View Full Version : My story
I was both relieved and discouraged when I found this website. Relieved because I realized that I wasn't crazy (in spite of everyone who tells me they have dry eyes too and it's no big deal....just use eyedrops!) Discouraged because I was hoping that someday this would get better. After reading several of the posts, it looks like this is something I'm going to have to live with for a long time, which basically confirms my fears.
Briefly, this is my story:
I started having problems in November, 2005. I've been to no less than 11 eye doctors during the past year. Although I have never been diagnosed with anything other than "chronic dry eyes" due to menopause, I have been treated for cornea ulcers, SLK's, and staph infections. Like most of you, I wake up every day wondering what's in store for me THIS DAY. No one wants to hear my stories anymore because they have NO IDEA when I try to explain to them that at any given time I feel like a piece of glass is stuck in my eye, or I have a lighted match in my eye, or pins and needles are sticking my eyes (sometimes I have all of this pain at the same time). They have NO CLUE how painful it is. And, in spite of everything you read about how many millions of people have chronic dry eyes, no one I know personally has had the problems I have had or experienced the pain I go through every day. I have put so much stuff in my eyes the last year that it can't be good!
Like many of you, I am depressed because I can no longer wear eye makeup, I can't use hairspray, my eyes are red all the time (I watched with envy the other day as someone rubbed their eyes....I used to do that.....now I couldn't dream of rubbing my eyelids for fear I will "tear away the cells" and live in pain for the next week!) I am at the doctor's office every week, which is draining me financially. I can't look in the light...driving in white snow is Hell. I have dim light bulbs all over my house. Someone told me the other day I looked drunk...I am drunk....WITH PAIN!
Currently, I am putting one drop of Alrex in both eyes twice a day. I had been using TobraDex to treat my SLK's, but my doctor finally told me I couldn't use it anymore because it's a steriod.
My questions to you guys are:
Does anyone know a GOOD eye doctor in the Cleveland area who is a specialist with dry eyes? I have gone to a corneal specialist at the Cleveland Clinic who told me to "open one eye in the morning and stare at the ceiling until the other eye waters up...then open that eye and you'll be fine." WHAT!!?? I have to walk to the bathroom with my eyes shut until I can put something in them so my lids don't stick to my eyeballs!
Has anyone had the "scraping of the cornea" done? If so, what were the results (I hear it hurts)!
Also, I just started using a humidifer...are we suppose to use cool air or warm air (I didn't know there was a difference until I went to buy one!)
My every waking hour is spent thinking about this pain and wondering what's in store for me the rest of my life. How can someone have dry eyes when they cry so much!
Thanks for listening and I hope someone has the answers to my questions.
Welcome, darviets. I'm glad you found us. I understand what you mean about the site being validating but also discouraging. However, to keep things in perspective, while many have a chronic condition that has to be managed...
1) People DO get better. Sometimes they post about it, sometimes they just quietly disappear from the board.
2) You may not be able to get free from dry eye but you CAN get your dry eye to a more manageable state than it's in now. Often, this requires a substantial change in strategy. Realistically, you may or may not find a local ophthalmologist who can be an ideal and motivated partner in sorting out the true underlying causes and helping you learn about the full range of tools you may need to get this under control, so there may be a lot of reading in your future but keep your chin up because in time you'll find solutions!!
About your "scraping" question: This can be helpful in some cases though it may carry some risks. Try a bulletin board search on the term "debridement" as I think there are a few experiences posted about it.
Do you have ABMD? Recurrent corneal erosions? Is there anything that was happening during or prior to November 2005 that might be associated with your onset of symptoms? (A new medication... change of environment/work... surgery... unusually sudden or intense hormonal change...)
You sound like you've got pretty severe photophobia. Do you have good protective eyewear for this? Polarized sunglasses? Wraparounds? Some wraparounds (like Panoptx, Harley and others) have foam linings that both help with photophobia and significantly relieve dry eye pain during the day. Some people wear them only outside, some all the time. For many of us, good eyewear is a key part of getting day to day pain down to a manageable level.
You've got a complex combination of condition. You may want to post in the Q&A forum to see if Dr. Latkany has any suggestions for specific treatments to explore further with your local doctor(s).
Hello im pleased youve found this website as i know before i did i felt as if i had no hope im in the same situation as yourself though no way so bad..I cant understand that if youve seen so many doctors they havent found the root of your eye trouble and helped you in any way..keep on looking at this site and hopefully the information and feedback off different folk may help you a bit..I can sympathise with you about friends and family not understanding the pain ive had that myself and still now, only until youve had an eye injury or chronic dry eye can they understand..love cb..let us know how you progress...
Thanks for your responses and encouragement. I will take advantage of this website to learn more about my condition and hopefully, ways to improve it. I already learned about Omega 3 and the humidifer from reading different posts.
Rebecca, the only thing that I can think of that brought on my condition is the hormonal change brought on by menopause. I think it's gotten worse during the past few months because I live in Cleveland and right now I am dealing with dry air due to the heaters everwhere. Although, I visited Florida several times last year and had incidents there too. I really don't know what brings them on anymore.
I believe I have heard "recurrent corneal erosions" in my many doctor's visits. Alot of the doctors I went to were just treating the problem at hand (cornea ulcer, SLK, etc), and not addressing long term treatment or prevention. I have been going to my last doctor since October. All of this is scary to me because I have a history of eye diseases in my family. In fact, my mother is blind due to mini stokes.
Again, thanks for your help. I will continue to read and enjoy my new friends!
I believe I have heard "recurrent corneal erosions" in my many doctor's visits.
One additional thought... In those circumstances I would encourage you to try Dwelle. It's in our own little Dry Eye Shop where we stock various little-known or hard-to-get items and there are samples available. Not trying to go commercial on you, but I mention it because it is inexpensive and I know many, many people with RCEs that were helped by Dwelle when nothing else seemed to help.
hi Darviets - welcome to the boards. I know what you mean about being relieved and discouraged at the same time about finding these board as well. when most of us started going through dry eye syndrome there was no means of support at all so you are actually pretty lucky. I wanted to add my voice of encouragement. Like Rebecca said - people do get better - I'm someone who did - but I bet most people use the boards when they need it and fade away after they are better. I just posted my story recently. I have been meaning to for a while. when I was getting through my latest bout with dry eye - made worse by ocular rosacea, one thing I vowed was that if I made it through to the "other side" I would help others in any way I could. if you are interested, please read my story on how I have successfully dealt with my ocular rosacea (try not to fall asleep, I tend to be rather wordy :-)
Rebecca mentioned the eye drops Dwelle - another great drop you can get on this site is the Dakrina - not only does it moisturize your eyes, but it has a healing effect on the cornea. It was the first eye drop my fabulous dry eye doctor had me use in my treatment and I still use it as needed to this day. it burns a bit upon installation but that goes away quickly. Long story short, different regimens work for everyone. try not to get overwhelmed and I would strongly recommend not using too many things in your eye at the same time so you can figure out what works for you? just my opinion - it is what my doc had me do and it worked for me.
I wonder if one of the doctors on these boards could help you find a good doc in your area? there used to be message boards where people could post their recommendations but I haven't been able to find it. If I could I would put my dry eye doc there in a split second! it might still be here but unfortunately, I don't have a lot of time these days to surf the site.
so, please hang in there and lean on us as often as you need to.
I was sailing through menopause myself, feeling quite impressed with myself that I wasn't getting hot flashes the way my friends were. Well, they got through it, and here I am with chronic severe dry eyes, dry mouth and I don't sweat anymore either. I have also gotten angry with people who suggest I try eye drops, or I should do whatever they did, and if I did, my problem would be solved. This message board has been great for me- misery does love company- except that I probably shouldn't be looking at a computer screen. The hardest part for me is learning to accept this condition. It might get better, a treatment that works might come along. It's happened at a time in my life (52 yo) when I am already feeling middle aged and less attractive, and wearing goggles and feeling in pain hasn't helped my sense of self at all. I do at times rail against it, it's not fair! Sometimes I am closer to accepting it. I don't want to accept chronic pain or being "disabled", but when I do, I am kinder to myself, and the pain bothers me less. I do now take antidepressants and I have a prescriptoin for Vicodan when worse comes to worse. I see a kind therapist. This site has a lot of people and good ideas to try, but I am sorry we are both here!
I felt the same way when I found this site. The tips and the support I have gotten have been so valuable. I am a lasik induced dry eye sufferer. When I found this site it was unbearable the discomfort I was having. I live in Akron but was referred to the eye institute at the clinic. The doctor diagnosed me with blepharitis and told me to have my doctor here prescribe me the doxycycline. I was relieved to get some new perspective but frustrated that I had to go 2 more weeks for him to send his recommendations to my doctor. It was a rather big disappointment.
I am still seeking a specialist and if I have any luck I will be glad to share. It is difficult for me to find a specialist.
Browse the site and try some of the things you find. Much of what has helped me was the things like compresses and drops that others have recommended. I am a long way from where I want to be but better than I was when I came here.
Hope you find relief here.
Thanks, guys, for your comments. I have ordered the Dwelle and Dakrina drops and will try them. I'm just curious....does anyone know what the active ingredient is in these drops that others we buy at the drugstore do not have?
Right now I am just using Refresh Tears, taking Omega 3, Vitamin A and a multi-vitamin. I also bought an expensive humidifier that seems to help at night.
Heather, did you go to the Cleveland Clinic? I saw a Dr. Langston there, but he really didn't offer anything new to me.
Again, thanks for taking the time to send me words of encouragement. I really am glad I found this site!
I have ordered the Dwelle and Dakrina drops and will try them. I'm just curious....does anyone know what the active ingredient is in these drops that others we buy at the drugstore do not have?
They both have two polyvinyl alcohols and povidone. Dakrina is only different in that it has some vitamin a (retinyl palmitate). You will see one or two other tears on the market with PVA and/or povidone, but they bear no real similarity to these ones. A key uniqueness of Dr. Holly's formulations is in the high oncotic pressure, which is achieved with a blending of different grades of the polymers.
By the way, if you ever want to look up the active ingredients of over-the-counter lubricants, you can check our lubricants page (http://www.dryeyezone.com/encyclopedia/lubricants.html) .
hi Darviets - in addition to the omega 3, you might try taking 1000 mg evening primrose oil 2x a day (total of 2000mg) and a tablespoon of flax seed oil 2x a day daily (total 2 tablespoons). seems like a lot of oil, doesn't it?! sometimes I think I should repel water like a duck ;-)
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