To date, I have not met anyone who has TN as a result of shingles, but I did see someone in a comment awhile back who mentioned it happened to them. My story is below, and I am hoping to find that I am not as alone in this struggle as I thought.

TL;DR - get your shingles vaccine

In July of 2013, I woke up to the most intense ear pain that I had ever experienced on my right side with Bells Palsy. My boss freaked out, because it looked like I had a stroke and made me go to the ER. I knew it wasn't a stroke, because I am familiar with Bells Palsy, but I went in anyway. After a thorough examination (CT scan, MRI, bloodwork, etc - yes they did both a CT and an MRI), the doctor said all my symptoms matched with Ramsay Hunt Syndrome. Turns out, RHS is an outbreak of shingles in the ear (the right side in my case) without the appearance of sores. Some antivirals and prednisone later, and the pain improved; but the face did not.

After about 3 months, I started having problems with my cluster headaches going nuclear. I had also begun to experience severely intense burning and stabbing pain around my right eye and temple. This became quite frequently, with consistent pressure and throbbing in the same area. Another 3 months later, and the pain had increased. The pain also spread to the cheekbone, sinuses, nasal cavity, and right ear. Several doctor appointments later, I was sent to my neurologist. This doctor is one of the most respected neurologists in the nation, with more than 30 years experience in his field.

To determine the root cause, he had me undergo additional testing and keep a pain journal for a month. After examining the results, he concluded that the shingles virus had somehow (impossibly) crossed the blood/brain barrier and attached to the trigeminal nerve. The virus then began to erode the myelin sheath, causing my TN-like symptoms.

I was sent to a neurosurgeon to be evaluated for treatment or surgery options. The surgeon I was sent to is the head of the neurosurgery department, and highly respected in the field. Despite his heavy workload, he still likes to take a small number of new patients. He does this, as he enjoys working with complex cases. After reviewing my file and performing his own examination, he agreed that I had TN-like symptoms. In addition to this, he diagnosed my cluster headaches as Trigeminal Autonomic Cephalgia. Because the conditions were caused by nerve damage, there was no surgical option for me. With surgical options excluded, I was sent back to my primary neurologist. At that point, I was diagnosed with atypical presentations of both TN1 and TN2, along with TAC.

Nearly a year later, my pain had extended to all three branches of the trigeminal nerve. In addition, my neurologist diagnosed me with postherpetic neuralgia in the right ear (the one the RHS was in). At this time, a young doctor who had done his fellowship at the Mayo clinic studying trigeminal nerve related issues moved to the area. My neurologist sent me to this doctor to see if he had any thoughts or ideas. This doctor was completely shocked that the shingles virus had wreaked such havoc in my brain, and was quite empathetic. Since he too had never seen this before, he consulted with his colleagues at Mayo. Those doctors were just as shocked as he was, and agreed that the diagnoses fit. Unfortunately, they also had no additional ideas to treat it, so I was once again sent back to my regular neurologist.

It's now been ~ 6 years or so since my symptoms began, and I am now permanently disabled because of this disease. I am still trying to accept this, as it has only been a year now that I've been unable to work.

My Fibromyalgia is exasperated by the TN/TAC, and I'm still dealing with unresolved emotions from it all. I had to leave a very successful career working for a Fortune 100 company. I started there after graduating from college with honors and dual degrees just a couple of years prior. I am almost 45, and instead of a lucrative career, I am looking at living in pain the rest of my life.

My neurologist goes to conferences about 6-8 times a year, and takes my file with him to each one. He's talked with his colleagues to see if anyone else has seen anything like it, but so far hasn't found anyone who compares. He does plan to eventually have my case published in a medical journal, but we're still working on trying to stabilize me. I have tried getting the shingles vaccine, and am on antivirals (along with a myriad of other prescriptions), but my condition continues to worsen. Hopefully one day, someone figures out how to repair nerve damage. I can only hope!!