Hi Folks. New Guy Here. Dry Eye and Severe Light Sensitivity

[TurnDowntheSun]

Hi everyone,

Just found this site and glad I did. I was diagnosed with dry eye about a month ago. Last April I suddenly developed extreme light sensitivity. The sun is the worst. I can't take it at all. Boy will that change your life -- now I'm basically a shut-in until dusk. At least then I can get out of the house a little, but I can't go anywhere during the day if it's sunny. And I live in sunny California. I must be the only one here who is always hoping it rains.

I've been feeling pretty isolated lately, stuck in the house all day long, so it's nice to meet some people who understand. And I hope to learn alot more about this condition. Until April, I never had any problems with my eyes. I guess that's history now. But I just started looking around the site and it sounds like there is definitely some hope, so that's encouraging.

Oh, and I also have a TMJ problem. Not sure if it's related to the dry eyes, but I'm wondering if it could be.

Please feel free to drop me a line if you feel like chatting.

[Rebecca Petris]

Hi there and welcome...

Sounds like you need to get into some 7Eye or WileyX glasses pronto as a step towards getting your life back from this photophobia. What you would want are either 7Eye "Airshield" series or WileyX "Climate Control" series glasses with the removable foam gasket. Usually these can be found at a Harley Davidson dealership. The foam gasket eliminates entry of any peripheral light, and if you choose the darkest lens they have (which is also the cheapest... should be around $84 for Wiley and $99 for 7Eye) I'm thinking you would be able to get outside again. Check out pages 4-9 of the dry eye shop catalog to see the kind of thing I'm talking about, but buy local rather than online if you can find a dealer open after dark because you'll need the best possible fit so as to not have gaps that light can get in through.

Do you have a good doctor?

[TurnDowntheSun]

Hi Rebecca,

Thanks for all the info on the glasses and where to get them. I will definitely check them out; there is a Harley Davidson store not too far from here. I just hope they work. When I do HAVE to go out during the day, (like to the doctor) I wear my prescription sunglasses and then a big pair of wraparound sunglasses over them -- and that hasn't really been good enough. My wife has to drive me to doctors appointments during the day. I keep thinking there has to be an answer to this problem. It's just one eye, my left eye, that is really the most sensitive.

As for whether or not I have a good doctor, I don't know. I was misdiagnosed for months. The first eye doctor told me I had trigeminal neuralgia; they suggested I see a neurologist, who said I didn't have any neurological problems. And then I was told it was an ocular migraine. I even had an MRI done of my brain, which turned out to be normal. I was also told that my TMJ problems were causing this, but I've had TMJ for decades and eye problems have never been a symptom. And after app'ts with several reputable TMJ dentists, they all confirmed that photophobia is not a symptom of TMJ.

Finally a neuro-ophthalmologist diagnosed the dry eye, and prescribed preservative-free artificial tears, every hour, 8 to 10 times a day. He also suggested Ocuvite vitamins and Omega 3 capsules and eating more green vegetables. I've doing all that, and I've been faithfully doing the drops for the last month, but so far I don't see any change. Last week I had a follow-up app't with a regular ophthalmologist and he said I had a few options: stick with the drops for awhile longer, or try the temporary plugs, or try Restasis. Has anyone had success with the plugs for light sensitivity? Or has Restasis helped with light sensitivity? Do you (or anyone) know any good "dry eye" docs in Northern California? I wouldn't mind getting another opinion, or seeing a specialist. Anywhere from Sacramento to San Francisco, I guess, would be good.

Thanks! This is a great site!
Rick

[pecan121]

light sensitivity

I am light sensitive, particularly to fluorescent light. The moisture chamber goggles are a big help. I have the dark, the clear, and some tinted ones as well. I use the clear for tv and the tinted ones for computer.

A word of warning about using drops each hour. One eye doctor told me to do that and the first day went great. The evening of the second day I ran into trouble with red, burning eyes. I should have just gone to bed, but instead I used more drops. Someone on this board once said that frequently using tears can wash out the good stuff in our eyes. I guess that happened to me. I'll never to that again.

I have cauterized ducts, hybrid contacts, and use Restasis 4 times a day. I am managing quite well, but nothing was a quick fix. The only time the light sensitivity goes away is when I am using a steroid. My problem stems from an autoimmune disease. If your problem is "just" dry eye, you may do better.

[Connected Visions]

TurnDowntheSun,

I noticed that you are experiencing dry eye symptoms, including extreme light sensitivity that is causing you to stay indoors until it is dark out. Rebecca makes some important suggestions for you, and I also wanted to introduce you to PROSE treatment in case you are interested in exploring other options at some point. Prosthetic replacement of the ocular surface ecosystem (PROSE) is a pioneering medical treatment for complex corneal disease that was developed by Boston Foundation for Sight.

Many individuals with dry eye also report experiencing extreme light sensitivity, as well as pain or discomfort in or around the eyes, difficulty driving at night, and difficulty reading or performing other hobbies that require seeing up close. For patients with dry eye who were treated with PROSE, 76% reported significant success.

If you are interested in learning more, here are some relevant links:

• Overview of BFS and PROSE Treatment
• PROSE Treatment for dry eye

Please let me know if you have any questions or need support in gathering further information.

Wishing you well,


Janice M. Epstein
Online Community Advocate
Boston Foundation for Sight
Connected Visions

[TurnDowntheSun]

Thanks for the info, Janice. I'm still in the early stages of learning about dry eye and photophobia, and doing the eyedrops is really the only treatment I've tried so far. (I've also recently started Omega 3 fish oil and Lutein.) So far no improvement in the light sensitivity, which is my biggest concern. I'm also not sure I'd even be a candidate for PROSE; after extensive testing at a major medical center here, and after seeing a neuro-ophthalmologist and an ophthalmologist, they tell me that there isn't any damage to my cornea (or eye) at all. So I would think that that means I don't have a "complex corneal disease." Just dry eye, although I'm learning that "dry eye" can have many causes. But PROSE is definitely something I will research and keep on the "back burner," should it come to that. Also, the dry eye and the light sensitivity is in just one eye -- my left eye. The right eye feels fine. It's hard to know what to do. But at this point, I'm thinking my next step would be getting a second opinion from a doctor who specializes a little more in dry eye.

Thanks again for the info!
Rick

[CanadaMo]

turn the sun down. if only we could. i have severe light sensitivity in my left eye since radiation treatments in 2008. i wear my wiley-x or 7-eye sunglasses nearly all the time, and a hat if i go outside. the sun causes a lot of pain. I have found that the only thing that helps me is to put an eye-patch over the entire eye to block all light. any other ideas?

[TurnDowntheSun]

Hi CanadaMo, Sorry to hear about your situation. Yes, if only we could turn the sun down. I can go outside right around dusk and when it's dark out. Otherwise, like you, the rays of the sun are like a knife in my left eye. I just ordered some Wiley-X sunglasses and they should be ready soon. I don't know how much they will help but I figure it can't hurt to have them. As for any other ideas... I just saw yet another ophthalmologist and she didn't think my dry eye was "all that bad." She thinks I might have a neuropathic pain problem; she thinks there's something irritating the branch of the the trigeminal nerve that goes to my left eye. This makes sense as I also have TMJ on the same (left) side, and I also have some inner ear problems on the left side. Clearly there is something wrong somewhere on the left side. Anyway, she says that some antidepressants can actually help with neuropathic pain. So that is the next thing I am going to try. It's worth a shot. Meanwhile, I'm still taking the omega 3 fish oil every day and using the preservative-free artificial tears. I've been doing this for the last 3 months but so far I've noticed no improvement. Please let me know if you come up with any new ideas or find something that helps you, too! Hang in there. I'm convinced there has got to be an answer to this problem somewhere.

[CanadaMo]

hello TurnDowntheSun:
there is finally some cloud coverage today in normally-sunny, extremely-dry Calgary, Alberta. i was able to walk about 5 blocks from the bus stop to home. oh, happy day! don't care much for transit but like you, can't drive if any sun or if dark (headlights). It is great that your wife is able to drive you places. my boyfriend calls himself my chauffeur already. I probably wouldn't leave the house otherwise.
You will like the wiley-x sunglasses and they should help a lot. i have a pair of 7-eye sunglasses as well that are not quite as dark, so i usually wear these if i am at a restaurant or at a friends house. not that i go out much at all anymore. i sometimes feel uncomfortable wearing the glasses indoors, especially when people stare, but thats what i have to do. if you need to do that, just do it and forget about what anyone thinks. even if you need to go to a shopping mall (with all the bright lights and forced dry air).
It sounds like the cause of your extreme light-sensitivity is different than mine (the radiation destroyed all my tear ducts and eyelashes and did some damage to the eye and the light problem is getting worse now) so not sure what treatments would help me. It is fabulous that your mri showed nothing abnormal.
supposed to get my vision checked next week so maybe the doc can get me in to see another ophthalmologist. haven't had much luck with doctors here.
anyway, guess i am just venting with someone who understands the pain. ps. i put dimmer switches on all my lights at home and it helps a lot. Hope a cloudy day comes your way!

[Rowanberry]

I have had bad photophobia, wore sunglasses outside for years, but this became very bad after I developed dry eyes and RCEs. Like you I needed sunglasses then wraparound glasses and sometimes a scarf over that! I have ME and MS so nerve problems are behind my basic photophobia.

I discovered that wrap around viper blu blockers could help. They cut out the biggest source of glare without stopping light coming in. I can wear them and still read or watch TV. I have not used them outside though.

When I have extreme light problems now I put in my celluvisc eye drops and put on Onyix goggles. They are completely black and my eyes are soothed. After about half an hour they feel refreshed. Constantly keeping your eyes screwed up will make the pain worse so this relaxes the muscles. Experience with the MS has shown that the nerve problems are one thing but often the muscle tension, bad posture etc are the biggest source of pain.

Cold compresses can help too.

Since I have been treating the dry eye, the photophobia is not so bad (My curtains are opened during the day!)

It will probably take a combination of things but I hope you get relief. Oh and don't be seld conscious, as people say your eyes come first. People may stare at first but if you see them often they will quickly get used to it and if you aren't going to see them again who cares

R.

[mgshutterbug]

I have had photophobia since I was a child, have had to wear dark sunglasses outside since I was very young. However when all my eye problems got exacerbated by botched surgery for trigeminal neuralgia, my photophobia reached incredible proportions. I wear Zienna (7 eye) glasses in sunglasses, and a slightly tinted pair for indoors. I have found that when I wear the silicone moisture chambers in them, they do a very good job keeping my eyes moist, unless I go outside in the cold or wind. But the Ziennas don't fit quite right, they migrate down my nose, and I haven't found any way to make them fit right, and I've tried some unorthodox methods! I haven't found the old fashioned adhesive nosepads like they used to make... But for all their faults, they're sight-savers for me. I'm unable to ever sit with my moisture-chamber eyeglasses off, the pain is much too severe, and my vision degrades horrendously because of the eye dryness. I wonder...does anyone know if 7eyes solicits any feedback from those of us who really need their products to survive? We have invaluable input...
Maria

[TurnDowntheSun]

Hey CanadaMo,

I'm glad to hear you finally got a cloudy day in Calgary. I'm still waiting for a cloudy day here in Sacramento. It's been sunny every day for the last 8 months; if I had known I was going to develop photophobia, I never would've moved here! All my friends on the east coast tell me it's always raining and cloudy. They're complaining and I'm thinking it sounds wonderful!

I was actually born in Canada; and my mother is from Calgary. Yes, it does sound like the cause of our light sensitivity is different, but it's the same end result. No more casual strolls around town on a sunny day. Did you get your vision checked again and will you be seeing another ophthalmologist? Thanks for the tip about the dimmer switches; that's a good idea. I don't go out much either these days. But you're right, I need to stop feeling so self-conscious about wearing sunglasses indoors when I'm out somewhere. Who cares if people stare or what they think? I'm guessing most people don't notice or really care anyway.
Anyway, I understand the need to vent to someone who understands this bizarre problem. I'll send you a private message with my email. Feel free to write me anytime. I could do a little venting myself, I'm sure.

Take care and here's wishing you more gray, cloudy and overcast days.