Hi folks - found you last night while waiting for the Lyrica to catch up with the pain.
I'm a 52 year old male living in NC. First started having pain around my right ear about 20 year ago. It was mild, and would last only 15-30 minutes, with an episode every few months. It gradually got worse - by 2004 the episodes were once or twice a month and lasted up to an hour with considerable burning pain around my ear. It would go away if I took a nap.
In 2006, the pain started and when I woke up after a nap it was worse, not better. It was what I think it would feel like if someone set a clothes iron on the highest setting and pressed it against my ear and the side of my head for a couple hours. After about 4 hours I made it to the ER and they gave me Reglan - which made me want to jump out of my skin, but seemed to attenuate the pain. A visit to a neurologist a few days later resulted in a diagnosis of gpn and a prescription for Lyrica, 100-300 mg prn.
The Lyrica would stop the pain after 30-60 minutes, but make me sleepy and foggy for 12-18 hours.
The frequency of episodes increased to about once every 10 days in 2008. Between the pain and the side effects of Lyrica, I was close to taking disability leave from my work and looking for some sort of assisted living care. In addition to the searing pain, I have difficulty swallowing and my jaw displaces to the left.
Out of some desperation, I tried acupuncture in 2008 and found it surprisingly effective, The treatment involved 6-8 needles inserted around my ear and twisted every 10-15 minutes for a 60 minute session. The pain would usually stop within 20-30 minutes and there were no side effects.
In 2009 I took a job about an hour away from my acupuncturist. I tried two other clinic closer to my work, but those treatments were ineffective. Through the summer of 2012 I was only having an episode about every 2-4 months, so it wasn't too bad.
Then in December 2012 the episodes came much faster - one or two a week. I describe my gpn in 4 stages: 1 is a mild tightness in the right side of my head, mild to moderate pain. 2 is moderate to considerable pain with great tenderness around and in front of my ear and my swallowing reflex is triggered often. 3 is severe pain with displacement of my jaw to the left, difficulty swallowing, and inability to raise my head enough to see out of the windshield of a car. 4 is ... tough to describe. It is humiliating... mind-cracking pain, I have trouble controlling my response to the pain... I can't form coherent sentences and sometimes not even coherent thoughts. I've had kidney stones and they haven't been as bad. I've been through a cycling wreck with a compression fracture of my spine and a cracked eye socket and it wasn't as bad. I've had a tumor cut out of my right inguinal canal and it wasn't as painful. Sometimes I wonder if Van Gogh had gpn... and cut his ear off in an attempt to stop the pain.
The episodes have slowed down again... I found that some massage therapy and crania-sacral therapy helps. I don't like the Lyrica, but it remains an essential last resort. I tried a Lidocaine/Gabapentin/Ketoprofen topical ointment but didn't find it effective.
The swelling in front of my ear in stage 3 led me to consult an oral surgeon to see if this was tmj instead of gpn, but he was certain after several sessions that it is not tmj.
I think the swelling is atypical, as is the long duration searing pain. Without the Lyrica or acupuncture, an episode will last several hours to a couple days.
I worked as a chemist many years ago... and worked in 1987 at the US ARMY Chemical School, training with military nerve agents. The protective gear (MOPP4) left our necks and ears covered by a hood, but not sealed. My position on the team in the training exercise usually had my right side toward the contaminated equipment - it seems plausible that nerve agents in the air could have been absorbed by the sweat on the skin of my neck and ear and caused subtle long term damage. Who knows?
Anyway, I'm glad to find you folks - I couldn't find much at all about gpn on the internet a few years ago. Hang in there... life is tough, some days, really tough, but still good.