Solving Trigeminal Neuralgia v.2!

by Michael S. Kaplan, published on 2015/03/02 19:47 +00:00, original URI:

So I just went through my second ever radiofrequency rhizotomy for acute onset trigeminal neuralgia which seems to have been quite successful so far, so I wanted to talk about it a little bit here with you....

(I will be talking soon about the many differences between the two procedures, but this blog is about something entirely different: what happens next!)

I am now completely sans pain, and have to go through the difficult process of deciding (with neuro MD help) which medications to taper and how much, so I can work out a schedule of when to actually do the do the aforementioned reduction.

First and most importantly, this will mostly be with the help of my neurologist rather than my neurosurgeon, since:

• she prescribed all three of the actual medications, and

• all three have other neurological uses beyond the one serious neurosurgical problem that I have apparently solved, and

• no offense, but I've been seeing her for decades and I've only seen him for weeks....

The risks of doing it incorrectly are pretty harsh, so this is a Very Good Thing to get right the first time, if you know what I mean.

First there are the three medications that I'm [currently] taking:

baclofen, which I have been taking on and off for decades for spasticity in oral form and most recently had an intrathecal pump added via an unrelated surgical procedure three quarters of a year ago (which others have taken successfully for both trigeminal neuralgia and seizures);

keppra, which I have been taking for a few years for an unrelated seizure disorder secondary to my multiple sclerosis (which others have taken successfully for acute trigeminal neuralgia);

Tegretol, which I have tried in the past for trigeminal neuralgia (and which others have taken successfully for both trigeminal neuralgia and seizures).

The one thing that I probably cannot do without lots and lots of caffeine is nothing at all, because the current dosages lead to me being drowsy to the point of it affecting my ability to work and interact with others, and as a "bonus" may not be completely resolving my seizures.

In the long run, the most likely long term medication changes will be:

• no change to the baclofen since it never seemed to be very helpful to either trigeminal neuralgia or seizures (for me, at least!);

• increase to the keppra since I have been able to tolerate higher doses in the past and may still be having some seizures on my current dosage;

• complete cessation or at the very least of the Tegretol since it never seemed to help very much with either the trigeminal neuralgia or the seizures and has often had unpleasant side effects associated with it;

• [possibly] adding another anti-seizure medication if the keppra dose proves to be concerning and another with fewer negative side effects than Tegretol can be found.

However, since the main acute effects of changing medication too rapidly is seizures and the main long term effects of reducing the current dosage of medication is some possible small recurrence of trigeminal neuralgia, a good solid plan taking all factors into account is what I need here.

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