so tired of this!

[gary]

Hi my name is Gary, march of o7 I thought that I had gotten something in my eye so went to GP and he referred me to an ophthalmologist,he saw nothing in my eye but thought he saw the starting of shingles on my forehead.He gave me some famvir for the viral infection and to come back in two weeks,then my eyes becme very gritty felling and I started blinking very excessively,he treated me for the next 11 months with no improvements.He said that I had dry eyes and he tried everything, He finally told that he did not know what else to do for me and suggested that I start seeing someone else.So I had him to send me to Vanderbilt in Nashville Tn. the dry eye specialist there has been treating me for another 11 months and hasn't done me any good yet. She prescribed Restasis which I took for about four months and I couldn't feel any differance,the last visit she wanted to try botox but I didn't want to try it cause one of the side effects is dry eyes,among other risks including blindness or even death! To this day I still don't know if my problem is quality or quantity,I asked her and she said its a little of both.She keeps saying that it is an age related thing,but I don't think so,prior to getting the shingles, wind,smoke, air conditioning,heat nor anything else bothered me,man has my life sure has changed! She has had me on prednisolone acetate drops for the herpes zoster in my eye for the first time for a month then went back she said that the zoster was gone but I could tell later that it was coming back went to see her again and she put me back on the prednisolone for a longer time ,the problem is it goes away but returns after awhile the last time I went which was about three weeks ago she said I would probably have to take them for a long time,years probably to get rid of the zoster ,I am wondering what the side effects of long term usuage is? I thought that I had it bad until I read some of the stories on here! Also I have not ever had any laser or will I ever! I guess that I just need a shoulder to lean on.I have a lot of questions that I will ask at a later time cause this is a lenghty story already!

Gary

[liz56]

Hi, Gary.

Getting the right diagnosis can take a lot of time, effort, and money. I hope that you can find some better answers soon.

I'd like to recommend Dr. Gary Foulks, who is in Louisville, KY. I see that you are in KY, so it might be feasible to make an appointment with him.

Here's a link to the thread that recommends him on this discussion board:

http://www.dryeyezone.com/talk/showthread.php?t=3588

http://www.louisvilleeye.org/foulks.html

You may want to try calling his office to set up an appointment: (502) 852-5466

Take care,
Liz

[gary]

Thanks liz
I have another appt with a different doctor the 21st of this month,maybe he will give me a better diagnosis of what the root of my problems is,I sure hope so! I have been to three opthamologists and one optometrist so far,the optometrists did say that my tbut was 5 secs ,which I don't know if that is really bad or not. Anyway Louisville is about 225miles from me,which I would gladly drive 2000 miles if I knew that someone could help me with this problem!

Gary

[Lucy]

Hi Gary-
Sorry you have to be with us here, but it sounds as though you're really having a rough time.

As I was reading your post, I was thinking about Dr. Foulks and low and behold that's what Liz suggested. He has been talked about so much on this forum lately. You're lucky to be so close to him. Good luck and keep us posted on how you're doing. Lucy

[gary]

Thanks lucy ,I may give Dr. Foulks a call if my next appt doesn't turn out very good.The only thing is that is a 450 mile round trip,and its kinda hard to drive that far when I am having one of my bad eye days.Thats what makes this so aggravating is,I try something new and I might have a good day and I think this is it,then whammy its back! This dr. that I am going to see the 21st is a retina specialists.The dr I am seeing now is in Nashville,which is a 300 mile round trip, she is a dry eye specialists,and there is no doubt that she is very intelligent,but its like she don't listen to me,my main complaint is she don't try to explain things to me and what she wants to try next and why.
I didn't even know that I have drains in both upper and lower until I found this site, there is a lot of good info on here and I am glad I found it! She put one in my right lower which is my worst eye,I can't tell any differance,I not really sure that it is still in there. anyway thanks !

Gary

[eva b]

Hi Gary
I'm far from being an expert, apart from having read and learned most of what I do know on this site...was intrigued by your story because my own troubles started with shingles, which was undiagnosed correctly at the time

I had spots on my forehead, which I didn't at all connect with the feeling of having something in my eye - just like you! Eventually, after about 4 or 5 different opthalmologists one said it looked like shingles - but the actual viral infection had gone, and I am now left with scarring on my cornea which has caused assymetrical astygmatism so I have to wear glasses all the time to correct it - an even then it's not perfect.

What I'm getting round to saying is that, in your place, I would question the long term use of steroid drops. The standard medication for herpes is acyclovir (which I was given - too late) and the prednisolone was given just for the inflammation - not a cure for the shingles as such. I was also given oral acyclovir when I thought it was coming back.

Prior to this incident I'd never had problems with my eyes, and am convinced that my dry eyes and MGD have been brought on or at the very least aggravated by the repeated hospital visits and the toxic drops they put in your eyes every time they're examined. At one time I was seeing specialists 2 or 3 times a week!!!

I've now become so hypersensitised that I'm not able to use any lubricating drops at all without having a bad reaction - only sterile saline solution.

Do you have similar problems?

All I do now is warm compresses, 3 times a day, and use goggles whenever I go outside, and often even indoors, to maintain the moisture.

Keep us updated ...I shall certainly be taking a personal interest in your progress!

best of luck
Eva

[gary]

Hi Eva
First off I was given Famvir for the shingles,which I have read that if given that in the first 72 hrs that it would greatly reduce the severity of the rash.

All that I have ever had was the tiny blisters bumps on my forehead of which I still have after almost two years and they still itch like crazy sometimes, but my docs say that they are old age spots! I didn't think that old age spots itched!

I still say that whatever that is on my forehead is the culprit for my dry eyes or like you said eva all the different drops they put in my eyes,and I don't really like them using me as a guinea pig.

you know try this come back in a month,try that come back,I think thats why its called practicing medicine!

Eva, I really don't have any bad reactions with the eye drops,I use them quite often on my bad days, on the good days maybe twice a day. When or if I get any foood things to report I surely will

Gary

[Lucy]

Odd mention of shingles from Gary and Eva! I cannot say that shingles caused or started my dry eye because lasik started it. BUT I was quite sick and really didn't know why and then I got shingles, which I got treatment for right away. I never felt better after that, although the shiingles were gone and didn't leave any long lasting effect.

About 6 months later, I was testing positive for Sjogrens. I do believe the shingles had some connection to my Sjogrens--as just in my body saying "ouch." I wasn't aware of having Sjogrens at the time of shingles. Lucy

[gary]

I went to the retina specialists today,and as I suspected he would say that my retinas looked good and he was not a dry eye specialists.

He was recommended to me by my daughter in law cause he had done her dad a good job,he had daibetes and was completely different from mine,but I learned a long time ago not to argue with a female! LOL!

He did tell me that I was getting a cataract in my right eye, probably from the extended use of the steroid drops,but I really don't have much of a choice. I asked him to refer me to dry eye specialists,so I have another appt on dec 2.

He did recommend that I get plugs ,I told him that I was supposed to have one in my right eye now, upon checking he said that there was not one in there.

He also checked the sensitivity of my eye with a paper towel my left checked out fine but the right didn't, he said that this is dangerous cause if I got something in the right eye I probably would realize it until a lot of damage was done.

He said that the shingles is most likely what cause my dry eyes and that there was no magic cure for it, I just had to find a good specialists and be patient and just try to manage it the best way possible.

well eva I know that this doesn't help you much either.

Gary

[Lucy]

He also checked the sensitivity of my eye with a paper towel my left checked out fine but the right didn't, he said that this is dangerous cause if I got something in the right eye I probably would realize it until a lot of damage was done.

Gary, can you clarify? The paper towel, I mean. Was this positively a paper towel, or could have it been a Schirmer's test? The Schirmer's test is where they put a strip of litmus paper in your lower lid and time the insertion and can measure the amount of tears you produce. Many say this isn't accurate and I have no reason to think it is (or isn't). I'm just trying to ascertain if this was paper towels. Lucy

[gary]

Hi lucy
This was not Schimiers test,I have had that done one time and know what that is cause they leave the paper strips in for five minutes,although I was never told what my result was.... he just had a regular paper towel twisted on the end and was touching my eyeball with it to see if the right eye was as sensitive as the left.

He said that was one of the characteristics of herpes zoster,but I would think that anything that caused scarring would desensitive the eye.I just don't know what to do.

I know the steroid drops are not good for me,but thats what both the docs said that it takes to get rid of it.

I have been on and off of the drops for over a year...take them for three or four months then be off for a couple months then the zoster returns..Now this doc says that I have a cataract beginning to show up in the right eye,stemming from the long term use of the steriods.

Then I will probably have to have surgery to take care of the cataract which will probably make my dry eye condition worst,sounds like a no win situation.

The only good thing that I can say about my eyes is that I had gotten a stomach virus about three days ago...

This forced me to stay in bed just about all one day and night, I think that the extra sleep and just lying around with my eyes closed seemed to help my eyes a lot!

wishing everyone a cure!
Gary

[eva b]

Gary, can you clarify? The paper towel, I mean. Was this positively a paper towel, or could have it been a Schirmer's test? The Schirmer's test is where they put a strip of litmus paper in your lower lid and time the insertion and can measure the amount of tears you produce. Many say this isn't accurate and I have no reason to think it is (or isn't). I'm just trying to ascertain if this was paper towels. Lucy

Lucy, I think what he means is a kind of sensitivity test they do - to see if you can feel things touch the cornea. I had a specialist twist a piece of tissue into a tiny little point which he then lightly touched to the surface of the eye to see if I could feel it (I could!) but sensation was reduced on the eye where I have the corneal scarring...although I could still feel something.

And yes, of course, as he says if you have no sensation whatsoever it could be dangerous because you wouldn't know you have a problem...

[NYer]

Gary,

I went to THE top retina specialist in the country recently. Hey, my retinas are in great shape. That was really good news. But you know what? He was clueless about dry eyes. That requires a corneal specialist.

Virtually everyone here has been to at least five different eye doctors...and since they're still here, obviously, they haven't found the help they need.
Dr. Foulks is one of the very few highly recommended doctors for dry eye in the country. Yes, it's a very big drive. But find a way to go there.

Good luck!

[gary]

Hi Nyer
yeah, I know that I do need to see a corneal specialists, we just don't have one in our town (Paducah,Ky) ...Louisville is a 250 mile one way trip,which is not bad if he could cure me in one trip,but you know and I know that isn't going to happen!

If he could ,he would be a multi-millionaire pretty quick! I have another appt dec 2, the retina specialists referred me to.. I've heard some good reports about him.

The only bad thing I've heard is that he is always in a hurry to get to the next patient,more money! if he doesn't work out ,There's supposed it be a real good corneal specialists about 90 miles from me,so I will probably try him next...
Thanks for all Yall's concern!
Gary

[Lucy]

This forced me to stay in bed just about all one day and night, I think that the extra sleep and just lying around with my eyes closed seemed to help my eyes a lot!

Several years ago there was an internet doc who told people that were dealing with painful dry eyes to plan a weekend just for this. He told them to wear a blindfold and keep their eyes moist via drops and rest the eyes for two days and nights. You'd have to take the blindfold (or mask) off for eating and other certain rituals.

I know his thinking was to give the eyes a chance to recover enough to make you feel better and then possibly you wouldn't be in extreme pain all the time. It didn't cure the dry eyes or the cause, but did help a bit.

We live in a fast world, driving, computers all day for some, bright lights etc and none of these is good for ailing eyes. The lack of sleep for Americans is well documented. I hope you feel better and rest those eyes all you can. lucy