blindness and dry eyes

[kim]

we all accept, I'm sure that blindness is the ultimate worst case scenario.

I am only 24 so its something I fear perhaps more than the pain.

Will dry eyes just continue to worsen over time if you do not constantly keep up to date with treating it, and lead to loss of vision or even blindness?

I just fear what might happen to me next. Cancer? any other serious illness?
I feel that I am just being punished and that its easier to die. That is a last resort 'solution'.

[mlittlem]

Response to Kim

Kim,

I know it is miserable. I am considerably older than you and cannot bear the thought of spending the remainder of my life in this pain and discomfort. You are still so young, so I cannot imagine how devestating this is to you.

I have read as well that this condition can be so unbearable that it causes major depresion and suicidal thoughts. I can attest that all of this is true.

Try to hang in there; I know how difficult it is.

[magoo]

Hi Kim,

I hope you got my pm the other day. I have had dry eyes for forty-one years. I have had several corneal erosions, and almost constant irritation and, in the last few years, pain. But...my vision is about the same as it was forty-one years ago when this started. I have some blurriness from the dryness and irritation, but my basic vision has remained almost the same.

I hope this gives you some reassurance.

Lynda

[kim]

Hi Kim,

I hope you got my pm the other day. I have had dry eyes for forty-one years. I have had several corneal erosions, and almost constant irritation and, in the last few years, pain. But...my vision is about the same as it was forty-one years ago when this started. I have some blurriness from the dryness and irritation, but my basic vision has remained almost the same.

I hope this gives you some reassurance.

Lynda

But is that not because you have received the care that your eyes needed?

At this point I do not know whether I am going to get the right care.

[liz56]

Hi, Kim.

I know that it is hard not to panic. I was really fearful when I developed RCE's. I was in so much pain that I had to keep closing the eye with the erosions, and it made me think that I might lose my vision. I was seeing double or triple, getting headaches, which made me nauseous, and it was a terrible chain of events. I did not want to eat and lost a lot of weight. I was also frightened that I would not be able to function.

To make that worse, while I would waste day after day, lying still, trying neither to sleep nor move my eyes, all I could think about was that I would go blind or be in pain forever. Other people did not see bodily trauma, so they treated me like nothing was wrong. Even my parents who came to stay with me wanted me to walk on a windy evening with them.

So, I completely understand how you feel. When I was in that state, Rebecca helped me by telling me to take one thing at a time. So, I kept asking questions of my doctor, looking for a doctor who could help me, and I had a caring doctor who could not help me but who got me started on the right track by getting me to a corneal specialist. Even though that first corneal specialist was not able to really help me in the long run, he did help with my most immediate need.

Keep trying.

Can you explain the symptoms that are causing you to fear losing your vision? Is your vision currently blurred, or are there huge flashes of light?

Hang in there. It took me a long time to get to the point of managing my eyes, and I know that I am not out of the woods; I am just lucky for longer than I have been in two years.

This is a very difficult condition, because it can be debilitating, and many people do not understand how much suffering we feel.

There is no way to make you not worry, but it is possible to channel your anxiety into tracking your symptoms. You might want to keep a log or journal or chart it out. I just recently stopped my "erosion log" in mid-December 2008, because the erosions had been gone for nine months. It was comforting for me to track it. I made note of the day, the symptoms that day, and the things that I did to make it better (things like using my prescribed drops, using Genteal Gel, compresses, and I even noted when I started using Tranquileyes). When I visited my doctor at my three six-month check-ups, I would give him a copy of my complete log and a chart that presented an overview of the erosion activity. He was kind enough to act like it helped him, but I can tell you for sure that it really helped me.

Don't give up. Keep trying to find answers and treatments that work for you.

--Liz

[kim]

Hi, Kim.

I know that it is hard not to panic. I was really fearful when I developed RCE's. I was in so much pain that I had to keep closing the eye with the erosions, and it made me think that I might lose my vision. I was seeing double or triple, getting headaches, which made me nauseous, and it was a terrible chain of events. I did not want to eat and lost a lot of weight. I was also frightened that I would not be able to function.

To make that worse, while I would waste day after day, lying still, trying neither to sleep nor move my eyes, all I could think about was that I would go blind or be in pain forever. Other people did not see bodily trauma, so they treated me like nothing was wrong. Even my parents who came to stay with me wanted me to walk on a windy evening with them.

So, I completely understand how you feel. When I was in that state, Rebecca helped me by telling me to take one thing at a time. So, I kept asking questions of my doctor, looking for a doctor who could help me, and I had a caring doctor who could not help me but who got me started on the right track by getting me to a corneal specialist. Even though that first corneal specialist was not able to really help me in the long run, he did help with my most immediate need.

Keep trying.

Can you explain the symptoms that are causing you to fear losing your vision? Is your vision currently blurred, or are there huge flashes of light?

Hang in there. It took me a long time to get to the point of managing my eyes, and I know that I am not out of the woods; I am just lucky for longer than I have been in two years.

This is a very difficult condition, because it can be debilitating, and many people do not understand how much suffering we feel.

There is no way to make you not worry, but it is possible to channel your anxiety into tracking your symptoms. You might want to keep a log or journal or chart it out. I just recently stopped my "erosion log" in mid-December 2008, because the erosions had been gone for nine months. It was comforting for me to track it. I made note of the day, the symptoms that day, and the things that I did to make it better (things like using my prescribed drops, using Genteal Gel, compresses, and I even noted when I started using Tranquileyes). When I visited my doctor at my three six-month check-ups, I would give him a copy of my complete log and a chart that presented an overview of the erosion activity. He was kind enough to act like it helped him, but I can tell you for sure that it really helped me.

Don't give up. Keep trying to find answers and treatments that work for you.

--Liz

My reason for fearing this blindness is simply that Ive read about it in a book on dry eyes.
I do keep getting these flashes of light but the doctor could not find anything wrong.


What also makes me fearful is what I read on here. Ther are clearly people who are suffering far more than I am, and I fear that my own condition may quickly deteriorate to the same level as you describe.
In fact it has deteriorated because 3 months ago, it was only at night that i felt discomfort but now it's all day. So there is every reason to panic.

[liz56]

Kim,

With all due respect, there is not reason to panic. There is reason to be concerned, to think a lot about your condition, to seek answers, and to find help. Panicking will not help.

It is true that I lived with problems for a long time, as the condition worsened, and I looked for help. Once it got to be really bad, the doctors were finally able to see the problem.

Focus on your symptoms. Try and understand them by keeping track of them and seeing what helps to alleviate them while you try and find their underlying cause.

This is just a discussion board for patients, and it is not a place to get medical attention. I, and others here, want you to do well, and dwelling on fears will prevent you from improving.

When you say that your condition is deteriorating, do you mean that the pain is so bad that you cannot open your eyes, or that you are losing vision, or that it is blurred or blacked out?

--Liz

[kitty]

we all accept, I'm sure that blindness is the ultimate worst case scenario.

I am only 24 so its something I fear perhaps more than the pain.

Will dry eyes just continue to worsen over time if you do not constantly keep up to date with treating it, and lead to loss of vision or even blindness?

I just fear what might happen to me next. Cancer? any other serious illness?
I feel that I am just being punished and that its easier to die. That is a last resort 'solution'.

Kim, talk of death is serious. If you are having thoughts in that direction, please seek some counseling or call a suicide help line where you live. Here is one such organization. It sounds to me from the tone of your post that you need to speak with a professional about your fears.

BEFRIENDERS' MEMBER HELPLINES

National Associations

Samaritans UK & ROI
National
Contact by: Face to Face - Phone - Letter: - Email:
Helpline 1: 08457 909090 (UK local rate) or +44 1603 611311
Helpline 2: +44 (0) 8457 90 91 92 (UK minicom)
Helpline 3: 1850 60 90 90 (ROI - local rate)
Helpline 4: 1850 60 90 91 (ROI minicom)
Website: www.samaritans.org
Email Helpline: jo@samaritans.org
24 Hour service:

[kim]

Kim,

With all due respect, there is not reason to panic. There is reason to be concerned, to think a lot about your condition, to seek answers, and to find help. Panicking will not help.

It is true that I lived with problems for a long time, as the condition worsened, and I looked for help. Once it got to be really bad, the doctors were finally able to see the problem.

Focus on your symptoms. Try and understand them by keeping track of them and seeing what helps to alleviate them while you try and find their underlying cause.

This is just a discussion board for patients, and it is not a place to get medical attention. I, and others here, want you to do well, and dwelling on fears will prevent you from improving.

When you say that your condition is deteriorating, do you mean that the pain is so bad that you cannot open your eyes, or that you are losing vision, or that it is blurred or blacked out?

--Liz

No, however it is noticeably worse. As I said it used to be that the pain was intermittent but now it is pretty much all the time.

[liz56]

Kim,

Are you feeling like you cannot keep your eyes open without pain? If that is the case, you might want to try moisture-chamber glasses / goggles. They really helped me when I was at a point where I felt as if I could not stand to have my eyes open. I also showered with swimming goggles to keep all water away from my eyes.

If it is unbearable, avoid reading, TV, and computer use for a few days and see if that helps, too. It sounds like your eyes need some time to heal.

--Liz

[odydnas]

Kim, while it may seem that the docs cannot help you with your dry eyes and pain, that is a completely different story from blindness. Most docs cannot seem to help us with dry eyes, or even care...but when it comes to blindness, it you have any chance of developing it, they will do all they can to prevent blindness. Eye docs are trained to help with vision and blindness...not so much pain. Please, do not worry about losing your sight because of lack of care from docs. Instead, focus on trying to find a plan to alleviate your suffering from symptoms.

[kim]

I have two questions:

Will my dry eyes become more painful and lead to a more severe state which could deteriorate my vision?
because as I understand it there are varying levels of severity of dry eyes, so I wonder if it's just a matter of time before things ecsalate.

Secondly I have come across 2 eye lubricants:

www.biologicaqua.com and ''actimist'' by optrex.

Can anyone tell me if they have tried these or would anyone be willing to give them a go?

The actimist is sold in the UK but I havent tried it yet.

[lisiamc]

I've used Clarymist, which appears to be very similar to Actimist. I'm sorry to say it didn't really help me, and it smelt faintly of chip fat from the lecithin in it.

My current favourites are Clinitas Soothe, and Clinitas Hydrate gel for night-time. I also like Clinitas Ultra 3, Genteal gel and Systane (oddly, I like the bottle of Systane better than the preservative-free vials.) I tried quite a few things before I settled on these. Sometimes my eyes are drier than others, and I change around as necessary.

Good luck finding the right drops for your eyes.

Lisa

[kitty]

I have two questions:

Will my dry eyes become more painful and lead to a more severe state which could deteriorate my vision?
because as I understand it there are varying levels of severity of dry eyes, so I wonder if it's just a matter of time before things ecsalate.

Secondly I have come across 2 eye lubricants:

www.biologicaqua.com and ''actimist'' by optrex.

Can anyone tell me if they have tried these or would anyone be willing to give them a go?

The actimist is sold in the UK but I havent tried it yet.

I have not heard of permanent deterioration in vision due to DES. If you learn to manage this disease like all of us have to, you should not lose your vision. I really suggest you focus your energy on learning about DES and how to manage it. I suggest you might order Dr. Latkany's book. Here is a link to it at the US Amazon.com site. http://www.amazon.com/Dry-Eye-Remedy...2416372&sr=8-1