Yesterday I went to the dentist. Even though I no longer have the touch pain I have 'phantom pain' (also called anaesthesia dolorosa). Dr H, a graduate student at the university dental clinic, started setting things up. I was there for my right front tooth, the one I injured when a fell 6 weeks ago. As she started to look at the tooth she used both hands; the right one on the right side and the left hand pulling on the left side of my mouth. Each time the left mouth was moved or pulled, because of the paralysis, the whole side of my face was being moved and pulled. It is a very discomforting and unpleasant sensation. Anticipating this I flinched each time I saw her hand come over the top of the left side of my face.
I explained to her that the left side, even though I no longer had the 'tic', was very sensitive to touch. It was not pain but still unpleasant. "If I flinch it's not you. It is just the way it is." She seemed to understand. At least I thought she did until she asked for an assistant. "She is very scared." she told the assistant.
The assistant stood to my left side. "I am not scared of the dental work. I am concerned because I know when you touch the left side it will be very unpleasant." I reiterated the 'it's not you, it's me' mantra.
They tried to minimize the touch to that side as best they could. It did not always work out but I think the fear of the discomfort outweighed the number of times they set the discomfort into motion.
The fear remains even though the spontaneous and triggered pains stopped in 1998. I no longer look out the window and worry when I see a breeze or rain, or hear that it is cold, etc. I walk out my door when the weather is bad and I smile. "Thank G-d, I can do this." The worry is gone.
I get some 'tics' now and again. They are not the same sensation but a strong feeling, sometimes an itch, taken to the 50th degree, sometimes more like a slightly reminiscent electric sensation, tic yet not tic. Either is strong enough to stop me in my tracks for a few seconds or sometimes minutes; longer than any tic I had when I did have the tic pain. They also only happen in the area where I did not have the trigeminal neuralgia. That was in what is called V1, V2: the top of my forehead to slightly under the eye. These I get only below my nose. My pain doc and I think these are from the anaesthesia dolorosa and not tn.
I know they are not tn but the fear comes as soon as the pain is there. It's coming back. Oh my G-d, what am I going to do??? Then it stops; and the fear ends as well.
I know the dentist will not set off the trigeminal neuralgia, she can't - I no longer have it. And yet, as she puts her hand up and moves to the left side of my head, my eyes start to water, my body tightens. I wait for the assault that, thankfully, never comes, not in a trigeminal neuralgia lightning, knife splitting, skin tearing torturous kind of way. I know the unpleasantness of the phantom pain, very discomforting but tolerable. Bearable and more forgettable.
Does the pain ever end? Yes. For me, the worst of it did. Does the fear ever go away? I still have hope.