could my doctor be wrong about my corneal neuralgia?

[Fenix]

my ophthamologist, who is a dry eye specialist and very knowledgable, insists that i have corneal neuralgia aka phantom cornea etc. he tells me my eyes are healthy and my symptoms are way out of proportion to what i'm feeling.
can anyone with knowledge on this subject tell me what they think?

-i am positive my symptoms come from taking accutane
-from lipiview test i know that my meibomian glands are all intact, they secrete clear oil, BUT my lipid layer is in the 40s in each eye
-my TBUT varies but has been 8/10 in both eyes (
-main symptoms = terrible light sensitivity, and often redness in the eyes. occasion dryness, fluctuates usually they feel fine in morning and worse later in the day

so, i know accutane somehow caused my glands to make less oil hence my low lipid layer, but my doctor claims this is NOT enough to be causing all my symptoms, he says he has patients with much worse oil and worseTBUT who have less symptoms than me so he is certain i have corneal neuralgia.

could he be wrong? is it possible that the decreased quantity of oil alone causes my light sensitivity and bloodshot eyes? i dont know what to do

thank you so much

Hi avocadoeyes , I think to have the same or a similar issue. My eyes seems pretty healty to the doctors (except for some microfollicular hypertrophy inside the conjuntive).
I feel some kind of discomfort (like a very very low pain) all the time, and occasionally dryness. I have light sensitivity, and in the afternoon I can't tollerate even the light in my bedroom. Never took accutane.

Could it be an issue related to nerve pain and bad posture?
See: https://www.drbishop.com/blog/unexpe...and-your-eyes/

After holidays I will see a chiropractic doctor. Maybe he can adjust my back. A woman on a youtube video says that a chiropractic solved her dry eyes.

[Alix]

I'm currently taking Pregabalin (Lyrica) for my ocular pain and it helps quite a bit. I started having pain in my right eye after PRK surgery years ago and the pain is intensified when looking at bright lights or on electronic screens for any extended period.

I started with 75mg daily at night and it was very effective, but if I missed a night or two it would affect my sleep. I've been taking 25mg/day for the past few months and have still noticed quite an improvement in my overall pain/comfort levels as compared to when I didn't take this prescription.

I also have been taking Astaxanthin (12mg/day) for the past few years which has also helped reduce the ocular pain in my right eye. I would look into both of these for any of you out there who have similar symptoms to me.

I have been taking Astaxanthin for about a year now, I can't say it has any impact on my eyes but again along with all my other supplements, I am afraid of stopping taking it in case my eye pain gets even worse.

I've been hesitating asking my doctor for Lyrica for a while now as I am not a big fan of taking medication in general but I will ask him in the new year, the pain is unbearable.

Thank you for the info.

[LindaDawn]

Thank you for your post. I have pain issues in one eye that I intend to get sorted with medication.

[Glucoa]

I'm currently taking Pregabalin (Lyrica) for my ocular pain and it helps quite a bit. I started having pain in my right eye after PRK surgery years ago and the pain is intensified when looking at bright lights or on electronic screens for any extended period.

I started with 75mg daily at night and it was very effective, but if I missed a night or two it would affect my sleep. I've been taking 25mg/day for the past few months and have still noticed quite an improvement in my overall pain/comfort levels as compared to when I didn't take this prescription.

I also have been taking Astaxanthin (12mg/day) for the past few years which has also helped reduce the ocular pain in my right eye. I would look into both of these for any of you out there who have similar symptoms to me.

[Alix]

I was thinking about getting CBD oil and try putting in my eyes, but I have decided not to do this, regardless of the drug screening test, as I'm sure it will aggravate my eyes.

I really can't risk failing this screening test. Once its over I'll look into what kind of medication is available for neuralgia.

[gilles]

I'm not taking any medication at the moment. I would like to try CBD but I'm going to have to take a drug test soon for my new job so don't want to risk failing it!

CBD oil (pure) does not contain any THC, so maybe I am missing something but I don't think you could fail a drug test for it.
CBD is even allowed in many sports (used to be banned in UFC, but is allowed now because it is not a performance enhancing drug but a very effective anti-inflammatory). Source: https://edition.cnn.com/2019/07/25/b...udy/index.html)

On another note, I tried CBD balm (only 2% CBD though, but microdoses might be more effective in some cases, for long use) on the eyelids for almost a month, but stopped doing this routine because the debris can get in your eyes and sting.

[Alix]

I'm not taking any medication at the moment. I would like to try CBD but I'm going to have to take a drug test soon for my new job so don't want to risk failing it!

[LindaDawn]

Hi. Any any of you guys taking anything for your neuralgia.. R us taking anything for your pain? I am thinking of try CBD gummies for my neuralgia.

[Alix]

It sounds like you are on the right path and you are getting good guidance from your doctor.

I have burning pain in my left eye only. My right eye feels normal. But according to the doctors the signs are the same in both eyes. Also both eyes are permanently bloodshot.

[avocadoeyes]

Alix: so I started off with oil deficiency which caused my inflammation which has now caused me aqueous deficiency, according to my new doctor. he said my tear meniscus was very low so that i should try plugs. i brought up the pooling of inflammation to him when he suggested plugs (because I have done enough research to know these things haha) and he said with steroid drop and restasis that the inflammation should be brought down. re the corneal neuralgia, youre totally right, could have both, but i think neuralgia is unlikely in my case. i never had lasik (biggest cause of neuralgia) or any other chronic condition, im 21 and healthy, and my newer doctors said my symptoms make perfect sense with the state of my eyes. do you have actual pain in the eye, or just the dry feeling? as for sclerals, my eyes are not bad enough to need them i dont think, some days they feel normal (and some terrible of course) but being 21 and in med school its hard to settle for anything less than perfect!!

lindadawn, thank you for the encouragement. nice to know other people understand

[LindaDawn]

Avocadoeyes., Thanks for your response. Sorry no improvement. Looks like you have a plan. Just hold on in there. I know it’s very difficult.

[Alix]

Hey there did you get a schirmers test? Do you have aqueous deficiency? The reason I ask is you had lower plugs put in, which only works for people who don’t produce enough tears, not for those with evaporative dry eye which sounds like what you have. i.e. low oil?

I have similar symptoms as yours and was advised against plugs as they would only exacerbate the inflammation. I went ahead with it anyway as it was free and I had nothing to lose (I’m based in the UK here btw) unfortunately the doctor was right and the inflammation worsened so had to have them removed.

Correct me if I am wrong but isn’t it possible to have corneal neuralgia and dry eye at the same time? Corneal neuralgia is not imaginary pain, it is real, it’s just that it is not in proportion to the signs. The doctors I have seen say although my TBUT is low, it doesn’t explain the level of pain in my eye, and therefore think I have neuralgia.

Have you thought about getting scleral lenses?

[avocadoeyes]

Hi everyone, thank you all for your input. I was staying off the forum because it was bringing me down but I saw that I had replies. I have seen 2 doctors who think I do NOT have neuralgia, one said I had very high levels of inflammation and the other said I have a very low tear meniscus, both of which are signs of dry eye and can explain my symptoms. So, I now have lower plugs and am on FML as I introduce restasis, and have booked IPL to start in february. right now things have not really changed, it has only been 2 weeks of restasis so I am trying to stay positive and patient but its getting hard.

[LindaDawn]

Hi Avocadoeyes.

How are you doing now?

[DrHouse911]

lyrica can also be used.