My intro: Kassandra, prophetess of Ancient Troy

[Kassandra]

Well, I've blogged all over the web, but I never suspected I'd come to this place! My research during my most recent flareup of eye burning found you people and here I am... for better or worse.

Nearly two weeks I've been wearing my sunglasses around the house and clip-on shades to work at my computer. I haven't had the courage to leave the house until evening when the UV rays are gone ( pretty much).

Here's the story: I've had recurring "dry eye" problems for about 6 years. The first "attack" I was sitting outside and noticed the sunlight was very bright. This progressed to actual intense pain and photophobia. I admit I was a "difficult" patient back then as I was totally freaked out and I have a real thing with anything going on with my eyes. I'm an artist. "nuff said.

It really didn't seem any doctor I've been to was very interested in this phenomenon, but I really didn't like it, so, having had other problems physicians aren't very conversant with, I decided to apply myself to my problem...backwards.
When did this start? What were the circumstances? which drugs involved?

Well, my first stop was to a very good ophthalmologist who told me I had "dry eye" and prescribed Restasis which I didn't like because it burned; on to my gynecologist for testing as I had been receiving synthetic hormones for about 3 years, and I was suspicious of them. Turned out my body had rejected them. So, I begged to switch to bio-identical compounded hormones. They really helped. I also decided to add essential fatty acids thru nuts and vegetable/nut oils to my diet and that worked wonders. Until...............

I went to see an optometrist 2 weeks ago and he dilated my pupils and raked my retinas with bright lights. I even said it was torture while he was doing it. He even said I have dry eye. I don't think I've had that done for years, it's like cave medicine!

So, I began experimenting with various drops I have at home. I finally went back to his office to pick up some genteal drops and gel which worked "OK".... until this morning when I woke up with my eyes in slits from puffiness.

My eyes ARE getting a bit better since I started increasing my hormone use again and make sure I have at least one glass of my wonderful smoothie with the various oils in it a day.
I don't know what this is , as none of the doctors have taken the time to thoroughly check me out, but this time I may stick it out and find out what, if anything except age/overuse is at the root of this mess.I'm going back to the optometrist tomorrow. I hope it's not some of the things I've been reading on here!
This afternoon for my nap, I put a drop of natural Vit A in my eyes and that was a relief, but I don't want to do that too much. I may try E, that's pretty mild and very healing

I think ( pretty sure) I had a bad reaction to the dilation chemical. Of course, the docs will never admit anything they do could cause anything, but I'm NEVER allowing that stuff in my eyes again, thank you very much.

I was wondering if anyone else has ever had such a strong reaction to that dilation stuff and then the bright lights?

Anyways, Howdy all!

[calli66]

Hello and welcome!

Yes, the dilation and drops wreck your eyes for days sometimes. They really seem to strip every tear component right off the surface of the eye. It usually takes me 2 days to recover, but for some people it takes much more. I have retina damage, so there's no way any doc is letting me get out of an exam unless I get dilation. It's only every 6 months, though. Just remember, the drops don't do permanent damage, just really upset your eyes short-term.

Good grief, putting Vitamin A in your eyes? That sounds harsh. You probably shouldn't be doing that..... But just know, we all do stuff like that out of desperation---anything for relief! My own little experiment I did on my own eyes was in the late 80's----I probably had dry eye way back then, but didn't know what it was. Anyway, what I did (my confession here) is put NeoSporin Ointment in one of my eyes. It stung, but the petrolatum part relieved the dryness. Oh---and at the same time, I used to take lots of Advil to make the pain go away. People---don't do these things.

Turned out I had a "non-wetting callous" on my sclera and had to have surgery to get it removed. I don't know if all the neosporin did any damage. It was a classic case of being poor, no insurance, and not going to an eye doctor.

Calli

[Kassandra]

thanks! Well, I tried the Vit E last night (water soluble) and this morning, my eyes aren't nearly as sensitive to light altho they are still very puffy.
ALL the drops I tried didn't work, or made my eyes worse, so I stopped them. I'm going back to the eye doc this morning. I hope he refers me!
I'm glad to hear that someone else has experienced problems from the dilation drops.(not that I'd wish this on anyone!) I think if I had just left them alone, they would have gotten better. But after nearly two weeks and no relief, I am rather concerned.
I wonder why the puffiness. Do you think it's just the irritation?
I know I don't have allergies...unless it's to the drops! I'm VERY sensitive to drugs of any kind I DO know that.

[Kassandra]

Hello and welcome!

Turned out I had a "non-wetting callous" on my sclera and had to have surgery to get it removed. I don't know if all the neosporin did any damage. It was a classic case of being poor, no insurance, and not going to an eye doctor.

Calli

GAD! I hope I don't have THAT.

[magoo]

I don't understand why you would put vitamin A and E in your eyes. Does your doctor know you are doing this? Yikes.

[calli66]

Puffy eyelids--

They're irritated....but you already knew that. Puffiness can have many causes----hopefully, your eye doctor can narrow down the problem. Most likely, you will be advised to use some sort of steroid drop to cut the inflammation.....not what you want to hear! You'll have to go through more drops during the exam (fluorescing) so the doc can assess your eye surface. But hopefully not more dilation.

I think sometimes the dilation drops trigger a cycle of irritation and inflammation for an existing dry eye that's borderline "bad"---pushing it over into Really Bad.

Try not to confuse things by using Vit E or Vit A ---OK? That really adds to the causal variables. The carrier oils for the vitamins aren't sterile and may contain allergens.

Calli

[odydnas]

I'm sorry to hear about your troubles.

I was a bit alarmed to hear that you are putting soluble vitamin A and/or E in your eyes. Are these specifically formulated for ophthalmic use? Please do not put anything that is not sterile into your eyes because you would be putting yourself at further risk for an eye infection and permanent eye damage.

[Rebecca Petris]

I was a bit alarmed to hear that you are putting soluble vitamin A and/or E in your eyes. Are these specifically formulated for ophthalmic use? Please do not put anything that is not sterile into your eyes because you would be putting yourself at further risk for an eye infection and permanent eye damage.

I'm going to add to the broken record effect here with my "what she said". This cannot be emphasized too much.

[Kassandra]

OK! OK!
I surrender. The doc DID NOT give me/or prescribe me steroid drops. He DID suggest a drop that is pure mineral oil.
The reason I put those vitamins in my eyes is that I use them on other wounds and they work...better than mineral oil, that's for sure, which can actually bind up Vit A in the body and other nutrients. I'm big on diet. so that was where my thinking came from on that. I WISH he'd prescribed steroid drops!

I've had lots of run-ins with doctors over the years of my neurological disorder and other situations and 3/4ths of the time they make me worse. This guy seems to be one of them.

[Kassandra]

I don't understand why you would put vitamin A and E in your eyes. Does your doctor know you are doing this? Yikes.

Actually, yes, my doctor DOES know I'm doing this. she says "whatever works".

There's alot of big pharma propaganda about natural, alternative things. vit A is the "EYE vitamin" it is also a natural antibiotic. Vit E is the healing vitamin.
You have to make sure these things are natural not acetate. I'd sure rather put this in my eye than petroleum or plastic like is in some of the "approved drops".
Here lately, I'm just putting E around my eyes at night cause the skin is so traumatized. Some of it leaks into my eye and that's just fine with me.
I tried the steroid drops for a day. They are VERY expensive and my insurance won't cover them. Today, I'm worse after I woke up in the middle of the night with my tear glands feeling like scabs.
Best relief for me during the day; a simple antibiotic drop,(Dr prescribed) Genteal™ gel drops and homeopathic Similasan™ drops. Hot and cold compresses to get the blood and lymph moving and the Theratears™ lid wash foam. That stuff really gets into those oil glands and is very refreshing.
I'm starting to get better but the steroids set me back, unfortunately. Very important to find out what the underlying cause is. blood tests results pending.
Sorry I don't conform to the attitudes on this board, but you all have been helpful.

[calli66]

That's OK---it doesn't sound THAT strange. I've definitely done worse and heard worse. At least your eye doctor knows about Vit A and E that you're using.

Calli

[magoo]

Sorry if I came off harsh. I was just surprised. I'm so afraid of putting things in my eyes - it took me a year to try Azasite - that my reaction to reading that you were squeezing the oil from vitamin capsules in your eyes was so new to me I reacted a bit strongly. I wish you all the best in finding relief. I am very glad to hear your doctor approves.

[Gretchen]

Kassandra -

If folks were a bit intense about their responses, but you have to understand that it is because many are weary veterans of this battle who have witnessed the consequences of not being incredibly precious with what we put in our eyes. Our responses had little to do with the fact of whether it was "natural" or not but more out of concern as to the sterility and purity of using non-opthalmic preparations in your eyes. For example Vit E oil, while natural, is often and easily contaminated with some very nasty things. EWG even lists it as an ingredient of concern on its cosmetics database because of purity issues.

The ocular surface of people with dry eye is extremely compromised and caution rules the day.

As for nonconforming, there are many on the board that have opted to heal themselves with pragmatic, slower approaches such as fish oil, warm compresses, accupuncture, etc. so you are not at all out of the norm. But using off the shelf preparations not intended for the eye scares us all because we are familiar with some of the consequences. We just don't want you to get into any trouble. Because trouble like an infection or inflammatory response for a dry eye sufferer can have particularly devastating consequences. I guess I am trying to say that we caution you because we care.

Trust me that there is a lot of wisdom on this board. I can personally attest to the healing that I have had as a result of all that I have learned here.

Thanks,
Gretchen

[bernmee]

Actually, yes, my doctor DOES know I'm doing this. she says "whatever works".

There's alot of big pharma propaganda about natural, alternative things.
.

There are many people on this board who have had Lasik, and are here as a result. There are also many people who have been to Dr. to Dr. and have not been told what is wrong with them, or how to help themselves, and they find their help here.

Even the most die hard western medicine/presciption medicine fan would have to question the health system if they were to read many of the stories here.

Gretchen is right though, there are many people here who have combined "alternative" treatments with conventional treatment for help with there eyes. I am following a mostly raw food diet, with yoga, meditation and acupuncture as my treatment plan, and it is the only thing that has given me relief, the "conventional" meds didn't seem to work for me. I have never had to defend this decision. People are interested in knowing what works for others, because if it works for you then they might try it. But our experiences with the medical industry/pharma. industry has made some of us suspisicious so we can be a wary group when it comes to side effects/complications of any and all treatments, conventional or alternative. Even natural products can be bad for us, chamomile will make eye allergies worse and it is possible to over dose on herbs.

But there are some great posts here and it's a great site for help from all types of people.

I hope it helps you find some relief.

Bernadette