Back to Square One

[TARYN]

Hi MGD1701, I guess I wasn't clear, Dr Tseng did detect CCH and said it was mild and left it up to me to decide on surgery.I was unhappy about the veiny cosmetic look and the burning so I went ahead with the surgery. What he also found during the surgery that was adding to my discomfort was the conjunctiva was sticking to my inner eyelid which was causing more inflammation and adding irritation to my eye and eyelid. To answer your question, I could control some of the redness and inflammation in the eye and eyelid with Patanol and cold compresses but the problems were there most of the time. There are so many reasons for CCH. I had cosmetic lower eyelid surgery so that was part of what triggered it. Some people just get it with age.

[Alix]

Alix,

I think you will have a better understanding and appreciation of neuralgia if you read this publication.

https://www.ncbi.nlm.nih.gov/pmc/art...MC5607443/#R48

It is recent and the resources are reputable. You will find that dry eye in itself can cause corneal neuralgia and especially if the inflammation has been going on for a while. Does not mean that everyone who has dry eyes gets neuralgia just that it does happen to the unfortunate few. You can treat the ocular surface but the neuralgia can remain due to malfunctioning nerves and signals.

As far as my cure, sorry there is no cure. I am functional and I have found ways to adapt to my new normal. I do use restasis and artificial tears and still maintain IPL treatments and although my tear film has improved I still have the pain and consistent irritation. And yes I have seasonal allergies which complicates things further.

My doctor has encouraged me to continue wearing my daily disposable contacts to help with the neuralgia and that has worked. In fact it worked for 4 years before my allergies got so bad I couldn't handle contacts. I still plan on going back to contacts eventually. They definitely helped me in the past. I could not tolerate scleral lenses due to debris build up and eyes would get red.

Good luck.

Thank you for the article it is very interesting! The pain in my left eye is getting worse over time, perhaps this is neuralgia brought on by dry eye. The section about scleral lenses reminded me of my conversation with my new scleral fitter who says bathing the corneas properly will calm the nerves which in turn will stop the pain. The anti inflammatory effects of PRP drops is also encouraging.

I am glad you are at least functional now, but I hope you find something to deal with the pain and irritation.

Which daily disposable contacts do you or did you wear which helped with the neuralgia?

[Chemia]

Hi Alix,

You are welcome.

Without getting too scientific and bore you with the details of my eye distress, back in 2009, doctors really did not know what neuralgia was. Only recently it has been gaining recognition. It is real and very complicated. In 2009 the doctor used the term "phantom pain" to describe what was going on with my eyes. He explained it in a way that made sense. You can heal the eyes, in his definition that meant a healthy cornea, but you can have the nerves misfiring.

As far as contact lenses, I was using the one day acuvue moist. I could wear them for 8 hours and they never bothered me. However, I did use artificial tears every 4 hours and was on restasis. Currently my doctor wants me on the one day acuvue with hydraluxe. I am not back on contacts since allergies have been really bad but I will slowly start again.

I am of course not endorsing contacts but they can help protect the cornea and calm the nerves.

[Guest]

Alix,

I think you will have a better understanding and appreciation of neuralgia if you read this publication.

https://www.ncbi.nlm.nih.gov/pmc/art...MC5607443/#R48

It is recent and the resources are reputable. You will find that dry eye in itself can cause corneal neuralgia and especially if the inflammation has been going on for a while. Does not mean that everyone who has dry eyes gets neuralgia just that it does happen to the unfortunate few. You can treat the ocular surface but the neuralgia can remain due to malfunctioning nerves and signals.

As far as my cure, sorry there is no cure. I am functional and I have found ways to adapt to my new normal. I do use restasis and artificial tears and still maintain IPL treatments and although my tear film has improved I still have the pain and consistent irritation. And yes I have seasonal allergies which complicates things further.

My doctor has encouraged me to continue wearing my daily disposable contacts to help with the neuralgia and that has worked. In fact it worked for 4 years before my allergies got so bad I couldn't handle contacts. I still plan on going back to contacts eventually. They definitely helped me in the past. I could not tolerate scleral lenses due to debris build up and eyes would get red.

Good luck.

Please stop telling people there is no cure. I said the same thing so fair enough, you’ve been told that over and over with no relief. So I don’t blame you for believing that. But to say every case of dry eye is uncurable is a false statement. Not to mention dangerous. When you’re in so much pain you can’t see living one more day like that....and someone tells you it’s forever, why continue fighting that battle? I just hate seeing that because if I believed that, I’d still be disabled or worse. If you were speaking about your specific diagnosis then pardon me.

[Guest]

Going to delete what I wrote and mind my own business, good luck.

[Alix]

Hi Alix,

You are welcome.

Without getting too scientific and bore you with the details of my eye distress, back in 2009, doctors really did not know what neuralgia was. Only recently it has been gaining recognition. It is real and very complicated. In 2009 the doctor used the term "phantom pain" to describe what was going on with my eyes. He explained it in a way that made sense. You can heal the eyes, in his definition that meant a healthy cornea, but you can have the nerves misfiring.

As far as contact lenses, I was using the one day acuvue moist. I could wear them for 8 hours and they never bothered me. However, I did use artificial tears every 4 hours and was on restasis. Currently my doctor wants me on the one day acuvue with hydraluxe. I am not back on contacts since allergies have been really bad but I will slowly start again.

I am of course not endorsing contacts but they can help protect the cornea and calm the nerves.

Thank you for the info. I've tried these as well other soft contact lenses but I cant wear them for more than 30 minutes unfortunately.

I am looking forward to going to the Vissum clinic, Ive had so many different conflicting diagnoses by top doctors here in the UK in the past 15 months, I need to know what is causing my tear film instability and inflammation.

[Chemia]

Please stop telling people there is no cure. I said the same thing so fair enough, you’ve been told that over and over with no relief. So I don’t blame you for believing that. But to say every case of dry eye is uncurable is a false statement. Not to mention dangerous. When you’re in so much pain you can’t see living one more day like that....and someone tells you it’s forever, why continue fighting that battle? I just hate seeing that because if I believed that, I’d still be disabled or worse. If you were speaking about your specific diagnosis then pardon me.

Dowork,
Hope you are well.

If you had read my previous posts, you will find that I am answering specifically about my condition and cure to Alix since she specifically asked me if I had found the "cure". I am not speaking in general terms but I feel that I have earned an opinion regarding my specific condition since I have had it for over 10 plus years.

As for the word "cure", this is such a vague word. I myself don't use it . I believe in maintaining and improving. With this disease just like any you can improve, regress, or remain in remission. I am being realistic and don't get emotional about my eyes anymore.

In your case for example, you are using drugs to help you maintain a stable condition. I think that's great but definitely you are not cured. Can you manage without the eye drops? Is there a guarantee it will last? You cant answer these questions because no one can foresee the future.

One last thing and without getting too philosophical. I am not looking for the "elusive cure". You learn after several years of this, acceptance and adapting and that's good enough for me.

I have always maintained a good career and comfortable lifestyle throughout this ordeal. I continue to enjoy what life has to offer.

Hey, maybe that's the "cure".