desperate suicidal and despondent

[kim]

I suspect that i have dry eyes but whatever it is, my eyes have been playing up for nearly a year now and its just getting worse. Prior to these eye problems I was suffering with other health issues which made me want to give up. I am only a young person who is trying to do his best but these health problems are only making it harder.

I dont know where to post because it seems not many people are helping me or posting much.

I have no faith in the NHS given my previous experiences with them.

The chances are, I will n ot receive the best possible care that my eyes require. I am doing eye drops at the moment but my eyes are constantly stinging now and not only that but who's to say my eyes are not being damaged over time unless I get the right care?

All the doctors do is play a guessing game at our expense.

I am fed up.

[liz56]

Dear Kim,

I am so sorry to hear this. I know how you feel. I went to seven doctors before I got help. They just do not understand what it feels like to live with constant pain in one's eyes. For me, during almost a year of RCE's, I felt like if I left my eyes open for too long, they hurt, but if I tried closing them for too long, they hurt, too. It was a no-win situation, and I felt trapped.

Please hang in there. One thing that I learned is that the eye heals superficially quickly but takes a long time to heal well. I have heard of people trying to live with it for over two years.

It also might help to talk to someone, a mental health professional, or get some anxiety medication. While we are healing, we need to work on our frame of mind.

Do you have a routine? Another thing that I learned is to stick with the routine, even after it starts to feel better. I am pretty certain that I will never be able to go back to a care-free way of living. Every night, I fear that an erosion will awaken me with pain and punish me with poor vision for days afterwards. However, I feel better, and I just stick with the routine.

Hang in there. You are not in it alone. We here know how you feel and are rooting for you!

--Liz

[kim]

no i have no routine but how do i k now its 'healing'? instead of getting worse?

after all i am only using over the counter eyedrops which may actually be doing harm due to the preservatives. On the other hand if i do nothing, that is also going to worsen it right?

So what do i do?

i have read that it can if untreated lead to blindness. and furthermore, some people have lost all sensation on their eye so that even a mild senstion could in fact be hiding a far more serious problem.

[Lucy]

Hi Kim-Stay with us here and allow yourself to ask questions and ask for support. You will not go blind from dry eyes. I had Lasik 9 years ago and then was diagnosed with Sjogrens two years ago. My Schirmers are zero. I have struggled this whole time, but in such a way that I can live a fairly decent life.

You will NOT go that long and I don't want you or others to think you will. i had a double whammy and the Sjogrens made things worse. But, it goes to show you can be ok. I am not blind and I think after 9 years I would be if it were to happen. In fact, I'm on my way to see the eye dr for a new prescription for new glasses. I fell and broke my others.

Do you have, as Liz suggested, a mental health professional you could talk with. A clergy person, friend, teacher, former teacher? Also if you are using eye drops with preservative, you might want to switch to theraTears or something without preservatives FOR YOUR OWN PIECE OF MIND. Please stay tuned here and let us know how you're doing. Ice is a wonderful pain relief over sore eyes. I still use a blue gel icepack wrapped in a washcloth over my eyes. Lucy

[JAH1973]

Kim,

I competely understand how you are feeling regarding the dry eye and other health issues and struggle every day wondering how to get through each day. It is a very tough thing to go through without support from others.

This website has been helpful for me since it reminds me everyday that others are facing similar or worse illnesses. I also go to counseling on a weekly basis which helps me with the coping of this new lifestyle.

Just like you, I hate the fact that my life has changed dramatically and may never be as free as it once was. That is the hardest part to deal with. Each day I remember that I have two children who would be devastated if I gave up. I am sure that you have others in your life who would be just as devastated, so please post as many questions as you like and ask questions regularly. You can learn a lot from those who have been there/done this.

[kim]

Hi Kim-Stay with us here and allow yourself to ask questions and ask for support. You will not go blind from dry eyes. I had Lasik 9 years ago and then was diagnosed with Sjogrens two years ago. My Schirmers are zero. I have struggled this whole time, but in such a way that I can live a fairly decent life.

You will NOT go that long and I don't want you or others to think you will. i had a double whammy and the Sjogrens made things worse. But, it goes to show you can be ok. I am not blind and I think after 9 years I would be if it were to happen. In fact, I'm on my way to see the eye dr for a new prescription for new glasses. I fell and broke my others.

Do you have, as Liz suggested, a mental health professional you could talk with. A clergy person, friend, teacher, former teacher? Also if you are using eye drops with preservative, you might want to switch to theraTears or something without preservatives FOR YOUR OWN PIECE OF MIND. Please stay tuned here and let us know how you're doing. Ice is a wonderful pain relief over sore eyes. I still use a blue gel icepack wrapped in a washcloth over my eyes. Lucy

I suffer from depression already so I am in contact with the relevant people.

Its not only the pain Im worried about. Its the longterm outcome of this.
How do I know my eyes arent being damaged further?
Yes I may be young but I do not see that as an advantage since it just means I will potentially suffer more.

Is there such a thing as the best eyedrops? I have read about the dwelle, are these the 'best'?

[bernmee]

Hi Kim,

I would suggest taht you get hold of the book by Dr. Robert Lathkany called the dry eye remedy. It will give you an idea of the different causes and treatments for dry eye. It will also give you hope that this dry eye thing can be helped.

Many people search for a long time to find a doctor and a routine that helps, and sticking to this routine can make a big difference over the long term. What has your Dr. told you to do for your dry eyes in terms of a care routine?

As for the best drops...the drops that work for you are the best drops. Many people here use Dwelle. I don't fully understand how they work but I have read enough about them and some people here swear by them and because of that I use them. I also use preservative free eye drops for the day and Genteal Gel at night, many people here also use this gel. Taking Omega 3 oils is also very important for the benefit of the eyes.

Please don't think you are the only person out there in your situation. A lot of people who joined this site were in a terrible way at the beginning and are in a much better place now, because of the tips and information from other people along with the care of a great eye Dr. While I don't believe dry eyes will ever go wa if left untreated, I believe for most people it can become very comfortable, but it does involve exploring what works for you.

[liz56]

Dear Kim,

I know just what this anxiety feels like. There is really no way to know for sure what is happening without having gone through it, finding a corneal specialist who can describe what he or she sees, and learning what different signals mean for you.

You are the boss of what you know. We cannot tell you where to draw lines or what to do, but we can relay our experiences and say what works for you and leave it up to you to try. It is hard, but getting control of this condition means getting in touch with what you are going through, even when all you really want is for it to go away so that you can think about your life, just like you used to. I totally understand your frustration, fear, and uncertainty.

Take a breath and spend some time thinking about your symptoms, what is happening, when, and what helps. I think that is a good place to start.

If you are concerned about preservatives, just use preservative-free drops. You also might want to consider Genteal Gel, which has a preservative, but it changes to pure oxygen as soon as it comes in contact with the eye. So, it is pretty good.

Dwelle helps me because I suffer from Recurrent Corneal Erosions (RCE's), and I have a dystrophy of the cornea. Muro 128 5% products (ointment for night and drops for daytime) have also helped me, and it is available at any grocery store or pharmacy.

I recommend writing things down. I kept a log for about 18 months of my experience with RCE's and other eye problems. Keep track of how you feel and what things that you do that help. Then, keep doing that even if you feel better or have setbacks. Develop a plan, and leave room for adjustments. This is a very individual condition, I think from what I gathered reading everyone's posts here over the years.

Keep us posted. Feel free to start a thread or add to this one your symptoms, what you are trying, what works and what does not. It could help you to sort it out, and it might help someone else, too.

--Liz

no i have no routine but how do i k now its 'healing'? instead of getting worse?

after all i am only using over the counter eyedrops which may actually be doing harm due to the preservatives. On the other hand if i do nothing, that is also going to worsen it right?

So what do i do?

i have read that it can if untreated lead to blindness. and furthermore, some people have lost all sensation on their eye so that even a mild senstion could in fact be hiding a far more serious problem.

[kim]

thanks

my doctor just gave me some drops and gel but i am not so keen because they may make things worse?

They are: viscotears and lacri lube.

but i am currently using the rohto for now.

My question is how will i ever find out whether i have erosions?

I cant imagine receiving such a detailed diagnosis over here in the UK the NHS are terrible

[liz56]

Hi, Kim.

Stick with what your doctor tells you, and if you stop his or her treatment, then let him or her know about it. They can help, but they need us to be clear about what's happening on our side.

Symptoms of RCE's are all or some of the following:
1. Awaking with tearing and pain;
2. Light sensitivity;
3. Blurred vision (if the erosion occurs over the pupil);
4. A foreign-object feeling that lasts for a day or more.

Basically, what happens with RCE's is that the cornea's (epithelium) outermost layer (it has five basic layers and two very thin layers that act as bonding agents) does not adhere to the "basement membrane," which attaches it to the stroma, the second layer, which is the big, bulgy part of the cornea. So, at night, fluid builds into the basement membrane, and the eye's outer portion becomes dry. The eyelid sticks to it, and rends it asunder, causing pain and all of the other symptoms above.

If your problems are persisting through the day, and you are not having these sleep-related episodes, then you probably are not having RCE's.

Try writing out your symptoms and when they occur; even post them here. Maybe others can chime in and help you, too.

--Liz

[kim]

Hi, Kim.

Stick with what your doctor tells you, and if you stop his or her treatment, then let him or her know about it. They can help, but they need us to be clear about what's happening on our side.

Symptoms of RCE's are all or some of the following:
1. Awaking with tearing and pain;
2. Light sensitivity;
3. Blurred vision (if the erosion occurs over the pupil);
4. A foreign-object feeling that lasts for a day or more.

Basically, what happens with RCE's is that the cornea's (epithelium) outermost layer (it has five basic layers and two very thin layers that act as bonding agents) does not adhere to the "basement membrane," which attaches it to the stroma, the second layer, which is the big, bulgy part of the cornea. So, at night, fluid builds into the basement membrane, and the eye's outer portion becomes dry. The eyelid sticks to it, and rends it asunder, causing pain and all of the other symptoms above.

If your problems are persisting through the day, and you are not having these sleep-related episodes, then you probably are not having RCE's.

Try writing out your symptoms and when they occur; even post them here. Maybe others can chime in and help you, too.

--Liz

the problem is though any of those symptoms you list could be anything

how do I even know its dry eye?

maybe its more blepharitis?

the stinging gets worse at night, or when sraining them by using the pc.

isnt dwelle sold out though?

[kim]

..sometimes gets better as the day goes on but other days it can be more persistent throughout but one thing which I will repeat is that it invariably seems worse during the night or if i wake up in the middle of the night.

[liz56]

the problem is though any of those symptoms you list could be anything

how do I even know its dry eye?

maybe its more blepharitis?

the stinging gets worse at night, or when sraining them by using the pc.

isnt dwelle sold out though?

You should ask your doctor about your specific symptoms. That's how you know.

Dwelle is out for the moment, but you need to get to the bottom of what is causing your problem before you can find a solution.

--Liz

[lisiamc]

the problem is though any of those symptoms you list could be anything

how do I even know its dry eye?

maybe its more blepharitis?

the stinging gets worse at night, or when sraining them by using the pc.

isnt dwelle sold out though?

Hi Kim,

In the UK we can get Clinitas Ultra 3, a "cousin" of Dwelle - same formula as Freshkote in the USA. I haven't found it at any chemist's yet, but it's available by mail-order from Matheson's and other places. It has helped my eyes a lot, but as Liz says, it's worth getting a diagnosis and some advice from a sympathetic ophthalmologist.

Matheson's has a good selection of PF drops also. (No I don't work for them - just a happy customer! )

Lisa

[irish eyes]

Kim

I endorse what Lisa has said about Mathesons. I buy products from them regularly and they are a straighforward business to deal with.

You might also want to take a look at this site for dry eye products.

http://www.dry-eyes.co.uk/

The NHS have been very good with some of my eye problems but sadly lacking when it has come to Dry Eye & Blepharitis. I find them very dismissive - so much of my `managment' has come about through research, trial & error and sheer persistence. The `one size fits all' approach does not apply to Dry Eye

Professionally speaking - who have you seen to date? When you say that viscotears and lacrilube could make your eyes worse, do you mean they might cause damage? Did you try them? (Sorry if you have already said this in other posts)