I have only had Trigeminal Neuralgia for a matter of months and yet it feels like years. It’s interesting how pain has a way of warping your sense of time. For me, it’s like there is no ‘before pain’, there is only the current existence with pain.
The pain has a massive impact on my life. I do not attend university lectures as normal because the sound and the added massive excess of stimulus is too much and I can no longer wear my Bose noise cancelling headphones because they apply pressure directly to the trigeminal nerve. I am fortunate that there is a student who records all lectures and I do my lectures that way. I have to be careful how much I use my face when I’m in a group work setting. I often have to cancel or reschedule my tutoring work because of it (bless them for being so patient with me).
Even though I am very early in my journey with this painful disease, I am already learning that there are many different flavours of trigeminal neuralgia.
On Sunday night I experienced what I can only define as ‘freezing burn’ throughout the entirety of the lower two branches of my trigeminal nerve – my mandible and maxilliary teeth, down the jaw directly from where the trigeminal nerve came out, along my zygomatic arch, and up the side of my nose. The upper branch was only partly involved, trickling up the side of my brow and one little pinch at the middle of my eyebrow.
It was unresponsive to heat or cold, but responded positively when I dropped my friend off at the airport and had the aircon on hot hot HOT and so the air I was inhaling was more along the lines of 26-28 degrees rather than … 10-15. It went back to freezing burn once I hopped out of the car and returned home.
I still fell asleep immediately. One of the blessings of Tegretol is I fall asleep in a matter of minutes and I sleep like the dead.
Today I’m experiencing the odd sensation of … numb pressure. It’s like my trigeminal nerve is numb but expanded somewhat, so there’s no pain, just the sensation of pressure and fullness. It is vastly preferable to all the previous sensations my trigeminal nerve has graced me with!
Unfortunately it seems to have only lasted for a few hours, and now I have my usual bone eating sensation in my jaw and zygomatic arch and pressure ache across my brow.
My left trigeminal nerve has been relatively quiet as of late. It was silent while my right trigeminal nerve was playing a character in Frozen – either that or it was twigging at such a low level that my right trigeminal nerve took all of my attention.
I’m recording these different sensations so I can remember what happened and when (because I have some serious memory problems these days), and also so that if someone else experiences pain like this, they know they’re not alone!