I think I'm gonna explode.

[LiliS]

First you need to know exactly what is the disease that is giving you dry eyes...could be a local one ( like blepheritis or rozacea ,an eye infection or micosis or n allergy) or it could be from a systemic disease ( usually autoimmune,but diabetes too ) or could be from a hormonal imbalance ...only after that you can have a proper treatment...sometimes nothing works really ,like in my case,i suffer a lot and can,t find any confort with any artificial tears...i havent,tried castor oil drops,we dont,have them here.. ,the hialuronic acid is bad for my eyes,Restasis stings a lot ,my only confort were for a while the autolougous serum drops..

[DryMichael]

DrMichael : I've cut out gluten, wheat, dairy, all sugars, all processed foods, all nuts, eggs, and only use coconut and olive oil. Been on this diet for 3 weeks only so maybe I should wait longer? I still drink TONS of Coca Zero though, but already planned to cut that too on the 1st of June (one thing at a time...)

For the Omega 3's, I use these, but I think I should take more than just one pill ?

http://www.nutrigold.com/Triple-Stre...ega-3-Fish-Oil

Yeah, you should definitely give it more time. This is the food intolerance test kit (https://www.youtube.com/watch?v=4ua9cABHjt4) but i'm not sure how precise the results are. I have feedback from one of my friend and he says it works fine. So that's another thing you can try.

Your Omega 3 looks good but try to take 2 pills a day. I take 3 but it's because I have some lower-quality ones with a lower dosage of EPA + DHA. I need to buy something better

[dominorose]

Thank you.
Regarding the kit I dont trust this kind of stuff...too expensive and my eyes already cost me a fortune to be honest...

[dominorose]

Update:

I realise what I thought was an improvement in my situation was just the effect of cyclosporine. Yesterday was ok because I used it in the morning (just using it once a day for a week now bc my doc gave me the wrong prescription: it's a 0.5% concentration instead of 0.05% which I usually have).
When I don't use cyclo, my eyes are a total mess: dry as bone, or mucousy. I still have the toxic tears sensation in my right eye with cyclosporine but at least it is manageable.

I am depressed to rely on such a strong drug to function. Without it I really struggle to keep my eyes open, to work, etc. I was walking in the street the other day with my eyes litterally CLOSED. I think my case is far worse than a lot of other ppl's

[LiliS]

I,m walking eyes closed too when i have to walk my little dog...i,m desperate because it seems i can,t tolerate Restasis...and in fact i can,t tolerate anything in my eyes...even the autolougous serum drops who are far the less damaging and they are supposed to be the best cure for the eyes make me great problems with my nose ( i have an allergic rhinitis wchich became worst after i began to use all kind of stuff in my eyes...mynose is also dry because of Sogren,which is a very bad combination...stuffed,swollen,can,t breath well almost all days...and i began to cough too,thick mucus from the lungs.....and all of that because of the lack of tears...i,m drying up from inside and i don,t really know how to stop that... so,you see,you,re not theo ly oneto suffer like hell....sometimes i wonder how other people can cope with that...and the constant pain...my left eye is worst and again i,m wondering what is the coreletion with my left nostril,because i have grat pains inthere too...

[Amanda]

I have not been able to find the underlying cause for my dry eyes and I believe I have been fairly proactive in trying to determine the cause (lots of dr. visits, blood tests, etc.). It is frustrating! But I know that I have Aqueous deficient dry eye and not MGD so that helps in determining some treatment options

[Amanda]

Hi Dominorose...

Unfortunately I think we all are going to have to rely on strong drugs and things we normally would not have chosen with our situation. As many people have said I think you will go up and down in symptoms, depression, anxiety, etc. It's day to day but we need to find ways to deal and be strong. Yes, everyone's situation is likely different. I am sorry to say I don't think I have the same exact symptoms as you, but without having all four ducts plugged I have burning and discomfort almost all day long! I hold out hope that someday there will be a treatment that will make us feel "normal" on a regular basis!

I also completely understand the difficulty with work. I have frequently been trying to figure out when I can retire so that I can be good to my eyes daily. Unfortunately I think that day is about 22 years from now! unless I win the lottery, which I don't think will happen since I don't play the lottery

[No tears in ATL]

I think a lot people agree that this condition gets worse before it gets better and it really does cycle in and out between tolerable and super duper flareups.

When I was first diagnosed in 2009, I was bad off. It didn't help that I was dumping all sorts of things in my eyes to get relief. Then I remember it seemed to stabilize until about 2012, and then all heck broke loose. So bad, in fact, I would sit there at work and would use ice packs on my lids every 30 minutes. I finally had to confess about what was going on because I was getting some stares. It stabilized again in 2013, and then the really cold winter this past year (2014) almost did me in. This year, not that awful, knock on wood.

My point is, it runs in cycles, and like a lot of people on here, I can almost pinpoint it to extreme stress levels and monthly hormone levels (I'm sure you've already looked at articles on how the monthly fluctuation of hormones can affect everything from dry eye, to mood, to concentration, and even coordination). You might suggest that your doctor give you a weaker steroid drop (something like Lotemax gel) to get you through the rough times. You could use it a couple of times a day for about 5 days, just enough to get rid of the bulk of the inflammation, but not long enough to raise ocular pressure. I notice with steroid drops it makes more sense not to use them for say, four weeks, because my eyes have to "wean" off of them, therefore, shorter term makes more sense.

You are going through a rough flareup and believe me I know how you feel. It seems like it will never end. You are welcome to PM me if you like if I can offer any additional help or support.

[dominorose]

Thank you for your answers.

You're right : it comes andgoes. I'm feeling a little bit better but I am far from normal

I agree on the cycle thing NTATL but mine is inexistant. I dont understand why, I was diagnosed with hypothalamic amenorrhea in november and have been on the BC pill since to get "fake menstruations",but no difference in my eyes...and I can't bleed if I dont take it (sorry for the guys reading this).

My problem is an oestrogen deficiency, but I also have hashimoto's thyroidis, osteopenia, light rosacea on my cheeks, Raynaud's, and maybe a fungal infection of my handnails (waiting for the lab results). So my dry eye could be related to tons of things...

[LiliS]

Hey ,guys,help me.i can,t bear the pain & dryiness...it,s burning ,badly today,even i,ve used my ASd who seemed to work for a couple of weeks,now i can,t find relief...put cortison drops in my eyes too( notnLotemax cause we don,t have it here) ,still burning like hell...incouldn,t find until now a gel / ointment / artif tear who could give me some relif,all mada my eyes even irritated & red ,it seems i,m allergic to everything...even my eyelips are swollen...i have Sogren disease ( or Mikulicz,the doctors are not sure which ) and i tried Restasis too // felt norrible with it,...what can i do? cold water compresses from the freezer ,they said and ket the eyes rest...but it hurts! badly...i wished i die...

[DryMichael]

LiliS, try NOT to put much stuff in your eyes, especially when it's irritating your eyes even more. Try to use preservative-free artificial tears only. Have you tried moisture chamber glasses from Ziena for example? You must be strong, I know the pain is sometimes terrible but hold on, there will be better days. Read this forum through and learn from others who have Sjogren. Where are you from? What did the doctors told you?

[LiliS]

thanks Michael...i,m from Romania,i,m 58 years old and i,m a retired MD myself...the doctors...some of them know less thwn me about dry eyes here..yes,i agree to let the eyes rest...i only use now ASR ,but even those cause me problems ,especially inside my nose...i,m sure my dry eyes are also allergic and maybe there is also a nevralgic pain liknked with rhe trigemen nerve,because it,s only on the lefft side and goes in rhe left nostril too... we don,t hwve chamber glasses here...and abour arrificiwl tears,incan,t use ANY of them,tried wll the brands,including Oasis...it was so difficult and expensive to order ( some from US ,orhers from Europe,always on line..,) and i donated them all to an Eye Hospital...my eyes don,t accept any chemical ,not even the so called safe drops for refreshing ,with inly minerals inside...i am not sure if my disease is Sogren or Mikulicz,the difference is important for the treqtment of dry eye,but here the differential ca ,t be done ( lacrimal gland biopsy and sofisticated tests from lacrimal secretion/ T4 cells,Gamma globulins,etc) .And i also noticed that everything got worse in menopause...i will take estrogens,maybe they,ll help....it,s very frustrating not knowing how to manage this evil disease...

[LiliS]

Dear Domino Rose,you should check all your hormones,not only the estrogens ,because it depends a lot what kind of hormonal substitution you take( progesterone,free testosteron,prolactin,FSH ,LH ,T4 amd T3 ,...i belive you had done the anti thiroidian antibodies since you,re diagnosed with Hashimoto disease// ) .i also belive you,re on thyroid medication ,it,s very importwnt to have a good endocrinologist,including for the right prescription of your HRT // you also should have a MRI to see the hypophise gland and hypothalamus // you,re too young for this stuff..

[DryMichael]

thanks Michael...i,m from Romania,i,m 58 years old and i,m a retired MD myself...the doctors...some of them know less thwn me about dry eyes here..yes,i agree to let the eyes rest...i only use now ASR ,but even those cause me problems ,especially inside my nose...i,m sure my dry eyes are also allergic and maybe there is also a nevralgic pain liknked with rhe trigemen nerve,because it,s only on the lefft side and goes in rhe left nostril too... we don,t hwve chamber glasses here...and abour arrificiwl tears,incan,t use ANY of them,tried wll the brands,including Oasis...it was so difficult and expensive to order ( some from US ,orhers from Europe,always on line..,) and i donated them all to an Eye Hospital...my eyes don,t accept any chemical ,not even the so called safe drops for refreshing ,with inly minerals inside...i am not sure if my disease is Sogren or Mikulicz,the difference is important for the treqtment of dry eye,but here the differential ca ,t be done ( lacrimal gland biopsy and sofisticated tests from lacrimal secretion/ T4 cells,Gamma globulins,etc) .And i also noticed that everything got worse in menopause...i will take estrogens,maybe they,ll help....it,s very frustrating not knowing how to manage this evil disease...

It's the same here, in my country, doctors sometimes look like they don't know what I'm talking about. Special moister chamber glasses are a problem, you have to buy them online from U.S. very often, but i'm sure you can find some glasses with a foam around the eyes in Romania - something like this to give you an idea - https://www.dryeyeshop.com/7eye-cape...rned-p573.aspx
I think you might benefit from wearing them because it blocks the air-flow which irritates your eyes. Read this http://www.dryeyezone.com/encyclopedia/eyewear.html

For artificial tears, I recommend these ones http://ursapharm.cz/cz/produkty/zdra...care/hylo-gel/
They should sell them in Bulgaria, which is close to you, isn't it? So it shouldn't be so expensive. Maybe they sell them also in Romania but under a slightly different name / it's from different manufacturer. You should be able to use them without problems (or is there some Sjogren-related problem I'm not aware of with artificial tears?)

[LiliS]

Thank you Michael.i looked for them/ found in a polish pharmacy on line... i also bought today some tears with hyaluronic acid also called Blu Yal ( here we have a lot of italian products) ... ibtired several brands with hyaluronic acid,/ doctors say it,s the best for the eye...but i don,t feel that way...and it gives me stuffed nose too...i hope i,m not allergic to that too. i began to brewth with difficulty and ny nose is burning....maybe my problem is that i have so many allergies and thats complicates dry eyes medication...about the goggles,i will find some in a sport shop,i think....i don,tknow what is wrong with me ,i read wbour other sogren pqtients that rhey are ok with artificial tears...but it,s true we have all a low pain endurance...