Shingles in the eye

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I would like to hear from anyone who has had shingles in the face and eye) It is the worst type to get, the Dr told me yesterday, I had excruciating stabbing pains in the back of my head 10 days before a rash appeared, I got treatment as soon as I was diagnosed, but it has been so very painful especially in my eye.I was scared of vision loss but after seeing the eye specialist every week, he said my vision is getting better, This really is such a horrible virus!! my eye is still so uncomfortable, sensitive and a bit swollen, I have various eye drops and pills to take but I feel I will never get better as it is 3 weeks now!! I would appreciate your comments and advice, thank you!

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  • Posted

    Hi Jane!

    I am so sorry for your suffering! I have had Herpes Zoster-Shingles twice in my right eye and get in my right ear every three to five weeks for the last 20 years. Herpes Zoster Oticus is called Ramsay Hunt Syndrome. To me, the agonizing pain is the same either in the eye or ear. It does get better, but it is a process. I would ask your ophthalmologist for Topamax, Lyrica, or Neurontin to help decrease the intensity of the pain. Hopefully, you are on a strong Opioid such as oxycodone. Lesser ones don't really help. It sounds as if the ophthalmologist knows what he is doing re treating the actual shingles, but many times physicians are poor regarding pain management.

    It took 3-1/2 weeks of excruciating pain in one half of my head before the rash appeared the first episode Zoster-Shingles, as well. Talk about going out of your mind!

    Again, please make certain you receive oxycodone for the excruciating pain and either Topamax, Lyrica, or Neurontin to help attenuate the pain. If you don't ask in an "assertive" way, you may not receive them.

    The pain really does get better in time.

    I am a nurse practitioner in the States.

    Let me know how I can help you.

    Best Wishes

    Merry Juliana

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    • Posted

      Thank you for replying, How long did it take before your eye felt better? Mine became re infected which made things worse, it is 3 weeks since I started the terrible haedaches and 2 weeks since the rash. I am on Naproxen but can only take 2 a day, and the rest of the time paracetamol, which doesn't really help. I take one Amitriptyline at night which is meant to calm the nerces around the area that hurts, but that doesn't seem to help either as I don't manage to sleep much especially if my head aches! I am still taking Aciclovir but a lower dose.I am on 2 different eye drops too
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    • Posted

      Ps I now have an odd tingling feeling on one side of my nose and just above my eye and forehead, a bit like a small electric shock, I hope this is just due to the nerve endings while things are healing, and not another bout of shingles! My head is so tender and all down the right side of my head and my ear, is this to be expected before I bet better? How long did your headaches last?
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    • Posted

      As I said in my prior message, you need to be on stronger analgesics. Ophthalmologists tend to be ultraconservative re pain medication. My entire head was excruciatingly painful for about six weeks each, the first episode for the eye and for the ear. Again, ask for Oxycodone for pain. You are on essential water for pain medication.
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    • Posted

      Hi Merry, I was on pain medicine for chronic pain from a car wreck over 20 yrs ago. my pain dr took me off them and put me on something i had a bad reaction to and he woud not listen to me and was telling the new pain dr i was trying to get in to that i was just having withdrawals. i know my body and i had a very bad reaction to this butrans patch, which you are not to mix topamax with, wich i am on. i looked that up tonight. but my body has been trying to have breakouts with the shingles in the same areas i had it before and it did break out in both my shoulders. Friday i woke up and could not move my neck so i was rubbing it and accidently scratched a blister whiched burned like fire. I went to the clinic and the dr i seen has had shingles and he knew right away what it was. I was so thankful for that. But i have been told you can not get it on both sides of the body at the same time. but i have been in so much pain for 6 wks now and so much stress from the pain that i am living proof that you can get it on both sides of your body under certain cercumstances. I have pictures of the rash on my left shoulder. and the rt shoulder several days after that started with the deep pain and a few blisters. I usually dont get a lot of the blistering, which i am thankful for that, but the pain is just awful as we all know. I was also having a weird sensation in my head as i did with the first bout with the shingles, but with the bad reaction to the butrans patch i could not think of what that was until i got off of it when i refused to use the 4th patch, that was a week and a half ago. my mind and thinking is improving and i finally put it all together friday. So the tingling sensation for me anyway seems to be a sign that its coming on again. The worst was in my upper back and neck this time which was where i had it the 2nd time. That is my experience with the shingles and its always been stress related.  Have you ever heard of anyone having it on both sides at the same time. Just wondering. Some times i feel like my body is just weird. but i have really been under so much stress since this last med change.
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  • Posted

    I feel so bad for you. My first shingles outbreak woke me in the middle of the night with pain so bad in my back then went around my side and throm my back through to my chest. I thought i was having a heart attack. went to the hospital then the pain went up on both sides of my neck,face and head. But no blistering except on my back. But the nerve damage it has caused in my head gave me bad headaches every day. Finally my dr put me on topamax daily for the headaches and that has helped so much and Acyclovir for the pain I have in the areas on my back from the  times I had shingles, I still have so much pain in those places. These meds were helping until this last bout with shingles that affected both sides of my body. O could not even imagine having an outbreak like you have had. Not sure what meds you are on but if you have not tried the topamax 25mg 2x day and acyclovir 400mg I would give them a try. I was told you can't get shingles on both sides of your body at the same time, bu ti know differently and i know i how it feels. Was wandering if anyone else has ever had this happen. I wish you luck and also the topamax im on is a very low dose but helps my headaches with your problem you may need a higher dose. hope this has helped some. 
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  • Posted

    Hi Jane,

    ​My shingles started about 10 weeks ago, was initially misdiagnosed as sinusutis so was only on anti-viral medication after 2 weeks so not as effective. Good news is that the sensitive, blistered area has reduced round my cheek and eyelid to just(!) the left side of my nose but also includes my left eye. Until I started the anti-virals the pain in the eye was agonising but this has reduced to bearable. I can't touch my nose or the pain starts. The eye pain also kicks in if I yawn or sneeze...My GP says there are no painkillers that work. My eye also starts hurting now when tired in the evening so I close it. Strangely enough within 2 minutes of playing tennis the pain disappears until I stop playing. Also early in the morning very sensitive to light so its 30 mins before I can drive.

    ​Have you found any pain killers that work?

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    • Posted

      Hi Chris,

      I was in such terrible pain last night in bed and couldn't sleep. I also wake up unable to open my eye for about an hour due to the light, and it is so sensitive now. it is 3 weeks since  the pain started before the rash, How long did you have the shingles when you still had eye pain? I have had such excruciating pain in my head and all down the right side of it, such a dull awful pain that it makes me cry, I saw the Dr today and he has given me Co-Dydramol, and some other pills called Lacaent Capsules, which are to suppress the nerves I think, I did have a nice sleep today as I think the pills made me drowsy in a good way, I really hope I can sleep tonight as it is getting very depressing now., I have had to see the eye specialist every week, so far my sight isn't too bad, i just hope things stay that way!  I hope you are feeling better!

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  • Posted

    Hi Jane,

    Sorry to hear about your experience, I must be lucky. Although I had severe pain in my eye for the first 3 weeks it has gradually eased off.

    ​I am now in my 10th week but don't have headaches but still have the shingle rash on my nose whch I can't touch. Like you, each morning it woud take me half an hour just to wipe the tears away before putting on my sunglasses to drive.

    ​My main problem now is very sore eyes from about 7pm which stops me reading (I've always got a book going).

    ​Today my eyes were not very sore this morning for the first time so there is hope. I'm lucky being semi-retired. Your pain WILL gradually reduce, you just have to get used to it taking a bit longer. I just put my life on hold for a few weeks and went for long walks. For me, exercise and my sleep seems to be the best medicine so take whatever you are being prescibed to get a good nights rest. I check my eyesight every day too, so as long as that is ok you don't have to worry.

    There's no magic potion, just time. I hope you get over the worst very soon. This seems to be usual course.

    Take care.

    Chris

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    • Posted

      Thank you for reassuring me! I too miss reading, I have a book I started but have now forgotten the beginning of it! In the morning although it takes ages to open that eye properly, once I have done, I can see ok, losing  vision was my worst worry! I was in such pain the night before last, that I had to see my Dr for stronger pills which I now have, and for once I didn't wake in the night with pain, I was awake at 6am aand went back to sleep from 7am until 11!! I did feel a bit as if I'd been sedated, but that is a side effect of the pills. On thursday I have the eye clinic so hopfully will have more of an oidea how my eye is doing. Did you have to go there often? The skin by my nose and eyebrow is less sensitive today but still feels like a small electric shock if I tough it, It is ultra sensitive all around that area including my fotrehead, which also feels a bit numb! i think it all takes a ferw weeks to recover properly .
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    • Posted

      May I suggest Audio books? I found whyspersinc on Amazon. Down loaded some really good books which also help me nod off! I bookmark them so if I do go to sleep I can go back to and start again. I've been having similar probs since Shingles and it wasn't even in my eye but nerves in the surrounding area were affected. Best wishes, Pollyanna UK rolleyes
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    • Posted

      Thank you, but I like to listen to Paul Miller on  BBC Surrey and Sussex radio, or just watch tv until I am really tired, my new pills are really helping me to sleep and are controlling the pain/
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  • Posted

    I had shingles on my forehead (right side) June 2015

    . It spread to my eye even though I was on antiviral meds. after the first blister. I was put on Valtrex and steroid drops. The rash cleared and my eye cleared within three to four weeks. Unfortunately the shingles has returned in my eye only on three occasions since last summer. I am currently on three different eye drops and Famvir for the virus. I have been dealing with blurry vision and very cloudy vision in the effected eye. I am lucky as I don't have much pain, but I do itch! My advice to you is to be sure that you continue to get your eye checked even when the blisters have cleared on your head. It can come back just in your eye with very few symptoms.  I hope you feel better soon.

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    • Posted

      Thank you Dori, I dread it coming back as it has been such a worry, I would hate to lose my vision, Does yours come back once you have used the meds? I am still taking anti viruls, although am checking with the Dr if I am still meant to be taking them! I'm hoping that they will stop it coming back in my eye, it's all been so painfuland my head is still so tender one side and all down my face too! I went to the reye clinic yesterday, and have to go back in a month, I also have a Dr appointment in 2 weeks, Good luck to you too, 
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    • Posted

      Jane,

      Zoster-Shingles can recur, usually in the same site. If you are not immunocompromised, you are at decreased risk at a recurrent episode. I have recurrent Herpes Zoster-Shingles every three to five weeks for the last 20 years in my right ear. I also have had Herpes Zoster Ophthalmicus twice. I am immunocompromised, however. It was not immediately apparent. I am now 64 years old.

      Merry Juliana

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