Experiences with proposed remedies

[btbnashua]

Just to add my two cents on various proposed remedies. I developed my dry eye after Lasik:

LiquiMax Multi-Vitamin Formula-- I used two months (one bottle=one month supply). No effect whatsoever.

Flax Seed Oil --Various tries, lasting anywhere from a few weeks to a few months. I took two tablespoons in morning and another two tablespoons in evening. No effect whatsoever. I did not even get the other health benefits--i.e. healthier skin, etc.

Flax Seeds (Grinded in my own grinder)--I tried this twice, each time for about 3-4 months. While very filling, no effect whatsoever.

Wheatgrass juice-- two week try. No effect whatsoever.

Fish oil --Various tries. The last time I took 20 grams per day for two weeks. My eyes actually became drier. The other tries were at dosages of 8-10 grams per day. Same result--my eyes were actually drier.

Bilberry Extract -- Tried twice for about 30 days per try. No effect whatsoever.

I don't mean to depress everyone but given the amount of hype on the internet for these items (and given the expense for some of these "remedies"), I thought my experiences might save some of you the time, trouble and expense of chasing after remedial mirages.

[Rojzen]

refreshingly frank! and much needed!

I'm so glad you posted this list of attempts and results. Inasmuch as I like to think that all of us have at least tried supplements along the lines of your list, it strikes me as overdue for our eye care professionals to be exposed to the reality that a good chunk of us with DES, be it from MGD, aqueous deficiency, or some other ocular surface disease, simply will not be able to respond to the nutritional therapies that are touted for DES so widely. . .

When I first developed symptoms, I spent a major fortune on Evening Primrose Oil, after reading that this actually ran the chance of CURING me. . .Then there were the detoxifiers, like Hoxsey's Formula, ESSIAC, and related herbal mixes. . .and the series of Vitamin A-enriched eye drops, that were also touted as outright cures. . .

It is WONDERFUL that some people ARE actually cured by these supplements, and by eating and living more healthily. . .but it does a disservice to patients who have actual pathology (tissue change) to convey that there exists a reliable and predictable set of cures for them. . .

Harkening back to 1998, when my life as I knew it ended, as a result of rapid- onset DES, I recall seeing something online about TheraTears being able to cure dry eye in about 17 days. . .When that didn't happen for me, I was definitely much worse off mentally than I would have been had I realized that the search for relief was going to be more extended, complex, and even more interesting (:^)). . .

But back to the main point: Our doctors should not be lulled into a sense of accomplishment just because they've remembered to tell us to take oil supplements, in addition to dispensing the obligatory Refresh samples. . .It's great that they may be thinking globally, for us, but for professionals who are supposed to be scientists, of a sort, it amazes me how often they seem to overlook that the actual per centage of DES patients who respond SIGNIFICANTLY to dietary supplements is not very high, if this has been studied at all. . .

This, btw, doesn't stop me from trying new supplements ALL the time. . but because I, too, have never responded to supplements, I tend to try things for other conditions I have, and hope that they will sweep my DES into their effects. . .It didn't happen with NAC. . .and has not yet happened with Lithium Orotate (which does help me with outlook). . .but I am about to embark on daily Guaifenesin, for my fibromyalgia, with a little hope that this may also benefit my eyes. . .

[clairvoyant]

I think you want to do all those things all the time, it's real good for your body.

[btbnashua]

My list would have been longer but I feared I would cause people to tune out. I have also tried primrose oil, spiriluna, acai juice, NAC, enzymes, pomogranate extract, ginkgo, and green tea extract. I generally used large dosages for each lasting for at least one month--no effect whatsoever. Even this list is not complete....

I too will continue trying and reporting. Let's keep the hope in the meantime...

[Rojzen]

low expectations set us back; objectivity moves us forward

I so like your spirit, btbnashua! In my view, it doesn't hurt the cause at all to admit when something doesn't work. . .Objectivity may just set us free, in the end! In a sense, sticking with something that is not only costly, but also gratuitous, can be a form of the 'bigotry of low expectations' (:^)). . .I will look forward to your further reports. . .and I'll keep posting mine, too. . .For the record, I'm trying FreshKote now, for the first time (week #2), and starting on systemic Guiafenesin next week. Restasis has always helped my eye pain, possibly through suppressing inflammatory infiltrates, but I don't have much aqueous deficiency, and am much moreso an endstage MGD case who gets along only through the grace of moisture chamber glasses. .. I've suspended the Restasis now, for a few months, in order to give FreshKote a clear field. . .

Looking forward. . .

[dianat]

I don't know abou the remedies and all. I personally didn't see any marked improvements with supplements, but I certainly know people who have. Everything is worth trying in my opinion.

What's more, there was a time post-LASIK when my psyche was very damaged and my eyes were very horrible and I just needed to be doing something to help myself. I was depressed and at my wits end.

So if spending a few bucks on supplements and assorted drops was part of my journey of healing, then it was worth it. Some do see a benefit and a small amount of hope can go a long way.

D

[kitty]

Everyone has different body chemistry and different causes of dry eye. What does not work for one might work for another. As mentioned previously, some of these supplements, like fish oil, have other positive impacts on our overall health and are worth taking even if they don't help the DES. Keep an open mind, and an open wallet!

[sazy123]

But back to the main point: Our doctors should not be lulled into a sense of accomplishment just because they've remembered to tell us to take oil supplements, in addition to dispensing the obligatory Refresh samples. . .It's great that they may be thinking globally, for us, but for professionals who are supposed to be scientists, of a sort, it amazes me how often they seem to overlook that the actual per centage of DES patients who respond SIGNIFICANTLY to dietary supplements is not very high, if this has been studied at all. . .

I completely agree with this, thats whats so good about this website we are in a unique position in that we can gage what works for people an what doesnt, fine its not scientific but its all we have got. I agree the actual % of people who respond to supplements for dry eye is not that high. We get success stories all the time from restasis- we know alot of people benefit, also things like sclerals, dhea. I think supplements and eating healthy is very good some conditions and it has helped other problems i have had. But as btbnashua says its had no effect whatsoever on my dry eye.
But as i have said before it does help some people so is worth trying and cant do any harm.

When i first got this dry eye 3 years ago i knew very little and i had high hopes after reading alot on the web about omega 3 cureing dry eye. I tried it all for 1 year: omega 3 flaxseed and various others, borage oil/evening primrose/NAC/ and lots more but no effect what so ever.

As i believe my dry eye is neurothrophic (nerves are effected) i dont hold much hope for supplements.

[Rojzen]

neuropathy, yes!

Thank you, sazy123, not only for the courage that it takes to challenge the conventional wisdom, but also for noting the role of neuropathy in our disease and our symptoms.

When I used to be a patient of the truly amazing Dr. Tseng, then at Bascom Palmer, he often shared little insights that I believed were immensely wise, and very much the product of a brilliant scientific disposition. . .He remarked at how often DES patients present without a great deal of pathology, on examination, all the while reporting horrific and disabling symptoms. . .He called my case a case of "white eye," i.e., a case in which there wasn't a lot of injection (though I started at 3+ on the conjunctiva), but symptoms were severe. He said that he believed there just had to be neuropathic factors to account for the disproportional severity of symptoms. . .

It was unclear, to him, I think, whether the neuropathy preceded or resulted from the DES. . but regardless, this line of thinking prompted me to seek the same sort of treatment that patients with better-understood neuropathies receive. . .leading me to Amitryptiline. . .That medication proved to be my first major success in reducing my symptoms. . .and I was then able to go back to graduate school, and, ultimately, to take a good job with the govt. (which I've now lost, alas). . .

Anyway. . .That wisdom about neurogenic causes for at least some of our pain is really invaluable....And it is a different issue, altogether, I think, from the issue of the LASIK-induced nerve damage that reduces tear and blink reflexes. . .I think the universal neuropathy of DES is actually the result of constant abrasion of the ocular surface in the absence of quality tears, after the tear disorder has set in for a while. . .

[sazy123]

Anyway. . .That wisdom about neurogenic causes for at least some of our pain is really invaluable....And it is a different issue, altogether, I think, from the issue of the LASIK-induced nerve damage that reduces tear and blink reflexes. . .I think the universal neuropathy of DES is actually the result of constant abrasion of the ocular surface in the absence of quality tears, after the tear disorder has set in for a while. . .

I read recently, neurothrohic causes of dry eye i.e lasik surgery causes corneal desensitisation of the nerves with leads to decreased tearing, and MG function. Most of the time it recovers but not all of the time. I think this can happen due to other things as well, not just lasik. and i think its a hard case of dry eye to treat. In my case if i do have neurothrophic dry eye (which is probaly a big element), it came before the dry eye. Is that what you mean? but yes dry eye does cause nerve pain as well.
Im now looking into serum drops for this reason.

Im not sure if neuropathy is the same as neurothrophic?