Years of Hell

[Jody]

I had CK in 2001, it didn't do anything for me. Had lasik in 2002. The pain started a few weeks or months later. I have seen over 20 doctors, had my corneas resurfaced, used every eye drop known to man, sat in a dark closet for hours, poured Wesson oil in my eye, taken flax see oil, cod liver oil, fish oil, all kinds of vitamins. I have had acupucnture, hypnotism, biofeedback, cranial sacrial, Jin Yang, used hot and cold compresses. I have gone to bed at 6:00 p.m. just to stop the pain. I never have the pain when I sleep. I wake up in the mornings with my eyes mattered shut. I just found this site and ordered some things. I often wear a patch and/or keep my right eye closed.
I am glad to know there are others who feel like I do. Merry Christmas!

Jody

[Rojzen]

Welcome, Jody. . .You touched my heartstrings big time with your frank account. Just today, I was remembering how I used to patch my right eye, in my first few months of severe dry eye. In that same period, I also had to stop living at 5 p.m., the witching hour when my eyes got so bad it was no longer worth keeping them open.

For what it's worth (and I think it may be worth a lot, once my tale of improvement and a new life is echoed by large numbers of our members), I am long past those very dark days, and functioning well now, despite the fact that my objective condition has not really changed much over the past 9+ years.

What is the state of your corneas right now? I just want to get that issue out of the way, before tooting the horn of any one of my favorite approaches. . .If you feel like sharing more about your ocular health, this will trigger lots of input from members here who have been through a wide range of corrective procedures/therapies. . .Then, we will chime in on symtomatic strategies you may not have tried. . .

If you're up to it, also pls. share what you've purchased from the Shop that represents a new direction for you. . .

One last question: Do you use eyewear protection along the lines of goggles or custom moisture chamber glasses?

Looking forward. . .

[Jody]

That's what I feel like I'm doing, just existing. We have 2 humidifiers in the family room and 1 in the bedroom. Plus I keep cups and bowls of water throughout the house. After the lasik surgery, the doctors I saw told me that my corneas were very uneven, warped and hilly. One doctor said my cornea reminded him of the moon, with the many craters. I found Dr. Steven Maskin, in Tampa, FL. He resurfaced both my eyes with placenta donated by women there who have had c-sections. That was a year ago. But my right eye is still in terrible pain. I think I'm getting agrophobia. I don't want to go anywhere or do anything. I just want to stay safe in my little house. I have a lot of hate in my heart, for the people who did this to me, and towards myself for making the decision to have the lasik. My sister and 2 friends of mine had lasik from the same doctor about the same time and they are all fine! I just don't understand it. Almost all the doctors I have seen said my eyes were and are extremely dry and that they would not have performed lasik on me.
I got the onion goggles today and wore them tonight. I don't know if they helped or not because my eyes were already so sore. I will try them again tomorrow. I also got Dwelle and Dakrina. I do use Occusoft lid scrubs. Every night before I go to bed I pray that I won't wake up. But I always do. So I am angry with God too. If he won't heal me, why won't he just kill me?

Jody

[Rojzen]

Hi, again, Jody. . .I'm grateful for the additional details, and so much of what you're feeling continues to resonate. . .You are going to hear this from many others of us, as the days unfold. . .

I will be writing more, especially about the being indoors, the pain, and the despair, but two quickies, first, if OK:

1) Have you ever been evaluated for Boston scleral lenses?
2) Are you getting any quality care for the emotional issues, and are you open to medications for anxiety and depression? On this second issue, my own experience has been that I've been unable to see my way to any solution until I've gotten the depression and anxiety down to manageable levels. . .I always focus as much on that as on the eyes themselves, and it has worked for me. . .We are all different, but I wanted to pitch this approach to you, and then discuss. . .

Looking forward to hearing back. . .Please always feel free to write to members like me via the private message available here, too. . .

[Jody]

Rojzen, thank you so much for writing back to me. I don't know how to write a private message to you, I had a heck of a time figuring out how to register on this site. Yes, I take celexa every day, it's an antidepressent drug. I also have valium that I take now and then when it gets so bad I am pounding the walls. It's a low dose, 5 mg. and I take 2 or 3.
No, I have not been evaluated for scheras. Rebecca told me about them and I have been in touch with Bill Rosenthal. I am planning on going to Boston if he thinks I would be a good candidate. I'll have to go alone because my husband can't take off work. But I will do ANYTHING to stop this pain. Do you have them? Would you please tell me about them? I'm concerned because I could never wear even soft contacts.
Thank you so much for caring. I am crying as I'm writing this. It means so much to have someone care. I used the night drop last night and the day drop this morning. I will put the goggles on now. I can't see with them on. I hope you have a very nice Christmas day. Thank you again.

Jody

[Rojzen]

Dear Jody - -

I think you need only click on someone's name, either on this message board or in the directory of members, to trigger a menu that will offer you private messages. I'm the sort of person who guards my privacy very little, when it comes to health and self-help issues, but I sense that lots of our members here love to have the private option for some topics. . .

I'm thrilled that you are planning the evaluation by Dr. Rosenthal. . .No one knows more about the Boston Sclerals than does our Rebecca. . .I've never tried them, but if I had greater resources, I would be looking seriously in to them. Intolerance for soft or conventional/corneal rigid gas permeables is not by itself considered a barrier to the sclerals, because it is the very same factors that render one intolerant to regular lenses that may indicate the need for the therapeutic benefits of the sclerals. Dr. Rosenthal and staff will unquestionably cover all this and so much more. Just stick with Rebecca on this, and get up to Boston, even without spouse. I know how hard that is. . .Maybe goggles and other eyewear options, though, can make that trip easier. . .

If you need corrective lenses in something like an onion goggle, I would look seriously into a Wiley, Panoptx, or custom moisture chamber, which you could use as backups even if you get the Boston sclerals. Wiley and Panoptx don't provide very strong prescription lenses, but in a custom moisture chamber, which you can get at Bascom Palmer Eye Institute (by seeing Dr. Angel Perez at the Optical Dept.), and on Long Island, at Woodbury Optical, any prescription is possible. . .These are pricey, and so if your Rx is too strong for a Wiley or Panoptx, a new product called MEGs, soon to become available, we hope, may do the trick at a lower cost than purely custom moisture chambers. MEGs are frames that come with insertable gaskets, into which any lens can be placed. They may hit market early in 2008. The sport glasses like Wiley and Panoptx function like onion goggles, and the customized specs and MEGs are more like glasses with extra plastic cups around the eyes. . .The effect of all of these is to slow tear evaporation dramatically. . .For me, my custom moisture chambers are the only reason I can hold down a job and go outdoors. . .But they're more than that. ..They make me feel normal, much of the time. . .

A propos, burning pain is closely associated with evaporation.. .and so over a period of hours, I think it is possible your pain could dissipate just through use of protective eyewear. . .

Last night, our Calli66 posted something amazing that you may want to consider immediately. . .Wesco, via eBay, is selling sport glasses that fit over prescription glasses, and which have foam cupping around the eye portions. . .These come in smokey tint, yellow, and CLEAR lenses! If you wear prescription glasses, these may be a seriously important tool to keep on hand. . .If you look up Calli's postings, you'll get the URL. . .Write back immediately if that proves difficult, and I'll dig it up. . .The product, by the way, is dirt cheap. . .Lovely! P.S. I have noticed that yellow and light brown tint lenses improve my mood greatly. . .If you can afford multiple pairs of the Wescos, possibly you should include the yellow tints? (:^))

RE: Celexa and Valium. . .I'm glad those efforts are under way. . .If, however, these are not getting you past deeply dark moments, how about adjusting these with your doc? Trial and error is THE ticket with antidepressants. . .

Which brings me to tricyclics: Before I found Restasis, and then FreshKote, my burning pain was pretty disabling, and so I researched how to kill burning pain through systemic treatment. I learned that amitriptyline, the same tricyclic antidepressant that tends to be used for fibromyalgia, can really resolve neurogenic pain, when taken in the right doses. Burning pain can indeed be the result of ocular surface nerve damage. Sure enough, on only 10 mg. of amitriptyline daily, I was pain free, in the eyes, for a long time. Eventually, I did have to go up to about 75 mg/day, but maximum dose for pain control, of that drug, is around 150 mg/day. . .Now other tricylics, such as nortriptyline, tend to cause less drowsiness, but THE tricyclic for neurogenic pain is amitritpyline, hands down. . .These days, Tiagabene, Neurontin, and Lyrica are also in use (I believe all are anticonvulsants) for nerve pain control. . .and both Effexor and Wellbutrin have been studied, and been praised, for nerve pain control. To make a long story short, I would love to see you work with a really motivated doctor to try a wider range of meds that could do better for your mental health AND your pain. . .possibly simultaneously. . .

So what does the Boston scleral appointment look like? And I'm wondering if we have any Bostonians on the site with whom you could connect while you're up there. . .Hmmm. . .

[Rebecca Petris]

Jody, I am hoping and praying for the day when your pain will be under good control and all of life will seem so different than it does now. Many here have been in that dark place where you are and I am confident that you're going to come through this! You hang in there, we are all rooting for you. Rojzen is a wealth of information on so many vital topics for people with an unusually persistent long-term condition. Don't be shy, this is the place to make friends and pick people's brains so that we can all get, hopefully, the information and encouragement we need.

If you need any technical help with the forum (I know it can be very difficult for those who are new to it) then either post in the help desk or email webmaster@dryeyezone.com, or call. Sometimes private messaging or phone is the way to go, sometimes public, and a lot of people do both. An added benefit to public posts is that there are always more people out there watching who can't or don't post and who learn from the discussions.

Hang in there.

[Lucy]

Jody, for night please try Muro 128 ointment. It's available at the drug store without prescription. I don't mean Muro drops, but the ointment. If you are having erosions (and I don't know for sure you are) this might help more than anything.

It's sort of a soft ointment, not stiff like Refresh PM. It's not ideal, but for the worst cases, I'd suggest you try this. You may have to ask the druggist for this as sometimes they keep it in the back. I've 8 years into this stuff after lasik and I still use Muro sometimes (even during the day) if I'm terribly dry and afraid of an erosion. You already have others' best suggestions. My doc said I could use it forever if I need to. I also use drops.
Lucy

[Jody]

Rojzen, I have seen a hypnotist, a cranial sacrial specialist, a Jing Yang (or something) person, had acupuncture and biofeedback. I don't think I need to learn how to manage my pain, I think I need to get rid of my pain! The reason I can't see with the goggles on is that I can't see. My vision was 20/40 in my left eye before lasik. Now it's about 20/60. I can't see out of my right eye at all, don't know what my Rx is but I have a huge cataract. The doctor is waiting till I turn 65 in March and get on medicare to remove it as we are POOR since spending all this money on my eyes. This worries me about the scherals. Is there any Rx put in them. Because if so, I should wait until March to see about getting them, after the cataract is removed. I'm scared about that too as my doctor says my eye may even become dryer after cataract surgery.

Lucy, I was on Muro 128 (or whatever) ointment and drops for a long time. They didn't help. I don't think there is any drop or ointment I haven't tried. Restasis was very expensive and didn't help a bit.
I have been using Tobradex at night before I go to bed. I think it might be a prescription and I don't know how long I should use it but it helps.
I am hoping I will hear from Bill Rosenthal and that I might be a good candidate for scherals which I only heard about 2 days ago from Rebecca.

[Lucy]

Hi Jody-
I've been dealing with the dry eye scene and aftermath of lasik surgery for 8 years now. I had to leave my job three years ago because I could no longer see and the painful routine of my eyes is pretty much as you describe. I also have a patch for my left eye. Ice and Vicodin are my companions for the painful condition. My eyes are closed much of the time. I also had a cataract surgery about 3 years ago on my left eye and it didn't work out because of the LASIK surgery. Instead of being plano (near 0) or a little nearsighted, I came out -4.3 after cataract surgery. I then had the dizziness and pain associated with anisometriopia (different eye RX). I still have a cataract in my right eye, but am afraid to have that operated on because I don't know what to expect.

I also have the Boston Scleral Lens now for two years. If you want to talk about that, I'll do it privately with you over private messages. They are not the answer in every case. In your case (and mine) there is more than dryness. We have cataracts. I think the clinic would see you on a consultation basis, but it would be a huge waste to try and make you a lens if you were having surgery just 3 months away. Your eye will be different after the cataract surgery, and you need to find out how you heal etc.

I am "poor" too living on social security disability. There are several things we have in common and if you want to ask more about my stuff, please PM me. I've also had the debridement done on my left eye and an after cataract procedure with the YAG laser to clear away the darkened capsule left from the cataract surgery. Please know you'll be ok and be able to cope with this stuff. It should be a big boost to know there are more of us out here and we're always available. I'm thankful I never went to Florida for the amniotic treatment because I've watched several friends from here go and none seemed to be better.
Best to you.
Lucy

[Rojzen]

Hi, again, Jody - -Apologies for any misunderstanding regarding pain treatment.

When I recommended treatment with medications dispensed through a pain clinic, in no way was I proposing some sort of "alternative medicine" or purely spiritual approach for "management." Quite to the contrary, I was advocating the use of powerful conventional drugs that have the potential actually to eliminate the sensation of pain, in some cases.

Please trust that I, too, tried all manner of holistic, whole-body approaches, including one form a hypnosis, Jin Shin Do, acupuncture, homeopathy, etc. . .I even attended Novena services at a St. Jude's cathedral, and I am Jewish! (:^)). . .None of these approaches helped, but I did benefit greatly by the drug amitriptyline, and, as Lucy points out, there are other medications that can make a difference. . .

Also, please know that I'm not suggesting pain meds as a substitute for direct treatment of your eyes. . .I'm just thinking it might buy you some quality time to get the intense pain under control while you deal with the cataract, the scleral questions, etc. . .

At the same time, though, because the outcomes of some of our main approaches are so uncertain, controlling pain takes on its own significant role, because such control is a sort of hedge against failures. . .For example, the Boston sclerals have been a godsend for some, but in some cases, a comfortable fit is not achievable with them, be it for anatomical or biochemical reasons. . .Arming yourself with good pain control as you proceed to test options, weighing their costs and likelihoods of success, can be the key to keeping determined and motivated. . .

Anyway, enough said. . .Hope that helps. . .

[Jody]

Does anyone know if anyone has tried to get lasik surgery banned by talking to their senators, legislators, anyone in the political field? How can we stop this???

[Jody]

Since I got on this site a couple of weeks ago I am using the onion goggles, also the ebay goggles, I am putting nothing in my eyes except Dwelle and the other D one. My eyes are not well, but I certainly feel a LOT better than I did before.
I have an appt. to have a cataract removed and then I am doing to Boston to hopefully get scherals. Thanks everyone for all your help!

Jody

[dianat]

Jody,

That's GREAT news! I'm so glad you found Dry Eye Zone. Rebecca is an angel!

Diana

[Jody]

ALL of you are angels!

Jody

[nanship]

Sounds like you are doing better , and we wish you luck on the cataract surgery !