Hi Penny. Yes, i have the PHN along with the shingles. Even when the shingles were not present, the PHN was often there. After many different pain relievers, it finally took high doses of Dilaudid, Morphine, Amitriptyline and Clonazapam, which is why I don't EVER self-medicate. My husband or a family member gives the meds to me as it is needed. My PHN is in my right leg and in my head, face, teeth, ear and eye.
My case is somewhat complicated. My shingles began 8 years ago on my hip only. I was diagnosed with recurring shingles and placed on a daily low dose regimen of Acyclovir that continued to be raised in dosage, until the outbreak finally became less frequent. It took 3000 mg per day, every day but they slowed to only a couple times a year.
During that same time, i began to get a mild rash, not blisters, but a very mild rash on my nose and right side of my face. That was my only symptom at first for a several months. They rash didn't hurt at all but the very tip of my nose hurt tremendously to even be touched slightly. It would come and would back off but would never go away completely. I saw my doctor and a dermatologist. I tried creams and oral meds. No help at all...totally unfazed.
Then i began to get sensations to the way back under my tongue. Weirdest feeling ever, not extreme but twinges of pain, not sharp, not burning, just pain. This would come and go and lastest a few more months. Thereafter, came pain in my head and forehead, much like I'd been hit suddenly, then gone. Then the ear ache came.
I was probably 10 months into this when, on occasion, i would feel a quick jerk in my head. Like i was quickly nodding yes. It came and went but was getting stronger and more often. I saw Infectious Disease doctors, Neurologist, Internest.
Other than the jerking back of my head, all of these symptoms were always focused more on my center and right side, same side the shingles on my hip had always been but it didn't look like shingles, or act like shingles and i was taking 3000 mg a day every day for a couple years at that point. So shingles was ruled out as the cause.
Then one day at home, i received a call from my Mom, who lived out of town. She had been showing possible early signs of dementia for a couple months and she was even getting verbally aggressive, which was totally out of character for passive personality. This particular day, she called me and verbally flew into me with fury, then she hung up the phone. My Mom and I had ALWAYS been very close, so the phone call upset me terribly but literally before i could even cry, my head began to jerk violently and repeatedly. It didn't stop this time. Felt like I was going to snap my own neck.
I was rushed to the hospital, seen quickly, CT, MRI, total work up and given meds in my IV that made the jerking stop as long as i was laying still. They were looking for a brain tumor. The rash was there but it was mild. While waiting for the results, i had a pain hit me in my ear, like a bee sting to my eardrum, then back to my cheek. I screamed. The pain began jumping back and forth, like lighting in a bottle, and began to feel like lighting in a bottle. It bounced from my ear, to my cheek, to my teeth, to the top of my head, to my chin. It moved fast and it was like electric shocks.
The rash started to turn fiery red and my eye was swelling slightly. Every place it hit, i grabbed and could only scream. The attending doctors sedated me. I woke up in a hospital room later that day. These episodes kept coming but were getting worse the day. Each time, i was sedated. Many doctors were consulted.
Due to the high dose of antivirals and no outbreak on my hip and nothing to suggest that it was shingles elsewhere, it was decided that due to me being on the high dose antivirals for so long, that my body may have possibly gone toxic. So, while sedated, my IV antiviral was discontinued to see if i improved. I woke up in a living nightmare. The pain was a literal lighting in a bottle, the mild rash expanded quickly across my face, my right eye was swollen to nearly shut. I was losing my vision in that eye and all I could do was scream, if i was awake.
Another specialist was brought in. He was very kind and very patient. I was awakened and immediately began to scream before my eyes opened. The doctor began to ask me specific questions about the path of the electric shocks. I was still heavy under sedation but managed to speak in sentence pieces. With the help of my husband assisting, i tried to answer his questions best i could. Then I was put back under for 3 days.
When i woke, it was then that I learned that the shingles was actually in my eye. The high dose antivirals was keeping it masked and i had actually had shingles near continuous for 14 months. It damaged my fifth cranial nerve, leaving me with mioclonic seizures (head jerks sharply) PHN and Trigeminal Neuralgia.
Truthfully, when i took the Shingrix vaccine, i did not expect to have ANY relief at all from the nerve damage and was satisfied if i could at least lessen the shingles outbreaks. I read every article published by the CDC and their research these past 5 years before the vaccine was approved this past January. It makes the claim that it has a 97% success rate against shingles but it ALSO claimed to help with the PHN but i doubted it help me, in my case.
I just spent my fourth day with NO pain. I have taken nothing for pain and even my mioclonics have begun to calm.
I am realistic and knowing 14 months is ALOT of damage, so the pain may return. I am still taking the mioclonic seizure med at bedyime still but i am in NO pain anywhere.
Maybe this is only temporary, or maybe they finally found the cure, i truly do not know but for now, the vaccine appears to be working for both the shingles and the PHN.
I hope this gives you the information you were looking for and i am truly sorry if you are hurting. God bless you, friend.