Should I see Dr. Tseng?

[Vicki In Oregon]

I dont uderstnad a lot on his web site but am so desperate. anyone have experiene with him? Thanks.

[neil0502]

Vicki-

We don't know each other, but ... please believe me when I say that I feel your pain.

I haven't seen much about your situation because I'm traveling in Europe. I get the sense, though, that you are absolutely at wits' end and are desperately trying to determine what to do next.

You're putting up a lot of posts and asking a lot of very general questions that may be difficult to answer or may have already =been= answered.

I have a great deal of sympathy for what you're experiencing, and want to make one =constructive= suggestion: you should take the time to search through the forum, learning about others' experiences with the particular conditions that affect you, etc.

Most of what you're looking for is already in the forum, largely because we all (more or less) started just where you're starting now. What you canNOT find, you should then turn into questions. You'll find all kinds of people here willing to help.

I wish you all the best, Vicki. This is definitely a very difficult condition/disease/disorder/thing to deal with.

Neil

[Vicki In Oregon]

Hi neil,
The doctors are not helping me I feel, give me different info and when I ask if I will always be like this one said he never had a patient that could not get comfortable. Is he not telling the truth? I don’t know. One doc says to use artificial tears all the time, every hour the other says stop all together. They don’t work at all but one doc thinks they can have long term therapeutic affect the other says they may be aggravating my already unhappy eyes. I am at my wits end just like you said. The right eye feels like there is a pebble in it 24/7 that is constantly scraping my cornea. For anyone else who feels that I don’t know how they live with it. I am just nauseas from the pain. The docs make it sound like I will be okay but sitting here hoping restasis will work is not enough because I still must function, still must work and survive like most of us here. Those that think you will recover dont tell you why. Without telling me why i feel like it is false promise to get you out of their office quicker. They don’t give me proper diagnosis. Today my shwimmer test was 7 again and he said that is not that bad but I feel like it is an arbitraty # that has little to do with my pain level. Last summer I had 20 and 30 on that test when I was screened for Lasik. You are right I should read more and I do actually but somethings I easily forget due to pain issues or I don’t understand. But I am noticing some things are answrerd you are right. I think in some cases there are no answers and I feel like the docs don’t know and don't answer or are not being honest with me when they say things will improve because there are people on here that have had this for years. I hate the unknown and it scares me to think that you guys were all where I am today at some point and that I am headed down that road, sorry if that sounds selfish somehow. It all happened overnight and I cant make peace with it, I just can’t. It’s just not normal to walk around with a pebble scratching your eye all the time with no relief ever. The doc today said I have a strong case of giant palpitary conjivitis. Another had told me ketatin conjivitis a few weeks back. I am on my steroid alrex and now patanol too for the infection or whatever it is. Nothing has worked all this time. I got upper plugs too today. So far I am still waiting for relief from them. I will search to see who has seen Dr. Tseng I guess. I don’t want to make a trip if there is no point. I see you are in SD, I am coming this weekend for a few days, never been there before. Hear it is a good place for dry eyes.Does the blurry vision every go away? I’m constantly cleaning my glasses only to find out it is my eyes, not the glasses or my windshield that is the problem. Sorry I am complaining so much. I just pray to god this improves for all of us and I don’t even believe in a god, that is how desperate I have become.

[Lucy]

Vicki- Neil and his wife are currently traveling Europe for the forseeable future. I trust I'm not revealing any secret because he talked at length about it before he left some weeks ago.

Neil also is not able to check into the bb on any frequency due to his situation. I just don't want you to expect continuing correspondence with Neil because it won't be any time soon.

I, personally, think you are way, way too anxious to start making plans to see Dr. Tseng. Unless you have a lot of money and time for travel? Neil is just another patient like the rest of us. There is NO FAST QUICK CURE. We all arrived here for a variety of reasons.

If your eyes FEEL dry, it seems that dosing with non-preservative drops hourly would not hurt you. If you feel you need the drops to relieve your discomfort. You have to read between the lines here and realize we can't tell you what to do except "follow your doctor's orders."

[Vicki In Oregon]

Hi Lucy. No I can't afford the time and $ I barely get by as it is. I used up my work leave for doc appts. However, my employer will not keep me long if I keep making mistakes caused by pain and blurriness which means I would lose my health insurance. So I am stressed. My chronic tmjd related head, neck etc..pain is out of control too lately so I am finding it impossible to deal. Maybe I am weak. But the majority of people not on this group don’t deal with such things. Since I can't live this way, if someone can help me on the other side of the country and it means using up my savings I have saved since I was a kid, then i dont see any choice. So while I cant afford it, I cant live this way either. I just dont know if he is the answer. I cant do something i haste, I am not Paris Hilton. Maybe I need scelerals like you? But docs here either dont know about them or are against them because they dont know.

[Lucy]

Vicki-My post had two purposes:

1. To comfort you as you are very, very anxious which does not help dry eyes or help us plan on future events.

2. To let you know that you just don't "plan" a trip to Dr. Tseng on the spur of the moment and no one here can certainly give you that advice. You are free, of course, to do what you like.

I will not post again if it will make you uncomfortable as my purpose was to comfort, not irritate you.

Actually three purposes- To let you Neil was out of the country and would be for some time and probably is not able to read any of our posts on an ongoing basis.

[Vicki In Oregon]

Lucy you dont irritate me. I dont know how you got that impression. I appreciate your responses. I would like to learn more about yuor sceleral expeerience. I would be so happy to get a little relief and be able to not have to wear my glasses. esp the former. Do you think i am a candidate? I wish my docs were not so conservative. I hurt to much to wait a month to see if something works. I want to try it all right *now.* He said maybe he will give me doxy next time when i asked for it but i am so impatient and anxious as you can see. I just need a little relief, just a little improvement to get back my sanity and hope.

[green eyes2]

Hi Vicki,

I am sorry you are in so much pain. I can definitely relate to how you feel. You are doing all the right things. It seems eye doctors don't have a good understanding of all the different types of dry eyes and how to treat them. I believe some of them get very frustrated at not being able to help, but a lot of them could definitely have more empathy.

There isn't really a whole lot can do to help us aside from plugs, eyedrops, doxycycline, steroids, vitamins, tell us to do eyescrubs, hot/cold compresses, and use Restasis. Unfortunately, there is no new dry eye medication coming out on the market anytime soon. I've been to many different eye doctors and have left their offices crying because they were of no help. You are lucky you found this website. I just found out it this year and have been suffering for what seems like forever. I can't tell you anything about Dr. Tseng since I've never seen him. Maybe someone who has seen him could tell you if they had any improvement afterwards. Otherwise, I don't think I would go and would just try everything your doctors give you to try. If these things don't work and you are still having horrible pain, then you can ask for a referral for sclerals.

You must have an eye doctor give you a referral for the sclerals. Your eye condition, since it hasn't been very long, may get better or may not. You have to give Restasis a try and whatever else the eye doctors offer. If you have side effects like I do, which was a horrible burning sensation in my eyes all day from using Restasis then tell the doctor you can't use it. Try to stick with at least one regular eye doctor or maybe two, so you'll have one as a back up. If all the things they give you to try don't work and you are having such horrible pain, then I can't imagine not being able to get a referral. They give referrals for elective LASIK surgery to people with normal, healthy eyes who just don't want bothersome glasses or contacts. It doesn't make any sense to me why they wouldn't give someone with severe ocular disease or extreme pain who has tried absolutely everything they have offered and gotten no relief a referral for sclerals, while they continue to give people with healthy eyes a referral to be operated on...go figure!

I just wanted to add that trying all these things takes a lot of time. You'll have to be patient. If you need a pain referral or something for anxiety, you'll probably need to go to your regular doctor..eye doctors aren't known for prescribing it.

[SusieD]

Vicki - I too KNOW how you feel. You want to try everything yesterday! Impatience and anxiety will only hinder you though. I was like that initially - can I get this, can I get that, etc I worried constantly - and it did nothing for me at all.

Dont get me wrong I still have days when I get extremely frustrated with how slow everything seems to go and every little thing takes time but you really do need to try and relax a bit. If you dont like the doctor you are seeing, shop around - find somone else.

When you are this wound up and anxious, you become unable to see the wood for the trees. Its also not the best idea to make any big decisions while you feel this way. Dry eye often takes a systematic approach and unfortunately for some, it can take quite some time to find what works for them. That doesnt mean to say you won't find something that works for you.

Take care.

[Vicki In Oregon]

Thanks Susie and Green Eyes. Because people here suffer so much I worry that I may not find anything that works, esp since everyday becomes worse. I feel like I am losing my mind. I still not sure how to do the lid scrub. I read this and that but in the end I don’t know what to use and how exactly. I just get nauseated & can’t absorb info. Is this blurry vision permanent? Is there any chance I wonder there is something else going on? I have dry mouth and dry lips too. As far as Doxy, has it worked for anyone, should I insist upon it more? I fear traveling this weekend being in this state I am in. Sorry to ask things I already may have asked.

[green eyes2]

You didn't mention dry mouth before, so I didn't mention this. There is a medicine called Salagen for that and it might help your eyes, too. I think it can have unpleasant side effects on some people, though. It sounds like you may need to go to a rheumatologist and get tested to rule out an autoimmune disorder. They prescribe this stuff. I don't have dry mouth or anything else wrong with me..just the horrible dry eyes, so I never tried it. Hope this helps!

[np1981]

Is there any chance I wonder there is something else going on? I have dry mouth and dry lips too.

Perhaps you should be tested for Sjogren's Syndrome.

[neil0502]

Lucy's exactly right about me being in Europe and having very limited access (thanks for providing that, Lucy. I should be very thoughtful before I engage in 'dialogue' when I'm in this particular situation.)

Other than agreeing with the "test for Sjogren's" comment, I need to offer you this--and it's something that I work on every single day:

I believe that everything you are experiencing is real, painful, frustrating, and challenging for medical science. I also have chronic pain. Yesterday, some very kind people took my wife and me out for an entire day to tour the Dutch cities of Leiden and Delft. Though I wore my wraparound glasses day and evening, I am in a very bad way this morning. Y'all know what I mean.

Today, then, I am going to =have to= focus on endurance ... on tolerance ... on stress reduction ... on taking care of me.

Today, there is nothing I can do to improve my medical situation. I'll use the NSAID drops and take the meds, sure, but ... nothing will be better ... today.

Today, then, I will use the things I've learned--both here and at the Buddhist Monastery that I visited--to help me get through the darkest of hours.

That's all I =can= do. It doesn't mean I'll stop seeking relief. On the contrary: I got an e-mail back from the Spa in upper Austria where they do the Iodide Iontophoresis and Lipid Spray Therapies. They have a 21 day package, costing 1,875 Euro ($2400US). I don't know whether we can afford that, or whether my wife could sit for so long (at a spa??), but ... it's something to think about.

In other words, Dear Vicki, the "cure" or "relief" will not come as quickly as =any= of us would like. It is probably MORE important, at first, to make sure that you have both feet firmly on the ground, and that you are doing EVERYTHING that you can to manage pain, stress, and anxiety. Otherwise (I believe), relief will get further and further away.

This is an awful thing. I have tremendous sympathy for everybody on this board. Nobody came here out of boredom or need for a hobby. We came seeking help--some of which exists; some of which does not.

Coping may be the most important therapy any of us can learn. I hope you find some coping skills that help you .... and that you have a WONDERFUL time in San Diego. It really IS an incredibly beautiful town!

I'll be on the internet again this evening, but have a late, late flight out of town tonight. After that, it'll likely be a week or so before I can check in.

Best to everybody ... most sincerely.

Neil

[Judy]

Hi Vicki in Oregon,

SO sorry you are in such pain. Please try to refrigerate your eyedrops. This really feels good to the dry eyes. You're in my prayers...

[Rebecca Petris]

.It is probably MORE important, at first, to make sure that ... you are doing EVERYTHING that you can to manage pain, stress, and anxiety. Otherwise (I believe), relief will get further and further away.

What he said.

For Vicki, and for anyone else going through such intense stress - whether during their first really acute period of dry eye pain or a later episode or cycle - I am perfectly convinced this is the very most relevant and sound piece of advice you can get right now.

You may learn about every treatment from A to Z and try many of them. But until stress and anxiety can be brought to a manageable level, it's questionable whether you'll be in a position to give any of the treatments full and proper consideration or a thorough trial - or whether you'll be able to experience their potential benefits if so. When we're under great stress, it's hard to make good decisions and hard to trust any doctor - especially when advice varies.

When Neil says "manage pain", this does not have to mean pain drugs. To me, it means acquiring or innovating a few useful tools to turn to to get one through severe pain flare-ups - hopefully without doing things that are apt to make the eyes worse later - both so that you CAN get through without going nuts from and so that over time you develop the CONFIDENCE that you have an 'escape route' when the pain hits hard. Bringing the fear of bad episodes under control, in other words. There's no hard and fast line to be drawn between "treatment" and "pain management" since there are a lot of places where this overlaps.
I'm thinking of things many users here benefit from like:
- Good wraparound eyewear that you can put on and get some relief.
- An afternoon nap.
- A bag of ice.
- Eye protection for nighttime so that you don't wake up with erosions, lids stuck shut, etc.
- Cool saline rinses.

As to managing stress and anxiety... and depression... I think that it's pretty common for people in the early stages (often the first year or more actually) to benefit from medication. Yes, some meds will make dry eye worse, but it can also be a fair tradeoff because getting anxiety under control is absolutely requisite to deal with the dry eye. Medication is of course not the only way to go nor is it always appropriate - stress-busting activities & maybe giving yourself a break from some other responsibilities can be helpful. And it's important to have your whole "team" behind you on this, NOT JUST EYE DOCTORS. Eye doctors are for eyeballs (and not all are up to the mark on even those ). We are whole people, not just eyeballs.
If at all possible we need on our team:
- A good general practitioner who can assess where we're at generally and who can refer us when there's evidence of intense emotional distress
- Family support... Of course, it can't always be had, or can't always be had for the asking. Some people seem to understand and accept your pain very easily and others don't or can't. One thing I've seen help from time to time if one's closest family members didn't seem to understand is to get them to read some of the other stories here. DianaT's is a particularly potent one. Reading some of the stories by patients here really can help people to understand what profound impact dry eye can and does have on the lives of otherwise normal, healthy people.
- ...and/or supportive friends. Hopefully in your close vicinity. But many people find new friends on the BB - people they get to know and whom can call when they're having a particularly hard time.

I would also like to say that although for many people finding this board has been a breakthrough - because they've learned about something that helped, because they've found people who understand - still I am convinced that for some people at some stages spending too much time here can be harmful. If you're already in distress, reading about people who have suffered from this for years may only increase your distress. Reading about treatments your doctors didn't tell you about may only increase your fear and distrust. Reading about too many treatments may bewilder you. The veterans here know what I'm talking about, I'm sure. That again is why I want to urge people to "buddy up" with someone who has been around the block with this.

Just some thoughts on a Thursday morning... hope I don't sound harsh or anything - the fact is many, maybe most people here have been where you are and so they KNOW what that early stage is like. It's hard. Period. But it doesn't last forever.