I recently met with a specialist neurologist after nearly 3 years of PHN pain on the left side of my face and head. He did a more thorough examination than any GP had done and concluded that, although I do have PHN, it is manifesting as Trigeminal Neuralgia with the main Trigeminal nerve being affected.
The key difference is that there is specific medication for treating TN, which should be more effective than General PHN treatments. I've only just started the medication but will keep the forum posted on how it goes. This might also be a diagnosis worth investigating for anyone else who has pain in the face/head
Yes, please keep posting your experience and how well it is working for you.I am on my way out to the doctor again today to check the blistering. I have never in the past year had any blisters only small heat rash like symptoms all through my scalp and face, neck, chest area. They are definitely becoming more agressive and thats the reason I had to cut my long hair to wearing it in a pixie now so the rash could 'dry' out faster and more completely. Much better results!
Hi Geezee
I have PHN on the right side of the head and neck. It means constant headaches although I recently had an injection in the nerve which has brought considerable relief. They say it wil last only a short time and I'll have to go back for further injections. I was on Neurontin 3600 per day also small doses of Lyrca and Tegritol. I would be interested to know what kind of meds you take for Trigeminal Neuralgia...
Hi Geezee,
What medication are you taking? Also how are you finding it? I am 31 and have been suffering with PHN for nearly 7 long years. I had shingles on the left side of my head, face and eye which hs resulted in PHN with the TN being affected also. The pain is unbearable as you know, its shoots down the left side of my nose at the height of it.
I have tried Amitriptyline, Pregablin, Gabapentin, Carmazapine, Capisan cream and Lidocain patches. I have had no joy with either of these. I am back to the hospital next Monday to dicuss possibly fitting a Peripheral Nerve Stimulator fingers crossed i get the go ahead cause i am not sure how much more of this pain i can take. Its affecting my work life and social life. 
Hi Ron
Ive just started taking Tegretol. Still too early to say how effective it is tho
Hi Kelly
Sorry to hear that you have been suffering so long. I've only just started Tegretol, which is a form of carbamazepine. I'm hoping it works as I've tried all the other meds and not had much success. The specialist I saw was not too hopefully about the pain disappearing anytime soon, but did mention that there might be surgery options in the long run. The pain affects my life too, work is very difficult.
Good luck with your procedure, please keep us updated.
My husband had shingles in right eye 2 months ago. He is suffering terrible PHN now. They are treating him with nerve block, carbamazepine, gabapentin and cymbalta. Not much relief. He feels the pain in side the eye and the pain also moves up and down his forehead on the same side. He also has damage to his 4th cranial nerve causing an eye palsy. this is the most awful thing in the world. Does it ever end? When can he anticipate some relief? After reading your post I am curious about the trigeminal neuralgia....my husband may be suffering from this. Can you tell me your symptoms?