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Scarred cornea and ch phn from shingles

Posted , 7 users are following.

kathleen_1955
kathleen_1955

I've been dealing with PHN and blurred vision,headaches, tearing,droop eye for seven years. I was out of work for 3 mos. Trying to recover.Bottom line no way to rest your eye. But shingles is like having flu, knocks you out.My eye doctor keeps me on valtrex forever as a preventative measure. I still have flair ups in my eye but I haven't got shingles anywhere else since eye shingles. Bit thecwsy he put it it's like having diabetes,it's something I have to manage forever.

0 likes, 13 replies

13 Replies

  • gail09802
    gail09802 kathleen_1955

    Posted

    Kathleen,

    I wish I had something helpful to say to you, but I don't. I'm just here to say how deeply sorry I am for you. I find it astonishing what some people on this site are living with. So terrible.

    Gail

    • kathleen_1955
      kathleen_1955 gail09802

      Posted

      Thank you Gail. I feel as though I'm in good hands with my Ophthalmologist. Very Lucky. If my primary didn't second guess and just put me on valtrex probably wouldn't be as bad.

  • charlie58834
    charlie58834 kathleen_1955

    Posted

    Hi Kathleen,

    Your doc is correct that you will have to manage the symptoms long term, like diabetes. However, PHN does not get progressively worse like diabetes. PHN involves damage to the sensory nerves from shingles. Once the damage is done, the nerves start healing. The healing is extremely slow, so you won't probably notice improvement that way for some years if you are like me. Meantime, your job becomes pain management. I had shingles in the eye, forehead, and scalp. Lots of itching and pain since then for 27 years now, but my symptoms have decreased a lot. They are more of an annoyance now, not too bad.

    I found out in the first year that Aspercreme helps a lot, and I can leave a very thin layer of it on the eyelid for decreased pain/itching there. When it feels like the itching is inside my eye, that helps a lot. Worth trying to see if it helps with your pain. 

    Lidocaine gel helps also. 

    Also have found that drinking more water prevents or stops my flare-ups. There's a potential solution for you to try, one that costs nothing. Once a flare-up has started the water will take about a half hour to stop it. 

    Its easy with this problem to become depressed, angry or anxious. Those emotions will magnify the physical symptoms. If that's happening now or in the future, a therapist who specializes in cognitive behavior therapy (CBT) can help greatly!  

    I hope this is helpful to you, Kathleen. 

    Charlie

    • kathleen_1955
      kathleen_1955 charlie58834

      Posted

      Thank you Charlie. I appreciate your thoughts and concerns.You seem to have some good ideas. DR. plugged my eye to help with dry eye because eye doesn't know when to blink.Alsi my Dr.made serum drops out of my own blood and that was extremely helpful. Yes,I know diabetes does get worse but what Dr.was saying is it's a condition I'll always have to deal with,driving affects it,outdoor activities,stress,weather,etc but I will look into aspercreme.My next visit he is considering making a hard lens for my shingle eye. See how that goes. Cornea transplant is another remedy but no guarantees that it'll work. I'm not interested going transplant route. Thanks again for your thoughts,and I know there are many worse diagnosis out there and I do feel fortunate with the rest of my health!

    • michael26620
      michael26620 kathleen_1955

      Posted

      Have had shingles in left eye since 2008. Lens transplant in '09, helped for awhile, but blurriness came back. Stayed on Acyclovir ever since. Earlier this year my Dr also had me try the hard lens, and YES I could once again see things-like reading license plate on vehicle in front of me. Unfortunately after about a month, I "lost" the lens under eyelid, and farther damaged cornea w/the plunger trying to get lens out. Ended up having to have eyelids sewn together to help it heal, and now blurriness is worse than ever before, Don't know what will happen going forward.

      My advice to you would be, by all means try the hard lens as that rounds out the cornea.

      Just BE CAREFUL removing the lens.

      Good luck to you.

       

  • susan74911
    susan74911 kathleen_1955

    Posted

    Hi Kathleen,

    I have had opthalmic shingles for around 7 years as well, so I can empathise. I have been having Capsaicin patch treatment on the nerves around my eye ( but keeping my eye covered to prevent burning!) I had some short term relief, but it involved shaving my head, and in the end the amount of relief wasn't worth it. I will be going back to the pain clinic in January and they are going to try Botox injections to see if they help. Some other patients with PHN in the trigeminal nerve have been taking part in a trial, and many have been having some success, so now it's being rolled out. There's also another treatment that is likely to be approved next year, so there's hope. I also have costochondritis and have been offered a ganglion nerve block for that, which may also help the PHN.

    Good luck with the lens. That sounds interesting.

    • charlie58834
      charlie58834 susan74911

      Posted

      Haven't heard of Botox being used for PHN. Please keep us informed, whether it helps or not. 

    • susan74911
      susan74911 charlie58834

      Posted

      Hi Charlie,

      I will let you know. It has only just been approved by the NHS in my part of England, but my consultant was running the trial and said that he was very impressed by the results for people with the same sort of pain as me. He has also run a trial of transcranial magnetic stimulation which he thinks will also get approval. (I was going to be part of that trial, but the time commitment in travelling to the hospital several times a week wasn't possible with work. The original researcher got a new job, and her replacement could only see people in the morning which was my busiest time of day.) He says that there's a lot of new research internationally, and hopes that new therapies will be available over the next year.

      I will post anything else that is helpful.

    • kathleen_1955
      kathleen_1955 susan74911

      Posted

      Interesting! I will mention it to my Dr. about the botox treatment. I hope it works for you.
    • paulbklyn
      paulbklyn kathleen_1955

      Posted

      Not to say it won't work for you I had it 2 weeks ago  no relief, so far nothing has worked for me except meds.    Wish they find a cure for this

  • paulbklyn
    paulbklyn kathleen_1955

    Posted

    I'll pray for you to feel better

    Happy Holidays and Wishing for a better New Year

  • Hector78249
    Hector78249 kathleen_1955

    Posted

    Hi Kathleen, it will be 5 years July 2018 that I was hit with ophthalmic shingles and phn on my left side. Expetience  symptoms you described. My eye doctor has put me on valacyclovir on a permanent basis because the shingles will come back. Will this help?
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