First of all, thanks to this forum, I have an appointment with someone who has been recommended by some of you. I will be seeing Dr. Cramer in Blacksburg, VA, but not until the end of April. Until then, my ENT is really working hard with me to try to figure this out.
He is really proud of the research I have done trying to figure out my pain, and has the attitude "Information is good." which isn't the case with some of the doctors I have seen you talk about in some of your threads. So, I feel blessed.
He wants me to ask how many of us experience this pain in all three branches of the nerve area. He told me that with all that he has learned, that a diagnosis of Trigeminal Neuralgia that the pain is usually felt in the middle branch. It isn't that he doubts me, he just wonders if something else might be going on.
He also wants me to ask, Does your pain ever shift from one side of the head to the other?
He is also curious as to how many of us have the sore areas that appear in our mouths. He can't help but wonder if it is not some kind of herpes zoster. (I am recalling this from memory, and hope I am asking the correct questions. I have a note the nurse took for me, but the wind is gusting up to 40 MPH and snowing and I don't want to go to the car to find the note.)
These are my symptoms:
Imagine an imaginary a line drawn from the middle of my chin, through the middle of my nose, going across the forehead across the top of my head and down the back of my head. A straight line.
Pain on one side of my scalp, that travels to that same side of my face, making my skin painful to the touch. (also making my scalp painful and brushing my hair uncomfortable)
Then I feel my Eustachian tube, on that same side of the face start to fill with sores ( or this is at least the sensation that I have). With this I get the pain that feels like an ice pick being stabbed into my ear.
At that point, I feel pressure behind my eye, like I have the same kind of sores behind it like I have in my ear and on the roof and gums of my mouth. My eye feels kind of dry.
At that point my mouth gets all kinds of sore spots (not actual ulcers) but they feel like ulcers, on that same side of my face. It's like I have an imaginary line on the palate and everything hurts to one side or the other of that line but NEVER the entire mouth. My gums might even swell, on that side of my face.
Sometimes, my nostril on that side of the face gets sores in it.
Currently, all of this has been happening on the left side of my face. I suffered from the end of October through the first of December, which at that point, my left side of my face went into remission and I finally felt relief. Only to find that two days later, the right side of my face became afflicted. But this only lasted for three days. I have been pain free since about December 5th.
Another question. Can the pain leave as quickly as it comes? I have actually felt the onset, taken a hydrocodone or two and had the pain to mysteriously disappear within a day. But other times be visited by the pain for a week or longer, and this last time lasting for about 4-5 weeks. (The longest I have ever suffered)
Does this sound like Trigeminal Neuralgia to you? Do the sores in my nose, mouth or ears make it sound like some kind of herpes?
Medicine is a grey area, when it comes to a diagnosis. It's apparently a crap shoot.
Thank you for any information. OH and my ENT started me on Neurontin. One a night for three nights, two a night for three nights, three a night until I contact the office in three weeks.