Which nerves are affected?

1

I think I may have post herpetic neuralgia.

I have pain in the right side of my face -- forehead, cheek, jaw, tongue, eye, and ear. It is almost always present -- but varies in intensity and location and oddly enough the sensation varies from hot to cold to bruised.

I also have pain under my right shoulder blade and around into my right ribs near my liver. And down my right arm.

I did have chicken pox as a child. I never had a shingles rash - but the pain in my face and ribs started quite suddenly 2 years ago, was very intense and has never really gone away.

I'm wondering what nerves or body areas are affected for those of you with PHN

And -- if any of you had shingles without a rash.

Thanks,

2

Be aware, Karen, that some TN patients ALSO experience Post Herpetic Neuralgia. My wife was among those. The two are not exclusive. And yes, I've heard a few reports of PHN pain without obvious rashes. The important thing here is how you are being treated. As far as I've seen from patient reports, the most effective medical treatment would comprise a short course of an anti-viral med with a long course of Neurontin. Have you ever tested positive for the Herpes Zoster virus, since your pain presented two years ago?

Regards,

Red Lawhern, Ph.D.

Moderator and Resident Research Analyst, LWTN

3

Hello Red, I have not been tested for Herpes zoster virus, yet. I will ask for the test.

I"m seeing a new neurologist at the end of April and hopefully he'll be able to sort this out.

Does the anti-viral med work, even when it's been two years since this started? I thought that was a treatment for acute Shingles.

Neurontin made me a vomiting zombie <sigh> (with pain in my face). Given that, I'd prefer to simply have pain in my face without the inner zombie being given free reign.

I came on this network after the umpteenth doctor told me what I don't have to try to figure it out for myself. There are unfortunately many possible sources for me -- scar tissue on my neck from having a lipoma removed, chronic Lyme, childhood and young adulthood neck injuries.

Thanks for the info

4

The anti-viral will naturally work better in the early stages of PHN. But I am very surprised that no doctor has put you through a blood test for Herpes Zoster. If you're negative, then the neurologist should be looking for something else, such as Fibromyalgia or ongoing issues with Lyme. Alternately, you might be evaluated for Lupus. Your face pain is unlikely to be related to scar tissue in your neck unless the lipoma was deep enough to impact the brain stem above the cervical spine.

Let me know how your appointment with the new Neuro works out.

Regards, Red

5

I'll get tested for Herpes Zoster.

Thanks

Karen

6

Saw a new neurologist today who diagnosed me with post-infectious trigeminal neuropathy. I'm on a trial of Oxcarbazapine, which he says wont' dope me out as much as the other meds I've tried.

A very emotional day for me.