Anyone Have Corneal Neuropathy?

[LaDiva]

Would like to hear from those with eye pain not attributed to dryness. My eye doctor says my eyes are healed, healthy and not that dry, but they hurt, and I still need to wear goggles most of the time. My doctor believes the discomfort is due to neuralgia. Please let me know if you have corneal neuralgia, and most importantly whether you have found anything to help this situation. I am thinking that maybe my eyes are healed and not dry because of the goggles, and that they are really still dry, but I don't know.

[Phillips55]

there was a poster I believe was named tommyboy who developed corneal neuropathy after Lasik. If remember correctly he got significant relief from topamax or one of the drugs in that family. Topamax and similar medications treat neuropathic pain. It's been awhile since he has posted but I'm sure you can find his posts in the search.

[RFREITAS]

I have been wondering where corneal neuropathy stars and where the dry eyes end...

Have you read this?

http://www.bostoneyepain.org/the-ocu...pain-syndrome/

You also maybe want to contact Dr. Rosenthal, he always reply.

[LaDiva]

Thank you Phillips. I will search for the post, and had not heard of Topamax. RFreitas, that is a very interesting article. Thank you for posting. It is especially interesting that the doctor notes these eye problems may not arise until months and years after PRK or Lasik, which is what happened to me. Fascinating. While reading this, it suddenly occurred to me that my eye doctor did not give me a prescription for Lyrica as it may be covered by insurance if it comes through a primary care physician rather than the eye doctor. Hmmm. Thank you both for your help.

[RFREITAS]

Why your doctor say that you have corneal neuropathy?

If I where in USA I would go for a consultation with Dr. Rosenthal. Also, if your doctor needs guidance he always offers to help.

So you maybe consider send him an e-mail. Also he suggest a diferente approach to the pain...

[LaDiva]

HI RF! The doctor says my eyes are completely healed, and he sees no clinical reason for pain. My eyes have been better the past week, so I am hoping they will continue to feel better. This is why I haven't asked for meds yet. Thank you for telling me about Dr. Rosenthal!

[Irina]

LaDiva, are you on any medication now? Or just hot compresses? I wish your eyes the best!

[LaDiva]

I take Minocycline, and use compresses. No Lyrica yet. I've felt better the past few weeks, so am waiting to see how things go. I hate to take more meds. Thank you for your good wishes Irina! Wishing you the same.

[Phillips55]

Ladiva,
Maybe it wasnt Tommyboy but I swear someone here had success with anticonvulsants. I myself had terrible eye pain at one point that I thought was corneal neuropathy and I found this article at some point that also alludes to anti-epileptic/convulsant drugs. Heres a quote: "But more recently Dr. Rosenthal has used the new antiepileptic drug lacosamide. It has the ability, he said, to modulate overactive pain firing sites even though it has no anesthetic properties, adding credence to the notion that the pain is neuropathic."
http://www.aao.org/publications/eyen...derForPrint=1&

[LaDiva]

Thank you Phillips. Great article! I am feeling like a confocal exam is appropriate. Now to find someone with such an instrument... The pain varies from day to day and hour to hour, but I have it both wearing and not wearing goggles. It is not excruciating, but painful. Thank you again for your help. Going on a confocal search...

[Nina C]

I am new here and have Corneal Neuralgia. I am eager to learn from others. Nina

[LaDiva]

Welcome Nina! I don't know very much at this point. My eye doctor thinks I have Corneal Neuralgia too, but I have not had an examination with a confocal microscope. The doctor suggested I contact my primary care physician and ask for a Lyrica prescription. My eyes have been better the past month or so, so I have not moved forward with this. I take Lorazepam before bed at night, and my eyes feel so much better after the pill kicks in, so I am thinking that the eye doc could be right on target. I just hate to take any more pills than necessary. I read your other post about serum drops. My eye doctor seemed to think that I only need Lyrica as the surface of my eye is healthy. Not sure what your situation is. Do you have damage to the eye surface?

[Bill Sonoma County]

La Diva,

Did you see Rebecca's comment a while back on the failure of doctors to properly diagnose Recurrent Corneal Erosions (RCE)? To me, this ties in to your excellent question. I believe that there are many patients who suffer Dry Eye Disease (DED) pain who are not properly diagnosed, mainly because there are no solid objective findings at time of the doctors' examination. Almost certainly there are patients who have RCE, and present for exam at a time when the RCE has healed. No erosion, no dx. I also believe that there are microdefects in the corneal epithelium tear film complex that are not visible even when those defects are present at time of exam. But nothing is seen on slit lamp, leading to comments like "you don't have dry eye". And certainly, any long-standing pain process is going to modify pain perception at levels above that of the local pain receptor (neuralgia, neuropathy...). Since the aberrant pain processing cannot be visualized, no one can prove its non-existence and it is a candidate for diagnosis. And in some cases it may be perfectly logical to treat for a neuropathic-like condition, in others I think it is last-ditch effort to assign a name to a pain that is not understood.

But the old cliche' of "your eyes look fine, keep doing what you're doing" has probably caused a lot more harm than good and I further believe that a better system would involve use of a patient's subjective scoring of distress to define disease state, to quantify the disease activity and to guide treatment. I think I posted something on this years ago. The combination of your query and Rebecca's comment just brought it out again. Best wishes as I ramble on.

B

[LaDiva]

Thank you Bill. Best wishes to you as well. I agree, and do not think that my tear film is anywhere near normal. Neither is the oil quality. My doctor does use the point scale Rebecca has on this site, but I always answer in terms of how I feel wearing goggles, because I always wear them. Without goggles, the pain scale would be significantly higher.

A bit of good news here: the old Restasis vial caps last forever, and so it seems there might actually be a life time supply for our TheraTears vials! Huzzah! Great hearing from you Bill.

[MGD30]

Has anyone seen a neurologist? I just started seeing one and she seems to have experience with people that have similar symptoms to mine (severe pain as a result of dry eye, even after dry eye was treated). My local eye doctor did not. From what I understand, I'm basically going to be trying different medications that target the nerves (not drops) and see if any work; apparently there is a lot of variability from person to person in what works and what doesnt. She said that for some people nothing works so hopefully I wont be one of them.