The World Shrinks

[Nightbird]

Hi All,

I’m new here and I apologize for the darkness of my first post, but I really need to express this and cannot do so to those around me. I’ve been a lurker on this site for a while. I think some of you might understand.

I used to love to travel. I was adept at finding ways to go to exotic places for relatively little money. I would go off the beaten path, have adventures and take tons of photos. The fun didn’t end when the trip did. When I got home I would spend hours Photoshopping my pictures. It was my way of reliving the trip. I would frame many of them, and now they grace the walls of my home. But when the dry eye problems began, the long plane trips, the hours spent online planning, the long sightseeing excursions outdoors in all weather and the hours with Photoshop became impossible. The thing had taken two of my greatest pleasures.

For a time I could still manage excursions closer to home. But soon long drives, and being outdoors for even short periods became too difficult. My world got smaller again. I also loved my job. Well, the 45-minute commute by car, the long hours in front of a computer, the traveling—you get the picture. I had to give that up too.

Now just leaving the house is a struggle. Dinners out, taking in a movie, taking a photography class, shopping trips, long lunches with friends, all those pleasures I used to take for granted are either gone or just something I have to try to find a way to get through somehow. Even a simple trip to the grocery store is an ordeal. I am housebound most of the time now. I have to force myself to get out of bed in the morning and face another miserable, lonely day. I don’t want to stop dreaming. In dreams my eyes are always still normal and I’m out enjoying life again.

I’ve seen doctors. They are creatures of power. When they cannot help it reminds them that they are only human and they want to shut you out.

Meanwhile there is a full bottle of Vicodin ES in the medicine cabinet that I got after oral surgery and never took. I know I should tip it over the toilet and flush. I have it poised. Then I think, what if one day it is just too much? It would go down well with a bottle of 20-year-old Scotch.

I wasn’t always a night bird. I used to love the sunshine. Now the Sun is blinding.

Thank you for reading my story.

The Nightbird

[Jade]

Thanks for telling your story. Mine is similar, just a different version, like so many people on here.
Your description of eye doctors is what I've experienced too. Well put.

[NotADryEye]

Yes, all those doctors. They just don't know how to diagnose and treat what we have. I think one of the reasons is that when we see a doctor who doesn't help us we don't go back. But the doctor thinks they have helped because we don't go back. (I recently heard exactly this explanation for why patients do not return to a pain doctor. It's a flip of the coin really, until someone does a study).

Where are you located? Let us know. Maybe someone here can direct you to a better doctor in your area.

[Joseph]

I will pray for you... Throw the pills away and never let yourself go there.. Life can really suck at times but think of my brother who said "I don't give a **** about any of my problems I am going to enjoy my life the best that I can" He told me that 3 months before he died after long fought battle with brain cancer...

[Nightbird]

Thank you to both of you for responding, and also to those who sent private messages. I will respond to those as well, I have to take the computer in small doses however.

I was in a very black mood when I last posted, sorry. I meant to post again above but I suppose this is as good a place as any to tell you about myself. I’m 41, female. Before this my health was excellent. I was spoiled I guess. I eat a healthy diet, don’t smoke, get plenty of exercise; don’t drink except for the occasional glass of wine.

I am near NYC, where you would think it would be easy to find a doctor for anything. I started with local doctors. First the ophthalmologist I’ve been seeing for years, then someone who claims to be a ‘dry eye specialist’. Both said the problem was with the oil glands. They prescribed warm compresses, lid scrubs, massage, Azasite, Restasis, Doxycycline and steroid drops, none of which has helped much if at all.

I also sought out two ‘dry eye specialists’ in Manhattan, one at Weill-Cornell and one at NYU. The doctor at Weill-Cornell was dismissive, almost rude. He didn’t think my problem was all that bad. My corneas are healthy, he said, and why don’t I just use more drops? The one at NYU didn’t even think my oil glands looked bad. He told me I have big eyes so more surface area causing rapid evaporation. He also said I was overly focused on my eyes. Excuse me, but will someone kindly explain to me how you can NOT be focused on your eyes when they feel as though they are on fire most of the time?

I’ve also seen a rheumatologist who did a full autoimmune panel, an allergist who ran his whole gamut of tests, and an endocrinologist. All negatives. No allergies, normal ANA, normal thyroid function. In short, no explanation for what is wrong with my eyes. I've even seen a shrink.

I would greatly appreciate any suggestions anyone has, including recommendations of doctors further from home. Thank you again for reading all of this.

[Joseph]

I have found that oculoplastic doctors are much more knowledgeable about diseases of the eyelids, eye socket and tear system. Ophthalmologist are usually caught up with the cornea and retina and that is were they look for problems. (The thing is that most of OUR problems stem from the eyelids). Oculoplastic surgeons are Ophtalmologist M.D.'s with two additional years of studying eyelid diseases and surrounding tissue of the eyes.

[Joseph]

One more thing to add. What has helped me more then ANY eye doctor has been a shrink. They atleast help you through these tough times and try to give you a different way of thinking about it unlike eye doctors who say that you are fine and I will see you in six months..

[Guest]

"I don't give a **** about any of my problems I am going to enjoy my life the best that I can"

I'd like to frame that and put it on my wall

And Nightbird, so sorry to hear that you're having such a rough time... it sucks beyond belief, I know!!!

But you know what, don't quit - don't give up trying to get back to doing the things you love. This is a giant pain in the A$$, but there is hope. Personally, I've come a loooooong way since my eyes went totally to hell in 2009 when, like you, using Photoshop would be impossible, and travel to anything less than a 1st world country would be a very bad idea - but now, life is good again - good enough that we're leaving town (ie. me, hubby and 2 young kids) next summer to explore SE Asia for a year or more (and yes, I'll be lugging around all my drops, Wiley X's to protect my eyes, finding out if I can bring a small carry-on sized freezer on the freaking plane for my serum drops, and having the thought in the back of my mind that if anything goes freaky wrong out there with my eyes I'll get myself on a plane back home asap... would be just my luck to have that happen in Cambodia when I'm about to finally see Angkor Wat...)

So hang tight to your dreams, don't give up.. things are a mess right now, but in no way does that mean it'll be like this forever... it's just a puzzle to be solved...

Have you read this thread yet? http://www.dryeyezone.com/talk/showt...ith-myself-%28 I wrote a long reply (2nd post) there, and much of it is stuff I'd write to you right now - but to save my eyes some computer irritation, I figured I'd just link to it

A few more quick things to mention before I log off and go to sleep...

1) DEWS report - skip to chapter on management of dry eyes - gold standard info in here that is referenced in the major treatment guidelines - no-one will care more than you do about fixing your eyes, it's not hard to learn about possible treatments and causes, so you might as well give it a go
http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

2) consider the possibility that allergies are causing some of your issues - in my case, I've developed a sensitivity to wheat - as long as I don't eat any, my eyes do much better - might be worth experimenting with cutting out the most common food allergens from your diet for 2-4 weeks and seeing if you notice a difference - extreme, and hard to do, I know... but worth it's weight in gold if it yields any answers for you - and if nothing changes on such a diet, so be it... at least now you'll know, right?

3) consider the possibility of corneal neuropathic pain - Dr. Perry Rosenthal is a wonderful doctor who has taken an interest in this stuff over the years - here is his website, with some interesting reading for you: http://www.bostoneyepain.org/category/patients-corner/

[Nightbird]

I will pray for you... Throw the pills away and never let yourself go there.. Life can really suck at times but think of my brother who said "I don't give a **** about any of my problems I am going to enjoy my life the best that I can" He told me that 3 months before he died after long fought battle with brain cancer...

Joseph,
Thank you! You are right of course, and I think the support I'm getting from this site is giving me the strength to ditch those pills. My deepest sympathy for your loss. I almost lost my brother, my big brother, a few years ago. He had viral encephalitis and at one point could not speak or move. I was terrified. He was incredibly fortunate to recover. You made me think about that and realize that I do have a lot to be grateful for. Thank you also for the rest of your advice. I will look into occuloplastic doctors. I already have a shrink and you're right, it helps to talk.

[Nightbird]

life is good again - good enough that we're leaving town (ie. me, hubby and 2 young kids) next summer to explore SE Asia for a year or more (and yes, I'll be lugging around all my drops, Wiley X's to protect my eyes, finding out if I can bring a small carry-on sized freezer on the freaking plane for my serum drops, and having the thought in the back of my mind that if anything goes freaky wrong out there with my eyes I'll get myself on a plane back home asap... would be just my luck to have that happen in Cambodia when I'm about to finally see Angkor Wat...)

SAAG, that is AWESOME! I hope you have the time of your life. I would fill the hard drive on my laptop with pictures on a trip like that, I might need two. Thank you so much for all the great advice. I read through the thread you directed me to. Two quick questions for now. I'll probably have more if you don't mind, I'm still absorbing. How do serum tears work and how do you go about getting them? I'm also very interested in the Wiley's. If I can get out of this d#$@ house half my problems would be solved. Right now I walk out the door and when the cold air hits my eyes I want to run back inside. So it they work as well for me as they do for you it would be a godsend. I have a small narrow face, which ones do you think would be best? Oops, guess that was more than two questions!
Thanks again to everyone! Also any more leads on doctors greatly appreciated.

[NotADryEye]

I see a great doctor in Florida, if you ever head this way.

[Guest]

I would fill the hard drive on my laptop with pictures on a trip like that, I might need two.

hehe... I know what you mean - are bringing 2 laptops (one each, for me and hubby), plus 2 portable hard-drives holding 1 TB each.

I also have a small narrow face - I wear the Wiley X AirRage model - they recently changed the foam eyecup, and the new foam eyecup doesn't seal quite as well as the old one - BUT, apparently they are bringing back the old better sealing foam eyecup in the new year (Jan or Feb. last I heard). I'd definitely give those a try! I wear the sunglasses version to work (even though it doesn't go at all with the clothes I wear, and I work with the public) - I also wear them shopping, and pretty much everywhere outside of my house (indoors and out).

I have a pair with the clear lenses (hideous-looking if you ask me hehe), which I wear when home with my family. Lucky them!

re: serum drops - I don't think anyone knows 100% for sure how they work, but, it's likely at least partially helpful because they contain some anti-inflammatory substances that help your ocular surface. How you get them seems to be different depending on where you live, but if you ask around to various corneal specialists, someone is bound to know. (also, maybe edit your profile to put what city you are in - might draw the attention of someone on the forums who lives around you and can help with the whole where-to-get-them thing)

In my city, there is only 1 lab (and 1 pharmacy) that makes them. My dr. writes me an rx, I go to the lab and get my blood drawn - they centrifuge my blood, and send it down to the pharmacy - the pharmacy draws off the serum and puts it into eyedrop bottles for me. I pay $25 each time to the lab for the blood draw, and about $75 to the pharmacy each time (I go every 3 months)

[dryeyedave]

hehe... I know what you mean - are bringing 2 laptops (one each, for me and hubby), plus 2 portable hard-drives holding 1 TB each.

I also have a small narrow face - I wear the Wiley X AirRage model - they recently changed the foam eyecup, and the new foam eyecup doesn't seal quite as well as the old one - BUT, apparently they are bringing back the old better sealing foam eyecup in the new year (Jan or Feb. last I heard). I'd definitely give those a try! I wear the sunglasses version to work (even though it doesn't go at all with the clothes I wear, and I work with the public) - I also wear them shopping, and pretty much everywhere outside of my house (indoors and out).

I have a pair with the clear lenses (hideous-looking if you ask me hehe), which I wear when home with my family. Lucky them!

re: serum drops - I don't think anyone knows 100% for sure how they work, but, it's likely at least partially helpful because they contain some anti-inflammatory substances that help your ocular surface. How you get them seems to be different depending on where you live, but if you ask around to various corneal specialists, someone is bound to know. (also, maybe edit your profile to put what city you are in - might draw the attention of someone on the forums who lives around you and can help with the whole where-to-get-them thing)

In my city, there is only 1 lab (and 1 pharmacy) that makes them. My dr. writes me an rx, I go to the lab and get my blood drawn - they centrifuge my blood, and send it down to the pharmacy - the pharmacy draws off the serum and puts it into eyedrop bottles for me. I pay $25 each time to the lab for the blood draw, and about $75 to the pharmacy each time (I go every 3 months)

SAAG: Have you tried on the Wiley X Gravity? I have a narrow face and they fit really well but have a larger lens area than the airrage(or so it seems to me) that does not restrict my vision. Despite having a nice big lens area they do not look as heavy and goggly as some because they fit closer to your eyes. I really like them.

For everyone else you can usually find a full selection of Wiley X glasses at any military or police supply store. You can also find them at gun stores and military PX and BX.

Nightbird: I am not trying to be uncharitable or evil in fact it is out of love that I say this: Killing yourself is a very selfish and evil thing to even contemplate. I lost a very dear friend to suicide and it laid waste to his family and left those who loved him very much, me included, feeling like we were all to blame in some way for not helping him more. His situation was not as dire as he thought yet he just could not see past his mental suffering to think things out clearly.

Now that I have said that, if you will pay close attention you will see that most people with dry eye though not cured can get most of their function and life back with treatment and it does not require exotic locations and high profile "specialists" to do it. You can craft your own regime by combining advice from this site with the advice of a compassionate doc. If it is determined that you do not have some strange ocular surface condition that will blind you then I would find an optometrist who is trained in ocular surface disease management that will work with you to try different therapies. They can write scripts just like any MD. NO one I don't care what they claim has the magic bullet for treating this condition so its all hit and miss. Here is what I would try right now to work to restoring your health:

1. like SAAG said right now get a pair of sealed glasses to wear. You probably can to go a local motorcycle shop and get a cheap pair right now until you find a good pair of high quality glasses(as far as I am concerned only Wiley x or 7eye should be considered).
2. start RESTASIS asap and stick with it for at least seven to ten months before giving up. Despite what you read it is the best existing therapy at giving you are real chance at doing better.
3. go to you local pharmacy and try cellusvic, tears natural/bion tears, or refresh classic and try all three to see which is best or which works best in combination.
4. order FreshKote and try that as well
5. for night time get your doc to write you a script for MCT oil which will have to be compounded. FreshKote is also excellent at night.
6. if in seven months of religious adherence to the above treatment regime you are not better get fitted for sclerals.
7. I have not tried serum drops because my MD claims they do not work but I do not really believe him. I will just make them on my own if and when I decide to try them. I have an MD friend who can draw the blood and will help me with it.
8. plugs work and they are not the horror story you hear about.
9. It will not hurt to try a combination of fish oil, flax oil and sea buckthorn oil all of which can be obtained at the many health food stores. The sea buckthorn oil in my inexact test seems to improve my condition. I have gone on and off of these oils and so far when I am on them I am better.

You can PM me and I will talk to you as much as you need. I will pray for you.

[NotADryEye]

NO one I don't care what they claim has the magic bullet for treating this condition so its all hit and miss.

Some of the reasons it is so "hit and miss" IMO, what to do about each... and why you shouldn't give up.

1) numerous comorbidities, all different, but all that give the same sensation (pain or discomfort) all of which need to be addressed in order for there to be relief.
What to do? Keep at it until you find and address every single condition that is causing you pain and discomfort.

2) inexperienced diagnosticians coupled with generally accepted ineffective treatments
What to do? Keep looking until you find a doctor who is good at diagnosis and is experienced or willing to learn how to treat you. A compassionate doctor also helps.

3) Your eyes may be very sensitive to anything that you put in them or even on your eye lids, lashes, etc.
What to do? Best to avoid/eliminate anything that causes pain or discomfort unless it is for a short time and for a very specific or acute reason. But don't use anything that causes problems for a chronic condition. You can make things worse and you won't feel better.

4) You might try something that seems like it doesn't help and so you want to give up
What to do? Make sure it's not causing harm. Then, think and feel very carefully. Did this treatment give you any relief at all? Even 5 percent? Well, 5 percent is better then nothing. And if you do 10 things, all of which give you 5 percent relief, that's 50 percent better. Remember there are likely numerous co-morbidities.


[QUOTE=dryeyedave;88066] 2. start RESTASIS asap and stick with it for at least seven to ten months before giving up. Despite what you read it is the best existing therapy at giving you are real chance at doing better. [QUOTE]

Although Restasis is advertised heavily and some people find tremendous relief using it, e.g. dryeyedave, keep in mind that in well controlled clinical studies it was shown to improve Schirmer's scores in only 15% of the population. This is from the FDA drug safety website. (http://www.fda.gov/safety/medwatch/s.../ucm334498.htm)

You can find the specific reference here:

http://www.accessdata.fda.gov/drugsa...790s020lbl.pdf

CLINICAL STUDIES
Four multicenter, randomized, adequate and well-controlled clinical studies were performed in approximately 1,200 patients with moderate to severe keratoconjunctivitis sicca. RESTASIS® demonstrated statistically significant increases in Schirmer wetting of 10 mm versus vehicle at six months in patients whose tear production was presumed to be suppressed due to ocular inflammation. This effect was seen in approximately 15% of RESTASIS® ophthalmic emulsion-treated patients versus approximately 5% of vehicle-treated patients. Increased tear production was not seen in patients currently taking topical anti-inflammatory drugs or using punctal plugs.
No increase in bacterial or fungal ocular infections was reported following administration of RESTASIS® .

[MLE]

Hi night bird- another thing to consider- you are my age, early 40s, which makes us perimenopausal. You may want to get a complete hormone profile done by your OB/GYN. The most important aspect of this is testosterone, not estrogen, which drops as we age and is implicated as one of the causes of dry eyes. Make sure they are thorough and get a complete panel. Supplementation helps some people- not everyone- but some people.
MLE