Hey Baukje,
My name is Merl I’m a member of the modsupport Team here on Ben’s Friends.
Facial pain or in my case TN or Trigeminal Neuralgia has been one of my many pseudo diagnosis. I say pseudo because it wasn’t a direct diagnosis but rather an elimination process ie If it’s not ‘X’ and not ‘Y’, then it must be TN.
The trigeminal nerve is often called the 5th cranial nerve and is the largest nerve controlling most of the face’s sensory and motion function. Damage anywhere along that nerve tree can affect any part of that nerve tree. Often we may feel pain, for example in the eye, but although the eye feels the pain that is not always the location of the source. Eye pain, behind the eye has been one of my ongoing symptoms.
You’ve been given some really good information by the other members here
But here’s a bit of my story:
I’d been telling medicos for years something was wrong, but it was all minimised as ‘growing pains’, when I was a child and as ‘psych issues’ in my teens because “…we can’t find anything wrong…”, but I knew something wasn’t right. I soon learnt it was safer not to say anything. Add ten yrs and more Dr’s negating my concerns, I’m driving down the road and the lights went out. I couldn’t see. They found something growing in my head. The neurosurgeon went in to get it but it was growing a bit close to brain structures I need to survive, so it was reduced in size rather than completely cut out.
Post surgery things were not good, my symptoms multiplied. The surgeon’s view was ‘I operated, I fixed’ but this was FAR from anything like ‘fixed’. He eventually decided to operate again and again. Each was to deal with an issue, but each has left me with ‘gifts’ (symptoms). I’ve required 6 neurosurgeries so far (and been told I’ll have more to come) and I’m still trying to learn how to manage it all.
The idea that my trigeminal nerve has not been damaged via surgery, multiple times, would be impossible. I’ve trialled every suggest and theory put to me from alternative treatments like acupuncture to medications of every colour and creed. And I’m still hunting for my “key”, Some days I manage OK, some days it all manages me and no two days are ever the same.
For me, I’d STRONGLY recommend eliminating EVERY other option available to you before surgery. I know some medicos can be extremely confident in their surgical abilities and profess to know all about it, but once you go surgical, you can’t go back to ‘before’. Those ‘gifts’ I spoke of haven’t just added up, they’ve multiplied each other.
P.S. Don’t ever be apologising for a rant, EVER. We all need a safe place to let it out and who better to rant to than people who have a lived experience… …Us. When I first became a member here it was all rants 
I was annoyed with the world and everybody on it. This is not an easy journey and anybody who ever tells you otherwise, has never been in this situation themselves. We understand because we’ve lived it too.
Merl from the Modsupport Team
Thank u for this kind message! <3 Really does me good.
.