The Different “Flavours” of Trigeminal Neuralgia


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!

Thank You To My General Practitioner


I have been seeing my general practitioner doctor for two years.

I first remember meeting him as a depressed and anxious wreck during winter, where he looked at me and prescribed me antidepressants immediately, with a recheck in a couple of weeks.  I revisited a few times, both of us delighted that the first SSRI was a winner, and then I didn’t see him for a bit.

I didn’t see him until after my physio suggested my overreaction to injury may be fibromyalgia.  I described my symptoms to him and he said the words I hoped to hear:  “it sounds like you have fibromyalgia”.  We tried amitrip, then he suggested we try pregabalin, as amitrip wasn’t working for me.  It was a winner.

Then I got face pain and I went straight in to see him.  He said the words I really did not hope to hear:  “it sounds like trigeminal neuralgia”, but we treated it for a possible ear infection and possible shingles in the ear (because one of his friends had it years ago and it took a very long time to figure that one out).

I have visited him every week for so long the receptionist knows my name.

We’re now going for a private MRI and a public neurologist to get this sorted as quickly as possible, because I won’t be able to continue my education next year if this pain keeps up.

I have been incredibly lucky to get an amazing doctor first up.  He has never doubted what I have to say, never told me its in my head, always done additional research to ensure he is providing optimal care, and has taken the time and effort to personalise the treatment to my peculiarities.  He has been an amazing point of support throughout all of this.

So to my general practitioner:  thank you.  You are amazing, and you are improving my quality of life more than I can say.