almost 4 years of severe dry eyes since Lasik...

[izzy3usa2002]

Hang in there I thing we all have the ups and downs with the dry eye. So many things aggravate it. i like a hot compress when in pain and when that doesnt work I go for the ice. It is a challange having this dry eye. You hang in there now.

[Guest]

Thanks again everyone for reading all of my "whoa is me" posts... it helps to get it out!

err... is that how you spell "whoa" in "whoa is me"?? hmmm....

I'm feeling better these days... mentally, that is...

The dry eye part is still totally sucking...

Anyhow, I have an appointment with the corneal specialist who can access Restasis on Oct. 30... I'm counting down the days!!

izzy3usa2002:
I love love love the ice... I keep a couple of rice bags (rice in a nylon stocking) in the freezer all the time!

bernmee:
I think you're right on about being prepared making things easier...

I think I've finally come around to the fact that even if worst case I stay like this forever, I'll survive, and manage to be reasonably happy anyways (audiobooks rock!). And if I manage to get to a more functional level where I can watch TV again, and use the computer more, then that will be a huge bonus and I will be absolutely ECSTATIC!! At this point, if I could just get back to only needing drops once every hour or two, I'd be thrilled!!

So... I guess time will tell!

I'm now going to get my butt off the computer and get a cold rice bag on my eyes... besides... gotta find out what happens next in my audiobook haha

[Rebecca Petris]

It's "woe". But I think "whoa" is kinda cute in that context. I sincerely hope soon it will be "Whoa!" as in, "Whoa, I can't believe how much better my eyes are than they used to be, I had almost given up hope!"

[Guest]

Update...

Figured it couldn't hurt to update this thread... don't want anyone reading my original posts to think I stayed that way forever haha

Soooo... back when this flare all started last summer, I was spending several HOURS each day with cold compresses on my eyes to relieve the incessant burning... not watching TV (I could only listen to it... bleh)... not reading anything (not even the morning newspaper... I could scan the headlines, but not actually READ anything due to the insane dryness)... and was limiting myself to only 15 minutes per day of computer time. Oh... and even COOKING bothered my eyes, because I'd tend to get into it, and presumably not blink a million times aminute like usual and end up with really really burning eyes.

Oh, and this was all even though I had started wearing goggles pretty much 24/7.

Anyhow, THAT is where I WAS... but now?

ooooo... can't wait to share

I now use the computer for 2-3 hours each day. I watch TV from 9pm when my kids go to bed until midnight or pretty much EVERY night. I can once again watch a movie with my hubby every weekend. I actually READ the newspaper. I can cook in reasonable comfort.

I still wear goggles almost 24/7, but at least I am once again FUNCTIONAL!

And, my eyes are WAY less red than they were back then... most of the time, when I'm at home, they actually look NORMAL! I use drops between once per hour to once every 2-4 hours when at home, depending on what I'm doing. Using drops in this manner, I can do all of the above in reasonable comfort.

For all of the other treatments I've been doing, you can check out the link to my blog...

Anyhow, just wanted to share some good news so that anyone reading this thread for the first time will know that even if THEY are right now like I WAS back then they won't necessarily be stuck that way forever!

[Rebecca Petris]

This is so, so awesome. THANKS for writing it.

To me, one of the things that really resonates is how badly off you were DESPITE goggles. There are so many people I've seen go through this stage... many who are right there right now... where NOTHING seems to give decent relief, even the things that are supposedly guaranteed to help. It's a very frightening place because if you read that moisture chambers WILL help as a last-ditch tool and then you're struggling this much even with moisture chambers, you tend to figure, I'm going to be the exception and will stay like this the rest of my life! But you're living proof that we don't stay in that place. That intense, totally life-robbing stage thankfully does pass sooner or later.

[irish eyes]

Could I add something here?

SAAG - your postings always have such a positive `spin'.

So pleased to hear that things have improved.

[Margaret]

Saag,

I'm hopeful I can be as happy as you! I just read this thread and it scares me to death that our stories are so similar, but I'm trying to lead the happy life that you are living. I too was always a happy and healthy person, but this has really challenged me. Like I keep saying, I have three very young children and to try to keep up with them and deal with this pain has been overwhelming to say the least. Thank you for the hope you bring.

Margaret

[Guest]

Saag,

I'm hopeful I can be as happy as you! I just read this thread and it scares me to death that our stories are so similar, but I'm trying to lead the happy life that you are living. I too was always a happy and healthy person, but this has really challenged me. Like I keep saying, I have three very young children and to try to keep up with them and deal with this pain has been overwhelming to say the least. Thank you for the hope you bring.

Margaret

If I recall correctly, you only had your Lasik in the last year?? So I would think odds are that you will recover better than I have because you are being proactive in looking for treatments SOONER than I did.

With my surgeon's blessing and assurances that it was perfectly ok, we decided to start a family...I got pregnant the first month we started trying, 3 months after my enhancement... then I was so busy with pregnancy (and feeling sick all the time...), newborn baby stuff... going back to work with baby stuff... pregnant again... newborn again etc... that I had no energy to question the lack of dry eye treatment that I was receiving. YOU on the other hand, are off to a much better start I think... so be hopeful... odds are you'll end up doing much better than me 4-5 years post-op!

As for the happy thing... once you get any pain/discomfort under control, it's much easier to be happy. For me, moisture chambers (Wiley's and MEGs) are a major part of that, and the biggest hurdle, psychologically.

Just do whatever you have to do in the mean time to be as comfortable as possible, and then just try to get on with living your life while you wait for your eyes to improve, or better treatments to come out.

Plus, you've got that procedure coming up soon that you had mentioned in another thread... THAT must be enormously stressful to deal with along with 3 young kids... so don't be too hard on yourself if you're finding this enormously difficult... but once you get through that, things will heal up well I'm sure, and then it's just a matter of getting the dryness under control... it'll get better! When you have such extreme dryness like we have, it's so incredibly tough to deal with... but luckily, with time, either the dryness gets better, you get better at handling it, or both.

I think if you've always been a happy person you'll find a way back to that... sometimes it just takes a while to go through the depressed/frustrated/scared phase.

[wetEyes]

SAAG,
after reading a great deal of opthalmology literature during the last year, I can recommend the following treatment regimen to you:

* lid hyperthermia twice daily for at least 10 minutes with a microwavable gel mask (it has to be as warm as you can tolerate without being unpleasant)
* after that, massage your meibomian glands using your index finger (you can really put some pressure on the lower glands as long as you don't put pressure on the eyeball)
* after that, lid margin hygiene using q-tip and a specially designed cleaning solution (don't use baby shampoo for that!)
* take at least 3 grams of omega 3 fatty acids daily (this has also numerous positive side effects for your health, including improved mood)
* take ciclosporine permanently (instead of using the over-priced Restasis you can buy Optimmune - it's also 0.05% ciclosporine but only approved for use in dogs - you may find that weird but it's much cheaper and at least as effective as Restasis - the dry eye expert I go to recommends it)
* try AzaSite or Azyter for one month and see if it helps (azythromycin has been found effective in several studies lately)
* use high viscosity artificial tears (I don't know what is available in the USA but you can ask Rebecca for a recommendation)

All of these work synergetically so each component is important. After 1 month your eyes should at least a little better and after 6 months your eyes should feel a lot better.

Also, you absolutely must visit a dry eye EXPERT if you don't do that already. Even if that means you have to travel a couple hundred of miles twice a year or so. I do that and it's worth the effort. As you have probably found out already, the average opthalmologist doesn't know **** about dry eye.

[Guest]

Hi Weteyes![/COLOR]

* lid hyperthermia twice daily for at least 10 minutes with a microwavable gel mask (it has to be as warm as you can tolerate without being unpleasant)
* after that, massage your meibomian glands using your index finger (you can really put some pressure on the lower glands as long as you don't put pressure on the eyeball)

I've been doing the heat/gland expression thing religiously twice per day since about October... it seems to help, since my eyes feel better for a while afterwards

* after that, lid margin hygiene using q-tip and a specially designed cleaning solution (don't use baby shampoo for that!)

I've been using TheraLid cleanser for several months now... it's made by the same company that makes Theratears... seems to be a decent non-irritating cleanser for the lids, although I have to use it on closed eyes. I've never had redness or crustiness on my lids or lid margins..my lid issues seem to be stricly to do with the MG's not secreting proper oils... so the heat/expression definitely helps with that!

* take at least 3 grams of omega 3 fatty acids daily (this has also numerous positive side effects for your health, including improved mood)

I've been taking fish oil since last summer... and a high potency one (4grams of omega 3's per day) for several months now

* take ciclosporine permanently (instead of using the over-priced Restasis you can buy Optimmune - it's also 0.05% ciclosporine but only approved for use in dogs - you may find that weird but it's much cheaper and at least as effective as Restasis - the dry eye expert I go to recommends it)

Been on Restasis 4 times daily since the beginning of November 2009... so far, my doctor doesn't want to prescribe a higher concentration for me, but I'll be trying to talk him into that in the near future, I think

* try AzaSite or Azyter for one month and see if it helps (azythromycin has been found effective in several studies lately)

Not available in Canada yet... not sure if I can get it via the Special Access Program or not... will have to look into that though, as I've been wondering if Azasite might be helpful to me.

* use high viscosity artificial tears (I don't know what is available in the USA but you can ask Rebecca for a recommendation)

Yup... got this coverred as well

All of these work synergetically so each component is important.

I couldn't agree more! I feel like every little thing that I've been doing has helped a bit, and all of that adds up!

Also, you absolutely must visit a dry eye EXPERT if you don't do that already.

I've found a local doc who has been wonderful to me so far. He's knowledgeable enough to know all of the standard treatment protocols, and humble enough to admit when he doesn't know something. Also, he's receptive to ideas that I bring forward, which is great, since he's the guy who needs to ultimately write the prescriptions! Not saying he's a pushover and will do anything a patient asks, but if it's reasonable, he will for sure consider it!

[wetEyes]

SAAG, you should be able to get AzaSite (1% azythromycin, approved in the USA) or Azyter (1.5% azythromycin, approved in Europe) through a so-called international pharmacy. For example, in Germany we can get medications from the USA that are not approved here.

Another thing you might try is a liposomal 0.5% ciclosporine solution which is compounded by pharmacy in Germany. It's patented and a guy I know who's the head of a dry eye self-help group says it's much more effective than the overrated Restasis. He is sending it to patients he knows who live in the USA and Canada. He says it has made a marked difference for their eyes. That's why I'm starting to use it now. If you are interested, I can give you his e-mail address.

Also, what are your TBUT / Schirmer values? How have they changed during the past months / years? Please be as specific as possible.

[Magna]

Hi SAAG,

I had lasik and get dry eye (should using drops every 30-45min). My vision is not 20/20. I didn't want to do correction. When in sunny day, i feel dizzy and my vision is yellow, like old movie. I am so scared, my vision is totaly different from before.

Do your eyes can see 20/20 right now? Do your eyes had any other complication such as yellow vision, beside of dry eyes, neuropathy?

I read almost all your post. But i cannot find what is your currently treatment of your eyes?

Any suggestion is appreciated.

Thanks & Warm regards

[Guest]

Magna I use Restasis 3 times daily when in the humid tropics (60-80%+ humidity), but 4 times daily if I go back home where there's anywhere from 30-50% humidity.

I use Refresh Celluvisc for daily lubrication as needed.

I use Bion Tears to get my eyes open when I wake up after sleeping (unlike Refresh, Bion Tears doesn't burn for this purpose).

I use Genteal Ointment (discontinued, I don't use the Gel) to keep minimize irritation from dryness while sleeping, combined with a sleep mask to minimize drafts affecting my eyes.

My vision is still good, although my astigmatism in my left eye has worsened over the years... probably unrelated to the dry eye, but who knows...

I use moisture chamber glasses to protect my eyes from drafts/wind.

Try not to be scared... take it one day at a time. There are always ways to cope, even if we don't want to take those measures (i.e. resting our eyes more etc.). Hang in there!!

Also, regarding WetEyes question from 2010, in case anyone else wonders - I don't bother tracking my TBUT or Schirmer's - I only track how my eyes feel and how much they restrict me from doing things like a normal person. If I can tolerate more computer time and my eyes feel and look better, then I figure I'm doing something right as far as treatment goes. If not, then I know I need to fiddle with my treatment regime and/or lifestyle factors to get back on track. TBUT and Schirmer's are often unreliable when it comes to determining how bad your eyes feel, so I don't bother asking about them. My doctor sometimes tests my TBUT, but I couldn't care less about the results to be honest

(P.S. I'm not around the forums often anymore, so if anyone reading this has followup questions, I may not see if for weeks - so sorry! Anyhow, I've posted a lot on here, so if you do a search for my username you'll find what I know.)

[farmgirl]

Hi SAAG: Good to see that you are still in the land of the living. Are you still living in the tropics? I have missed your wisdoms on the forum. Stay safe and stay warm....cheers....F/G

[Magna]

SAAG Thank you for your reply. Very glad that you still around.

I use Refresh Celluvisc for daily lubrication as needed.

How often is as needed for you? Every hours or two?

For me, I use Refresh Plus every hours, also with autologous serum 20% every hours.
So, I put drops every 30minutes. I already doing this for 2 months, still doing this until now.

I have 4 temporary punctual plugs .

I use vidisic gel while sleeping.

Using Moisture chamber all the time (ziena and custom handmade)

Lid hyperthermia twice daily.

Take Flaxseed oil omega 3,6&9 1g daily

Take Multi Vitamin B, C, Magnesium Oxide 1 tab daily

Take Doxycycline 2 capsule daily

My vision is still good, although my astigmatism in my left eye has worsened over the years... probably unrelated to the dry eye, but who knows...

Do you ever had halo, starburst, glare?
Do you have another complication beside dry eyes?
How about your cornea thickness after surgery?
Do you get HOA (high order aberration)?

I have all of them complications, from halo, starburst, glare, burning sensation, sandy feeling, my vision is blurry.

I am very appreciated if you can share.

warm regards