As an old--very old now--newspaper editor and sometime journalism teacher and book writer, let me say first I bow to the excellence of this piece. Brava!
However, I cannot bow to its unintended optimism about Microvascular Decompression. After years of screaming and hollering when TN seized my body and raggedity remaining soul, I dumped all the potions prescribed for me and opted for MVD with the lead brain surgeon at the University of Washington School of Medicine. I went through all the nasty pre-ops procedures, said good-bye to my wife and son, wheeled away to the operating theater. Eight hours later I awoke with nurses peering at me. I hollered and twisted. TGN was still with me. The operating team was disappointed. And so was I.
Three days after being let out of the hospital, I came back, in a special ambulance, with two nurses in moon suits with me, caring for my swollen face. I had a little leakage from my brain, about a quart dragging my cheek down to my Adam's Apple. And I had a little infection from bugs that thanks to computer transmissions puzzled all the bug docs in western Washington state--hence the moon suits.
I spent the next three weeks back in University Hospital getting a kind visit from the Medical Schools chief bug specialist congratulating me on having a microbe that no one in the U.S. could identify. So for the next three weeks I was plugged into a super cocktail of bug and virus killers. It, alas, did not contain gin. And to get rid of the juice pouring past the bad plug in my skull, I enjoyed three spinal taps. A wonderful way to stay awake, believe me. I did, however, become pals with a daily parade of Medical School students of all sorts. The only thing I did not do for them was die. At last, my surgeon had me wheeled off again for another operation, this one to cement over that hole in my skull. All during this time I had my daily parade of TN attacks, despite my diet of anti-TN pills.
At last I went home to enjoy TN in familiar surroundings. The TN pills did soften the attacks. They also made me giddy, dopepy, dozy and dumb.
So two years latter, I signed up for Radiosurgery, for having the TN nerve zapped by radiation. That only took a day's prep, no brain cutting, lots of jokes with the nurses, and once over, I got up, wished everybody good-bye, and with my wife headed for a good jazz bar. The next morning we drove home. Halfway there, I damn drove off the freeway at 75 mph. Old TGN whacked me again. Predictably, the docs said. It will go away. I believed them. It did, a couple of weeks later. A month later, I was fly fishing in the Skagit River, butt deep, when whap! The TGN attack dropped me into the river. I still brag about being the only person in the world who was drowning and enjoying a tic attack at the same time.
I reverted to pills. Two years later, disgusted with them, I enjoyed Radiofrequency Lesioning, doctor talk and name for running a hot needle up the nerve while he or she asks, "do you feel that?" It is not for nothing you are wrapped in a tight straight jacket strapped to the table while you answer. The jacket keeps you from punching the doc, or jumping from the operating table, or both. After an hour of that, I could honestly answer I could not feel anything on the left side of my face. A bit tired, I trudge d off to the jazz bar again with my wife and ordered a double martini, with two olives and a lime twist. On my second such I had a TGN attack second to none.
That was in 2011. In 2012 I ferried my zapping face to a head-pain specialist in Anacortes, WA. He said he would work with me to find the right combination of drugs that might keep the pain away. After six months, we did, for me. It is Gabapentin 800-mg and Lacosamide 150-mg and Acyclovir 400-mg. (I am a big guy.) Lacosamide in this country is known only and sold only as Vimpat. Depending, it sells here for $600 to $800 for a months supply. I buy my supply in India, where, with postage, it costs a buck a pill. Acyclovirt keeps down the Herpes virus. I am convinced thatthe Herpes virus causes TGN far more often than doctors say or think about. I've had Chicken Pox, Shingles and lip blisters, nice things Herpes causes.
I add my history as a cautionary footnote to the essay we're all responding to. And to say, don't give up; and find the physician who knows something about TGN and will work with you over and over to put TGN asleep, whether with the knife or the radioactive buzz or with needle or with the right chemistry. It's better than suffering this goddamned pain.