red eye forever?! This has taken such and emotional toll on me, today was just horrible. I had and still have awful thoughts...How can I enjoy my life when I am constantly worried about my red eyes?

The head nurse told me to keep doing my doxy and actually she wants me to up it to 100mg. Also to do the baby shampoo wash on my eye lids. and she stressed to keep up with the systane balance. (although I'm not sure if i want to b/c of how irritating it is to my eyes).

I see my cornea specialist on Thursday, I insisted. So I guess I will find more information on this.

I would search for more info on this through the site, but there is an error every time I try to search. If anyone can just give me advice, words of encouragment, links to helpful tips and such. I'd appreciate it. I feel I am truly at a low in my life and I really cannot see the light at the end of the tunnel...

[Tankie]

Hey I sent you a PM (private message), hopefully it helps!

[dryeye4ever]

hey vivian, ur in the same boat as me. Im curious to know how you got dry eyes? me its mostly computer usage. If you want to talk and get some support we could chat. Im really feeling depressed because of dry eyes, its ruining my life. Im only 22 and it feels like this will be a huge challenge.

[poppy]

My opinion is that basically everyone with clinically significant dry eye has inflammation of eyelids (bleph), conjunctivitis as well as keratits. I think it's pretty hard to tell whether the blepharitis is the primary source of the problem or whether it's secondary to inflammation from aqueous deficient dry eye. Once one part of the eye is inflammed, it just spreads to the surrounding structures and you can't tell where it came from initially. Docs usually just call everything bleph in the abscense of very low schirmer scores. Please try not to worry too much about one docs opinion, as most of them are clueless and just make stuff up as they go. Concentrate on finding treatments that work, whether they be "bleph" treatments or aqueous deficient treatments.

Also keep in mind that your doc might just not be comfortable with saying your dry eye is from lasik (and blame bleph) as blaming lasik might make him admit that many of his colleagues are greedy unethical scumbags.

Oh - and tons of people have bleph and don't even know it. Even if you "have bleph" it doesn't mean that is the main cause of your problems, it could still mainly be lasik dry eye that has some chance of healing. Something that docs forget is that (especially with very common diseases) a patient can have more than problem going on at the same time.

[Guest]

Hey Vivian,

For what it's worth from someone who's had blepharitis a while now, here goes

1) I don't think they can say for sure what your prognosis is... they don't fully understand the causes yet, so how can they know for SURE whether or not you'll have this chronically.

2) Even if you do end up having to fight this thing long-term, and you very well might, it doesn't mean your eyes will be like they are today - things can improve, I know they have for me

3) For sure try the standard easy treatment of doxy, warm compresses etc. But if that doesn't work, then start looking into other potential causes like rosacea, allergies etc. I notice a HUGE improvement in my bleph if I avoid my rosacea triggers and don't eat wheat (wheat of all things!!!... I never would have thought that in a million years if I hadn't figured it out by accident)

It might take a while, but eventually you're very likely to figure out a regimen that works for you, helps your eyes improve, and makes this whole situation very liveable. Just keep on trying, don't quit, and take it one day at a time! I know it's sooooo tough in the beginning, but believe me, it gets better and those "awful thoughts" you mentioned will go away.... they seriously will.. you just have to outlast them.

[bakunin]

I would add:

If your main problem is red eyes, don't let what people think bother you. Pain and burning feeling are much worse, something that you can't transcend. So, live your life fully.

[Guest]

If your main problem is red eyes, don't let what people think bother you. Pain and burning feeling are much worse, something that you can't transcend. So, live your life fully.

Well said!

[littlemermaid]

Vivian, Have you tried just using warm sterile water + cotton wool to clean your eyes for a while instead of a detergent? with a gentle warm compress? Baby shampoo made things worse for us (I can see it might help very sebaceous people with flaking). We find the eyes are very sensitive to chemicals after all these eyedrops.

Like diabetes and food intolerance: As SAAG says, we were amazed that cutting wheat and yeast products helped. And cutting all processed foods. Especially the fake emulsified fats and sugars, like hidden corn syrup in everything (fructose-glucose). We think meibom needs good oils in the diet though eg fish, nut, seed, olive - fish/flaxseed oil obviously.

Like skin allergy: And minimising chemicals and allergens around the house - we use a tiny amount of sensitive non-bio powder with no perfume. Especially bathroom products with preservatives and perfumes - we use organic shampoo without additives, and just plain old soap. Eg I wash bedsheets and towels very hot but with minimum detergent. We tried so many 'sensitive' face washes and moisturisers but at the moment we're using honey/beeswax bases and The Gentlest Possible washes, pH neutral. Or just water, if we can get away with it for a short while (this is for rosacea skin which sets off eye inflammation with MGD so sometimes we need antibacterials, but I don't think you have acne?). No makeup, of course.

And no dairy (although maybe other milks would be fine).

Looking for hypersensitivity triggers has been a big help with the eyes and skin. It's all worth a try but give it maybe 2 months to judge whether it's working because the improvement seems to take time with us, although flareups can be instant or a deterioration that takes 2/3 days, depending on the trigger. It's not an uncomfortable process - our philosophy has been eg have a small chocolate, but make sure it's a very very good one!

As we think carefully about this, she seems to be developng a sense of what makes things better/worse - eg whether to eat nuts or drink teas, what in the room sets the eyes off. Docs at the forefront are much more interested in how allergies/sensitivities and metabolism affect the eyes, I find. We look for all the different factors that help healing.

Yes, it has got a lot better - working with docs and mainly thinking about people's experience here on dryeyetalk. It was confusing at first that there wasn't a quick-fix, or even a doc-diagnosis word, and still various thoughts about what's happening - but then we got used to this and trying different things with the docs to see what helped/didn't.

Vivian, You might want to ask the cornea specialist what blepharitis is? Hopefully, that'll help get the best out of the doc and get a bit more honesty and dialogue going.

Links: Current summary on eMedicine
DEWS Report of the Tear Film & Ocular Surface Society 2007 http://www.tearfilm.org/tearfilm-reports.php
Cochrane review on blepharitis May 2012 http://onlinelibrary.wiley.com/doi/1...05556.pub2/pdf
Dr Robert Latkany's book 'Dry Eye Remedy'

[Guest]

It was confusing at first that there wasn't a quick-fix, or even a doc-diagnosis word, and still various thoughts about what's happening - but then we got used to this and trying different things with the docs to see what helped/didn't.

This has been true for me also - it's taken time to sort out all of the contributing factors to this, but the longer I go on with this issue, the more I'm able to figure out about what is influencing my blepharitis, my dry eyes in general etc. That seems to be the case with most people who have come and gone from DEZ.

With time, you'll figure out a routine that makes things manageable. And if you need moral support, come on here to DEZ... I know it helped me a ton to read about others who were going through the same thing as me since in real life, I don't know a soul with this problem (they're all thrilled to bits with their LASIK)

I also read a lot on butyoudontlooksick.com - it's a super blog, and although I don't share the same health problems as the ones they discuss, a lot of their struggles in living with a chronic illness were sooooo easy to relate to... also helped me feel less alone in this. Anyhow, not saying you'll struggle as long as me, I kind of feel like I'm a freak having this go on and on for me like this... odds are a year from now you'll be posting about how great you're doing. But still, maybe you'll find it comforting to read like I did...

[unicorn]

I can really relate to a lot of what's been said in the post. I'm struggling with the thoughts of having a chronic condition that I really don't know if it'll get any better. Progress is so slow and there is always conflicting advice (or lack of advice!) from the 'professionals'.

I am currently keeping a diary of not only food but also things like any eyedrops, skin products, makeup etc, and any symptoms I notice. It's frustrating that nothing has an immediate obvious effect but I am hoping that over the course of a few months I might start to notice a pattern and be able to make progress. What I do find daunting is the thought of cutting out potential food triggers - but I think I probably need to try this - for example wheat, as this seems to be a common trigger for some people here. (Does anyone know how long to cut things out for to see an effect? 2 weeks?)

[Guest]

(Does anyone know how long to cut things out for to see an effect? 2 weeks?)

For me, I was aiming to go a month before making up my mind, but within 2 weeks I could tell that giving up wheat was doing something good for me: heartburn went away, geographic tongue went away, meibomian glands looked tons better etc... in the longer term, I even realized that the canker sores that had plagued me all my life if I ate too many acidic foods, were gone as well - I could eat as many grapefruits, oranges, vinegar-containing salad dressings etc. as I wanted and no canker sores any more... very cool. It was like a cure all for me... (well, not quite, and that sounds a tad over the top, I know... but I was honestly quite shocked at how many seemingly unrelated issues got better... am still totally floored about it to be quite honest).

Again, me being a total freak, I'm sure this is unusual to have giving up wheat do all that But what the heck, can't hurt to try it... maybe it'll help you freakishly lots like it did for me... and if not, then on the bright side, will be nice to be able to eat as much bread and pastries as you want, right?)

[unicorn]

I'm tempted to give it a go (giving up wheat). Do you actually have a wheat allergy? I have just been for blood tests for allergies and one of the things they're going to test for is wheat allergy, along with Coeliac disease.

[spmcc]

I could tell that giving up wheat was doing something good for me...
...the canker sores that had plagued me all my life if I ate too many acidic foods, were gone as well - I could eat as many grapefruits, oranges, vinegar-containing salad dressings etc. as I wanted and no canker sores any more

I get mouth sores too when I eat citrus, tomatoes, vinegars, etc. I've described it to my dentist as it's like my mouth is kind of "torn up". I may have to try removing wheat altho I've had the blood test for Celiac Disease and was negative. I also had some (now I'm thinking, unreliable) blood tests for tons of food sensitivities. Wheat/gluten didn't turn up there either.

Speaking of food and nutrition, this was in the news on June 19: Genetic testing for nutrition aka Nutrigenomics.

[Guest]

I've been tested for celiac disease, and to my relief, it was negative. Haven't had any food allergy testing done though... part of me wants to do it, but I haven't been in the mood to ask for it yet. Was a bit put off by my last visit to the allergist where she wouldn't do it - didn't think it was necessary... at the time, I wasn't thinking about heartburn, geographic tongue etc, so never mentioned it... maybe that would have made a difference to her opinions, although I have a feeling it wouldn't have changed her mind.

The more I read about food allergy and food intolerance testing, the more I think that while they seem to have a good handle on testing for very OBVIOUS food allergy (ie. the kind where you eat the food and you get hives or throat swelling etc.), there is much less understanding of food intolerances. I think there is very little consensus on whether or not food intolerances can cause canker sores, stuffy nose, geographic tongue or other stuff like that, let alone contribute to ocular symptoms, and very little known about what kind of testing is reliable to detect such food intolerances.

On the bright side, if you can stand a strict elimination diet for a while, you can sort it out on your own, and skip the testing. Seems to me current tests available for food intolerance are iffy in terms of reliability. (And some are crazy expensive too!!! To get the ALCAT done around here it's $1000!!! ouch! A lot of money to pay for a test that might not even be accurate.)

One more thing that I just thought of... if you do an elimination diet, it helps a ton to plan out what you'll eat for each meal and snacks before you start... that way you can have a well-stocked fridge/pantry to help you stick to it. Nothing worse than starting a diet like that and realizing you have almost nothing in your house that you're allowed to eat!!!

edit: just read that link... was interesting! Thanks for posting it spmcc!

[vivian3090]

Sorry for not posting for awhile (my boyfriend's sister just had her baby, I'm an aunt! lol).

But I would like to thank you all for your responses. I have read every single one of them!

I have been eating healthier. --I may even start a diary about my eyes too.

Although I think its all due to steroid drops I've been using, my eyes have gotten considerably better, with redness and dryness.

I've noticed that my eyes to sting/burn as much at work. So I'm thankful I'm getting some relief. Although I know I can't stay on this drop forever she did say I can stay on it for awhile if needed, and then she was gong to switch me to "alrex" which she said I could use for long term.

Since my eyes have gotten better I'm going to wait for my followup appointment July 19. Hopefully there is considerable change with dryness and I will definitely ask my him more information about bleph and if I do really have it.

Thank you all again.