Comments on life, the universe and everything from an aging Sixties survivor.

Location: Massachusetts, United States

Ummm, isn't "about me" part of the point of the blog?

Thursday, January 31, 2013

Skip if you like

Sometimes I use this space as a "pain diary." No, this isn't kinky: it's a way for patients to keep track of their chronic pain for their providers. If this isn't your thing, feel free to skip.

The Beast is pretty much back. The interest level in trigeminal neuralgia is one thing that sustains sanity and beats back self-pity. The only pity in the business is that it's a pity this interesting disorder isn't happening to somebody else.

Things are a bit different this year. First, it is manifesting differently. For several years, I could rely on episodes starting with  sharp flashes in the temporal branch (V1) of the nerve. The sensations would descend to the Gasserian ganglion, the central router of the trigeminal nerve, then feed out along the maxillary (V2) and mandibular (V3) branches (into the jaws). Only when things became very extreme would the sensations descend into the trigeminal root, its road to the spinal cord.

This time, the initial sensations are in the ganglion most of the time. They then branch  into V2, V3 and the trigeminal root. V1 is almost a bystander. Besides having to rearrange the defences, this involvement of the root is something I haven't had to deal with since the first years I had TN. Even when the pain is moderate, which it mostly is right now, involvement of a large, deep nerve in the raree show creates sensations that become a major preoccupation.

The triggers are changing, too. Temperature contrasts  still play a role: drafts you would not even notice are enough. But chewing, which used to be secondary, is tied for first place now in my list of triggers.

That's moderately scary, considering all this is happening despite the support of drugs that would turn you into a neural puddle if you began to take what I take all at once. Any thinking person with TN who knows its history has to remember, every day, the ordeals of our sisters and brothers who endured this before our meds were discovered, barely 40 years ago. TN is incurable but not fatal per se. Today, the leading cause of death associated with TN is suicide. Not long ago, a substantial portion of the deaths came from starvation. People for whom chewing was the trigger would rather starve than face the pain of trying to eat. Sharing this makes one very thoughtful.

At any rate, the latest chapter of the adventure has begun again. Stay tuned.



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