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could my doctor be wrong about my corneal neuralgia?

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  • could my doctor be wrong about my corneal neuralgia?

    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

  • #2
    Hi. I have had my opthmalogist say to me plenty of times that may symptoms don’t match the signs. She says my corneas are reasonable but I am in such discomfort. My lioview was 70 and 100 is normal. I think I must have neuralgia too. 40 is very low but your tear break up time is good. Lots of us on this site are still trying to understand more about these condition.its very complex.

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    • #3
      My doctor a dry eye specialist kept telling me I had neuralgia because despite all my treatments I will had stinging and burning but my eyes looking good. The fact of the matter is that I have severe MGD. After a year of trying everything I have been able to eliminate the stinging and burning so no neuralgia just severe MGD. Like the other poster shared this disease is so complex. A neighbour has stage 3 MGD and minimal symptoms. Wears full eye make up and contacts. What are your symptoms and what have you done to treat them? I’m my experience this disease takes a lot of time and effort to get under control.

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      • #4
        the best way to address to neuralgia issue is to see neurologist. The issue you will encounter is that, if it something they dont usually treat like neuralgia caused by diabetes. They won't believe you.

        The best neuroligist that's really open minded help me treat my pain issues, which seems simlar to yours is dr norman latov in NYC.

        the second issues is some pain meds are off label
        things that worked for me is klonpin and cymbalta.

        klonpin you need to get from psychaitrist.

        cymbalta is approved to treat neuralgia.

        if its neuralgia, and the pain meds work. ( this requires experimentation with you and your dr) the pain will go away quickly.

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        • #5
          lyrica can also be used.

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          • #6
            Hi Avocadoeyes.

            How are you doing now?

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            • #7
              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.

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              • #8
                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?

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                • #9
                  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.

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                  • #10
                    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

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                    • #11
                      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.

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                      • #12
                        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.

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                        • #13
                          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!

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                          • #14
                            Originally posted by Alix View Post
                            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.

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                            • #15
                              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.

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