Itching eye 15 months after shingles, getting desperate!!

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I have written on this forum before re shingles, but I really thought that the problem would gradually stop but it has gone on now for  almost 15 months , you would think that in this day and age there  would be help for this but  there is none! !! I have tried everything from pills to antihistamine cream and nothing works, so my eye is very sore, as sometimes it's very hard not to rub it when it itches so badly, from the eye to my forehead. PLEASE can somebody help as it is ruining my life now, however much I try and get on with normal activities etc, it is so deprerssing feeling this way and hard to ignore! Drs don't really seem to help either, and at the eye clinic i just get told to give it time, and that it will go eventually but I find this to be untrue!!

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  • Posted

    Hi Jane,

    I truly feel sorry for you because I am going through the same misery and so are many other on this forum and I know the misery that you are experiencing. After shingles nerve pain is very painful. I believe not many doctors know that much about shingles or the nerve pain that often follows. Most medical personal give only the same strong drugs that they have given out for years. But, many of the drugs are addictive and/or cause bad side effects or create other serious problems in the body. Another problem is that every person is different in how their systems respond to shingles and nerve pain so there's not just one anser that fits everyone. The only common denominator is that this illness causes a lot of pain and exhaustion, lack of energy and anxiety. I realized that I have to find ways to help myself because doctors just can't do more than write prescriptions for meds. I have found some alternative ways to ease my discomfort like changing my diet to a more healthy one, doing moderate exercise each day, sleeping a lot, relaxing, practicing meditation and breathing exercises and sociallizing with friends. Trying to think more positively also helps me. I am still in pain almost constantly but when I concentrate on other more interesting things, the pain feels less intrusive. Like you, I have been told by a lot of people that my pain with eventually go away, but it will take time. Some doctors have told me that my pain will lessen at some point but it may stay with me forever. So, I figure that the truth lies somewhere in-between these two answers. I want to live so I continue trying my best to live each day looking for the things that make me smile in spite of the pain like my dog, the sunshine, a good movie or a conversation with a friend. Good luck to you. 

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  • Posted

    Hi Jane 

    Ive had the same problem and I found the only thing that gives me any relief is E45 anti itch cream available from any chemists.gently rub a very small amount on your forehead and eyelid it do be careful not to get any in your eyes,certainly gives me relief as I started in November last year and am still suffering.I do hope this helps

    Clive

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    • Posted

      Thank you,

      I did try that but it didn't work for me, I have decided to try taking Cetrizine again in pill form, as I had sonme before but i don't think i took it for long enough to make a difference, Thank you for your good wishes and good luck to you too!

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    • Posted

      I find optrex for itchy eyes helps me. It contains aloe vera and soothes the itch. It is not a cure and I have to use it regularly. Moisterising eye drops may help too but again not a cure! I take cetirizine daily for year round allergies but they do not do much fo sore eyes unfortunately. Ask a pharmacist if he/she knows anything which might help. Try not to use computers, smart phones etc for long periods as I find they make my eyes worse.  Hope you get the help and answers you need. rolleyes 
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    • Posted

      Thank you, 

      I did try Optrex for itchy eye but it didn't work for me, I went to the eye clinic yesterday as I had a lot of discomfort in my right eye and it turns out that it does need treatment, i.e steroid drops. The itching isn't too bad today and I am wondering if the drops help to lessen the itch, I do hope so!!

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    • Posted

      Hi Jane, I hope so too for your sake. Should help as steroids reduce inflammation when used used in other ttreatments. I have dry eyes too which doesn't help matters but I use moisterizing drops when needed. If it happens again, you will know where to go. Good luck, Poll x

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    • Posted

      Hi again Pollyanna

      I also use artificial tear drops and still use the gel at night, I have started using E45 anti itch cream on my eye lid and in the socket, so far it ddoesn't seem to work! It seems so difficult to get anything that really helps! I am grateful of course that my vision is still ok and hope it remains that way! x

       

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    • Posted

      Hi again Jane. If you continue to have problems you should go back to the eye clinic I think. Shingles, PHN, can go on for years and is very depressing so seek help if and when you need it. My rash was on upper arm, shoulder and hand/wrist on right side, two years ago and the PHN has got worse in the last few months. I have tingling, numbness and lack of sensation in my right hand now so constantly drop things. My doc just says it's down to arthritis so nothing can be done, just keep taking the tablets! It did not happen before shingles!  I think I'm written off now I'm over 70! I'm depressed and get so angry about the attidude of the so called health professionals. I believe its all down to lack of funding here in UK. I'm retired so it doesn't matter as I no longer contribute to society in a material way. Sorry about the rant, take care. Poll x rolleyes

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    • Posted

      Hi,

      I really do sympathise and know just how you feel, as if nobody really cares! I was asked  by the eye dr yesterday why i was worried!! She said I worry too much and yes, maybe I do but when I have had problems now for 15 months it's natural to worry about my vision etc, as every now and again my eye becomes very sore again, I realise that I have to accept that this is probably forever, People who have not experienced shingles and PHN haver NO isea how horrible it is! It's bad enough when the shingles is present but at least some people don't suffer for months and years afterwards. I wish you luck and hope you get times when you can feel happeir xx

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    • Posted

      Jane and Pollyanna UK,

      I had to chime in to join you both in your frustration about the lack of understanding and medical care in regard to shingles, especially the after effects of the disease. Even my well meaning friends have no clue about the lingering, dreadful pain, itching, chronic fatigue and other body dysfunctions that can be ongoing after the shingles rash leaves. My friends think I should be back to my life as usual. Most people who have not had shingles think shingles is a rash that lasts three or four weeks and then the illness is gone. I got shingles in November and still lack energy and am no where near the healthy, peppy woman I was before I got shingles. One of the problems is that shingles effects everyone differently. There are some folks who recover quickly from shingles and have no nerve pain. Also, I know several people who told me they had nerve pain for a few months then it went away. Every doctor I talk to tells me something different about how long my nerve pain will last, some say it will lessen over time, some say it will last forever. Also, most doctors really don't know much about shingles or don't care about shingles because it is not as common an illness as many others and it often effects older people. I agree with you that older people tend to be ignored or dismissed by doctors which angers me a lot. With all that said, it is up to us women to do our own due diligence and research everything we can about the disease. I know that I am finding alternative ways to help myself that do offer relief from my discomfort sometimes. It is true that anxiety and stress severly aggravate shingles pain because the nerves are activated by worrying. Trying to find ways to relax yourself and take your mind off the pain can actually reduce the itching and pain to some degree. Also, eating heathy foods, getting a lot of sleep and doing moderate exercise can help. I know that the pain can be dibilitating at times because I have it on my upper left back, under my left arm and left breast, an itchy, burning pain. But when I focus on positive actions, it helps. I keep a journal chronicling my pain and progress. I make note of certain foods or activities that seem to make me worse and the ones that seem to help.

      I know heat and Spring allegies are making my nerve pain worse right now. Air conditioning and ice packs make my pain less. Lack of sleep makes my pain worse, too. I note in my journal when I am feeling extremely stressed and I try to elimintate these stresses. Just know you're not alone in this struggle to live a somewhat normal life with shingles nerve pain. 

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    • Posted

      Sorry about the typos in my last post; I typed it in a hurry. Corrections to my post: severely, healthy, debilitating, allergies, eliminate. 
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  • Posted

    Hi Jane.  My husband has the best eye doctor.  He is involved with a study about eye shingles at NYU with Dr. Cohen.  My husband is on steroid drops indefinitely.  It has lessened the itching and reduced scarring.  He is watched closely.  If anything gets worse they would transition him back to an oral antiviral like valcyclovir (but it is not needed since the drops seem to do the trick).
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    • Posted

      Thank you, 

      That is interesting, and hopefully the drops will help a bit as i have them for a while but I will be checked again in 6 weeks. So far nothing has helped and with my problem it is definitely the shingles that has caused it

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  • Posted

    Hi Jane--

    I appreciate your post as I, too, have been suffering for nearly 14 mos. from eye shingles. I have been on steroid drops since the beginning and was doing fairly well until a month ago when I had a setback with the return of constant weeping, burning and itching; along with the PHN flaring all around the eye and forehead region. It's AWFUL!  My continual wiping with tissues has caused chafing and has added insult to injury; handkerchiefs aren't much better. My doctor, whom I trust implicitly, has changed to a different med, but no luck yet. Fingers crossed! The only relief I seem to ever get is with the use of icepacks over my eye.  I just wanted to let you know that you are NOT ALONE. Thanks for your post and best of luck with your progress!

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