Depressed and despondent.

[Jack]

Sorry I missed this! Pm'd you my phone!

Got it and PM'd you back, many thanks!

[Rebecca Petris]

Sorry I missed this! Pm'd you my phone!

[Jack]

Hi Jack, Welcome!


What kind of doctors and what have they diagnosed you with?

Corneal specialist ophthalmologist - one that works more with disease than, say, LASIK and cataract - would be the best equipped type of doctor to get you a more detailed diagnosis. However, it's not at all unusual for people with dry eye to get variations in their diagnosis with every specialist that they visit. This is definitely not as simple as going to the world's expert. There's a lot of experts, and some of them are tuned more to one issue than another. Echoing epicjinx... geographic clues would help with ideas.

Rebecca, I need a recomendation for a doctor. The forum has so much information I am getting confused doing a search here. I still don't feel I have seen a doctor who has accurately diagnosed me. I live in Indonesia, am in Hawaii right now, but can fly to any city in the USA for free. (Part of a United employee's family deal). Whom should I see? Is there anybody in LA, or Hawaii, or elsewhere in the Western part of the USA that you would recommend? I also sent you a PM with a bit more information....Many thanks.

[Jack]

Symptom variability is a hallmark of all different kinds of dry eye IMO, including exposure

Thanks Rebecca. Your comments have been useful and helpful.

[Rebecca Petris]

Btw, do you think an exposure problem could cause varying, multiple symptoms, that come and go individually? Cheers

Symptom variability is a hallmark of all different kinds of dry eye IMO, including exposure

[Jack]

Jack

Oooh that's a nice big fat clue. If this is essentially an exposure problem, well, you can try and improve the symptoms with all the conventional and unconventional dry eye stuff but at the end of the day you still have an exposure problem... conceptually the fixes are either altering the eyelid structure in some way or getting something besides the eyelid itself to cover the problematic part of the cornea & conj (eg PROSE in fact if you were still in LA I would be thinking of Gloria Chu at USC). Much as I abominate tarsorrhaphy I wonder if you might be one of the people it's actually a good idea for.

Agree about Lipiview though I think a good cornea doc ought to be able to shed some light even without. The oculoplastic folks, no matter how good, are much more limited in their assessment of the cornea - but at the same time, even among the cornea docs, not too many understand this stuff if the level of symptoms/irritation outstrips their clinical findings too far.

Many thanks Rebecca, that was helpful. As I live in Asia (Bali) if you happen to know of any good cornea doctors in Singapore/Thailand/Malaysia I might plan to see one. Thanks again.

Btw, do you think an exposure problem could cause varying, multiple symptoms, that come and go individually? Cheers

[Rebecca Petris]

Jack

That outer corner is very very rounded, and exposes much more of my eye than normal. Two doctors have told me I might want to try a small terrsorhaphy because that roundedness might in fact be the cause of my problem.

Oooh that's a nice big fat clue. If this is essentially an exposure problem, well, you can try and improve the symptoms with all the conventional and unconventional dry eye stuff but at the end of the day you still have an exposure problem... conceptually the fixes are either altering the eyelid structure in some way or getting something besides the eyelid itself to cover the problematic part of the cornea & conj (eg PROSE in fact if you were still in LA I would be thinking of Gloria Chu at USC). Much as I abominate tarsorrhaphy I wonder if you might be one of the people it's actually a good idea for.

Agree about Lipiview though I think a good cornea doc ought to be able to shed some light even without. The oculoplastic folks, no matter how good, are much more limited in their assessment of the cornea - but at the same time, even among the cornea docs, not too many understand this stuff if the level of symptoms/irritation outstrips their clinical findings too far.

[WellEyes]

WellEyes, I would not call my problem "pain" so much as an "irritation", that takes several distinctly diff forms, wach of which comes and goes in severity. But I can always, alwasy, feel something, and so I'm in a constant state of frustration.

I know exactly what you mean. In my case it is this irritation (I call this a "constant and unpleasant awareness of the eye) which builds up until the eyes will get really tired at one point and start burning in addition. It is almost as if the eye was covered with a blanket or something. It never stops, just changes in the level of severity depending on the stimuli (air conditioning, light, wind, or simply the fact that the eyes are open)

I'm not a doctor obviously but out of experience and from what I understand from you, it seems you have some issues with the nerves or damaged tissues affecting the eye area. This doesn't mean you don't have dry eye at all but probably not to the level that you're feeling the symptoms. I mean people with the same degree of dry eye like me (mild) usually live perfectly fine with artificial tears twice a day. We should NOT be feeling this frustrated according to the clinical eye exam.

[farmgirl]

Lipiview will tell you if that eye closes properly, I think that is the most important thing to establish. It could be just not closing properly at night as well.

[Jack]

Is your pain constant or fluctuating? Do you wake up with pain as soon as you open your eyes or even before you open your eyes?

WellEyes, I would not call my problem "pain" so much as an "irritation", that takes several distinctly diff forms, wach of which comes and goes in severity. But I can always, alwasy, feel something, and so I'm in a constant state of frustration.

[Jack]

Hi I am sorry to hear your story. Your symptoms are similar to mine in that its just the outer corners of my eyes that are burning badly - they have been feeling sore and dry for almost a year now but a schirmer test I had done a couple of months ago when the doctor ripped the test strip off my eyeball really did set things off and the burning is now excruciating.

I was wondering, have you had Lipiview? When I had this done, I was given the most coherent diagnosis so far, and that was that my eyes were inflamed and dry because I was a partial blinker.

They said partial blinking was most common in people who have had eye surgery like yourself, and people who have worn contact lenses or use computers alot like myself.

I am still on the journey of trying to find a solution to my problem, but the first step is to find the correct diagnosis.

I truly hope you find a good doctor where you are, I am not having much luck here in the UK...

Alix, many thanks for your response. I have not heard of "Lipiview" but will start reading about it. I don't think partial blinking is my problem, but could be. Yeah, "finding the correct diagnosis" - that is my problem in a nutshell, exactly.

[WellEyes]

Many thanks for that comment! No I don't have fibromyalgia but may have what you are describing, yes. Corneal neuropathy.

I have tried Amitriptyline, an anti-depressant also prescribed for nerve pain, but did not continue it long enough to tell if it helps - Im afraid of the addiction problems I have read about.

In my case, antidepressants dry my eyes so much that they are not an option. My life quality is so badly influenced that I am not concerned about addiction. The only concern about neuropathy pain drugs (actually anti-epileptic drugs like Lyrica, Gabapentin and Tegretol), there are many comments that their effect is randomly fluctuating and vanishing in time. Tegretol is the one that is said to work the best for trigeminal neuropathy. That's the only one I have not tried yet but not so keen on those medicines as they have horrific side effects. At the moment I am trying acupuncture. So far no benefit. I can judge better after a few more sessions. I'm suffering from extremely sensitive eye surface (to wind and air conditioning) and severe photophobia, and burning.

Further there seems to be electrical stimulation therapy which might be worth trying but so far they don't know how to detect the origin of the problem- let alone solve it. There are some researches being done but we are not there yet. For the time being, I don't have a choice but count on my body's natural healing ability and time....

Is your pain constant or fluctuating? Do you wake up with pain as soon as you open your eyes or even before you open your eyes?

[Alix]

I am new here. I can't tell if I have dry eye, even after visits to at least 10 different eye doctors and surgeons. But I very much do have a severe eye problem.

I have some of the symptoms of dry eye, to be sure, but only in the outer corner of my right eye. For some time I believed this was not dry eye but the result of revision surgery to correct scleral show from previous cosmetic surgery. Occulopoastic surgeons concurred, but not one of them seedm to know for sure.

I have tried many different eye drops, none of them make a difference or help. Most seem to sting and do not good at all.

I wonder who is the world's expert on dry eye, and should I go see him/her? Anybody know?

Hi I am sorry to hear your story. Your symptoms are similar to mine in that its just the outer corners of my eyes that are burning badly - they have been feeling sore and dry for almost a year now but a schirmer test I had done a couple of months ago when the doctor ripped the test strip off my eyeball really did set things off and the burning is now excruciating.

I was wondering, have you had Lipiview? When I had this done, I was given the most coherent diagnosis so far, and that was that my eyes were inflamed and dry because I was a partial blinker.

They said partial blinking was most common in people who have had eye surgery like yourself, and people who have worn contact lenses or use computers alot like myself.

I am still on the journey of trying to find a solution to my problem, but the first step is to find the correct diagnosis.

I truly hope you find a good doctor where you are, I am not having much luck here in the UK...

[epicjinx]

Have to say I disagree with this kind of generalization (although I avoid drops, myself, and I think many people could, who aren't). It depends what you consider the main problem... and also whether the medical issues are actually addressable - because in some situations, they aren't. In patients with severe aqueous deficient dry eye for example, drops aren't used to "mask" symptoms, they're used to keep the corneas safe and comfortable.

Its just i find eye drops dont help as much when treating the problem, but thats just what i think. It's just for me i was on eye drops pretty much a year and a half and it didnt help much for me, not saying itll be the same for everyone, main problem for me id say treating inflammation is a start, i just dont think eye drops help as much as getting to the root problem - they may help others, and they may not help others. I just feel like it masks symptoms as they have never really helped me, (dont intend on arguments just my view )

[Jack]

HelloJack,

I have had similar problem in the sense that no eye doctor could really diagnose correctly for more than a year. It looked like a dry eye after my upper blepharoplasty. To cut it short, it seems that I have mild dry eye with the main problem being neuropathic pain. Corneal neuropathy is a disease neither neurologists nor ophthalmologists really know about. It has a very complex working with dry eye. According to some research it might even cause dry eye. If it's the small fibres, also impossible to diagnose with evidence. It is some kind of trigeminal neuropathy. Do you have fibromyalgia?

I am still struggling with it.

Many thanks for that comment! No I don't have fibromyalgia but may have what you are describing, yes. Corneal neuropathy.

I have tried Amitriptyline, an anti-depressant also prescribed for nerve pain, but did not continue it long enough to tell if it helps - Im afraid of the addiction problems I have read about.