What on earth is going on with my eyes????

[Guest]

Hello all!

Still trying to figure out what the heck is wrong with my eyes (other than the obvious... I had Lasik haha).

Dr. L had posted that you have to figure out what made YOU get dry eyes when other who have had LASIK do not... but how on earth to do this? I'm at a loss... I feel like I'm just taking somewhat random stabs in the dark, hoping to hit on something...

Although I am grateful to be so much better than I was last summer, I am still nowhere near normal..

...still wearing goggles pretty much 24/7, eyes easily get red at work (have to use drops every 30-45 min. PLUS moisture chambers or else my eyes get REALLY red)... on doxy now, Lacriserts, PF artificial tears, autologous serum, Restasis

At home, I can get away with just Restasis 4 times daily, and autologous serum 4 times over the day leading up to supper time... In the evenings (after 9pm when my kids go to sleep for the night) I still need Oasis tears maybe once per hour, since I usually watch some TV then. Of course, I'm still wearing moisture chambers even at home.

Still doing the heat/gland expression thing twice per day as well.

Plus, uppers cauterized and lowers plugged.

So what the heck do I do NOW?

My doc told me at my last appointment (albeit in the nicest possible way) that he doesn't think there is anything else he can do for me... he's a good doc and all, but he doesn't specialize in dry eye like Dr.L... so I don't think I'll be able to get anything more from him... unless I can convince him to let me try oral pilocarpine (which I'm not even sure I WANT to do), or a higher concentration of topical cyclo (again, not 100% sure on this one either... not even sure if I could get him to go for it, anyhow...)

So WHY are my eyes like this? Am I just S.O.L. now?

I know that's a bad question to ask... no-one knows the future, right? And maybe my eyes will continue to improve even more over the next year... but as so many of you know, it is so hard to just sit and wait when you have no idea what's coming...

Anyhow, not sure what exactly I'm hoping to accomplish with this post...

but, thanks for letting me ramble... just feeling a bit defeated at the moment...

No worries... I'll get over it...I always do...

Going to Costco now...

[irish eyes]

...still wearing goggles pretty much 24/7, eyes easily get red at work (have to use drops every 30-45 min. PLUS moisture chambers or else my eyes get REALLY red)... on doxy now, Lacriserts, PF artificial tears, autologous serum, Restasis

At home, I can get away with just Restasis 4 times daily, and autologous serum 4 times over the day leading up to supper time... In the evenings (after 9pm when my kids go to sleep for the night) I still need Oasis tears maybe once per hour, since I usually watch some TV then. Of course, I'm still wearing moisture chambers even at home.

Still doing the heat/gland expression thing twice per day as well.

Plus, uppers cauterized and lowers plugged.

Saag - I didn't realise you were using so many different things.

Do you think the serum has made any difference? I'm still using it and whilst my eyes are not `normal', they are considerably better than they were a year ago. (I've had this condition for a very long time but the hospital said there was nothing more they could and mine was a mild case anyway. No it wasn't!!)

I'm wary of using too many different things because then I don't know what has worked and what hasn't. Keeping things simple suits me.

With your expressions; are you managing to unblock the glands? I only do this a couple of times a week now - I think I was doing it too often before and it was making the lids worse.

[Sammy B.]

SAAG, you are not SOL!!

I am wary of trying too many things at once too, as Irish Eyes has said.

Do you think you could stop some or all of your treatment and add things back in slowly? Perhaps start with the autologous serum first for a few months since that will obviously expire sooner than the other stuff, and see if that helps, then move on to something else?

My theory, and I hope this does not seem too blunt, is that you're doing some right and some wrong, you just need to weed out the wrong.

Thoughts??

Rose

[Guest]

Thanks for all the replies everyone! I'm back from Costco... spent a 1/2 hour in the backyard with my kids... and have a bit of time to write again!

I think you guys are right about my needing to simplify things again. In my haste to find something, anything, that worked, I've overdone it, haven't I...

I've drifted back into using artificial tears more and more... in the short term, they give me a burst of extra "eye time" to spend on the computer, watching TV etc... but in the long term, probably not so good.

I think I'll try for starters I'll try to just cut back on my artificial tear usage and see what happens over the next while... I'll try going back to just splashing cold water on my closed lids to get me by when at home, and see how I do.

It's the hardest to cut back at work... if I use less tears, I can't work nearly as efficiently due to needing frequent eye rest breaks... but since I work alone on most shifts, it's not too terribly noticeable I suppose... well, other than the fact that there might be a little bit more work leftover for the next shift... will have to try to find a happy medium I suppose... Thank goodness I'm only part-time!

Chemia, scleral lenses are definitely on my radar... will be trying to learn more about them over the next few months so I can decide if I want to pursue that option!

Sheralyn

[odydnas]

Hi SAAG, do not hesitate to try sclerals! It did not work for me, but while I was at BFS, I saw so many patients who walked away with their life back. It was amazing. I suggest you give BFS a call and talk about what they can help you with. While I was at BFS, I met quite a few people from out of the country, and 4 of the patients were from Canada! You have nothing to lose and much to gain I regret having waited so long to finally bite the bullet and go to BFS, and I wish I had gone sooner because I was able to get some answers and approach my situation in a different way.

[Sammy B.]

SAAG,

Was thinking about your question again last night (hot Friday night as you can see) and maybe you ought to see Dr. L. as you had suggested to find out if he can thin out your regimen and get you on a good path? I think a visit to see him would be cheaper than sclerals (perhaps?).

I think we've talked about this before - but since you and I couldn't really tolerate contact lenses for a long period of time, I think this means we had naturally-occurring dry eye issues before LASIK. Solving these issues (which Dr. L. should be able to diagnose/figure out) might bump you into a way better place and you may not need that time machine after all...

Rose

[Guest]

re: sclerals

It would sure be amazing if scleral lenses could alleviate my symptoms... the eye that has been the worst over the past 7-8 months is my left... it produces almost no tears... I never have to blot excess tears from it, even though all its puncta are blocked. My right on the other hand, I regularly blot. So... I wonder how my left eye would do with sclerals... I worry that it would be too dry... but I guess the only way to find out would be to try them, huh...

re: thinning out my regimen

I've been thinking some more about what I could cut out... so here's the thing...

1) oral tetracyclines... was on 250mg tetracycline twice daily from October 2009 until a couple of weeks ago (it's now backordered, so I had to switch to doxy). Anyhow, back in January, I tried going off it... within 2 weeks, ALL of the progress my eyes had made since starting it was lost... (the only thing that changed during this period was the discontinuation of tetra) I went back on it, and started to improve again. So... I'm scared to stop the oral tetracyclines now (currently doxy 100mg per day)... at some point I will for sure try again to quit... but I'm leary of quiting now... my MG's are the best they've ever been now in my right eye (ie. the best they've been since last summer when I started monitoring them)... and my left, well, it's still iffy... not aweful, but not great either.

So I don't know... does this mean I'm one of those people who can't get off oral tetracyclines without their eyes flaring up? How often should one attempt to go off them?

2) autologous serum - I kid you not, within 2 days of starting the serum drops, my evenings were MUCH improved. Nothing else changed... just the addition of serum drops 4 times per day. Prior to serum, by about supper time, it was all I could do to make it until 9pm when my kids went to bed so I could FINALLY just shut my eyes for a while... my eyes seemed to just shut down their tear production in by the time evening came... AFTER serum, I was able to get through the evenings so much easier... keeping my eyes open until 9pm was no longer a test of endurance... so serum is something that I am also leary of stopping...

3) Lacriserts - the day I started Lacriserts was the day I was once again able to actually READ the morning newspaper again. Prior to that, I was able to tolerate a quick 5 minute scan of the headlines... but to read an article was not doable... eyes WAY too dry (even with drops). Post Lacriserts, I was actually able to READ the articles that interested me...

I did go day without them on this past weekend... it was a bad eye day... my left eye in particular was miserably dry... so this too, I don't want to quit...

4) other artificial tears... THIS is something I totally think I can try... on days when I only use the computer from 2-4pm while my kids nap (avoiding TV or reading, other than the newspaper), a typical regimen would go something like this: (keeping in mind this is on a day when I do NOT have to go to work... being at work completely changes everything...)

8:30 am - steam my lids, gland expression... flush out with a vial of PF tears as per Dr. L's book.

8:45am - insert Lacriserts, then a drop of Restasis in each eye.... read newspaper for 20-30 minutes

10:30 am - 1 drop of serum

noon - 1 drop of restasis

1:30pm - 1 drop of serum

2pm - kids start nap - I start working on computer... I find Oasis tears plus works best during this time... will use the Oasis tears approx. once per hour while on computer

5pm - remove Lacriserts - 1 drop of Restasis in each eye

6pm - 1 drop of serum

-every hour after Lacriserts are removed, I need SOMETHING, otherwise I my left eye is too dry to keep open... about an hour after using drops, my left feels intense rubbing over the eyeball with every blink... then I start to get itching where my lower plug is... then the rubbing starts to hurt (I normally don't let it get to that point though)... if I didn't generate tears via yawning frequently, I would need drops more than once per hour.

9pm - watch TV (finally!) for 2 hours... then listen to audiobook for a while... steam lids/gland expression... then sleep

If I were to watch TV more throughout the day (ex. actually WATCH a cartoon or two with my kids), or spend too much time reading dry eye zone here and there during the day, my left eye in particular gets horribly dry and I cannot keep it open unless I increase the frequency of dropping. My right eye manifests its irritation via that old burning sensation coming back.

6) Restasis - after maybe a month on Restasis, I noticed that I no longer had these random flare ups like I used to... eyes were less red etc.... so I'm pretty sure Restasis gets the credit for this. Post-Restasis, if my eyes flare up, it's for a good reason ex. spent extra time on computer... stayed up too late... etc.... soooo..... scared to try going off this as well...

7) IPL at dermatologist - I get my full face done, and as close to my eyes as they can without frying them haha... I've had 6 treatments... will go for 2 more and then quit... hoping to get my left eye MG's improved more... we'll see...

So... how to thin out my regimen and remain reasonably functional? That is my biggest hurdle to overcome. With this regimen, I feel reasonably normal (as long as wear my moisture chambers religiously through all this), which is really nice. I can even get away with no moisture chambers maybe 1 evening a week if there is a family get together or something...

re: old pre-LASIK issues

The more I've thought about it over these past few months, I suspect my pre-LASIK issues were likely some form of ocular rosacea. Why? I have rosacea on my face... I apparently don't have allergies (as per recent testing at allergist)... I apparently don't have Sjogren's (as per recent bloodwork... granted, one can have Sjogren's even with negative bloodwork... but I guess it seems like a less likely possibility to me now... who knows though...) I'm not diabetic... not on any medication whatsoever (therefore no medication induced dry eye)... so I think the most likely culprit would be ocular rosacea - my symptoms seem to match.. redness... MG dysfunction... facial rosacea (albeit very well controlled thanks to Metrogel and IPL)...

Of course, I cannot be positive that it is ocular rosacea... but it's the best theory I can come up with for now...

And then I had LASIK, which just compounded the minor, under-the-radar issues i had prior to that... LASIK clearly threw me off a dry eye cliff...

re: Duke Medical

Awesome to have yet another option!

So... sorry this is soooooo long... but figured it would give a better idea of my dilemmas here...

[Sammy B.]

SAAG,

Sounds like a good, updated regimen to try. If you are quadra-plugged basically, don't you need to rinse out the eyes more often though? Maybe the once a day rinse in the morning is enough however?

Still, if it could be ocular rosacea, I wonder about the plugs and trapping things in the eye versus draining them, especially with all of the Lacriserts, serum, etc.

So maybe try your new regimen for a month or so and if you still experience no relief, go see Dr. L.? I think he's the expert on rosacea.

Rose

[hopingforacure]

I hope you can find some answers ! I have kids also and my dry eyes definitely lessen the quality time I can spend with them. It really upsets me ! I'll send you a virtual hug...

[RobLIC]

When some doctors prescribe doxy, they do a short burst at a high-ish dose (100-200 mg 2x a day), then reduce it to 40 or 50. At the high dose, you're getting an antibacterial effect. The lower dose is considered anti-inflammatory.

The thing about being on a high dose long-term is that it exposes you more to two serious side effects: developing a resistance to bacteria and sun sensitivity.

[Guest]

wow! Thanks for reading all that guys... I know it was INSANELY long... sorry again about that!

SAAG,
If you are quadra-plugged basically, don't you need to rinse out the eyes more often though? Maybe the once a day rinse in the morning is enough however?

Still, if it could be ocular rosacea, I wonder about the plugs and trapping things in the eye versus draining them, especially with all of the Lacriserts, serum, etc.

So maybe try your new regimen for a month or so and if you still experience no relief, go see Dr. L.? I think he's the expert on rosacea.

Rose

re: rinsing out the eye... they get a good rinse in the morning after gland expression, again when I take out the Lacriserts, and a third time after my evening gland expression

re: potential ocular rosacea and plugs trapping everything - I wonder about this myself... my right eye especially is much more comfortable post plugs though... the left eye just a little bit more comfy... don't know if the increased comfort outweighs the negatives of plugs trapping everything in there...

I hope you can find some answers ! I have kids also and my dry eyes definitely lessen the quality time I can spend with them. It really upsets me ! I'll send you a virtual hug...

Thanks!

When some doctors prescribe doxy, they do a short burst at a high-ish dose (100-200 mg 2x a day), then reduce it to 40 or 50. At the high dose, you're getting an antibacterial effect. The lower dose is considered anti-inflammatory.

The thing about being on a high dose long-term is that it exposes you more to two serious side effects: developing a resistance to bacteria and sun sensitivity.

You're absolutely correct about all of that!

I had tried the low dose doxy for a while... although my doc put me on an ultra low dose of 20mg per day... it didnt' work at all for me... that being said, I would consider trying 40mg per day in future... maybe 20 was too low for me, but 40 would work... who knows... but man... the low dose stuff is CRAZY expensive!!!! It's so much cheaper to be on 100mg per day than 40 or 20....

Fortunately, so far, I don't seem to be experiencing any increased sun sensitivity... as a precaution (mostly due to IPL and rosacea, I must admit), I wear SPF 45 on my face religiously... if I plan on being in the sun for a prolonged period, I also apply SPF 30 to the rest of me... so far, so good... hopefully this continues!

Also, I've been lucky not to have any issues with ulcers... crossing my fingers this continues... Had some heartburn issues over the winter... took Zantac for a few months... I went off it to see what would happen, and the heartburn hasn't returned... lucky me haha.. hopefully this, too, stays good!

[irish eyes]

Also, I've been lucky not to have any issues with ulcers... crossing my fingers this continues... Had some heartburn issues over the winter... took Zantac for a few months... I went off it to see what would happen, and the heartburn hasn't returned... lucky me haha.. hopefully this, too, stays good!

I developed an ulcer - I cannot attribute it to Doxy.

The eyes bother me way more than the ulcer does.

[spmcc]

Re: 100mg doxy

I get 100mg doxy capsules and split them.

Yes, it's powder inside the hard-shelled capsule, but I open it, divvy up the powder equally between the halves, put a "plug" of peanut butter in one, and swallow. Then I have the other half, leaning in a teaspoon, for the next day.

Just an economical thought for the day...

[Guest]

I get 100mg doxy capsules and split them.

Yes, it's powder inside the hard-shelled capsule, but I open it, divvy up the powder equally between the halves, put a "plug" of peanut butter in one, and swallow. Then I have the other half, leaning in a teaspoon, for the next day.

Just an economical thought for the day...

What a fantastic idea! Thanks for sharing!

I will try this when I try the lower dose again!

[irish eyes]

That is why one is advised to take it earlier in the day (not at bedtime) and to make sure it's taken with plenty of water. They can get lodged in the oesophagus.