Update - what the heck is going on?

[agrlds]

Hi guys. I'm writting this with hope that some of you may have ideas for what's causing me this suffering.

so to update:

I went to a doctor a few days ago. Tbut was > 15. Schirmer was like 15 (eyes open and blinking). What the... Please help me understand what's going on! The theory of this doctor is that my lipid oil quality is not good and that's what causing my symptoms (is that even possible to be the cause with a tbut > 15?...) I just don't feel Mgd is my issue.

The thing is like 3 weeks ago i was at another doctor and schirmer was 3 in both eyes (eyes closed). I just don't get it.

I suffer all day long, everyday. Phone chatting and TV watching is so painful nowadays.. My eyes burn all day, and even burn when closed. I really feel my problem is aqueous and that the 2nd schirmer (the open eyes one) was a false negative.

I did blood tests and everything is normal.
I never had eye issues before this (and i've never worn lens or glasses).
This all started 1 week after my shoulder surgery. The only eye-related thing that hapenned was Horner syndrome (during surgery - due to anesthesia) from which i had no signs 24h after the procedure.

I just... I don't know what to do more. I can't even seem to find what i have... How should i be able to be positive with things going like this!...

Does someone have ideas for WHAT can be causing this nightmare? I can't even feel sleepy never...

thanks guys

[Hokucat]

Hi agrids. I wonder if the Horner's or anesthesia from your surgery caused some damage to your corneal nerves. Especially since your last TBUT and Schirmers was pretty normal. Has a doctor checked your corneal nerves? I think they need to use a confocal microscope to do this.

It is odd that your Schirmer increased from 3 to 15 in just a few weeks. Have you made any changes to your regimen or diet during that time? I've read that an improvement in clinical signs can precede a patient physically feeling better. Or, the second Schirmer was not an apples-to-apples comparison since it was with your eyes open and blinking, whereas the first was with your eyes closed, which is the more standard method. Next time you see an eye doctor, see if they can do it with your eyes closed.

I think it's possible to have MGD even if your oils are flowing with a normal TBUT, if the quality of your meibum oil is poor. It can be affected by diet. After discovering drinking lemon juice in green tea helped my oils flow, I still notice my eyes will feel a little better or worse depending on what I eat. For example, if I eat too much sugar, gluten, or diary, my eyes don't feel as good the next day. When I eat protein (especially salmon or amazingly a small amount of steak), fresh juiced vegetables, and fresh berries at the beginning of the day, my eyes feel really good the rest of the day, and often the next day.

I don't know what your diet is like, but you may want to make some adjustments to see if that helps. Keeping a daily log of what you eat and drink, and how your eyes feel that day and the next day could help you methodically narrow down what makes you feel better or worse. Here's a recent post where I identified major factors that helped me get better, including what I eat, in case that might help you:

http://www.dryeyezone.com/talk/forum...ccumulate-info

[agrlds]

Hi hokucat, thanks for your time and concern.

I just wonder every day what did happen that day that changed my life completely... I just can't seem to find a correlation between non-ocular surgery and long term dry eye after that... I had a small corneal abrasion on the right eye due to it stayed a bit open during the surgery (but it was treated 3 weeks after when i went to the 1st doctor and now they say my corneas are great).

I just can't find the answer and can't go to the root cause and i'm not getting better... I just belive something screwed my lacrimal glands (general or local anesthesia, don't know which one...) due to the conection of these glands to the sympathetic nervous system (and this could be affected).

As you said, i believe that the 2nd schirmer was a false negative and i will ask to make the next one with eyes closed.

Regarding diet, it just doesn't make sense to me that that is my problem, because i never had dry eye problems before surgery. Despite that, i started Hyabak Caps (omegas and more) just to try everything.

I just feel regret and despair everyday now as i had a perfect life before this and now this gets in everything i do daily... How did you deal with that to overcome your problems, can i ask you?

Thank you again,
Andre

[MGD1701]

Hi agrids
Schirmer test: should be done lastly NOT in beginning as it effects other results, I have read.
I personally think such test is not so valuable as confocal microscope and osmolarity.

Well, what is done is done. We can only try harder to improve the situation by exploring new things, in my view.

[Hokucat]

Hi Andre. It definitely was not easy for me to avoid depression, especially when I was in so much pain for several years and nothing gave material relief. What gave me some very slight temporary relief was using Genteal Severe Eye Gel...I know it sounds inconsequential, but I don't think I could have made it through those years with zero tear film without it. It is a different ingredient than most gels that I found soothing. So hopefully you can find that thing that gives you a little relief too. Also, always looking into new treatment options and diet changes is what gave me a little hope to keep pushing myself forward.

Another thing that helped a little to cope with the dryness is Evoxac (generic name Cevimeline). It's a prescription pill that gives moisture to the eyes for ~4 hours after each dose. It also increases the saliva in the mouth, so some people don't like that, but if it helps your eyes feel more moist when nothing else does, it might be worth it. I have a prescription to take it up to 4x daily, but these days I usually only take it before I drive or attend an all day event.

I think because your condition came on so suddenly, it's been more difficult. It does seem your eye problem happening soon after the surgery and getting Horner's Syndrome is more than a coincidence. And there is some info out there, but not a lot, about the sympathetic nervous system's relation to the functioning of the lacrimal glands. But I don't think a regular ophthalmologist would be familiar with this...did you mention your theory on this to your doctors? Perhaps you need to see a neuro-ophthalmologist, if your problem is not resolved soon.

I don't know if you would be able to wear scleral lenses right now, but maybe something to look into to manage the dryness. I was not able to use them for several years because my eyes were too dry, but now I wear them 12+ hours a day, and it enables me to do things like watching TV, using electronic devices, driving, walking outside, etc. more comfortably.

http://www.bostonsight.org/PROSE/PRO...y-Eye-Syndrome

Ok, if I think of anything else, I'll let you know, Andre.

[MGD1701]

Hi Hokucat
Could you tell me how much % of glands were functional when your schirmer test was both 0?
How much % are functional NOW (after you drink green tea/lemo)??

I know you have done many things including LipiFlow, probing (x7 times?), etc and you have managed it.
If your eyes are perfect now, does it mean
1) you have MORE glands are now functional?
2) how? your glands were short before and now grow to NORMAL???

Just curious HOW glands develops. Thanks so much!

[agrlds]

Thanks Hokucat, the information you provide is very very useful to me. I haven't yet started with green tea + lemon juice yet but will start in a few days when at home. I think i will have to give it a try to cyclosporine too to see if it can help me...(don't know which one i will manage to get and i don't know what's more appropriate between restasis, xiidra and ikervis too..). If non of these work, i think i will try scleral - never used lens before.

MGD1701,

does that mean you have aqueous problem?? Your BUT seems quite high now. You think you have MGD will low schirmer and high BUT?? Based on the "expressing glands" diagnosis? That could be important for me, because i have low schirmer / high BUT but non of doctors expressed my glands (and i just assumed they were ok based on BUT). What other conditions your eyes have right now (signs / symptoms)? What % you consider your eye condition now?

thanks
Andre

[MGD1701]

Hi Andre
No, I do NOT have water problem. All 3 doctors pressed my glands and confirmed I only have MGD/incomplet blinking.

Dr - if doctors do NOT press/check your glands, find another one as it is basic and important to check glands function.
Glands can look very normal but no oil serects when press.
This is most important - do this first/NOW so you can solve your problems step by step.
If you dont know how to find a expert - just ask people in the forum, maybe someone could help.

Schimer Test: many doctors think such test is unless - dr who do this are not up-to-date. I think osmolarity test is more useful.

My main problems: watering, sometimes creamy/sticky discharges (especially after 21:00) = too dry or bacterias?
Often warm compress, tea tree oil shampoo (soap-free) help these issues. I guess I have solved about 75% of my problems.

The article I posted recently really helpful - which you replied too - Maybe you could find some useful info there.

[Hokucat]

Hi MGD1701.

The ophthalmologist I used to see when my Schirmers was zero did little to evaluate my glands, so don't know what % were functional at that time. It was not until I had my first probe procedure did the probe specialist find most of the glands he probed were blocked, several with scar tissue, and some appeared permanently blocked (could not get probe through) or atrophied.

I did the probe procedure five times over two and a half years. After each of the first four procedures, my eyes always felt a little better for a short time, but my glands quickly got blocked up again, as confirmed with each subsequent procedure. But NOT after the 5th procedure when I started drinking the lemon/tea. After ~a week of drinking it, my eyes had more moisture and that unbearable pain I had for several years started subsiding, and my eyes have continued to improve since then as I've continued the lemon/tea. Am guessing it may have also helped my lacrimal glands, or maybe they could function better once the MGD condition improved. I'll never really know.

I have not been back for probing since the 5th one, so do not know how many glands are functional now. But other specialists I see confirmed some tear film now, and we can see oil coming from my glands. I'm not so much into what % of my glands are functional like you are (although that can be helpful information to track), but the main gauge is my eyes FEEL so much better!

So I didn't have any glands that "grew back", as you say. The probing unblocked many glands and the lemon/tea somehow helped the oils to flow, restoring dysfunctional glands to make my condition more manageable. The permanently blocked/atrophied glands will not come back, so there remains some level of dryness I'll always have for which the sclerals, and as needed Evoxac/Cevimeline, help make up for.

So my eyes are by no means perfect now, but much more manageable and comfortable to the point where I feel like I have most of my life back.

[Hokucat]

You're welcome, Andre. You are right to try to find the root cause of your condition, as it could change what treatment options are best. Just know that sometimes we can only get a likely cause, not a definitive answer.

Also, sclerals can provide some relief, but do not address the cause. But providing relief is equally important.

I hope you are able to find some relief and resolution soon, keep us posted. If you have any questions on any treatments as you look into them further, please don't hesitate to ask. Lots of knowledgeable and helpful people in this forum.

[agrlds]

Hi guys. Thanks for the help/sugestions again.

Look,

- I took accutane like 4 years ago (didn't feel eye issues while taking it).
- I also took antihistamines troughout the years to control my dust allergies (which never bothered the eyes, the allergies bothered my nose).
- I also took (yeh it continues..) antibiotics 2 or 3 times to resolve pharyngitis issues (i get it at least twice every year).

Maybe i had some sort of dry eye without symptoms before the surgery... And the surgery was just the end point of something bad that was already happen, with the meds they gave me there. Of course i didn't know the side effects of the meds i took.
What do you guys think?...

Andre

[Hokucat]

Hi Andre. I have read that accutane and antihistimines can cause dry eyes in this forum, I guess because these meds have a drying effect, including on the eye glands and tissues. Try doing a search in the menu options for these words and for allergies, if you have not already. Curious that you did not notice you had dry eye symptoms before the surgery, and how the surgery or anesthesia mght have triggered it.

I can't remember if in your prior posts you said you tried punctual plugs yet, but given your Schirmer is likely still low (aside from that last one that may have been a glitch), plugs are something usually tried by eye doctors early on when one has aqueous deficiency like you, and is a very minor process to put in...usually part of an office visit. They typically try it in the lower tear ducts first, and then later also in the upper ducts if needed, often while the lowers are still in. They can put in temporary disolving plugs or removable (by doctor) silicon plugs. Some people also have their ducts permanently cauterized, after confirming the temporary or silicon plugs works for them.

[agrlds]

In the next appointment i will have with a DE specialist i will ask for the plugs.

Also i will ask for Schirmer with eyes closed.

Will also ask for him to express my M. glands. I don't feel my issue is mgd but i know i can have it too due to the inflamatory cicle. My eyes become reddish and with more veins when i need to use them with more effort (TV, PC, etc). But, when i'm not doing those activities, eyes will burn despite that. When they are not burning, there is always pain/discomfort which are difficult for me to descbrite (i would describe it as corneal pain; i also add my eyes don't hurt if i touch them). - I would like to know if aqueous defficient people have these symptoms too.

I will probably try cyclosporine too if schirmer reaches the values i'm thinking it will.

I just lost my whole life comfort in a blink of an eye - i can't think of anything else as my eyes won't let me feel good - i'm currently not living, i'm surviving. i don't even smile or have fun anymore; i don't know if you guys relate (only life goal now is that the eyes feel good).

Thanks guys for helping me in this undeterminable-timed journey.

Andre

[Hokucat]

Hi Andre. That sounds like a good plan for your upcoming appointment. As far as your glands, he/she likely will not fully express them at this appointment, but certainly can press on a few to see if oil comes out and see whether it is normal looking, thick, or non-existent.

I can certainly relate to how you are feeling right now. I think many of us in this forum have felt or are currently feeling the same. Hang in there, it can get better once you find the thing or combination of things that help your condition. You are definitely on the right track being your own advocate, and asking questions in this forum.