My tn pain jumps ALL over the place up and down my TN nerve. Whoever thinks that’s not a sign of tn doesn’t know how varying this disease can be from person to person. I have learned a couple of things through my journey: 1) you can actually overdo it researching things on the Internet. I was convinced I had at least a dozen rare diseases along the way. You need to be informed, but you also need to know when to back off
2) MANY doctors have no clue what’s going on. I always remind everyone that half the doctors graduated in the bottom half of their class. A handful of them just barely scraped by with the bare minimum. Keep looking until you find the best ones who really know how to put in the work.
3) You really need to learn to advocate for yourself, and if/when that becomes too overwhelming you need a family member or trusted friend to do it for you. This is a very confusing maze to navigate and sometimes you need someone to help you
Oh, and I get that mottling color too. I just chalked it up to being pale and being able to see more of my vascular system than other people. It happens mostly when I get cold or stressed. When I get hit with an intense shock of pain sometimes I’m overcome with a hot flash followed by super clammy skin. It’s just my autonomic nervous system kicking into high gear in response to my pain. If I were you I would still get it checked out though.
I certainly agree about the pain jumping all over the place. Anywhere along the nerve pathways is primed to get in on what I have come to think of as “the whole orchestra” because it may begin with the outside edge of ear pulsing burning because of some little trigger I haven’t noticed - like unconsciously brushing my hand across my face - and move deeply in, then gums, teeth, throat in tonsil area, deep in sinus, deep down in the throat, and roof of my mouth and all of that always triggers a corresponding feeling around the mastoid area and on the side and top of my head like someone is hold a hot curling iron with an electrical current going through it. When driving it activates back of the neck areas, down the shoulder, under the ribs, down my arm - which can look mottled - and buzzing in my fingertips. Also my lips can be triggered or go numb. And swallowing can be hard. Speaking can unbearable sometimes, not just because of pain but the effort is huge.
I have decided to make a visual journal to take to appointments. I am going to make a few head models with the nerve pathways and then use tracing paper to make overlays of the different pain that comes on different days, with different activities, etc. I got a brain colouring book at the university bookstore ( but you can get them on amazon) to really memorize
the pathways. Also, the trigeminal nerve is made up of about 100 strands of fibres and I think are triggered at different times and in sympathy with odd triggers.
I also get the hot flushing like heather and sweats and clamminess.
Something else I was thinking about in your case when I got back my appointment and most recent labs back. my sodium, hemoglobin, blood sugar all dropped quickly from the trileptal trial and so she told me to stop immediately. But I was feeling like the tide was going on my vitality, like id been suddenly drained of life. and was wondering if that is what your were feeling. I’m feel much better today already but had to go off island for more blood tests.
Keep working with your neuro. And resist getting carried away in your mind about the myriad of diseases.
I’m also in support for mindfulness meditation. Lots pain centres have these courses. A good book to start with is Jon Kabat Zinn Wherever You go There There You ARE, Full Catastrophe Living. This is highly beneficial. We need to cultivate good life skills to work with our pain.