Ocular neuropathic pain?

[WellEyes]

Hello all,

I have dry eyes and MGD for the last 15 months after upper eye blepharoplasty. I have gone through a lot of treatments etc. According to the "eye exam", the ophthalmologist insists I am now Grade 1 only and my symptoms are not compatible with it. (I am still suffering with burning, pain and severe photophobia). We are wondering if I could have developed neuropathy in addition to my dry eyes.
Does anyone have any experience in this? How did you diagnose it? Is there a way to scientifically measure it and be sure? Because it involves taking another medicine.

Many thanks

[deep_dry_eye]

Give Prokera a try if you believe its neuropathic pain.

[hopeful_hiker]

Give Prokera a try if you believe its neuropathic pain.

I thought Prokera was mainly for people with corneal erosions and other physical corneal problems. I am curious about its benefits for corneal neuropathy.

[diydry]

I thought the same as you, hopeful_hiker so I would be curious if others have experienced benefits for nerve issues. Anyway, this issue of neuropathic pain is a perplexing one to me. My doctors also say my symptoms (which i describe as moderate) are out of proportion with my signs (mild) and are surprised that I report the level of discomfort and effect on quality of life that I do. It's like, maybe I'm just really sensitive to pain or something? At least one doctor does not think it's corneal neuralgia because supposedly those patients have out of control, extreme pain... like can barely open their eyes. But the optometrist who fits my scleral lenses does think I have a degree of neuropathic pain due to the mismatch between signs and symptoms.

Wondering if others can relate and am also curious about the questions posed by the OP about how to measure and diagnose this.

[Guest]

I thought the same as you, hopeful_hiker so I would be curious if others have experienced benefits for nerve issues. Anyway, this issue of neuropathic pain is a perplexing one to me. My doctors also say my symptoms (which i describe as moderate) are out of proportion with my signs (mild) and are surprised that I report the level of discomfort and effect on quality of life that I do. It's like, maybe I'm just really sensitive to pain or something? At least one doctor does not think it's corneal neuralgia because supposedly those patients have out of control, extreme pain... like can barely open their eyes. But the optometrist who fits my scleral lenses does think I have a degree of neuropathic pain due to the mismatch between signs and symptoms.

Wondering if others can relate and am also curious about the questions posed by the OP about how to measure and diagnose this.

ill chime in with my experience...my eyes were so bad for 3 months after my abrasions, I wanted my eyes removed. Nothing helped me...then I found a dr that diagnosed me with MGD and started compress, azasite and lid hygiene. I went from suicidal to feeling just horrible so it was a big improvement...but not good.

so I keep trying different things and NOTHING was helping. I was sure it was corneal neuropathy...until I was finally given steroids. They weren't given to me right away because no one saw the need. Again, signs way off from symptoms. no staining, but insane pain. So I'm finally given the level two dry eye treatments..steroids and restasis and immediately things turned around. I then was able to use a compress properly because we got the inflammation under control. Once I mastered the hot compress things got even better, serum tears, even better...I know it's not nerve damage now. I mean I'm sure I have some, but that's not the cause of most of my pain/negative sensations. My current issue is lagopthalmos...every night I keep my eyes moist, I get even better. I got lucky I found a great doctor...he knew I was sleeping with my eyes open just looking at me and listening to my stories. Hard to find drs like that.

The best way to determine this is with confocal microscopy. I remember asking my dr about the microscope and he said, oh you saw that huh, lol. I said yeah and I can't get rid of this pain. But things got better. Good luck

[deep_dry_eye]

The latest theory is that prokera may help heal the nerves and consequently help with neuropathic pain. I have very little staining and I just did prokera. It's been 2 wks post-op for me, I'll keep you guys posted.

[Guest]

The latest theory is that prokera may help heal the nerves and consequently help with neuropathic pain. I have very little staining and I just did prokera. It's been 2 wks post-op for me, I'll keep you guys posted.

Very curious, please update when you can....thank you!

[Hokucat]

WellEyes, have you been on autologous serum tears yet? These are eye drops made from the serum in your blood. The serum is supposed to be similar to the nutrients and healing properties like your own tears. It is often prescribed for healing and maintaining the cornea and sclera surface, as well as for helping heal damaged corneal nerves. Might be worth it to try them now, even if you don’t get the nerves checked with a confocal microscope.

[diydry]

I'd also love to hear how you found the Prokera treatment once time has passed, deep_dry_eye. This is one of those treatments that I'd never heard of (let alone been offered by any physician) except here on this forum, so it's exciting to think there are other options out there. Ditto with confocal microscope, I'm not even sure where that is offered!

Like Hokucat said, there are studies and case reports on how autologous serum helps neuropathic pain, so this would be a good treatment to ask your doctor about, WellEyes. Dowork123, your doctor sounds incredible. He has confocal microscope AND makes in-house serum drops! And he diagnosed your lago.

[deep_dry_eye]

I'd also love to hear how you found the Prokera treatment once time has passed, deep_dry_eye. This is one of those treatments that I'd never heard of (let alone been offered by any physician) except here on this forum, so it's exciting to think there are other options out there. Ditto with confocal microscope, I'm not even sure where that is offered!

Like Hokucat said, there are studies and case reports on how autologous serum helps neuropathic pain, so this would be a good treatment to ask your doctor about, WellEyes. Dowork123, your doctor sounds incredible. He has confocal microscope AND makes in-house serum drops! And he diagnosed your lago.

It's actually becoming quite popular in both USA and Canada. In Canada, the cost is 1.5k CAD per eye. It's a 5 min procedure. It was said to be very low risk. I only did 1 eye, we're using the other eye as control. However, the dr said it might help both eyes if its a nerve issue.

[WellEyes]

Hello guys. Sorry I was not able to write back for quite a while after I initiated the discussion. Actually I have had amniotic membrane transplant like 6 months ago. I am also using autologous serum for many months. My ophthalmologist also believes that they should help with neuropathic pain.
An additional point to make is that from my understanding, neuropathy can be very complex with various causes just like dry eye. It's like trying to catch air. I believe they make a difference between optic neuropathy following a refractory surgery and corneal neuropathy. I had upper eye lid surgery one and a half year ago but never Lasik or anything and I do not have vision problems. So I believe mine would not be optic neuropathy ?

The biggest challenge in my opinion is to have corneal neuropathy and dry eyes at the same time. Both are real and it's very difficult to detect where one starts and where the other stops. Not to mention that they both fluctuate so I keep doing this tear osmolarity test quite often which now tells me that I have zero tears (much worse than before). I tend to blame Lyrica which I started using 1st of July and since then I saw a very brief initial improvement and only downwards trend after that. I think the reason is that Lyrica started drying my eyes. However I thought that I started building resistance to the drug. Doctors were telling me I was on a very low dose. So I kept increasing the dose. But I kept feeling worse and worse. Now I am tapering off Lyrica. My neurologist suggested trying Vimpat tablets. But well, he has no experience with corneal neuropathy. So I'm crossing fingers.

[farmgirl]

WellEyes, do you have an incomplete blink. Lipiview test will verify that, have you had one done?

[hopeful_hiker]

Check out this report link. It includes and extensive list of tools to address the neuropathy.

As for serum, concentration matters. I personally use 100%. I know some cannot tolerate high concentrations first.

[WellEyes]

Farmgirl, I think I did something like that. I do not believe I have incomplete blink.

[WellEyes]

Hopeful_hiker, I am using 50% concentration. You mean higher concentration helps more with the pain and discomfort? Thanks for the link. Will check