Good news... I think?

[tommyboy]

I saw my OD today (affiliated with my LASIK center) ... this was my 6th visit over the past 6 months (close to 6 moths ... surgery was 09/12/11).

I brought my wife with me and re-read the article on how to prepare for your visit, set goals, expectations, etc.

I have been on Restasis for 5 months and my goal was to get off it ... and she said to try stopping it today and see how it goes for a day or two. So I got what I wanted, but I am definitely scared what will happen. I really, really, really want to keep my tear film going "on my own" and get rid of the burning from the Restasis. So I need some prayers from fellow supporters, please!

Two months ago, my TBUT was 5-6 seconds; today she told me my left was 16 and my right was 12. I really do hate being pessimistic, but I simply don't believe her. And I did not tell her that. My left is definitely better than my right (sometimes I feel like simply removing that eye). So, I guess I will see what happens.

I have been wearing my onion goggles all day and still have them on. The fancy 7eye's I had made with custom lenses are being fixed. After they put the new expensive lenses in, they did not fit well (especially on my right eye, the worse eye). So they made a few adjustments and cracked the lens. So they are now re-doing the lenses.... I must admit these $26 onion goggles are a small miracle.

I have a scheduled appointment with another corneal specialist (MD), this will be my 3rd visit (hopefully last visit) on the 17th. So I am hoping his measurements are consistent with my OD's or somewhere close to it.

I also asked my doctor if I had any type of Eyelid Margin Disease (Blepharitis or Meibomitis) and she said no. I told her I was doing compresses with "rice baggies" and she did not know exactly what that was, so I took Rebecca's advice and explained it to her ... and she listened. She told me to keep doing what I was doing.

I also asked if there was any corneal staining and she said no. Lids look good, cornea looks good, tear film looking good.

And she said to keep my lower permanent plugs in ... there are no problems with them.

I also found it a little funny, because she tested my eyes with the chart.... left and right eye. And told me to really try, blink etc... I know they want my eyes to be 20/20 but their not ... and I really don't care. I am fine with my glasses ... I actually like my glasses and just want to put the dry eye to bed.

Lastly, I am seeing a new Psychiatrist tomorrow ... my next goal is to get my head screwed back on and get off the meds I am on.

I want to be on the triumph board.... and I want to help others.

Well, that's my update ... I hope to be back soon with more good news.

Cheers,
Tom

[robster]

16 seconds is a good TBUT, my current TBUT is similar to what yours was 2 months ago. Even 12 seconds is an average TBUT. Are you still experiencing dry eye symptoms at the moment?

[Rebecca Petris]

Tom: Good job!!! It just really sounds like you're taking such great steps taking care of yourself. Sorry to hear about the glasses nuisance.

You know, I've been really encouraged this past year at some of the post LASIK folks that have been able to move into a better space mentally and/or physically within just months, or at any rate in the first year postop. I guess I've gotten used to a longer timeframe 'template' because for many people it really does stretch much longer - but the way some of you are moving through this it is a great reminder that there is always hope for early progress!!

[tommyboy]

Robster - it has only been 28 hours since I am off the Restasis and I am still following my routine (rice bag & scrub, blink every 4 hours and onion goggles all day long). I am actually scared (terrified) to stop wearing the onion goggles. Do my eyes burn ... no, not yet. Do they feel "normal" no... far from it.

My plan is to keep on my regimen including the onion goggles for a couple days. That way I can better gauge the root cause of the burning and if it is in fact tied directly to the Restasis. I want to keep my eyes as moist as I can and if they do not burn for a few days, then perhaps I can conclude the Restasis was either the primary or a contributing factor to the burning.

After a couple days, I will taper off the goggles and if the burning comes back I will see what happens. I have another appointment on the 17th ... which is like 10 days without the Restasis and I will get another TBUT test to see clinically how my tear film is doing.

The weather is getting warmer and my doctor maintains getting through this winter (heat) will make a big difference.

I will keep posting my progress over the next couple days.

I am seeing a new Psychiatrist today to help with the mental side of things...

Cheers,
Tom

[tommyboy]

Thanks Rebecca ... I hope I continue to progress. I must admit I followed a lot of advice from your forum (pain mgmt, etc) as well as from folks on this site. And I cannot thank you and the folks enough for all the help.

I am not worried about my 7eye glasses... it is what it is.

Will keep progress posted and my fingers crossed!!!!!

Cheers,
Tom

[robster]

Good luck Tom the mental side of things can be really tough I saw a Psychiatrist for a couple of months last year because of my eyes and it really helped. I think I'm over the worst of it mentally now if the physical symptoms would go I can get back to living a normal life!

[tommyboy]

Well day 2 with no Restasis .... so far, no "burning". But I have still been sticking to my routine (drops, warm rice baggy & scrub, goggles). I guess so far the "no burning" is a good sign. For the last 2 days my eyes feel pretty much the same without the Restasis, which I keep telling myself is progress.

For whatever reason, the left eye feels much better than my right. It is close to "normal". But the right, is most often blurry - which continues to drive me crazy (literally). It's less blurry when I am wearing my onion goggles and I do look forward to getting my 7eye's back tomorrow (I think) and I hope they fit this time.

Robster ... any tips or tricks you can share to help the mental side??? I saw a really well known and good Psychiatrist yesterday (90 minute session) ... and right now I am 'clinically' depressed and he put me on another medication. What is the trick to stop thinking about your eyes when you are constantly looking through them?

[robster]

I did some CBT at first but that didn't really help. I then talked about my fears that my eyes would be dry forever. Just having someone unconnected to me listen really helped.

In Jan and Feb I took various steps that have helped my mental state improve which were my psychiatrist's suggestion. She said that I should try and do things that I know make me happy and provide me with an "endorphin boost". She also suggested I try Yoga. The results of these suggestions have helped my mental state far more than just talking about my eyes.

The first step I took was to join this website. It has helped a lot communicating with others who know exactly what I am going through.

I also started Yoga. I was very skeptical about it at first but I have found it a great help. It can help a lot with anxiety and is very relaxing. The breathing techniques are very helpful for those bad eye days and I enjoy doing it.

I then decided to do some of the things I did before LASIK that I had stopped doing but to do them in moderation with adjustments for my eyes. I am a big video game player and from Sep until Jan I played on my X-Box once and that ended after 30 minutes due to eye pain. With the humidifier I bought and my newly acquired onion goggles I set an alarm to go off every 15 minutes to remind me to put eye drops in. My eyes still get sore but with the humidifier, onion goggles and dropping every 15 mins(whether I think I need drops or not) it is bearable for about 2-3 hours. This makes me happy and gives me an endorphin boost.

I streamed my PC through my TV, increased the text size and got extension leads for my mouse & keyboard. Sitting 8 feet away from the TV with large text I can now surf the net for a bit without feeling like my eyes are on fire. Finally I bought a Kindle as I am an avid reader and hadn't read a book for over 6 months. Increasing the text size on books allows me to read again without straining my eyes.

Do I read, surf the internet or play games as much as before? No but I am now able to do those things enough to keep me happy. Also by doing less of those things I am able to do Yoga and finally get half decent at playing the guitar.

If you have things that make you happy that don't put a strain on your eyes like listening to your daughter sing or playing a sport do more of it. If there are things that you have stopped doing because of your eyes look at ways of making adjustments so you can do those things again even if only for a limited time.

As far as not thinking about your eyes I still think about my eyes more than anything else. It's just that now it doesn't upset me like it used to as recently as 6 weeks ago.

An example of this - I had upper puncta plugs put in the other day and it didn't go to well. Basically one half of my eye was streaming with tears yet the other half of my eye was bone dry. I was down for a bit then spoke to my mate about it and we ended up laughing about the absurdity of it!

Believe it or not I also find replying to posts on here helps me feel good as it is always nice when you can offer advice to someone. There I admitted it this long post was not an entirely selfless act!

[cafe41]

I have to agree with Robster. Yoga has helped me too. Especially Raja or Yin which involve more meditating and breathing. I still think about my eyes too but don't freak out about every little thing anymore (most days. I read somewhere that worrying is like a rocking chair...it will occupy your time but it will not get you anywhere. The busier I am the better. If I could take a magic pill that had no side effects and could keep me from feeling anxious I would. I don't think it exists (let me know if it does) so I have to except the situation and make the best of it. When I saw a therapist after Lasik I found out she also had Lasik. She told me her eyes started feeling dryer each time she saw me. (I think she was glad when I quit seeing her.) So the power of the mind can definitely mess with you.

[tommyboy]

Thanks cafe41 and robster ... It has been 5 days off the Restasis. And today is my 6 month mark (I try not to think about it as Rebecca advised, but my mind still wanders there).

Today was 78 degrees in CT ... so spring is here early. And the docs said once spring is here it will make a big difference. Really? How?

I had to see my Psychiatrist this morning and then off to see my dad in the hospital who had quadruple bypass heart surgery. Talk about stress!

My Psychiatrist said I am on all the right meds (maxed out) right now and nothing more to do except in patient. At the visit I felt better today. This morning my eyes felt good and moist. It was warm out. By mid day in the hospital with the air conditioning on or whatever the heck was blowing every wear my eyes felt very dry. And I would not wear my onion goggles sitting in the hospital. (I feel like a jackass ... still waiting for my 7eye's which look a bit less hideous, I think)

Then almost 90 minute car ride home. I broke out the goggles. Still wearing them now. And that is why I keep freeking out.

It's been friggin 6 months of hell ... spring is almost here. I think being off the Restasis is good, but now questioning myself. And my head is a friggin mess. I am a grown man, father of 2 kids, happily married and just want my friggin life back.

I am seeing a new counselor tomorrow who deals with trauma and such and CBT ... I really do hope between the drugs, and therapists these doctors can save my life.

It's a real battle at this point ... That's for sure.

Well that's my 5 day brightful update. Hoping for a brighter day tomorrow

[Rebecca Petris]

It's been friggin 6 months of hell ... spring is almost here. I think being off the Restasis is good, but now questioning myself. And my head is a friggin mess. I am a grown man, father of 2 kids, happily married and just want my friggin life back.

You WILL get your life back. And, while I would NEVER wish this mess on anyone, I really do think it's good for kids to see a parent go into a crisis, pull out the stops to get help and tackle it head on, and come out the other end intact... even if it takes a long time. Lays down a useful pattern they may need to draw on later in life

By mid day in the hospital with the air conditioning on or whatever the heck was blowing every wear my eyes felt very dry. And I would not wear my onion goggles sitting in the hospital.

Do you have an old pair of glasses from before LASIK? Sometimes lowtech solutions work really well: Weatherstripping, on the right kind of frame, can be more subtle than the 7Eye/Wiley glasses indoors - & certainly much better than onions. Might be an option for future hospital visits. Hospitals, airports and Walmart are just about the worst places for my eyes.

[Martz22]

tommyboy--I seem to have alot of the same symptoms and struggles as you. I'm trying to get off Lotemax to see if that is possibly causeing all the burning I'm feeling. My dr. says I have "relatively" healthy looking eyes, no staining or MGD, minimal breakup. They just burn like hell all the time and aren't real pretty to look at. I just ordered onion goggles today and hoping they will allow me to spend more than 2 minutes at a time looking at the computer, did they help you read and work at the computer? I know there is alot of info on this site but I can't read much more than a couple of minutes..ugh!

I'm also struggling mentally alot! I saw a counselor that suggested I read the book "Why zebras don't get ulcers". What part of "I can't read right now and it really bums me out" did she not get? I'm Trying to get into a pain clinic that has psychologists on staff, but it's a slow process. Hopefully I haven't poked my eyes out before I can get into see someone.

It's been friggin 6 months of hell ... spring is almost here. I think being off the Restasis is good, but now questioning myself. And my head is a friggin mess. I am a grown man, father of 2 kids, happily married and just want my friggin life back. This is EXACTLY how I feel except I'm the mom of 2 boys 4 & 7. I want my life back as well. I feel like I've isolated myself because of the pain, I do the very minimum which is so not me!!

I have no words of advice, sorry, but I can say that I know exactly how you feel!! hang in there, take one day at a time and try not to look too far out. You will get better!

[tommyboy]

Martz22,

Here is a very quick update...

I have been off Restasis for a 3+ weeks now and the burning is gone. So for me, I conclude the burning (which was often and for long periods of time... hours) was from the Restasis. At one point I was on Restasis and Lotemax ... Lotemax for 2 weeks, I was supposed to be on it for one month, but it simply made the burning worse, so I stopped using it.

I saw Dr. Latkany this past Monday and he told me to stop using ANY drops, that for me they were simply not helping ... doing more harm than good. My left eye feels pretty close to normal, so he said stop putting in the night time gel (Refresh PM) in that eye ... and start using Muro 128 at night in my right eye as he saw some type of abrasion in my right eye somewhere in the upper right hand side and he said this could be a contributing factor to why my eye feels like it does.

He also said, a lot of discomfort can be attributed to neuropthy.

So since Monday, I have not put in any drops in either eye. I use Muro 128 at night in my right eye and that feels great. When I wake in the morning, I do yawn a lot and create a lot of reflex tears in both eyes. My lower lids are still plugged and he may take them out after we see how I do on the Muro 128 ... he only wants to do one thing at a time.

I am still on a bunch of meds for depression (as a result of this experience) ... and I am starting to feel less depressed.

Lastly, I still wear the onion goggles a lot, most of the time. When I am on my computer (like now) I have them on, it is truly the only thing that helps. When I take my goggles off, my right eye bothers me within 20 minutes or less ... sometime I can go an hour, but that is rare.

So.... hang in there as well. As others say it WILL get better. I do TRY and take it day by day... its tough, but there really is not much more one can do than do that.

As far as the reading... ya I agree with you. My first therapist told me to read a book as well.... guess what LOSE that therapist and find another one. Finding the right therapist is the BEST thing you can do. Talk about your problems and involve your husband. I could not get by without my wife (literally).

Feel free to reach out with any questions. I wish you well

[cafe41]

Hi Tommyboy...glad to hear you are improving! How did your "good eye" do without Refresh PM? I would like to stop using it because I think it may be making night time worse but I am scared to rock the boat. Do you wear eye protection at night? Thanks!

[tommyboy]

Cafe41... my left eye... which is my good eye (good in terms of dryness - it does not bother me, which is ironic as this eye is still -1.0 so cannot see as well as my right eye) is fine with no Refresh PM ... in fact no drops or anything at all in that eye.

My right eye is still the culprit. I do not wear any night time eye protection, but I am using the Muro128 at night in just my right eye and it feels great actually at night, and in the morning still feels good as there is residual ointment in my eye.

So in the morning I can go like an hour before my right eye starts bothering me, then I put my goggles on. Last night I went out to dinner with my neighbor and I did not wear my goggles, I just wore my glasses (funny, yes I still need them an am OK with that)... and my right eye bothered me... it did not burn, but just felt like something is in my eye. After about an hour it kind of went away, not sure if I was distracted or what.

So I am starting to play around with wearing my goggles less. I am actually not wearing them now.... but I can definitely feel my right eye. I am wondering if I am establishing a dependency on these googles and if I should continue to "push" it or not?

Any advice? Do you still wear your goggles?