a little cry for help

[fed up kate]

hi all

well im really going through a bad time at the moment and im really stuck on what to do next,ive had it for nearly 2 years and feel like its getting worse and worse,im doing everything i can for it fish oil,glucosamine,hot and cold compresses,lid hygiene,drops and still no comfort its like before i use to get some good days now i dont have any and its worrying so bad that im reaching a really low point,dont mean to moan as i know everyone must have these days but im really struggling with it.
I dont even have a dignosis on what i have as i cant seem to find anyone to help me or knows a great detail about dry eye so im scared incase theres a serious problem that im not fixing.
im trying to save money to see michel guillon in london but i cant even afford to do that,ive seen so many nhs specialist that all i get is "dry eye drops goodbye" and feeling like im cryin out for help and getting none.

Im not sure what asking for here but just some guidence really,ive had blood tests done for thyroid and auto immune but i read on here that even if there negative you still need a lip biopsy for a deffinate answer,ive got an apoitment with rhuamotology on 28th august,will they help me does anyone know as my doctor doesnt know what else to test for.
ive just got this gut feeling that i have something else wrong with me.
sorry for a long post but if anyone can help with what i can do next or who i can see or anything it would much appreciated right now.

thank you for reading x

[Smithy K]

Hiya Kate

I know how you feel. I have had the DE for 1 year now - and having a really low week - very teary and down (pardon the pun!). My eyes are red most of the time and they have been sore for two weeks now. I used to get good days, but not a good day in sight in the past 2 weeks. I take flaxseed oil daily, and am drinking water - nothing is helping. It is making me depressed - no one understands ,,,,, no one.

I really wonder whether there is an underlying problem.... or whether it is "Just" as they say!.. Blepharitis, as I do notice bumps on bottom lid now and again.

Thinking about dissolvable plugs?

Plus I am worrying as I am getting married next year. Really dreading my eyes looking like you know what in the snow|!
hugs
kx

[fed up kate]

smithy k

hiya thanks for your post.
its really frustrating isnt it its like you do everything your supose to do take everything you need to take and things still seem to get worse but im like you i swear theres an underlying problem but ive had loads of blood tests and was all negative so im like trying to be my own doctor and investigate.
i remeber i use to get good days before but now i dont have any its like all i do is moan to people about it and i must be such bad company at the moment but dont mean to be.

i had dissolvable plugs but in in january and i think they helped slightly but to be honest i still dont know what mine is but someone says my tears evaportae quick so therefore i think thats why plugs for me didnt make a huge difference but thinking of trying them again.

but im just getting no where with it really.
have you had a proper diagnosis?

aw i hope you get some comfort on your wedding day and sure it will take your mind off your eyes but hopefully plugs might help you and you will get some comfort.

hope your ok and thanks for helpin

kate x

[jkoz]

Do you have a diagnosis of any sort? I've had Sjogren's for over 15 years, done Restasis, plugs, you name it.
My eyes are always red, hurt, vision limited.
Try: Genteal Gel or drops, or ointment. I am not a rep for Genteal, but should be. I am allergic to preservatives of any sort, and love this brand.
Also try warm, moist compresses. That means a very wet washcloth, 40 seconds nuked on a little plate. First hold your eyes over the steam, then gently the warmth over your eyes. A doc told me that the heat expands the tiny capillaries, increasing blood flow to your eyes and opening the skin ducts.
I have also found out that the little camping handwarmers are great for instant warmth
This site should maybe be called Eye Hell, as that is my life. I wish you well

[fed up kate]

hi jkoz

ive had different diagnoisis each time i see someone but they never seem sure,ive bin told tears evaporte to quick but dont know why,no one knows if my glands blocked or what the reason is.
i try to do warm compresses but my eyes feel worse after not sure why this is either so i do cold ones as that feels nicer.
how did you know you had sjgoens was it done via blood test,are there any other symptoms i know dry a mouth,its just i had a blood test done but was negative and i read on here that even if it is negative you can still have it so not sure what else to look for.
i use pers free drops but get no reilief,i take fish oil and glucosamine and i clean them,just dont know what else to do.

sorry to hear that youve been suffering for so long its such a horrid thing
thanks for your help any help is always much appreciated

[Smithy K]

I was diagnosed my specsavers - I spent a couple of months with one red bloodshot eye which got steadily worse. (felt ok tho). then one evening my eyes were sooo itchy - then they started feelilng like pins were pricking them and were over tearing white gunk. I woke in the morning and went drs, who told me it was Conjunctavitis - (those drops said dont use with dry eyy doh!) then I went back to the drs and they said Hayfever - bloody useless!!! I then went to specsavers that afternoon (my eyes were red like flashing beacons by now) and he said it was Dry eye - initially i was relieved and I had read about more serious conditions on the web, - he said my eyes still produce tears, but quickly evap - like yours kate. My eyes are quite large and I do sit at a computer at work for 8 hours a day which is contributing I suppose. Nightmare last July when we went to majorca - the plane dried my eyes out completely and when we got there it was 28C - I spent the whole week crying. (my eyes were blood shot to the max and sore/over tearing), I will never venture to a hot country again in the summer months. I did manage to fly to USA last november - but found lots of tips on here - ie keeping eyes closed for as long as poss - genteal extra thick gel. Specsavers have some great prescription (i wear glasses), sunglasses now - they are their own make, and are wrap around - made for people on motorbikes under helmet!!! I am waiting for the sale tho!!!! So they would make good protection.

Each day I sit in an office, upstairs - the air is sooo dry and hot, I then stare at a damn screen for 8 hrs- Then by the time I get home my eyes look like shite - i am soo depressed by people saying "you look tired" when I have had ten hours kip!!!!!

I did try the get the red out drops (optrex ones) and they were great for about 2 hours - made my eyes really white. But I know they are not great for daily use - I was thinking more about when I get married...

sorry to waffle - feels better to get it down to people who know what I am talking about !

Thanks for reading

k

[fed up kate]

smithy k

you sound exactly like me,when i first started to get discomfort i went my doctors who have me optrex infected eye drops my eyes got better backt o normal then couple weeks later or hell broke loose and i was in amess so went to opticans who said dry eye and then i went to see about 5 private doctors who havent said why and just fob you off with different saying try these come back in a week bla bla bla im so sick of not finding someone that actually knows anything about dry eye that im like arghhhhh,thanks to this website i think i no more than most people ive seen lol.
but i know what you mean about hot weather i went abroad last year and the plane journey was horrific i just wanted go home i cried most of the time whihc in a mad way feel nice as you have tears but pay for it after and the heat was awful so now i cant go abroad anymore as its not worth it.

have you found anyone good or are specsavers knowledgeable in dry eye?,im trying to hunt a decent doc down

thanks for speaking as like you say its great to talk to someone who knows how it feels

take care

[parchedpeepers]

I solved my serious problem with dry eyes!

I have been meaning to log in to list what worked for me. When I was at my lowest a couple months ago the dry eye triumphs kept me going. I feel I had the worst case.
I will try to be brief: I was at a point where I could not go to work. Could not read and had constant pain in my eyes. It was so bad I had a friend read me the listings on the Dry Eye Talk. I could not function at all

My first step was to get some encouragement and then get a plan of attack. After researching the internet (through my friends eyes), I found many things that people said worked for them..so I decided to try them all at once. Here is the list that I do everyday and after 3 weeks I fell much better than I have in two years. Note: I have had some form of dry eyes for many many years.
The list -- EVERYDAY I do the following:
1- Flax seed oil - 3 teaspoons
2- 3 capsules of fish oil
3- Oil pulling - look it up on the internet, sounds weird but it isn't. basically it is just swishing sunflower oil in your mouth for 15-20 minutes(daily of-course)
4- 6 - 8 glasses or water (as much as you can drink)
5- Salads with fresh vegetables everyday!! diet is Very Very Important I have a raw vegetables diet. Lots of Brocolli, squash, carrots, raw fruits too.
I realize not everyone can eat raw vegetables, so try steamed but eat a little raw too and slowly your body will adapt.
6- 1 can of Sardines ( everyday of-course)
7 - Restasis (I don't think this works but my doctor said to use it. It is outrageously expensive, as you may know). The reason why I don't think it is the restasis that has cured me..(yes cured me...!) is that I tried it for 2 months before and no positive results) but because I was so desperate I tried it again and the doctor said it can take up to 6 months to kill those inflammatory t-cells.) But after just a few weeks I felt so much better so I doubt it is the restasis...
8- I feel this is important to:.. I told myself I was going to overcome this.. I had to make myself believe it...(Tried meditation...very good to help one remain calm and change to better thoughts).. I prayed too.
9- Eye Drops EyeKote. I was using this but stopped. But it is quite good. I of-course use the other drops on the market but that just helps for a few minutes.
10- I am a software programmer, I use dark sun glasses at work that have shields on them to keep out the air conditioning. (they call them moisture chambers) I feel these help alot also. Wiley has some and Panoptx. the 7eye.com has a dry eye section for people like us.
11- There is a video on Youtube.com that gave me encouragement too. You can so a search: dry eyes

So the question for me is what is curing me of this? Is it one thing or all things, who knows. I have my guesses but can't say for sure. What I will do at some point is stop using one thing at a time and see what happens. But for now will continue and see if I can overcome it completely. Right now I am very functional . I have had dry eyes for over 20 years so to overcome it completely would be amazing. Wait one more thing that was excellent was wheatgrass. I tired this many years ago and it worked. I do not take it now because it is impractical where I am living at the moment and I felt the effects from it after about 2 years and one needs help with this asap.

I hope this will help any of you who may be discouraged. If I can get better so can you!
Any questions just let me know.
from ParchedPeepers.

ps. I will need to change my username ...