Why am I Regressing? Need encouragement!

[kanon]

I've been dealing with the dryness and pain in my left eye for 6 months (following conjunctivitis in both eyes). Basically, I walk around every day with my left eye closed because air hurts it so badly. I like to wear the wraparound Rx sunglasses that I got so people don't see me squinting and "winking" at them all the time. These are the things I am doing to try to feel better:
-all 4 puncta cauterized
-acupuncture 1x per week
-tons of Omega-3, flaxseed oil, Vitamin E, vitamin B complex, zinc, vitamin D3,
-Restasis (started 2 months ago)
-doxycycline (started 2 months ago)
-plenty of sleep
-plenty of water
-TheraTears
-Vitamin A ointment at night
-avoiding red meat, tomatoes, potatoes and onions

The good news is that a few weeks ago, for 3 weeks, my eye felt good! For a whole 3 weeks! Maybe not totally perfect, but I felt so great. I could go through a normal day...I could go running outside, I could take my kids to the beach and not think about the wind. I thought maybe the Restasis and doxy were kicking in and these bad days of pain were over. Then it came back...I can't find anything I am doing differently...It just came back. The only thing I did differently is skipped 2 weeks of acupuncture because the acupuncturist was on vacation. And now the pain has been back for about 3 weeks. Same thing: left eye burning pain...can't stand the air, wind. Wear goggles sometimes, and wrap around shades.

Has this happened to anybody? A few good weeks then it comes back again? What can I do? Tell me the pain will go away again!

[kanon]

I'll add too, that with my left eyelid (on the side that hurts), if I apply pressure to it, it makes a really loud squeaking noise. The right side (side that feels ok) does not do this. What is this? Backed up lipids that are stuck and won't come out, hence the pain? I am guessing....

[bakunin]

Yes kanon, it did happen to me. I think it happened to most people in this board. I don't understand why we can have some weeks of so much improvement and then we get worse again, without any change in our lifestyle, medicines etc.

Look through the bright side: if we got better once, we can get better again

[patrick]

ever went back to mirjam?
has she examined your left eye for a second or maybe a third time after you started this regimen? was there any improvement noticable at all?
i to have periods my eyes don't bother me very much and for some reason there also are periods my eyes really hurt till the point it is giving me migraine like headaches.
till now nobody can really explain what causes this. most opthalmologists even state that my eyes can not cause the pain i describe. this is so frustrating!

patrick...

[Joseph]

I had two months of great vision with no dry eyes. Then all hell broke lose and my eyes went dry and my vision got blurry again.. I agree with Bakunin that if it got better once it will get better again..

[kanon]

Joseph- after your eyes got worse again, how long did that last? Are you still in that "bad" period?

Patrick- I went back to Mirjam about 2 weeks ago. She took pictures and said the glands in my left eye look a little better. I told her I had gotten better for a few weeks and now it is bad again and she just said that will happen. So frustrating! Let me know what you find out about the blood serum in the Netherlands, and also about a pain clinic. It would be fun and helpful to meet you and your girlfriend since I have never met anyone in real life that has this problem!

I agree that it will get better again, since it got better once...but it is hard to wait! And I feel like I am just waiting- there is not much I can DO (besides the things I already mentioned, plus I forgot to mention hot compresses and squeezing eyelids).

[patrick]

Hi ashley,

So,if you have to do the warm compresses and eyelid expression has it been established that you have a problem with the glands and it is not an aqueous deficiency issue?
Is that for sure?
Do you think in that case the restasis could be helpful?
I haven't met a person in real life with dry eye to,there just aren't very many of us i guess.
Although i just recently heard that the mother of a girlfriend of my girlfriend (huh? Do you still follow me hehe). Has had dry eye for decades now and i'd like to contact her to,because i am curious to learn what regimen she has and to which opthalmologist she goes. Maybe she has some helpful leads since she has had this for much longer than i do.
Next thing on my list is the doxy.i've been wanting to try this for so long now. Can't wait till it is october and then i am allowed to start with it. Fingers crossed that it does anything for me!

Patrick...

[Joseph]

What is causing your eye problems. Did your doctor ever give you a diagnosis. With a diagnosis you will be much better at understanding what is going on and how to best treat your eyes. I would ask your doctor "why do I have dry eyes." For an example if you have ocular rosacea it is not a good idea to squeeze your eyelids as this will only aggravate
the problem.. You need to know the cause to work on a salutation..

[kanon]

I have mgd. I don't know why: I don't have ocular rosacea, and I never had Lasik.

[patrick]

Ever worn contact lenses?
I managed to get a referral from my General practitioner for yet another opthalmologist in the umc in utrecht.
That's the only place where they can make autologous serum drops. I put it on the post yesterday so i hope to get a quick answer and an appointment to be able to discus this option there. They also have a specialised pain clinic in the same hospital,so maybe i can combine these two things together. Would be great.
These diclofenac drops sound like an ideal pain relIever for the eyes,but when i google it i only see that it is mainly used as an eyedrop after Cataract surgery and not so much as a painkiller. I guess this diclofenac has too much unwanted side effects to use it chronically in the eyes or so.
Maybe someone with a little more knowledge here on the boards can shed a little light on this?

Patrick....

I

[kanon]

No I have never worn contact lenses.
Patrick- glad you are going to Utrecht to check out the serum drops. Let me know what happens. Also, when you see Mirjam does she express your glands? How often do you go? Have you ever had probing done- by her or by anyone else in the Netherlands? I wonder if Dr. Mirjam does probing. I wonder how risky probing is. I started to read a lot of threads here about probing, but my eye wouldn't let me read for long enough!

[patrick]

I'll keep you updated about my experiences with the serum drops. As anybody here on the boards who is interested in it of course.
Yes,she does express the glands every time i visit her. She is quite experienced with it as well. For expressing the upper lids she kind of flips them. I guess that is to get better Access to the glands. This does not hurt,but it is kind of uncomfortable.
Last time she expressed my glands she told me she really almost couldn't find any clogged glands anymore and she said that she was doing some 'fine tuning'. Okay,good news you could say,but unfortunately these good results do not in any way correllate with the constant pain i experience.
My visits are very irregularly,but i try to go there twice per year. It is not like with the dentist that you are supposed to go there twice per year. Mirjam does not take the initiative or tell you when to come back. You have to do that your self.
I am not quite sure about it,but it would surprise me if mirjam does not do probing. As far as i know she offers any procedure currently available.that does include probing and lipiflow.
Did she already measure your osmolarity with this tearlab device she has?
If so,what was your score? Mine was like 293 and it was measured in the evening. (seems these numbers vary a little bit depending what time of the day the measurement was done).
Don't know if probing is a very risky procedure,but i read somewhere that some opthalmologists don't like the idea of opening the glands with a needle,because there is always the possibility that this needle can damage the tissue inside the gland.

Patrick...

[djconforto]

Have you tried Sensitive Refresh Celluvisc lubricant eye drops? They come in a vial.