I'm being sent to neurologist with this as a possible name for my facial pain. Have been given a diagnosis repeatedly over 2 years but always assigned something like 'atypical facial pain' which doesn't really mean much. In the UK; their TNA website (UK one) was a good source of info!
I was told the same until I asked my GO for a referral to The National Hospital for Neurology and Neurosurgery in London where I got the most thorough examination and then my diagnosis my Trigeminal Neuropathy.
I use to have tons of facial pain, I recently found out my ears are shaped in a way that water's always inside my ears/throat/sinuses. I have neuropathies in lots of my body. I'm in the US right now, and I've had terrible tooth pains where all my teeth are collapsing toward the center, but my doctor didn't want me on the painkillers that worked. She said beer was good, and my dad looked up the laws and it's legal if he's with me to make sure I don't do anything stupid. I'm seeing a neurologist right now, and am waiting to see a rheumatologist who has the experience to diagnose. Hope you find something helpful! T
I'm in the USA too. I developed trigeminal neuralgia (TN) after a fall where I struck the back of my head, 1998-99, just at my left cheek. I also have TMJ with DJD. My TN cleared up after 5-6 years but it returned in 2007 when I began having it as an aura to oncoming migraines. The TN has expanded to include the whole left half of my head and scalp over the past year. It reduced intensity after being put on gabapentin. 🙏🌼
Flappsy, this may sound strange to you (Or, then again, it may not.. LOL!!!!) I have an issue, as you know with TMJ and DJD and I have to say that I have this annoying problem where I actually feel on the left side of my head like my hair is growing or something. I can't describe the feeling any other way. It is a strange but not quite tingling feeling that feels very odd. When my jaw is hurting or sometimes even when it's not, I get it. The first time I told someone my scalp feels like my hair is growing, they looked at me like I had three heads... LOL!!! (The odd things we endure. Sometimes I wonder how I don't end up in the Booby Hatch!!!).
I think I have the opposite thing from you. There are times when I feel like I have a sock over my head. I'll touch my head, and it's "asleep"?? I am pretty sure that for me, it has to do with me having occipital neuralgia.
I've been trying to figure out the difference between trigeminal neuropathy and trigeminal neuralgia. There are times when my chin, side of face, and kind of by my eye is either numb/tingling or kind of painful. It's not what I call "flash" pain, just really disconcerting and uncomfortable, and pretty much only on my left side...
I know what you mean... My symptoms change and I keep getting new ones, I don't even know what hurts and what doesn't any more, The doctor asks me where my worst pain is and I have to say to them it depends on the day, the weather, what I'm doing, where I am, etc... They don't get it.... I think I should just reserve my padded cell now BEFORE the men in the white coats come for me.. LOL!!!