December 6, 2009

Trigeminal neuralgia, or the joys of a rictus grin

TN, both acute and chronic, is a frequent gift from the Mad Sow.

"Trigeminal neuralgia (facial pain) is characterised by brief episodes of intense, stabbing, electric shock-like pain on the face. These episodes occur spontaneously or can be triggered by light touch, chewing, or changes in temperature (i.e. cold). The pain is so intense as to be completely disabling. In addition, weight loss is common because oral triggers prevent affected individuals from eating enough to maintain adequate nutrition.

A less common form of the disorder, called" a typical trigeminal neuralgia", may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs."

Okay, this is all very jolly, as is the comment that it is a very treatable condition. Surgery, medications, nerve assassination all can help...however...

First, one has to see a doctor to have it treated. As my MS clinic makes a game out of not seeing patients, this seems unlikely to happen in my case.

Secondly - weight loss? Well, that could be true - fact is, with the pain and my difficulties in swallowing, there are few things I have the will to eat. Unfortunately, ice cream and mallomars and fudge and wine and beer and all that fits sweetly down the old gullet...So I have yet to notice any advancement in my weight loss goals. Alas.

What I do notice is fatigue and pain when I have to talk, always present facial pain, total facial numbness, and the feeling of dropping ice cream, mallomars and fudge out of the corner of my mouth....smiling, one of my favorite things, needs to be paced during a bad stage, or I live to regret it, with needle sharp pain up along my eyes and into my nose. I have a constantly running nose and frequently running eyes...

("Does your nose run and do your feet smell? Why, you're built upside down!")

It's SO attractive. Of course, I probably feel it more than it is visible, but on days like today I feel like my eyelid is drooping, my lip is spasming, and my cheek is protruding into space.

On the good side, I've lived with the pain for so long that it is no longer completely disabling. It's just a constant undercurrent, sometimes more turbulent, sometimes calmer. It's hard to believe it has been my constant companion since 2002. It snuck in, feeling like a gentle caress on my face, fingers stroking my cheek like an inattentive lover to the point of irritation. Then sharp pain along the line from ear to nose. Then tearing, and lip numbness, and hearing problems, and all along a sneaky chronic pain that I live with until an unwary smile knocks my socks off with a fiery line from ear to face.

Unlike my other varied MS symptoms, I don't ever enjoy this one. Some of the others are kindof amusing for a while, but I suspect that's because I never know what I get next. The ones that hang around lose their amusement value. So far I have this facial pain thing and now chronic spasticity in my flexor muscles in my legs. I'm getting bored with both of them. I'd ask for a new symptom, but I'm afraid my body would agree!

1 comment:

Lisa Emrich said...

I'm so sorry that TN is being obstinate today. I have the atypical form which often feels like an elephant is standing on my face. No fun at all. It developed after I had shingles on my face shortly after my first experience with IVSM. We thought that maybe the pain would go away, but alas it has not since 2005. At least neurontin does seem to help me. Hope your pains and symptoms decide to take a break soon.