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I have shingles on my face scalp and eye has anyone had same experience?

Posted , 14 users are following.

josh10005
josh10005

Rash appeared Saturday the pain is unbearable and right eye swollen shut and left eye is starting to swell today. I've been to eye doctor and he said eyesight is ok. Scared to death my hair is going to fall out. I haven't been able to eat in almost four days. Any advice would be appreciated.

1 like, 33 replies

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  • christine31167
    christine31167 josh10005

    Posted

    Hello Josh, I had exactly the same symptoms as you. I looked like I'd been beaten up.  Mine was misdiagnosed, I went to the doctor because there was no rash at that stage but really bad pain round my eye and over my head. I was told it was sinus problems. Two days later the rash appeared my doctor was horrified she also said it was the worst she had ever seen. By then I was to late for the antiviral. conclusion was PHN that I have had for over 6 years.

    i have tried everything under the sun both standard medicine and alternative. I was doing research on what other country's did for shingles and ongoing nerve pain. I came across several country's who where giving Botox and a placebo and their finding where amazing. I found a neurologist  who gave Botox for migraine with amazing results.  He said he would try it on me to see if the pain subsided.  It was given all over my scalp on the right side and following the same nerve near my eye.

    The relentless pain is now under control, I now have a tender forehead like you get following a bump on the head. I do feel like I am getting my life back. Although it has left me with depression, which I am slowly trying to get sorted.

    The moral of my story is try everything yourself, what works for one is not always the answer for another. Research treatments on line. There are also shingle societies that you can join especially in America. They are full of advise and help. Good luck Josh, don't worry about hair loss I had thining of my hair through scratching in my sleep. It grows back.   

    • Merry19451
      Merry19451 christine31167

      Posted

      Christine,

      I am so sorry for your suffering. When Zoster affects your face, the pain is excruciating. I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the last 20 years. I also have had Zoster-Shingles in my right eye twice as an extension from the dermatomes. I understand your pain. I am on Venlafaxine, an antidepressant, Topamax, an anticonvulsant, plus the standard antivirals and Oxycodone, and Benzocaine ear drop when I do have Zoster-Shingles. You are absolutely correct to try every modality, until you find the correct combination that works.

      Best Wishes

      Merry Juliana,

    • jane97743
      jane97743 Merry19451

      Posted

      Did you lose your vision after  getting it in your eye? i have just seen the eye specialist for the 2nd time, luckily there is no scarring,although I have blurred vision for most of the morning, The the head pain is almost unbearable, hurts to just touch my head, My eyer has re infected which has made it all worse again and i am getting very depressed with all the pain and sore eye!
  • Bronco46
    Bronco46 josh10005

    Posted

    Josh, I'm right there with you. I went undiagnosed for almost twenty years. My outbreaks (until this week) were always in my hairline on the right side of my head. Back in the late 70's I even asked a doctor why my hair would hurt from time to time. He just blew me off. It wasn't until I finish training as a Registered Nurse that I diagnosed myself. And with that knowledge, I got a proper dx from a doctor and got acyclovir. I suppose you can spend your money and drink olive oyl, and whatever other over the counter stuff people can come up with. But, the best advice I can give you is... When you get an outbreak. Get yourself to a doctor and get on acyclovir. Especially for those of us, that get the outbreaks near our eyes. That's nothing to be fooling around with. Leave the home remedies to the people with a rash on their butt. You have to moderate the outbreak to protect your eyes. Remember to wash you hands a lot during an outbreak if you're touching the area of the outbreak. If you rash/blisters are weeping you can spread it to your eyes. I have an especially tough time with the outbreaks because I also have central sleep apnea, and I have to wear that mask. It really hurts putting that mask on and wearing it with an outbreak. 

    Remember, ACYCLOVIR, before anything else. Don't get hooked by the grass clippings peddlers. You can drink glass clippings tea or anything else as long as you take the Acyclovir. This virus is barely affected by anti-virals. So don't push your luck with olives and grass clipping. 

    Good Luck!!!

    • Merry19451
      Merry19451 Bronco46

      Posted

      Hi Bronco,

      So sorry for your suffering.

      Absolutely get on an antiviral. There are three approved antivirals for Herpes Zoster-Shingles. Acyclovir is the oldest, takes slightly longer to start working, and is taken five times per day. Valcyclovir and Famcyclovir are slightly newer and start working slightly faster, and only need to be taken three times per day. If you actually have the rash close are in your eye, or your vision is affected, please see an ophthalmologist tomorrow. I have had Herpes Zoster-Shingles twice in my right eye and the disease is very serious. I usually have it in my right ear every three to five weeks for the last 20 years, but it spread to the nerve root of my right eye twice.

      I am immunocompromised, so I am at greater risk of developing recurrent Herpes Zoster-Shingles, but it wasn't readily apparent, when I first started developing recurrent Herpes Zoster-Shingles. It is amazing how abysmally ignorant the health care physicians were, basically stating it had to be Herpes simplex, which is sexual transmitted. I tested negative for the antibodies, and it couldn't be recurrent, etc. Please make certain you receive adequate pain control, as well as the antivirals, as Herpes Zoster-Shingles is excruciating, especially if it is on the face, near the eyes and ears. I know. You also need to rest, as you have a viral illness, and probably are experiencing symptoms such as headache, joint and muscle aches, malaise, weakness, sweating, chills, fever, fatigue, etc.

      Please let me know how I can help you. I am a nurse practitioner in the States.

      Best Wishes

      Merry Juliana

  • jane97743
    jane97743 josh10005

    Posted

    Hi Josh, I have been suffering so badly with exactly the same thing, I got it 2 weeks ago, extreme pain in my head before the rash appeared on my forehead, it felt as if someone had rubbed stinging nettles all over it, my eye was sensitive and then I noticed a couple of red marks on my forehead so saw the Dr the following day and it was diagnosed, Well, I have never had such terrible pain as it also affected my eye, ( I have had 2 children with less pain than this!!) my eye has been so sore as if there is grit in it, . i was given Aciclover anti viral meds as soon as the rash appeared, The head pain is unbearable especially at night and in the morning,I lost my appetite too, and felt sick and tired, I saw the eye specialkist and my eye wasn't too bad a week ago, but I now have conjunctivitis in it, and am seeing the eye specialist again tomorrow, This really is such a horrible thing to have, I hope you feel better very soon!
    • jane97743
      jane97743 victoria11819

      Posted

      I have seen the eye specialist today and it wasn't conjunctivitis, the eye has re-infected!! I have 2 different eye drops and more Aciclovir for another week.I feel as if I will never feel normal again!!
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