Shingles in mouth; history of herpes brain infection & herpes in eye

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I am a 44 year old RN recovering from oral surgery related to complications from a shingles mouth infection. I had ulcers on my gums, fever, malaise and extreme pain. I could not see the ulcers as those were under bone tumors in my mouth. The ER misdiagnosed me with an abcessed tooth. I was in extreme pain, but only given antibiotics. I saw my dentist who did not see the shingles ulcers either, but did see exposed bone. He immediately sent me to an oral surgeon. The oral surgeon found the shingles with a mirror. I started antivirals (Valtrex), but it was too late to help. The pain in my mouth intensified over the next two weeks as the ulcers cleared up. My oral surgeon diagnosed me with a secondary bacterial bone infection in my jaw caused by the shingles. He prescribed antibiotics. A week later, my gum split wide open revealing an inch of exposed bone. I saw the surgeon who cut out the infected and rotten (necrotic or dead) bone tumors (tori). I had osteonecrosis - death of the jaw bone. This was also caused by the shingles infection.

Seven years ago I was bedridden for two years after having herpes encephalitis (shingles in the brain). It caused seizures, horrible trigeminal neuralgia, migraines, and psychiatric problems.

The encephalitis stemmed from a shingles eye infection that I had two years prior. I have scarring on my cornea from the virus.

I take a maintenance dose of Valtrex daily to hopefully prevent the shingles. I also take gabapentin for post herpetic neuralgia.

Shingles is dangerous. With this latest mouth infection, I realized that one can die from the complications.

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  • Posted

    Dear Kimberly,

    I am so sorry for what you have been through. Some physicians? have no idea how truly devastating the Herpes Zoster-Shingles virus can be. The virus only caused the semicircular canal's right ear dehiscence and neural hearing loss. I have lost my hearing and balance. Of course, I got a secondary bacterial infection in the right and left ears. I have recurrent Herpes Zoster-Shingles every three to five weeks in my right ear for the past twenty years and twice in my right eye.

    I am a Nurse Practitioner in the US. I developed a mild case of Herpes Zoster-Shingles encephalitis and lost my job many years ago....

    It is a horrible disease that too many clinicians brush off.

    Are you immunocompromised? Although the physicians did not think so twenty years ago, I definitely am with Sjogrens Syndrome, Psoriasis, ITP, and breast cancer-excellent prognosis.

    Any bowel disease including IBS Crohns Ulcerative Colitis also places you at risk.

    There is a new vaccine Shingrex by Glaxo-Smith-Kline brought for approval to the FDA in October of 2016 and November 2016 in the UK. It has a 93-97% efficacy rate as opposed to Zostavax by Merck, which has a efficacy rate of 37-53% .

    Testing has not been done on those with recurrent Herpes Zoster-Shingles, that I know of.

    Zostavax did not help me at all. Neither did taking Antivirals prophylactically?. I take them at the first hint of pain to decrease the length of episodes and intensity of pain.

    I truly appreciate all that you have been through, and feel that most clinicians have no idea what havoc and misery the Herpes Zoster-Shingles virus can bring to one individual.

    I hope you have support at home, especially a loving and kind family, as that has made all the difference in my health and happiness.

    All my best wishes,

    Merry Juliana

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    • Posted

      Juliana,

      You are so correct. I get the brush off by many physicians about my recurrent shingles. Some do not even believe that it can happen. I have the most luck with infectious disease physicians, and my wonderful ophthalmologist. Most do not even see the danger, much less give a damn about the pain or morbidity.

      I have been checked for HIV and have had a MS workup. Thanks for mentioning IBS! I have that and never made the connection. I do believe that it is some sort of autoimmune disorder at the root of the problem. My mother suffers with very recurrent cases too. Maybe there is a genetic component as well?

      Before starting on the maintenance dose Valtrex, I would break out every three to four weeks like you. It usually started with a headache, malaise, and fever. I knew it was coming - just did not know where.

      Thanks for mentioning the Shingrex. I have been contemplating getting vaccinated, but only knew of Zostavax. I will definitely be looking into it.

      I "feel your pain" both literally and metaphorically. I wish you the best.

      Kim

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    • Posted

      Kim

      IBS is the huge connection for you, and it has been included in immunocompromised disorders? for awhile for shingles. Thanks for posting your story....I have sent a couple of people on this post to the hospital with Herpes encephalitis, who were dismissed by their Physicians. Fortunately, they recovered without the sequelae you have had.

      My best wishes to you!😎

      Merry Juliana

      All I know that when a disease affects you, it affects you 100%.

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  • Posted

    This is the worst shingles scenario I've read about since I joined "the shingles club." My case, which only involved my left arm and hand, sounds so mild compared to what you have experienced.  I had no idea that shingles could attack in so many different areas until I had shingles and read more about it.  My father had shingles around his waist probably 65 years ago and that's where most people that I've known have had it.  Now I realize that it can be quite serious, even life threatening.  I hope you won't have to suffer any more!

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    • Posted

      I am so sorry that you and your father had to endure shingles. Until I had it myself, I too did not realize the breadth of its reach, even though I am a nurse. I had to educate myself by reading every medical article that I could get my hands on. I educate my physicians about it. Just yesterday I had a thirty minute discussion with a medical student about it. I love to spread the word about this dangerous disease. I have spoken with top experts in the country about it and even they will tell you that the disease is not fully understood.

      There is a vaccine out now. You should consider getting it. I am getting it soon.

      Best wishes,

      Kimberly

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    • Posted

      I definitely plan to get the new vaccine!  I had the other one several years ago and was told that my case should be mild due to that.  It definitely wasn't as horrible as yours and others that I've read about here, but it didn't feel "mild" to me when I spent sleepless nights in acute pain.  Fortunately that stage only lasted a couple of weeks and I gradually recovered, with only one tender spot on the palm of my hand about the size of a silver dollar and tenderness on my thumb after 4.5 months.

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