Shingles on the trigeminal nerve years AFTER being diagnosed with TN- of all the luck!

I have had TN for a number of years and now I have developed shingles ON MY FACE on the SAME SIDE as my TN. Thankfully on a different branch. Has anyone been through this?

As if it wasn't enough having TN and being on a rather large cocktail of meds, a week ago last Thursday I had a minor spell that I felt nauseated. Lasted about 20 min. Then it was gone.

Fri I developed deep pimples on my face - left side, right where my TN likes to present itself. I often use lidocaine gel one the area when breakthrough pain hits. Fine.

Sat, the "pimples" were growing. Decided not pimples. Perhaps tiny ticks that I couldn't see were irritating the area. Would wait and see. I had my MRI's scheduled on Tues for my neurosurgeon appt to talk about MVD. Nothing was going to keep from getting those MRIs done.

Sun. Getting larger, another appeared. Spider bites?

Mon. Spent day at family, found out some bad news about a family member. That night had some break through pain. Touched the "bites" and OMG pain. Not TN pain. But in the same place. Started to look like a rash along my face and my lymph node was like a rock. Of course the internet is a great tool.

Tues. MRI. Made an appt for Wed with a Physician's assistant. Was 80% sure it was shingles. Shingles on my trigmeminal nerve. The same one that I was planning having surgery on. I could only hope it was on another branch of the nerve then the one that was THE one. Why couldn't it be on my belly or chest or arm?

Got to the clinic. Met the PA. I was right. Shingles. She knew all about TN. The fear here being that we didn't want the shingles causing a flareup of the TN. One good thing was that I was on all the drugs that they give people who get the shingles so the meds were already in my system, ahead of the virus. Lowering the risk of a flareup and lowering the pain index of the shingles. She added percocet and ibuprofen to the mix (which I did need later, oh boy do I need it). Another risk is that it would go into my ear (it has).

It's been one week since the blisters appeared. The pain ranges from bearable to agonizing (but not to the TN apocalyptic stage). but it has not caused a flare up. There are blisters in my ear and my face looks as if it's being eaten up - but here is my question, finally.

Has anyone gone through this?

Is there anything I can do to TRY to prevent a flareup? Or, god forbid, a case where I get postherpetic neuralgia where I will have TN forever and surgery won't help.

I know there is nothing can be done about the shingles but how did you get through this mess?

Thanks,

Tina

Ouch, I'm sorry you got no responses, Tina. I hope you are over the shingles now and doing better.

Hi Tina, I have been dealing with this for the last 3+ months. I took Orrencia (biological) for my arthritis/ Sjogrens and my immune system was down in the toilet. Thus I got Shingles, luckily on the back of my head on the other side of my ATN. It didn’t LOOK like Shingles so it took them 3 drs appts and 1 biopsy until they figured it out. Two of the drs told me to get the shingles vaccination after I got over it, my Rheumotologist told me not to but rather be very vigilant and as soon as I had something I suspected might be shingles to immediately go to the dr. I hope you are doing ok. Take care.

so sorry tina. what a horrible situation. my prayers and best wishes for you. be strong

I know this is an old post but when I started acupuncture in Dec 2015 the acupuncturist told me first thing to do was to get the Shingles shot as soon as possible.