My Opinion - Preservatives/Restasis = Eye Poison

[KyleDryEyes]

I would like to share my experience to help someone out there who may have similar symptoms as me. I understand that everyone has a different situation, but I found something that worked for me and I want to share it.

First, how many of the doctors out there tell you to eat a well balanced diet and drink lots of water to help your dry eyes? Mine didn't! Not that we need to be told that because we should know already, but not everyone eats healthy, and an unhealthy diet could result in dry eyes or exacerbate it. Long story short for those who don't want to read on, adding chemicals to my eyes only made them worse. I found improvement by eating a well balanced diet and drinking lots of water.

Also, I would like to add that I think Restasis is a sham. This is my opinion...I have no proof. But all I here is, "Restasis works for me", "It didn't work for me", "I don't know if it's working", "It works a little". So long as the cause remains unknown, I'm not wasting my money. I tried Restasis too and It definitely did not work. I though it did at first until I began forgetting to use it. You'll see, read on...

Summary of my dry eyes:
Using scale X out of 10
10 = perfect eyes, 1 = contemplating suicide j/k-lighting up

Before Diagnoses: X = 5
Symptoms: Eyes rarely hurt, burned, itched, or stung. ALWAYS red.
Treatment: Clear Eyes (poison) 4 to 8 times per day
Affect: Possible cause or exacerbation of problem

Just After Diagnoses: X = 5
Symptoms: Same as above.
Treatment: Systane once an hour, Clear eyes in between (addicted)
Affect: Nothing eyes still red

2 or 3 Months after Diagnoses: X = 4
Symptoms: Depressed and Red Eyes, and tired all the time.
Treatment: Systane once an hour, Clear eyes only when severe withdrawals set in.

Next visit with Doc (I can't take this no more, give me drugs) X = 3
Symptoms: Frustration, Depression, Severe Red eyes.
Treatment: Restasis 2x Day, Systane when necessary, can't help my addiction with Clear Eyes.
Affect: Beginning to improve (using clear eyes only once or twice a day)

Massive will power (throw away all my Clear eyes): X = 6
Symptoms: Still Frustrated, Red Eyes
Treatment: Restasis 1x Day (because morning restasis irritates my eyes), Systane and no more using Clear Eyes.
Affect: Eyes not red first thing in the morning anymore

Ooops, I forgot my Restasis last night, and TheraTears preservative free vials have a replaceable cap? Since going once a day on the Restasis, I started to forget to use my Restasis. I noticed on the nights I forgot, the next day my eyes were better than ever. And sometimes I would forget two nights in a row, but my eyes didn't suffer, they were just fine. I also found out that you could put the caps back on the TheraTears vials.

So that's the story. And this is what I do now... X = 8

I don't drink alcohol, I avoid soda and things with lots of caffeine. When I first wake up in the morning, I drink a cup of water, eat breakfast and have a small cup of coffee. It would be best to eliminate all caffeine and alcohol from your diet because they dehydrate you. Since coffee is just too good for me to give up, I compensate by drinking loads of water after I drink coffee (about a quart over an hour period). 90% of the time I drink water at lunch and dinner, and it saves money too. I drink about a half gallon of water per day and a gallon per day when outside (I live in the desert). I eat lots of fruits and veggies and try to avoid the salt shaker. I think by eating a well balanced diet, staying hydrated, and not putting nasty chemicals in the eyes will do wonders on most dry eye patients.

My main point is that I think most people get carried away with all sorts of different remedies and treatments, and they underestimate the importances of a good diet. Even if eating well doesn't help the eyes, it's still a good idea.

[KyleDryEyes]

I'm not sure I made something clear. Currently, I use preservative free TheraTears and I stopped using Restasis. Now, when my eyes get red from say being outside in the dry Arizona desert all day, my eyes will clear up after a good nights rest. I think punctual plugs is a safe thing to do. I actually might get that done and hopefully I will improve from an 8 to a 9 or 9.5 out of 10. Good luck to you all with this nasty condition.

~Kyle

[Rebecca Petris]

Thanks for sharing your story!

I'm tempted to rename your thread "VASOCONSTRICTORS = Eye Poison".

Even daily use of that stuff - let alone multiple times a day - has a well known rebound effect, and the cumulative effect of benzalkonium chloride applied throughout the day is simply scary to contemplate.

I agree about the dietary issues - though in my experience from all the stories shared over the years I don't by any means think it's a cureall. But for overall health, with the potential to improve ocular surface health, some of my top suggestions would overlap with yours (coffee... alcohol... I'd add HFCS, artificial sweeteners, too much refined white stuff of any kind...).

However, I would also like to point out that drugs/chemicals are by no means the only alternative. There are many safe, natural remedies that have proven helpful over and over to people with severe or chronic conditions. These include physical barriers to keep moisture over the eyes (eg moisture chamber glasses, sleep masks or goggles), other environmental controls (eg humidifiers), and lid hygiene and heat treatment for chronic meibomian gland dysfunction.

[Rebecca Petris]

p.s.

Forgot to say - Congratulations on the will power!!! Quitting that stuff is tough!

[KyleDryEyes]

Thanks for sharing your story!

I'm tempted to rename your thread "VASOCONSTRICTORS = Eye Poison".

I put Restasis there because it did not work for me and I believe it worsened my condition because of the side effects. Also, I want people to know that Restasis is not for everyone and I think it should be used as a last resort. I think step 1 should be to stop Vasoconstrictors and then preservatives. Go cold turkey! Step 2, correct your diet if necessary and use preservative free eye drops. Step 3, you listed a bunch in your reply. If I done all these things first, I would have found Restasis unnecessary.

This thread is for people contemplating using Restasis to reconsider if they hadn't done all necessary steps first. And again, people sharing my similar situation. Hopefully not to make the same mistakes I made. So thank you for not removing it from the title.

~Kyle

[Rebecca Petris]

Oh I'm not arguing with the Restasis part - it's just that my hatred of vasoconstrictors exceeds even my skepticism of Restasis.

If I had done all these things first, I would have found Restasis unnecessary.

This thread is for people contemplating using Restasis to reconsider if they hadn't done all necessary steps first.

I think you make a wonderful point and one that needs very much to be heard. There was a day - not many years ago - when cyclosporine was an end-of-the-line dry eye treatment. Today it's a first-line treatment in many ophthalmology and optometry practices. Patients don't even get a chance to learn about other options before walking out the door with an Rx.

[KyleDryEyes]

Also, thank you Rebecca for telling me about HFCS, I did not know that is was bad. I didn't know what the acronym was so I looked it up, High Fructose Corn Syrup, for those who also did not know.

So I started looking at the ingredients list on the food in my fridge and pantry...what do you know, HFCS is in my cereal, bread, jam, and the list goes on. Even Gatorade has HFCS in it (I don't think that athletes drink it). Soda pop is loaded with HFCS, and diet soda is no better since it has artificial sweeteners. Man, the grocery stores are loaded with garbage these days. I've researched HFCS a little bit and found out it is refined corn syrup that is super sweet and very inexpensive to produce, hence food and drink manufactures use it instead of cane sugar, despite it being very bad for you . That leaves me with one thing to say, "The love of money is the root of ALL evil".

MyPyramimd.gov has some good info on diets. You type in your age and weight and it tells you how much of the 5 food groups you should eat.

Thanks again,

~Kyle

[calli66]

Kyle DE,

Hey, I avoid HFCS but I've forgotten why it's so bad...anybody know?

I can't digest fructose/ fruit anyway, and so look for cane sugar sweeteners, which aren't all that common any more.

I gave up coffee drinking about 4 months ago---which is a miracle, because I drank it every morning for 35 years. I switched to black tea, and then green tea--trying to lower the caffeine. The big benefit for me is that I feel fine in the mornings instead of like crap (you know--"until I've had my coffee"). It's a big advantage when I travel---don't have to go find that cup o' java first thing.

And I just started using Restasis again. I realized I've been having more flare-ups since I quit 4 months ago. So....I guess I'm falling for the hype once more. We'll see how it goes. I know it didn't increase the quantity of tears, but maybe it lessened the inflammatory substances in them. I always get to the point somewhere in my Restasis Experiments (6-8 months into it) where my eye health turns to disaster, so why it that, and why am I trying it again?

I have no idea. But this time around, I plan to use some other drops and meds to avoid the crash-and-burn experience. Maybe I was relying too much on the Restasis and not doing all I could to keep my eyes stable.

Calli

[liz56]

Oh I'm not arguing with the Restasis part - it's just that my hatred of vasoconstrictors exceeds even my skepticism of Restasis.
I think you make a wonderful point and one that needs very much to be heard. There was a day - not many years ago - when cyclosporine was an end-of-the-line dry eye treatment. Today it's a first-line treatment in many ophthalmology and optometry practices. Patients don't even get a chance to learn about other options before walking out the door with an Rx.

Well, that was my experience. I was diagnosed with dry eye by my corneal specialist, who just did a staining test, and who happens to sit on the board of Allergan, which makes Restasis.

I have a question about my dry-eye diagnosis now. I was using Muro 128 5% at the time. Could it have been making my eyes dry or appear to be dry? Is this a question for Dr. Latkany?

I really believe that I have dry eyes, which likely exacerbates my ebmd or at least contributes to my getting erosions from it. However, it seems that I cannot know anything for certain.

[KyleDryEyes]

Kyle DE,

Hey, I avoid HFCS but I've forgotten why it's so bad...anybody know?

Calli

I found this article:
http://www.sciencedaily.com/releases...0823094819.htm

It sheds some light on why HFCS is bad. I also read that HFCS could be the number 1 contributer to America's obesity problem. I'm not a biochemist, and as far as dry eye is concerned, I imagine that HFCS adds nasties to the bloodstream possibly contributing to dry eye. I found nothing to back that up, but I will still try to eliminate if from my diet. Maybe Rebecca can shed light on why HFCS is bad for eyes.

~Kyle

[Rebecca Petris]

Calli, we musta quit coffee about the same time. I went straight to green tea though. Black tea upsets my insides for some reason. - And while I'm this far off topic... My husband consumes enormous quantities of coffee, and I'd been worried about all the sweet stuff going in it - got to the point where I didn't know what was worse for him, sugar or fake sweeteners. Anyway one day he ran out of Equal and couldn't find the sugar (I'd switched to some kind of organic cane sugar or something so he didn't recognize it ) so he tried honey and believe it or not he loved it and has never looked back.

Now about HFCS: Prepare to be bored or skip to the next thread. And mind, I have no special knowledge about it whatsoever - just trying to amplify what I posted before.

HFCS is one of those food additives that's so bad that even the medical community are pretty much unanimous about it - that is, if you asked any doctor, they'd tell you how bad it is. As Kyle noted HFCS exists to make Brand X more appealing than Brand Y by making it sweeter as cheaply as possible, and is added by companies who don't give a rip how badly it may hurt us down the road. By gradually desensitizing us to how sweet everything is getting has inevitably led to the HFCS 'arms race' of sorts in the last fifteen years. There are almost no foods left that aren't laced with HFCS. Almost every packaged food on the shelf, with the exception of basic dairy and meat, has it. Yeah, it's easy to see why people are alleging that diabetes and childhood obesity are a direct result. All ya gotta do is watch the average shopper at the grocery store check out. You can find HFCS-free versions of most things - but you need (a) a generous budget, (b) spare time, and (c) some really great stores nearby.

I am a pretty average person and not inclined to go on health kicks of any kind, other than generally trying to avoid too many prepared foods and such. My label reading used to be confined to the unit price and how much added sugar and salt were in things. But one of my brothers preached me a sermon on HFCS awhile back, and I heard the same message from a couple of other people. On a whim one day I started randomly checked labels in the grocery store. I was so aghast, I felt sick to my stomach. It permanently changed the way I shop.

I haven't looked closely at the medical literature about HFCS, and frankly, sometimes reviewing the literature is of limited use. I mean, think of LASIK. If I relied exclusively on the studies in the (peer-reviewed) Journal of Refractive Surgery over the years, I would have no idea - I mean no idea whatsoever - how serious dry eye can be for those who get it from laser surgery, or how frequently it happens. I would also probably never have learned that gas permeable lenses are safer and more reliable than surgery for restoring vision damaged from lasik. Common problem in research... who's funding it. The food industry is far less scrupulous than even the refractive surgery industry.

The link above is a good one - I read that when it came out. It's very characteristic of our times and our food industries though, in that the direction they are going is not the sensible one (i.e. don't put that <bleep> in our grocery stores and our schools you <bleepers>) but rather, what additional additives can we put in food to maybe counteract some of the tissue damage HFCS causes? And though the researcher interviewed, notes that we consume far too much HFCS and that it's in far too many foods in the US, the article centers around soda. Hey, I don't drink soda (well, very rarely) so I could have just ignored it. When they start writing articles saying our BREAD and SPAGHETTI SAUCE are laced with that crap, then people might start noticing.

Anyway, to try and return to something vaguely on-topic: I have nothing linking dry eye and HFCS. The reason I've had it on my mind is just general things kicking around at the back of my mind about Why We Are Dry - what's behind the growing dry eye epidemic, other than obvious causes like Sjogrens and LASIK. I am particularly concerned about what I'm sensing is a growing incidence of dry eye (to be specific, moderate to severe MGD) amongst children and young adults. I've spoken with several pediatric docs who based on the pattern they see in their practice sense there may be a link to lousy diet, childhood obesity and too many prescription drugs. I've also heard of cases where they saw improvement when a real effort was put into diet and lifestyle modification.

Just ruminations really. Sorry for the long post. At any rate, HFCS is on my most hated substances list.

Kyle, by the way, we once had someone here who saw a dramatic improvement in their eyes after eliminating artificial sweeteners. If I find the thread I'll pop it.

[Rojzen]

pharmaceuticals and keeping hope alive

KyleDryEyes - - Your chronicle is fascinating, and the self-discovery, along the way, is a huge lesson, I think, on the subject of healing.

But healing and recovery are unique, for each person, even when all are dealing with the same broad diagnosis. . .I'm writing just to register that setting aside the poisons that actually damage our eyes directly (like BAK and the vasoconstrictors), the "poisons" that we sometimes dub other drugs, can be worthy of serious consideration, when one has DES. . .

There is never a reason not to optimize diet, except, perhaps, when this comes as part of a complicated and unhelpful mental syndrome, of which I am a bona fide veteran: self-blaming and delusions of omnipotency..coupled with an unqualified worship of all things "natural."

In a nutshell, for my first six months of DES, when I moved rapidly from 5 to 1, on your scale, seriously contemplating and planning suicide, the sole therapies I would consider were dietary purification, orthomolecular nutrients, herbal and flower remedies, homeopathy, and otherwise vibrational or "natural" solutions, including acupuncture, acupressure, and neurolinguistic programming. I had the privilege of working with whom I believe are two of the finest homeopaths in the world, one in Canada, and one in Oregon. I eliminated caffeine (a huge challenge for me), and ground up my wheat grass and raw carrots daily (my then-spouse did this, actually - - a dear man). . .I used only TheraTears. . .But nothing, alas -- nothing -- worked or even made a dent. What's worse, I came from a culture in which all drugs were considered poisons, and my belief was that even if a drug could palliate my symptoms, it would eventually kill me anyway, and so there was simply no reason to consider drugs. Ipso facto, I was either destined to remain disabled, or literally doomed.

People who place unqualified faith in natural therapies often also believe that if they are sick, it is their own fault, since, in this belief system, only disruption of natural living, which one generally does to oneself, can cause illness. Homeopathy is different, on this point, fortunately, in that it acknowledges inter-generational miasms and environmental disturbances. Generally, though, the anti-drug culture, while a very laudable one, ceases to be wholesome when it stops someone from taking what may be the only useful step towards recovery.

In order to recover, I believe, one must be able to conceive of feeling and doing better, and be able to conceive of the possibility of genuine change. If one avoids a whole battery of options (like conventional medicine), on principle, only then to stagnate, one loses the capacity, I believe, to accept the possibility of recovery. Without that possibility on the horizon, I have found that more stagnation, and deeper depression, follows. . .

So that is my plug for doing everything that KyleDryEyes recommends, but then remaining open to embracing, even if only temporarily, anything reasonably non-injurious that will bring one back to a state of function and optimism. I would place Restasis in that class of options, along with the systemic drugs that mute neurogenic/burning eye pain, and any antidepressant that helps a DES patient remain hopeful.

In that vein. . .off I go to get my Rx of FreshKote, with hot black French Roast coffee in hand, and looking forward to my evening doses of dietary Lithium, Guaifenesin, and Toprol (for my slightly gimpy heart). . .I would give a lot for a non-pharmaceutical cure. . .or even for the news that homeopathy has become better understood, of late. .but until these things happen, my life remains a mishmash aimed at keeping hope alive (thank you Jesse (:^)..

Hugs to all!

[liz56]

In that vein. . .off I go to get my Rx of FreshKote, with hot black French Roast coffee in hand, and looking forward to my evening doses of dietary Lithium, Guaifenesin, and Toprol (for my slightly gimpy heart). . .I would give a lot for a non-pharmaceutical cure. . .or even for the news that homeopathy has become better understood, of late. .but until these things happen, my life remains a mishmash aimed at keeping hope alive (thank you Jesse (:^)..

Hugs to all!

Yea! I'm glad to hear that your FreshKote is in, Rojzen! I hope that your trip went well. (Sorry to get off topic with my reply here.)

[Rojzen]

toasty with your comfort

Liz56. . .Hard to express how touched I am by your remembering such details of my often silly life. . .I have a long way to go before I will be that kind of caring, sincerely involved, helper even to those about whom I care deeply. . .

Indeed, the FreshKote is in hand, and I'm now on temporary respite from house moving. . .(Please remind me never to buy a house again, on the assumption that someone will hire an oldster like me, anywhere NEAR that house (:^)). . .

I hope all is well with you, too. . .Many thanks again, dear friends!