Anyone Have Corneal Neuropathy?

[LaDiva]

Hi MGD,
Please keep us updated on how things are going. I am very interested in what you have to say. Thank you for posting.

[Bill Sonoma County]

La Diva, Yes, this is a good discussion that you started. And MGD, hope neurology treatment is beneficial. Part of the distinction between primary corneal tear film pathology and neuropathy seems to be in the time course of the symptoms. When I had a severe flare of pain in response to a viral conjunctivitis, they tried to tell me it was neuropathy ("everything looks fine, tears, cornea OK") but after a few months in hell, the cornea improved and sx largely abated. That is not the course of a neuropathy. So yes, maybe a pain control specialist/neurologist is a good idea so that we obtain accurate rather than expedient evals.

La Diva, somebody mentioned to me that TheraTears finally corrected the labeling on their boxes. Do you sanitize the restasis caps? I'm still using a recycled maybelline or whatever mascara container it was that I posted.

[LaDiva]

Thanks, Bill. True, and I've been thinking about the pros and cons. I could take Lyrica and see if it helps, or get more info. first. I prefer the latter, although the first would be the fastest, but why take something you don't really need? My eyes have been feeling better, so I am hopeful. This diet thing is a killer, though. Some days I think of cake, ice cream, chocolate truffles...

Initially I was very careful about keeping the restasis caps clean with rubbing alcohol, but have become lazy. Now I clean them periodically. If a vial falls on the floor, I sanitize everything, but haven't needed to be very excessive about cleaning things. I am clean and so are my things, but if I had kids, dogs, you name it, then I might be more vigilant. It must be beautiful over your way. We lived in Santa Rosa years ago and loved it. Sending you good wishes for a pain-free spring. Glad to hear you don't have neuropathy!

[Bill Sonoma County]

Regrading sanitation, you've probably seen this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860184/

Have you tried night time Muro 128 ointment? It supposedly helps corneal cells adhere, or maybe some other action.

[LaDiva]

I had not seen this Bill. Thank you. Guess I will start cleaning the caps regularly again. I used Muro about five years ago when I was having problems with photophobia and mucous strands and didn't tolerate it very well. It caused quite a bit of inflammation.

[Phillips55]

LaDiva,
Have you had an eye test to see if you have any ocular disorders such as strabimus or binocular disorder? It is very easy to miss on a regular eye exam and before I was diagnosed and treated I had unbearable eye pain day and night. That's why I too explored the idea of corneal neuropathy because no one could find out what was causing the pain. It may not be the case with you but I was at a complete dead end for so long and I amazed amazed how a few different treatments no one had considered saved my vision and probably my life.

[Bill Sonoma County]

Phillips,

Do the ocular motility disorders cause the same type of pain as DED--grain of sand, foreign body, burning, pain with lid open/close?

And La Diva, did you try mixing neutral night time lube with Muro 128 oint? Reduces the hypertonicity.

[LaDiva]

I don't know Phillips. I have not heard of those things, but have had PRK, so it is likely to be nerve damage. Will look into the other things you have mentioned. I've been doing pretty well lately, but being very good about food and the rest of the routine. Bill, I don't think that I need ointments anymore, but they were very helpful when I had corneal damage. Night time is not a problem, and I've not used ointments for about four years. Systane was the only one I was able to tolerate. Thank you both for the info. and your suggestions. They are very much appreciated.

[Aaron77]

Dr. Rosenthals explanation of Neuropathic Eye Pain is pretty much right on when it comes to my own personal experiences with eye pain after lasik - I can quote "Invisible And Devastating" from the title along with many points made in the article as my experience. http://www.bostoneyepain.org/the-ocu...pain-syndrome/

3 years ago I visted doctor Rosenthal at Boston Foundation for sight where he diagnosed me as suffering from Corneal Neuropathic pain.

Recently I have been diagnosed with sarcoidosis which can in fact cause neuropathic pain in the cornea - is the sarcoidosis actually what is causing my eye pain, I am not sure...

However this article discussing ARA 290 in the treatment of Neuropathic eye pain as it relates to sarcoidosis patients interests me greatly: https://sarconews.files.wordpress.co...014_ara290.pdf

From the ARA 290 article: "ARA 290 is a unique compound that turns off inflammation and demonstrates the potential to reduce neuropathic pain and repair damaged small nerves."

[LaDiva]

Thank you Aaron. Both articles are great! Dr. Rosenthal says often problems don't arise until several years after laser surgery or PRK, which is exactly what happened to me. I have spoken with a number of people who had these surgeries, and they all complain of dry eye and eye problems several years after the surgery has taken place. The article about sarcoidosis and ARA290 is hopeful. Certainly there are a number of us with inflammatory problems, and I have multiple sites of inflammation. What a gift it would be if that drug truly works, but how long will we wait for the FDA? Wow. Thanks again for two very interesting articles. Best wishes to you Aaron.

[Irina]

Hi Aaron77,
Do you have sclerals? Or Dr. Rosenthals gave you other suggestions how to cope with pain? I've read your previous post, and I know that you had very bad pain. How are you now? I so hope you are better.
Thanks.

[Aaron77]

Hi Irina, the BFS sclerals did not work for me, in fact it was thought that I might have been sensitive to them. Dr. Rosenthal was not able to give me any suggestions that made a difference in treating the pain but he did validate the pain. I am now topically treating my lungs with inhalers for the sarcoidosis and will be looking into systemic treatment with my doctors. I do not know if the sarcoidosis is the cause of my eye issues but it would make sense as the disease can have numerous negative effects on the eyes.

[LaDiva]

Please keep us posted Aaron. All best wishes to you.

[ebel]

Dr. Rosenthals explanation of Neuropathic Eye Pain is pretty much right on when it comes to my own personal experiences with eye pain after lasik - I can quote "Invisible And Devastating" from the title along with many points made in the article as my experience. http://www.bostoneyepain.org/the-ocu...pain-syndrome/

3 years ago I visted doctor Rosenthal at Boston Foundation for sight where he diagnosed me as suffering from Corneal Neuropathic pain.

Recently I have been diagnosed with sarcoidosis which can in fact cause neuropathic pain in the cornea - is the sarcoidosis actually what is causing my eye pain, I am not sure...

However this article discussing ARA 290 in the treatment of Neuropathic eye pain as it relates to sarcoidosis patients interests me greatly: https://sarconews.files.wordpress.co...014_ara290.pdf

From the ARA 290 article: "ARA 290 is a unique compound that turns off inflammation and demonstrates the potential to reduce neuropathic pain and repair damaged small nerves."

Aaron77,
Do you believe that ARA 290 could also help those who suffer from Oculofacial Pain Syndrome, as Dr. Rosenthals calls, but are not sarcoidosis patients?

[Caleb]

I have Corneal Neuropathy going on 4 years now. I've tried Lyrica, Gapapentine, Tramdol, Flexoril, OTC drops, Celluvisc drops, Lacosamide drops, the Scleral Lens, Opioids, Amitryptiline, Nortriptilyne, Verapamil, Tegratol, Cymbalta, Intranasal light therapy

Of everything I've tried the scleral lens provides the most consistent relief. It always reduces at least some of the pain, but never all of it. I've read many patients say the edges of the lens feel like razor blades, but I think this must be attributed to poor fitting because mine fit very comfortably. They do, however distort my vision slightly which can be annoying. Amitriptyline has also helped but to a more random degree. Sometimes it helps a lot, sometimes it seems to do very little. The lacosamide drops only provided me a small amount of relief temporarily, perhaps slightly more than OTC drops. The computer bothers me a lot so I had my doc prescribe me prescription Gunnar computer glasses. These help a bit as well, they reduce eye strain by filtering out harmful light.

Dr. Rosenthal has me currently trying Naltrexone. I've just started taking it so I can't really comment on its effectiveness yet. I've also just started taking Vitamin D supplements based on this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3806705/. We'll see how that goes. Dr. Rosenthal also mentioned a somewhat risky intramuscular injection therapy that is working well for one patient.