It Doesn't Matter What You Call It

Sunday Morning – April 23, 2006. 

I felt a quick pain as I rubbed lotion on my left temple.  “What’s that?” I thought.  There was another quick pain as I touched under my left eye.  “What IS that?” I thought out loud..  Later I found that it was nearly impossible to brush my teeth on the upper left side.  Every contact produced a quick jolt of pain.  The pains multiplied over the next few days.  Sometimes I felt a quick pulse above my teeth – it sometimes happened when I touched my face or neck; sometimes it just happened.  I had previous experience with face pain and I knew what my doctor would say, so I didn’t contact him.

About five years before, I had experienced severe pain in the right side of my face and my doctor had diagnosed trigeminal neuralgia and prescribed Tegretol for the pain.  I referred to the medication as “zombie pills” and at work I was the laughing stock of the office as I bumbled around and my brain worked in slow motion.  The pain stopped in a few days and my dentist later discovered an abscessed tooth.  The problem was solved.  During this period I had read everything I could find on the Internet about trigeminal neuralgia and when I ordered the handbook offered by the Trigeminal Neuralgia Association, I was put on their mailing list.  I paid no attention to their mailings as I now knew that I did not have trigeminal neuralgia.  Thank goodness!  My mother had TN in her later years as did one of her aunts.  I was glad that I didn’t have the “suicide disease” and I gave the manual to someone who needed it.

The new pains became more frequent and made it difficult to chew. Reluctantly, I made an appointment with my doctor.  Without touching me, my physician said it was Trigeminal Neuralgia and prescribed Tegretol.  I was not convinced.  This was not the intense pain that my mother had experienced, and it was very different from the pain I had five years before.  I hoped that the medication would not help but was glad for the relief when it did. I gradually increased the dose as I tried to eliminate the remaining pain.  My husband and I took a three-week trip and while it was enjoyable in many ways, I was frequently miserable. Some days it was painful to swallow as well as to chew; I was light-headed and my words often came out wrong.  Sometimes I was confused by very simple things.  At times I slept as much as I was awake.  It became a challenge to find a way to eat without pain.  I found that I could suck pudding off the spoon and down my throat without swallowing but everything else required movement and produced pain.

When we returned home, I asked my dentist to look for dental problems.  He checked very thoroughly and asked dozens of questions until he could determine that two teeth were extremely sensitive to hot, cold, touch- everything- but he was certain that there was no underlying dental issue.  When I asked how I would ever be able to have my teeth cleaned he just shook his head.

My physician referred me to a neurologist.  I still was not convinced that I had TN and hoped that he would say it was something else.  He asked about the pain and, without touching me, said, “ Call it what ever you want, it’s the trigeminal nerve.  We don’t know what causes it and there’s nothing we can do about it so you need to keep taking the Tegretol.”  I left with the impression that I should learn to live with the side effects of the medication and not complain because most patients had it much worse.  (He didn’t say that but that’s how I understood it.)

Eventually the short stabs of pain became less frequent and I stopped taking the Tegretol.  By the fourth day the pains were frequent enough that I voluntarily resumed the medication and returned to Zombieland.   I could live with the few jolts of pain I experienced each day when I brushed my teeth or opened my mouth but I was tired of having “Tegretol moments” in addition to the regular “senior moments”.

My daughter suggested that I look into upper cervical chiropractic.  I spent several hours reading the Internet information and learned that there is a highly qualified doctor in New Mexico.  I discussed the trip with my husband and was ready to make a phone call to discuss treatment when I received a card inviting me to a meeting of the Colorado Trigeminal Neuralgia Association.  I did not remember ever receiving an invitation before.  I saw that the speaker was to be a chiropractor who would discuss the treatment of trigeminal neuralgia.  I cancelled my prior plans for the meeting day and made the trip to Denver.

I found the stories of the attendees very interesting and was surprised that most of them also used the term “zombie” when talking about the medication.  Much of what Dr. Nikitow said in his talk was similar to the information on the Internet and he said that he had had success in treating trigeminal neuralgia patients.  He offered to examine all of the meeting attendees at no cost.  I wanted desperately to stop taking the Tegretol, so I made an appointment.

The examination consisted of X-rays and measurements – the things you would expect for a first chiropractic visit.  I again expressed my doubt that I really had TN.  Dr. Nikitow felt my head and neck and said, “It doesn’t matter what you call it…”   Hey- not again!  I had heard those words before!  Was I wasting my time again? Was I going in circles?  This is crazy!  He continued, “… but you have the same cranial and cervical patterns as all the other trigeminal neuralgia patients.”  Oh, then maybe I really do have that nasty disease.  At least he didn’t like the idea of taking medication.  I live in Colorado Springs and didn’t relish the idea of frequent trips to Denver but it’s closer than New Mexico.  I had not driven on the highway since I started Tegretol and wasn’t sure I should be driving at highway speeds.  After a few successful trips, I was more comfortable with driving the 55 miles each way.

April 15, 2007    After three months of adjustments with Dr. Nikitow, accompanied by some simple exercises at home, he suggested that I begin to cut down on the medication I was taking.  For the first few days I felt about half a dozen quick pains instead of the two or three I had been having.  He made another adjustment and I have not had a pain since that day.  I continued to decrease the Tegretol and have not taken the medication for more than six months now.  I have had my teeth cleaned and had some major dental work without a twinge of TN pain. The treatment is not finished.  I will continue to have adjustments until Dr. Nikitow knows that my cranial and cervical features are as they should be. I don’t care how long that takes.  I have attained my goal of being completely pain and medication free and I have returned to my normal level of forgetfulness and uncoordination.