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Post accutane sufferer needs advise

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  • Post accutane sufferer needs advise

    Hi all,

    I am hoping here to get some advise from someone who is in a similar situation since I have no more doctors do go ask for opinion and feel very depressed and hopeless now. I have been on accutane therapy for about 3 months, and one day suddenly started experiencing eye discomfort, in addition to big rashes on the skin on my arms. As advised by derm, stopped accutane same day and was assured my eyes will get back to normal in the 4-6 weeks. However, it has been 4 months now, and my condition has only gotten worse. Have tries OTC eye drops, omega3, hot/cold compresses, LipiFlow, all 4 plugs, Restasis, Probing, and even PROSE lenses. I have seen more than 10 doctors in Boston and New York, and always been treated for MGD and dry eye. Doctors at BFS told me that I have pain without stain, and their lenses did almost nothing to me. They suggested I have corneal neuropathy. Unfortunately, Dr Rosenthal is no longer at clinic and there is seem to be noone who continues his work there. I was suggested to go visit neurologist, but he only prescribed me antidepressants, which I did not start taking yet due to the fear of making my eyes worse. All my blood test and CT scan came back fine. So basically, every doctor tells me i am healthy. However, I feel like my condition is getting worse as time goes by. ANY help or advise would be really appreciated!

  • #2
    I have been using gabapentin for 2 weeks with zero results. Going to try calmare pain scrumbler in RI. Anyone else has any success managing neurological eye pain with meds or any other means?


    • #3
      Basically my symptoms are constant pain in the eyes all waking hours. Most lately my eye don't bother me at night, however, during day time it became worse. I believe few months ago I god more of the des signs, versus now I don't show much of dry eye signs, and have more symptoms. Would appreciate any advice...


      • #4
        It's confusing because you've done things for aqueous deficiency (OTC drops, quad-plugs, restasis) and you've done things for meibomian gland dysfunction (omega 3, warm compress, LipiFlow, probing) all in the matter of 4-5 months.

        Did anything help at all? Did anything in particular make things worse (e.g., did you over-flow with tears when you were quad-plugged?)

        You said that PROSE did nothing for pain relief. I don't know of a lot of things specifically for neuropathy except oral meds (e.g., gaba, neurontin, lyrica, antidepressants, etc.) or Calmare/pain scrambler. You could try moisture chambers to try to reduce pain, but if it's not AD or MGD, I don't know if they'll work. Perhaps search DEZ for "neuropathy". I know others here have this.


        • #5
          At the beginning I had both aqueous deficiency and MGD/bleph. However, after few months my TBUT improved from 3 to 10, and meimobian glands started producing oil. However, pain in the eyes became worse. It chaged from burning to mostly aching pain, sometimes witn migranes. As far as helping symptoms, nothing helpd to the degree I was able to notice any long term improvement (by long I mean > 1 day). Now, at BFS and MEEI I was diagnoes with corneal neuralgia since where is nothing to treat in the occular surface..


          • #6
            You may have seen this, but if not, it might have something new:

            You can also check out SAAG's post on dextromethorphan:


            • #7
              Thanks spmcc,

              I might try Delsym. Regarding article, I read it few times already, and It seems like I have tries everything possible, which scrares me even more