Corneal neuralgia

[Micha]

Hello!

I'm a young guy from Switzerland (33 years old) and I do already apologize for my english . I'v got a long history of dry eyes. They began when I was 17 years old, and I received all possilbe treatments, without improvement.

I do have only middle-strong dry eyes (bad tears quality and quantity) and my cornea is intact. However I do have strong and chronic pains.

Only recently, I found a really good ophtalmologist, one of the top dry-eyes-specialist in Switzerland.

Now: The suspicion that we have, is that the real problem is a corneal neuralgia. This mean that the corneal nerves are hypersensitive. This could be a reason for the pain AND for the dry eyes.

To confirm this suspicion, a examination with a confocal microscope is planned. The hope is to find a anomaly of the nerves.

I am being treated with paine-medicine too: opioids and Gabapentin (neurontin).

Now, what I am interest in is:

Do somebody have experience with this diagnosis (Corneal Neuralgia)?
Can someone tell me more about it? Some positive experience?

Thank you

Micha


PS: a very intersting article about this issue is

"Corneal Pain withous Stain: Is it Real?" Perry Rosenthal, MD,1,2 Inna Baran, BSc,1 Deborah S. Jacobs, MD1,2

If someone wishes it, I can send him an electronic version.

ABSTRACT Clinicians often encounter patients who report
corneal pain suggestive of dry eye disease, yet lack equivalent
signs. These patients represent a diagnostic and therapeutic
challenge that is more easily dismissed than addressed. We
review the physiology of pain and the pathophysiological
mechanisms of neuropathic corneal pain and speculate on
the mechanisms of certain etiopathogenic triggers, such
as LASIK, severe dry eye disease, and Sjogren syndrome.
Recognizing corneal neuropathic pain as a disease in its own
right is the first step toward developing more effective treatments
for these severely disabled and presently inadequately
served patients.

KEY WORDS Cornea, corneal neuralgia, corneal sensitivity,
dry eye, LASIK, neuropathic pain, neuropathy, pain,
sensitization, Sjogren syndrome
“

[Hopeful2]

Hi Micha,

There have been other posters on DEZ who have been diagnosed with corneal neuralgia. From what I understand, long term dry eye can cause damage to the corneal nerves. Although similar damage can occur from: surgery, chemical reactions, burns. . .

Yes, confocal microscopy is a method for assessing the status of the nerves. It can show for example, how well the nerves have reformed after lasik surgery. I don't believe that confocal microscopy can identify how well the nerves are functioning. So it is possible that the nerves appear fine, yet they may not be sending appropriate signals. So someone with dry eyes, might be producing a 'normal' level of tears, with no obvious staining, and still feel that their eyes are dry and or uncomfortable.

For more information, I type 'neuralgia' in the DEZ search box. You can see some of the treatments that others have tried to cope with neuralgia.

Glad to hear that you have found a top notch opthalmologist!

[peter56]

Grüezi and hallo to Zürich!
Ein Sicca-Spezialist in Züri?
Ich kenne nur Prof. Früh - Inselspital, Davin Goldblum in Basel und Dr Eberle in Emmenbrücke. Aber richtige Experten gibt es ja nur 2-3 in D. oder?

Regarding the corneal neuropathy you may refer to the latest article from dr. Perry Rosenthal in the jan issue of Ocular surface.
This article I can send to you as a PDF.

In many dry eye patients, there is always the question, what was first, the egg or the chicken.
There are some simple tests to make the differential diagnostik and only the patients can perform these tests.

There are a few hundred extremly thin nerves in the corneal stroma. These nerves do belong to the neuronal tears reflex arc - system.
The reflex system does control the watery tears production and also control a little bit the meibom production. An inflammation of the corneal-stroma means that the functioning of the nerves is reduced or put totally out of action.
Then the tears are coming only after intensive stimulation like crying.

If the tear film on the cornea is not very stable, the upper eye lid does move smoothly over the cornea. Every blink - rubbing is causing a mechanical impulse - microtrauma onto and into the cornea, like dr. scheaffer Tseng calls it. Like a very soft beat with a hammer. The whole globe does move and shakes.

In healthy eyes there are about 4 million blinks in a year, so a lot of traumata and irritations in dry eyes that do increase the inflammatory process. So the vicious circles is going on and on.

So some questions:
Does the pain go away during sleep,
does the pain go away after the eyes are being closed,
how many minutes after the eye closure of the eyes the pain does go,
does the pain ease off for a certain time right after the instillation of artif tears or ointment,
does the pain increase in a warm dry, windy environment,
does the pain go away after a soft or a scleral lens has been inserted,
does the pain increasse after frequent blinking if there is a MGD etc.

So first it must be excluded that the dry eye does cause the pain. In dry eyes it will be very difficult diagnosing a corneal neuropathy.

By the way, I do know 3 ladies in switzerland, that also do have this permanent pain during day time!

Peter

[Bill Sonoma County]

Pain without Stain

Micha,

Congratulations on pursuing treatment aggressively. In this disease, you are perhaps your own best advocate, so keep working forward. You write nice English also.

I received a diagnosis of corneal neuralgia from one ophthalmologist, and of course read all the articles that I could. I believe, as perhaps you do, that there is an element of nerve dysfunction in most cases of prolonged, severe DED pain. In my case, it appears that the preponderance of pain was not neuralgic, but even if a small element of our disability is due to cranial nerve or higher order central nervous system processes, we should explore all avenues. But these avenues must include optimizing the corneal tear film unit. I am afraid that sometimes ophthalmologists, for lack of any better diagnosis, place their hopes on a novel diagnosis such as corneal neuralgia. And if in doing so, the corneal tear film unit does not receive enough attention, their efforts will be misplaced.

Please update your status after you have had evaluation with the new physician. Best wishes, Bill

[mgshutterbug]

Have corneal neuralgia too

I have the diagnosis of corneal neuralgia in my L eye. Mine is the result of a botched neurosurgery on the L. trigeminal nerve for something else (not eye-related). The nerve branch going to the eye was the most heavily damaged, and I have had severe DES in that eye every since (surgery 1 1/2 yrs ago). Because of the damage, the lacrimal glands secrete very little. I would guess the goblet cells aren't doing their thing either. I have MGD as well, and EBMD, which is a type of corneal dystrophy. The neuralgia causes constant sensation of foreign object in eye, pain, severe photophobia. All that together results in one very dry and super uncomfortable eye. I have blurry vision both from the DES and the EBMD. I also have recurrent corneal erosions, RCEs, which became chronic after the neurosurgery, and for about 8-9 mos. afterwards. Then I had a delightful period of 6-8 mos with no RCEs.

Starting about 3 weeks ago, the erosions returned. No idea why. Maybe just because I'm a yr older, almost 61, and our eyes get drier with age. Anyhow, it was back to the ophth 3 weeks ago. At that point, she said corneas of both eyes were in poor shape, but the L eye was much worse, with erosions, not just abrasions. So she applied a bandage contact lens (BCL) to the left eye. That BCL was horribly uncomfortable, and dried out so much I couldn't see out of the eye most mornings. AFter a week I returned, and she put in a different brand (OASIS) BCL, and it is much more comfortable during the day. At nite, it is drying out also, but less than the other lens did.

I told her today that I have Tranquil Eyes goggles, but was afraid to use them at nite because they fit pretty closely over the lid. She said to try it again, make the fitting looser, and she thought that would help keep the moisture in alot overnite. So I'm going to try to use them at nite again, will let you know how they work. The cornea is healing in both eyes with using Muro 128 drops x4/day again, and non-preservative tears. She has me on Restasis, but I don't expect they're making any difference. They didn't before. I put gel in the L eye at night (the one with the BCL), and ointment in right. I may only have to wear the BCL 2-3 more weeks. So that's where I am with all of this. My ophth said she thinks I'm a good candidate for sclerals in both eyes. But we have to jump through some more hoops before the insur. co. will pay. It'll take another 4-6 mos. to do that, must use Restasis longer than 3 mos (which I'd done before), and 4x/d.

I also take Gabapentin (neurontin) which helps decrease pain from my eyes, and also from lyme disease.

I'm very very glad you have a great ophth, that's super! It's taken me 1 1/2 yrs to find the one I just started seeing. She appears to have a pretty good handle on all of this, but I reserve judgment until I get to know her better, and until I see the outcome of whether restoring my cornea to as good health as is possible with BCL, Muro, etc., will result in cessation of further RCEs. So many on this forum are in perpetual search for a good eye doc. And as Rebecca has said before, no one doc is likely to make us completely happy, meet all our needs, be knowledgeable, and compassionate.

[jenny2008]

with this corneal neurolgia are you in constant pain that never subsides or does it come and go?? i have sjogrens which comes and goes--my eyes always feel different then they used to be at times are more severe then others esp my left eye=its my bad eye. i have mgd too.. just curious!

[mgshutterbug]

Jenny, at this point, there's a constant low level of pain (3/10 which never subsides, and intense pain when exposed to wind, or to cold, or when my eyes are dry. I have pain even with "gentle" breezes, which is why I wear moisture chamber glasses all the time. Heat dries my eyes out quickly, that causes considerable pain. Any time my eyes are dry, the pain level goes up significantly, depends on level of dryness.

Bright light causes intense corneal pain. I cannot go out without a wide brimmed hat, and if it's really sunny, I can't stay outside. Too painful. So...my eyes are most comfortable when I'm inside, wearing my Moisture chamber glasses, and I haven't stared too long at the computer or book, and have used my non-preservative tears within the last 15 minutes.

Just walking down a hall, say in a business or hospital, will dry my eyes out. I am pretty much an indoor person now - and I had been a real nature lover, was always outside in the woods, or gardens, or by water. And since I have neuropathic facial pain, breezes and cold, and touch, cause intense pain in my face. I'm scarce when the weather is cold and/or breezy. You won't find me enjoying a new fallen snow, flying a kite, they're just activities I can no longer do.

Does anything in particular trigger your pain? I'm so sorry that you have all this to deal with.

[buntbean]

I've posted on my diagnosis as well. I didn't have anything wrong with my eyes until the day the neuralgia started. The severe dry eye started slightly after the neuralgia. I was told that it's possible the nerve disfunction causes the tear glands to stop producing tears. I also take neurontin, and cymbalta for the pain. There are days I only deal with the discomfort/pain of dry eye and then there are times the nerve pain kicks in. It can last hours or weeks at a time. It is disabling and depressing. I tried the Sclera lenses but the edges felt like razor blades to me. They used the confocal microscope to look at my nerves and found that they had branched out, thus forming more pain receptors. I'm at 7 yrs 8 months with this. One day at a time!!

[buntbean]

Jenny,
Mine comes and goes. I've been tested for sjogrens but my blood work is always fine and the biopsy I had 7 years ago didn't show anything.

[Lucy]

I had trigeminal neuralgia after Lasik in Jan. 2000. For 9 straight years, this was my life. No one ever thought much about it but me. 7 years after my botched Lasik, I was diagnosed with Sjogrens disease. Of course, then I pretty much knew the eye thing would probably be mine forever. To cut to the chase, I was put on Lyrica by one of my docs for neuralgia which I have wide spread. Legs, face, etc. After a few months on Lyrica, I noticed the pain in my left eye was less. Putting two and two together, I realized the Lyrica DID HELP with the TN. I still have the TN and it flares at times, but if I keep up with the Lyrica, it's much less pain. Right now, almost 13 years after Lasik, I have an erosion or something on that eye. I'm using RX drops and trying to baby the eye but it's not going away or doesn't seem to be getting better. My vision is gunky because the erosion is right in the center of my eye. I'd like to tell folks that might think they have Sjogrens to be tested again if the symptoms keep up. You can have normal bloodwork one time and a year (or less) later be Sjogrens positive. After you are positive and have the symptoms under control, you can test normal again, but you still have Sjogrens. I hope no one has either neuralgia or Sjogrens, or for that matter dry eyes. Lucy