26yo sudden onset complete lack of tear production. Desperate for help!

[jodywestaustralia]

Hello everyone,

First I need to say this site has already been amazingly useful for me. Reading these posts and knowing I'm not alone has been amazingly helpful!

I thought I'd give you guys the low down on my Dry Eye story and see if anyone has any ideas or tips to support me. I would really appreciate it!

On April 11th I went to an arena rock concert. I was sitting up the back but I still found the lights too bright and it hurt my eyes a bit, so I had my eyes closed for half the concert. When I got home I couldn't look at light, and went straight to bed.

By the next morning the pain in my eyes was agonising and I couldn't look at light at all. I went to my local ED and they diagnosed me with photo-keratitis, gave me codiene and antibiotic eye drops and said it should get better in 48 hours.

By the next afternoon the pain was agonising and the drops felt like acid in my eye. I had developed a headache as well, so we went to a second, bigger hospital that we knew had an opthamology department. I was assesed by an opthamologist who said I had a tiny corneal abrasion on one eye, but otherwise they were fine. They kept me in hospital for 4 nights and I had a lumbar puncture done (they thought it was meningitis), CT scan, heaps of blood tests and a contrast MRI. All the while the pain in my eyes wasn't getting any better. I couldn't even tolerate saline wash or Poly Tears, it just felt like acid. I just lay there with a blindfold on or sunglasses if I had to look at something. They had me on paracetomol, codiene and oxycodin.

The headaches were getting worse and worse, to the point where sometimes I couldn't even put my head on the pillow or touch it, it was too painful. I was crying so much from the pain I could barely breathe. It was agonising. During one of these intense pain attacks, they told me that it was all probably just an atypical migraine and there was nothing medically wrong with me, so they were going to kick me out that night. I was going to have a referal to see a neurologist as an outpatient, but that would probably take 3-12 months. Basically stay on the heavy pain drugs and it will go away. Its probably just stress!

I went home for 2 nights, thankfully my mum came and moved in for a while to look after me. I couldn't look at light, had crippling headaches and nausea and was very light headed. Things weren't getting better so I admitted myself to a large private hospital Emergency Department.

They immediatly called a neurologist who said to get me off the medication I was on, because if it was an atypical migraine, paracetomol, codeine and opiates can make it much worse and turn it into a chronic condition! I was there a couple of nights and they were convinced it was all just a migraine and the neurologist gave me new migraine specific drugs to take home. I saw another opthamologist but he literally looked at me for 3 minutes, didn't do an eye examination, just agreed it was a neuro issue and shoved me out the door with a $150 bill.

Two weeks later, I had gone through crazy side effects on the migraine medications and my stomach was really bad. So I stopped all the medications and the migraine disapeared! Looks like it was all just my body reacting to badly chosen drugs. Unfortunatley the eyes continued. I saw 3 more General Practitioners and they literally said "I don't know" and sent me home. One thankfully gave me an optho referal!

So at 4 weeks from initial onset I saw a third opthamologist, who immediatley did a schrimers test which I only wet 1mm. So he was amazed no one else had picked it up, its all dry eye! Did blood tests for Rheumatoid Arthrities, Sjorgrens and some other auto immune diseases. They show nothing (although I am still suspicious of rheumatoid as I have worsening joint pain that started years ago). I tried 6 different eye meds that week, genteal (which glued my eyelids shut), celluvisc, systane ultra, systane restore, thera tears, reclens eye bath and coconut oil around the eyes. Also Advance Optive, which seemed to be the best, giving me maybe 5% releif. I've also been taking 10ml of fish oil a day and having a fairly close to paleo diet (which I had been working towards before all this happened anyway). Also taking tumeric, glutamine and other natural herbs.

Went again last week and he redid the Schrimers test. The paper was completley dry and stuck to my eyelid, they had to rip it off. Optho says my tear ducts have stopped working completley and I just have to learn to manage it for life. No Bleph or any other issues. Just no tears.

I'm now on 1% steroid ointment at night which seems to help a little bit. Using Bion Tears during the day. Pushing through the pain and managing to drive a little bit, but in a lot of pain. I'm feeling quite depressed and anxious as well. The thought of living with this forever is terrifying for me.

I'm seeing the optho again on the 28th, he says the next step is plugs.

So its now been 6 and a half weeks off work, which I ran out of sick leave very quickly. So we are under severe financial stress. My job is a sales rep in the pet food industry, so I drive up to 3.5 hours a day visiting brightly lit and air-conditioned retail stores. I am the only staff member on this side of the country, so no one can cover for me. I either need to go back to work ASAP or quit and find a more appropriate job.

I love my job, but its definitley not Dry eye friendly. Has anyone got any tips on making driving easier? In Perth here it is very dry. hot weather. Gets to 43C in Summer, so Aircon is a must.


Sorry for the long post guys. Has anyone got any help?

Thanks a million

Jo

[wagnermid]

Hi Jo,

Sorry to hear you are having such a difficult time. I am just replying as I am a fellow Aussie, I am by no means an expert. My son has severe dry eye and recurrent corneal erosions.

I just wondered if you had tried moisture retaining glasses. I get my him Wiley X's here in Sydney and they seem to really help him. The sunglasses do not look too unusual, the clear ones are not so good looking but comfort is more important, He has prescription lenses. There is a distributer in NSW and they have shops that stock them in WA : http://www.wileyx.com.au/storeLocator.php.

We use a humidifier in his bedroom at night,his current one is excellent it is a Rowenta (brand) which we got from Harvey Norman and you can set the humidity level, we have kept it on 55% over summer and kept fan use to a minimum, although there are nights where you can't avoid it.

I hope you get some relief soon.

[DryInDenver]

Jo,

Regarding driving, I've got a trick I use that helps. If you tear up when your emotional (ie you have the ability to produce tears, you just aren't for some reason) I think it might help you too. You'll probably want to gag when you read it. It sounds worse than it is, particularly to someone who has never suffered dry eye, but I find it to be incredibly helpful. Here's the trick: I gag myself. With a little gag, I can get my eyes to tear up on command. Obviously not a perfect solution and only gives temporary relief, but it has given me back the freedom to drive safely for extended distances (the most I've done so far is about 2 hours but could do more if I had to).

Basically I stumbled upon this idea when I choked on a glass of water. I was coughing my lungs out and my eyes filled with tears. I was hacking so hard that I couldn't talk and could barely breathe. And all I thought to myself was "this is wonderful! My eyes feel great!" . I have lasik-induced dry eye, so the working theory is that the nerves in my eye aren't sending the signal to my brain that they are dry and need more tears (however, they are great at sending the pain signals - apparently different nerves). So then I tried to think of other things that I could do to cause some natural tears to form. Here are some of the other things that maybe worked a bit but I don't keep using:

-Super sour candy (atomic warheads)
-Super spicy food
-plucking nose hairs

The food is tough to keep around, and the sour acid on the candy is hard on the tongue. Plucking nose hairs is just painful. But with gagging, I don't have to carry anything with me and it's easy to do while keeping an eye on the road. I've refined the technique to the point that I don't have to do a full on gag reflex to get some benefit. I can do it with out opening my mouth or sticking anything in my throat and it's not noticed by people if they aren't looking directly at me.

The downside is that I sometimes eventually develop a mild stomach ache or headache if I keep doing this for an extended period of time. Also, I'm sure someday when I'm not feeling so hot I'll accidently puke in my lap. But hey... I bet my eyes would be watering!

Beyond that, the anxiety you are feeling is normal. Just do your best to keep on top of it and don't hesitate to seek help if you start getting depressed. The mental aspect of this condition is over half the battle. Just keep trying things, and seeing doctors. You might be able to find the names of good ones or get recommendations on this site. Over time you will learn what helps and what's just another waste of money. You could be one lucky ones who figures out a cure and quits visiting this site. But, know this. You WILL learn to manage this disease and YOU CAN live a wonderful life in spite of it. You will also get to know it over time. Early on, when pain escalates a little bit, anxiety escalates a lot because you don't know if you are getting worse or if it will last for ever. But you will learn that a flare up is just a flare up, and you'll figure out a routine that calms things down. And putting drops in for me is a habit now and I sometimes do it without even thinking about it. This helps me to stay in front of the dryness a little bit which is very helpful in avoiding flare ups. It's kind of like an endurance athlete who is supposed to drink water and eat food BEFORE they get thirsty or hungry because, by then it's too late. One problem with dry eye is that when the eye gets dry, it gets inflamed and when it gets inflamed it doesn't hold a tear as well (the tear breaks up faster) and so the eyes get more dry. It can be a vicious cycle.

This site is a great place for support and has been my best source for information (better than my multiple doctors). But also be aware that it can add to your anxiety because the people who get better quit posting. Sometimes it helps to take a break from it here and there.

For me the WileyX glasses help and I wear them all the time. I also have to use drops every 5 to 20 minutes (Refresh Plus work the best for me). This allows me to work 8-10 hours a day on the computer in a VERY DRY environment. My office varies from 5%-15% humidity with constant air circulation. I think plugs are probably a good idea because they are easy to take out if the don't help or make things worse so you might as well try them. It only took my doc a few minutes to put them in.

For some relief try both a hot compress and a cold compress. Both help me. If part of your problem is from your oil glands, the hot will help the most (and cold might make it worse so just follow up with a hot one). Wet towels cool off too fast so try the microwavable ones (I use Thermalon Dry Eye Compress available on amazon.com and the Dry Eye Store on this site has a rice baggy that I think works well). Don't burn your eyes, but you want to warm those oils up to 104-105 degrees (according to my doc). So I put mine in the microwave for 20 seconds and then wear it for 2-3 minutes and I feel great when I take it off. When my eyes are just plain sore, I also get relief from cold. At work I'll just grab a cold can of soda out of the fridge and hold it against my eye for 2-3 minutes (slowly moving it around to get different sides of the eye). It feels calming while I'm doing it and when I finally open my eye it's filled with tears and they run down my cheek.

Hang in there. Try to take some time to focus on some things you really enjoy. You will read it all over this site, be patient. Things will improve.

[DryInDenver]

Also, if you haven't already, you might want to take a look at this book: The Dry Eye Remedy: The Complete Guide to Restoring the Health and Beauty of Your Eyes by Robert Latkany (Apr 3, 2007)

[dryeyedave]

do in this order:

Glasses with a seal like wiley x or 7 eye or cheap ones from a motor cycle shop. Wear these all the time.
Get plugs in all of your ducts
start RESTASIS (it can take from 4 to 7 months to see any difference.)

Do this at your own risk.

vitamin e oil in your eyes at night. If it does not sting to badly you might try it at least twice per day as well.
Rose hip oil does not sting and I use it as well at night only.

Find a good unpreserved drop that works best for you.
What I like best
Oasis tears plus
Celluvisc
tears natural/bion tears
refresh classic
freshkote.

lubricating drops may not make your eyes feel great but they do protect your eyes from further damage so you need to use them.

The only supplement that I can say works is:
sea buckthorn oil

I also take:
flax, fish oils, black current oil, 2000mg vitamin C, Cod liver oil, coconut oil, and a good general vitamin.

Be patient it might take a year to improve. I am a year and four months from my SJS and my dry eye is vastly improved and continues to improve even a year later.

[No tears in ATL]

Jodywest:

My method is more basic on the supplement side. After trying goodness-knows how many supplements/strategies, I've narrowed it down:

- Seabuckthorn oil (1 g, or according to weight)
- Krill oil (1 g, or according to weight)
- 20 mg doxycycline
- Hot showers and/or 10 minute warm damp washcloth compresses twice daily. Massage the lids but do not be overly aggressive. Too vigorous irritates the lids.
- I can't do drops, but you may be different. I have very bad reactions to them. I'm not convinced that they help and I think the upset certain people's tear films.
- If you consider plugs, try just the top ducts only as an experiment (temporary plugs to start). If you are of the type that has "toxic tears" you could end up with backup inflammation with all four plugged (If you want to discuss this more, PM me).
- Avoid too much wheat and omega 6 (I am not gluten intolerant but I sure don't do wheat every day or at every meal); as for french fries and fried stuff...not good. Avoid diets that are too low in carbs. This could leave you even drier (see "The Perfect Health Diet").
- If you are vegetarian try a liquid B supplement. Vegetarian diet is good due to increased good bacteria in intestines.
- Cannot emphasize warmth with humidity enough. The cold this year that hit us down South in the U.S. almost killed me. I am talking about as low as 11 percent humidity. Get a humidistat and keep it at home and in office with the highest capacity humidifier you can find.
- Moisture chamber glasses, as others have suggested, as often as allowed.
- Keep stress to a minimum.
- Keep screens to a minimum. Audiobooks are WONDERFUL! And you can learn just as much from listening to a movie as watching it.

That's all I have. PM me if you have questions.

-No tears in ATL