Anyone else here with chronic herpes zoster?

I was diagnosed at the end of March this year with the same , only forehead, head and eye, It has been awful and would take too long to go through all the different stages I have been through, but I had the PHN, and although I have no neuralgia now or head pain, the itching eye and forehead still remain!! It isn't all of the time but it is so hard not to scratch the itch, I am still attending an eye clinic as 3 weeks ago the white of my  eye went pink and very sore. This has now cleared after many different eye drops, I think it might be the steroid ones that have helped the most,

I wish you good luck as I klnow how painful it can be and it really makes you tired too!

Thanks Jane, glad to know I'm not the only one! One thing that I've learned about the condition is that it often leads to lots of unnecessary dental work being done. The root canal specialist at my dental surgery told me that I had a chronic bone infection and needed £900 of work done - glad I went to the doctor instead who referred me to a neurologist and now to this diagnosis. I realise that it's never really going to go away, but I do feel more in control now.

Check this out for a previous discussion... There are many of us who are dealing with the same thing.  I guess there is comfort in numbers :-)

https://patient.info/forums/discuss/anyone-had-shingles-on-their-face-head--397875

 

I would be interested in more information about this.  I am thinking this may be the case with my husband.  He had shingles on right side of face at age 42.  Then again about a year ago same side of the face.  Recently an episode not 100% identified as shingle, but possibly so.  The last two episodes cause serious dental issues on that side of the face.  The episode a year ago before he broke out he had a toothache and dentist reports his tooth just "popped out." Four days later he had a serious case of shingles aggravated by cellulitis.  He's never completely recovered, his eye gets sore and red frequently, and he has a constant runny nose on that side.  Just a week or so ago, he had a toothache again.  The dentist did a root canal.  His face was red and swollen.  His doctor gave him both and anitviral and antibiotic, and he did not develop full blown shingles.  This is the first I've heard about chronic shingles.  Is there any treatment? 

Hi Joy,

Sorry to hear of all the trouble that your husband has been having. In a way, shingles is always chronic in that once you have the herpes zoster virus in your body then it never goes away - you've got it there for life. What does seem to differ is how often, and where, it activates. If it activates in the transgeminal nerve, as it does with me, it can cause all sorts of different symptoms which a

Thank you Alward for the link, very interesting. I notice that most of the people talk about shingles rashes or lesions appearing on the face or head - I don't get this at all, only the pain and eventually tiny blisters always on the same small portion of my upper left gum.

I think I have shingles because I have been told so by the consultant neurologist at the hospital; my dentist had also raised the possibility. Apparently you don't always have eruptions, the zoster virus can also cause herpetic neuralgia. But I do get eruptions about every two months, they are always in the same place.

Dear Lucy,

I am so sorry for your suffering. Having Herpes Zoster-Shingles on your Trigeminal nerve is of course agonizing. Which branch is it, the optic nerve which would affect your eye? I am assuming you have post herpetic neuralgia from having had Herpes Zoster-Shingles in the trigeminal nerve, and continue to have pain. As I have had Herpes Zoster-Shingles in my right eye twice and get recurrent Herpes Zoster-Shingles every three to five weeks in my right ear, I understand your suffering and pain. What medications have you been given? I am a nurse practitioner in the States. Best Wishes

Merry Juliana

Ooops, I just read further that you have recurrent Herpes Zoster-Shingles every two months. Do you start antivirals immediately at the first hint or inkling of symptoms of recurrence? I certainly do. I also find that Famvir works more efficaciously than Acyclovir or Valcyclovir, but everyone needs to find what works best for them. My pain is so severe that I use an Opioid for three to five days, each recurrent episode. I am also on Topamax, daily but many are on Lyrica or Neurontin to decrease the neuropathic pain that comes with shingles. I use Auralgon ear drops, which contains Benzocaine, a numbing medication. It soothes the superficial nerve endings on the ear drum. You might ask your physician for Viscous of Lidocaine for your gums, during the episodes of Herpes Zoster-Shingles. Hopefully, you see an ophthalmologist for your eyes to alleviate suffering to your eyes. And I certainly hope you have a compassionate physician to give you strong analgesic medications ie Opioids for the severe pain. May I ask how old you are. I am 64 years old now, and use the three medications so I can still live my life instead of Herpes Zoster-Shingles controlling my life.

Let me know how I may help you.

Best Wishes

Merry Juliana