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  • corneal neuropathy

    So, today I got another diagnosis to my already detected ocular rosacea: neuropathic corneal pain

    I belive this diagnosis to be extremly accurate as I tried everything there is over all these years (having problems since 2011) and I still have burning eyes, sometimes all day long.
    An example of the many, many treatments I already did: IPL, doxy, steroid drops, cyclosporine, warm compresses, cod compresses, allergy drops, azithromicyn, hypochlorus acid, ivermectin and tea tree oil against demodex, lid massage, the list goes on and on...

    STILL eye trouble and üain. So, I finally believe that this doctor found the right cause.

    This is what we did today (on July 25th I will get a confocal microscopy):


    He did instill a drop in each eye do deaden the cornea - relief was there but not fully, so he suspects nerve damage in cornea and also in central nervous system.

    He recommends pain medication for this and prescribed me the following:


    start with Nortriptyline 10 mg and go up to 100 mg a day over a couse of 6 weeks

    when I am at 100 mg a day after 6 weeks, I should do the 100 mg a day for another 6 weeks



    if after 6 weeks with 100 mg no improvement, then I must add Naltrexone
    1,5 mg for two weeks (evening), then 3 mg for 2 weeks, then 4,5 mg for two weeks (eventually reduction of dosis if adverse effects)


    If still no relief, stop taking everything


    Also we will do confocal on 25th July - couldn't be done today as confocal is at the uni and not in his office

    confocal can detect corneal nerve damage



    If corneal nerve damage is there, likely I will be getting serum drops to help repair nerves in cornea and maybe sclerals too (but both are VERY expensive he said and insurance will likely NOT cover the costs)


    I don't know how I can afford it then.


    I am very depressed right now as this disease is realitevly unexplored and not much data about it - also very costly treatments


    The drug nortriptylin was not available in any pharmacy right now - so I can't even begin with treatment

  • #2
    Sounds like your doctor has you going in a good direction. Nortriptyline and Naltrexone can both help with the pain you're having. Nortriptyline is a widely available and relatively inexpensive drug; you should be able to find it pretty easily.

    It's true that both serum tears and scleral lenses are expensive. While some insurances can cover scleral lenses, I've never heard of any insurance covering serum tears, unfortunately.
    What you need to know about computer-induced dry eye
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    • #3
      Hi,

      thanks for your reply.

      Yes, I am very happy that I finally found this expert - he is up-to-date on treatments and has really good knowledge. I got not treated the right way since 2011 - now I have permanent pain thanks to that.

      I have zero staining but nevertheless a burning sensation nearly all the time. I cannot stand wind and any air. If a window is open in a place I immediatley can feel it in the eyes. I have no normal life anymore. Adding to all this, here is the objetive eye data from today:


      OSDI Score: 68

      schirmer: 5/7

      non-invasive but: 8/8
      slit lamp: teleangiectasia on lids, meibomian glands are open but narrow, no staining
      meibography: grade 2 to 3, but no differenceto last year luckily
      tear meniscus height: right eye 0,18 , left eye 0,13

      meibum is clear and good expressibility he said
      pain without stain

      corneal anesthesia test showed improvement but not fully

      diagnosis: ocular rosacea and neuropathic corneal pain
      About the Nortriptyline: You give me hope. Thank you. It still bothers me that I cannot get the drug at the moment. I live in Germany and went to 5 pharmacies. None had it and couldn't order it as the developer has trouble with delivery - none of them could tell me when I can get it. I feel so helpless now because I can't even start with the treatment.

      Thanks for the info on the serum. I really don't know how I will be able to afford all this then but there seems to be no other option.

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      • #4
        if you believe it is neuropathic pain, have u tried autologous serum, or plasma rich platets drops? there's also an experimental IVIG treatment that you might benefit.

        you should also try AMT (Prokera) -- which can help heal your nerves.

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        • #5
          deep_dry_eye, I haven't tried autologus serum yet as we will first do a confocal microscopy test on 25th July and then see how that goes. Likely I will be using serum then and/or scleral lenses.

          I don't know if PROKERA is available in Germany - I noticed it and will ask the doctor on the 25th July. Is ist comparable to sclerals?

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          • #6
            Originally posted by insidious988 View Post
            deep_dry_eye, I haven't tried autologus serum yet as we will first do a confocal microscopy test on 25th July and then see how that goes. Likely I will be using serum then and/or scleral lenses.

            I don't know if PROKERA is available in Germany - I noticed it and will ask the doctor on the 25th July. Is ist comparable to sclerals?
            AMT (Prokera) is a few day thing . Basically amniotic tissue is placed into a contact lens, you then put on the contact lens for a few days. The tissue will be absorbed by your cornea. The theory is that the growth factors in it will help you heal your nerves and corneal surface.

            Autologous serum (and plasma rich platelets) are very low risk and low cost treatments. They're just a bit hassle because you need to keep the drops frozen, and defrost then and keep them refrigerated as you use them. You should definitely give it a try. The theory once again is the growth factors in the serum can help you heal your nerves.

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            • #7
              Just chiming in here to let you know that you are not alone, and I am going through the exact same thing as you at this very moment. I've had dry eye for some time, but it became severe about a year and a half ago. After many failed treatment attempts, I finally found a specialist who diagnosed corneal neuropathy along with the dry eye. We discovered that I was sensitive to the preservatives in normal steroid drops, so it took a few months to finally get relief from specially compounded steroids. Once the inflammation was under control, we started to repair the nerves. I am currently taking serum tears 8 times daily. I do notice relief from the serum tears. I started on nortriptyline (60mg) first, and the side effects were pretty bad. My doctor suggested low dose naltrexone along with the nortriptyline, and it got rid of the side effects and also had an effect on the pain. Currently, I feel that I am better off than when I started this journey. My eyes are still dry, and by the end of the day, I still feel the constant burning. I am going to give this combo a few more months, but I think that sclerals will be the next thing to try.

              And yes, the price is a shock. It is a huge financial strain for our family, but once I realized that this is what is necessary to feel some relief, I just do what has to be done to get my life back.

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              • #8
                @dryinboston: Good to know I'm not the only one going through this. Wish you all the best and thank you for sharing this Information.

                Did you start with the nortriptyline with 60 mg? I should start with 10 mg a day and then increase the dosage every few days. I can imagine that 60 mg may have been to much in the beginning. Did it help with the burning pain?

                I think next thing I will do besides the nortriptyline will be Serum drops. With sclerals I'm not sure as they could damage the meibomian glands even further, and I have already meibography grade 3 which is pretty bad.

                Did they also do a confocal microscopy with you?

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                • #9
                  insidious988, do you live in Germany? What Dr. did you visit and what it's his practice location?
                  Thanks.

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