Corneal Neuralgia or what???? (post PRK or LASIK patient).. HELP!

[JohnLegend991]

Hi all,
First, I know it's a long thread, but please bear with me, because I hope we can get an answer for this pain that we have......

I am a senior college student. I did PRK in both eyes in 2016, my left eye is 20/20 my right is 20/30 or 20/40 not sure. but the right is more blurry for sure.
Anyways, So 2 months ago, I traveled to this hot area in the middle east. I did experience very dry eyes. One day, after waking up, I felt this sudden sharp pain with burn feeling in my right eye only. I could not use my computer because of the pain or watch TV, the quality of my life was ruined. I thought it's a dry eye,

so I went to see 3 ophthalmologists back there, two of them said your eye is fine, no symptoms, one said you have a dry eye! and prescribed more and more of drops (Cationorm, Muro 128, systane... etc).. nothing helped.

Well ok! no one helped, so after like a month, I went to back to the U.S., went to see two optometrists, who said your eyes are fine as well and prescribed me a glasses so maybe my right eye is trying to keep up with the other one.!!

in this point I felt really bad.. all these doctors could not figure out what is wrong with my healthy clear eye (my right eye looks healthy with no redness or anything)....

anyways, I decided to stop all eye drops for a month (in this point, my tear film looks very good), and it helped. I can use my computer now. As a senior in college, it did impact my grades and quality of life, because it's a constant pain.
After reading many studies and around 7 ophthalmologists said your eye is fine, I did suspect corneal neuralgia, all the symptoms fit my condition.

First: I found this study about vitamin D3 deficiency and its connection with Corneal Neuralgia (I did start using 5,000 IU of D3 daily about a week ago):
https://www.ncbi.nlm.nih.gov/pmc/art...-0004-0105.pdf

Second: This is the same as above, but with vitamin B12 deficiency (I start using 2,500 mcg daily about a week ago as well):
https://www.ncbi.nlm.nih.gov/pubmed/26266431

Good Article: https://www.eyeworld.org/article-tre...plainable-pain

Note: I found exercise, or doing any sport help the pain. Note2: the pain in the first two weeks was like 9/10 unbearable, but after stopping eye drops and like two months and a half, I would say the pain is like 4/10..... sometimes 2/10....

So for all corneal neuralgia suffers, who did LASIK or PRK, or who did nothing, any help (should I see a neurologist or cornea specialist..etc)? how can I speak with my ophthalmologist about this.. he/she might have no idea what it is? WE JUST WANT TO HAVE "ONE" GOOD DAY. I really miss my self pre PRK with no pain.........

[JohnLegend991]

Please, any one who got treatment? or any suffers... I am planning to see Dr.hamrah, but I live in the NW part of the country any suggest?

[JohnLegend991]

Still hope....... answers! I will start using serum drops very soon.....

[JohnLegend991]

beside doctor pedram hamrah, do you guys know a good doctor?

[icenet]

I would go see a neuro opthamologist or neurologist. I was on Gabapentin and it helped me quite a bit. I may need to go back on it but I was asymptomatic for years until recently. I'm trying Xiidra now.

[PhoenixEyes]

A diagnostic test for corneal neuralgia / neuropathic eye pain is confocal microscopy so could bring that up to the ophthalmologist. It can also be suggested though purely down to the signs and symptoms, it was suggested for me after I had already tried almost everything else available (artificial tears, lubricant ointments, steroid drops, antibiotic drops and ointments, immunosuppressant drops cyclosporine aka Restasis / Ikervis, warm compresses, eyelid hygiene, vitamins, fingerprick autologous blood, etc.) and still experienced pain.

The main treatment option offered was what icenet mentioned above, epilepsy / anti-seizure medication to block the nerve signals from firing so frequently. I also have heard from articles and on dry eye groups that some find amitriptyline (tricyclic antidepressant) helpful. My ophthalmologist has referred me to a pain management clinic to discuss options. My case is kind of complicated though, as I had SJS / TEN I'm a bit more apprehensive than most to start new oral medications. But it's still a consideration, everything has pros / cons.

However there's still a couple other things left for me to try. I'm hoping scleral contact lenses may help. Also still seeing if I can get autologous serum on the NHS (it's difficult in my area, hence starting fingerprick method under advice of my ophthalmologist).

Helpful article on corneal neuralgia:

http://ophthalmologytimes.modernmedi...peutic-dilemma

[ltree]

I do not have corneal neuropathic pain, but I do have severe photosensitivity, and had LASIK previously as well. I am currently on a mission to obtain eye drops made with lacosamide, which sounded promising according to this study:

https://www.aao.org/eyenet/article/a...eal-neuropathy

[JohnLegend991]

I would go see a neuro opthamologist or neurologist. I was on Gabapentin and it helped me quite a bit. I may need to go back on it but I was asymptomatic for years until recently. I'm trying Xiidra now.

Thank you so much for your suggestion

[JohnLegend991]

A diagnostic test for corneal neuralgia / neuropathic eye pain is confocal microscopy so could bring that up to the ophthalmologist. It can also be suggested though purely down to the signs and symptoms, it was suggested for me after I had already tried almost everything else available (artificial tears, lubricant ointments, steroid drops, antibiotic drops and ointments, immunosuppressant drops cyclosporine aka Restasis / Ikervis, warm compresses, eyelid hygiene, vitamins, fingerprick autologous blood, etc.) and still experienced pain.

The main treatment option offered was what icenet mentioned above, epilepsy / anti-seizure medication to block the nerve signals from firing so frequently. I also have heard from articles and on dry eye groups that some find amitriptyline (tricyclic antidepressant) helpful. My ophthalmologist has referred me to a pain management clinic to discuss options. My case is kind of complicated though, as I had SJS / TEN I'm a bit more apprehensive than most to start new oral medications. But it's still a consideration, everything has pros / cons.

However there's still a couple other things left for me to try. I'm hoping scleral contact lenses may help. Also still seeing if I can get autologous serum on the NHS (it's difficult in my area, hence starting fingerprick method under advice of my ophthalmologist).

Helpful article on corneal neuralgia:

http://ophthalmologytimes.modernmedi...peutic-dilemma

That was a helpful comment from you PhoneixEyes. I did discuss the Serums drops with my doctor, but he just kept saying lets start with the steroid drops first and see......... is there a way to convince him... because I've heard that If you do not use the serums drops early (it has been 3 months since I got this), it might get chronic.

[JohnLegend991]

I do not have corneal neuropathic pain, but I do have severe photosensitivity, and had LASIK previously as well. I am currently on a mission to obtain eye drops made with lacosamide, which sounded promising according to this study:

https://www.aao.org/eyenet/article/a...eal-neuropathy

Thank you so much sir!

[PhoenixEyes]

That was a helpful comment from you PhoneixEyes. I did discuss the Serums drops with my doctor, but he just kept saying lets start with the steroid drops first and see......... is there a way to convince him... because I've heard that If you do not use the serums drops early (it has been 3 months since I got this), it might get chronic.

Typically they do wanna start with first line treatments first I think. If the steroid drops aren't helping enough then I would think that would be evidence enough to try something else. Plus long term steroid eye drops have more risks I feel than serum which you could use as leverage. I was on long term steroid drops at first, they have to test your eye pressure regularly and mine went up so I had to go on glaucoma medication to lower pressure, glaucoma drops can be drying and stung me so it was a vicious cycle. Then later down the line I got the cataracts side effect of steroid eye drops and decided to request stopping them. Also it's a lot different in the American health system than the UK health system, I think in the US if you and/or your insurance company are willing to pay for autologous serum then you should be permitted. In the UK I don't really know of anywhere outside the NHS who offers making autologous serum, possibly due to tighter regulations on blood products, so if the NHS say no people either do the fingerprick autologous blood (where you just sterilize finger with an alcohol prep pad, prick finger with a diabetic lancet, and place blood inside lower eyelid) or end up having to go to Spain for platelet-rich-plasma serum.

http://www.moorfields.nhs.uk/news/bl...atment-dry-eye

[JohnLegend991]

PhoenixEyes:

thanks. the doctor gave me ilevro (it cost around $300), but i did notice it contains benzalkonium chloride 0.005% as an inactive ingredient. and in this research it says the benzalkonium chlride can cause corneal neulgria (by reducing nerve density) heres the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5607443/ what do you think?

[PhoenixEyes]

For dry eye sufferers it's always best to get preservative free whenever possible, as our tear film is compromised so little to no barrier between the surface and the preservatives. Some medications it can be tricky as there may not be a preservative free version available, but for most you can get the same eye drop as a preservative free single dose vial. Some multi-dose bottles are also constructed to be preservative free by design (e.g. Hylo Gel). There's an article on this site about Benzalkonium Chloride:

http://www.dryeyezone.com/encyclopedia/bchloride.html

[JohnLegend991]

For dry eye sufferers it's always best to get preservative free whenever possible, as our tear film is compromised so little to no barrier between the surface and the preservatives. Some medications it can be tricky as there may not be a preservative free version available, but for most you can get the same eye drop as a preservative free single dose vial. Some multi-dose bottles are also constructed to be preservative free by design (e.g. Hylo Gel). There's an article on this site about Benzalkonium Chloride:

http://www.dryeyezone.com/encyclopedia/bchloride.html

so is it worth it to talk with my doctor about that? because after I did my PRK, i do have a very thin epithelium, and from the articles it appears that the BAK eats out the epithelium..

[PhoenixEyes]

so is it worth it to talk with my doctor about that? because after I did my PRK, i do have a very thin epithelium, and from the articles it appears that the BAK eats out the epithelium..

Yes it's worth asking.