My name is Brian. I am a Trigeminal Neuralgia Warrior, a reluctant one as all of us are. I have been fighting TN off and on since I was 18.
The first sign appeared when I was enroute to Fort Carson, Colorado after graduation from Fort Gordon, Georgia. I felt a mild tooth ache on the left side of my face. I thought it was a combination of the flying commercially for the first time and hearing Cinderella’s ‘Nobody’s Fool’ being repeatedly blared from the back seat of the bus the moment we left Augusta until we arrived in Atlanta. The pain subsided when I reached Denver and thought nothing more about it.
March 1, 1987 was the official date the first shot fired by my Trigeminal nerve. I don’t remember exactly what I was doing in the barracks of the 124th Signal Battalion, but I do remember standing up and then collapsing onto my bed. The excruciating toothache and debilitating migraine had me in bed the rest of the day. My temple painfully throbbed in perfect unison with the toothache. I didn’t eat or drink the whole day.
An Army dentist successfully extracted the tooth the next day. Pain was gone and the next day I was able to go skiing for the first time. However, it was only short lived. I kept getting annoying headaches, mostly in the forehead. Once in a while they would be behind my left eye.
May 4, 1988 I was honorably discharged. I happily returned to Miami and renewed my Miami Dolphin season tickets. The headaches were less frequent in civilian life, but I had a banger after the heart wrenching 1989 Miami season opener. The pain lingered in my temples for nearly a full day.
My work schedule changed in late 1990 and I was able to join the church choir. I started developing pressure in my temples when I sang above a certain note. The pressure would increase the longer I sang above the note. It would leave me a little woozy afterwards. I learned to sing an octave lower to keep avoiding from the pressure. Choir members kept saying it was all in my head, in retrospect they were right!
Headaches came and went, but most of them seem to revolve around eating. If I didn’t eat, I would get a nasty one. I don’t recall getting many during the mid to late 90s. I started lifting weights to relieve some upper back pain, it did the trick or was I too distracted by wining and dining my future bodacious wife to notice any headaches?
Pain returned in the early 2000s, it was almost like clockwork on some days. I would start feeling some discomfort on the left side of my neck around 9:30 every morning in 2002. The pain behind my left eye returned with a vengeance.
I noticed something intriguing from this painful point on, some of my best creative story ideas materialized during an attack. I didn’t understand it then, and I still don’t. The more the pain, the more the creative juices would flow.
Hurricane Frances was the tipping point, times I felt myself dazed, confused, not able to concentrate after a stabbing eye incident. Singing started to be a chore again, I would get dizzy while singing in the church choir. I couldn’t hit notes and at times, I wasn’t forceful. Eventually my voice would crack and I would have to hold onto the podium while singing special solos. I was forced to give up singing in early 2006.
I thought I knew what pain was until I had my first gall bladder attack. The ticking time bomb was removed and I thought I knew what pain was until 2007. Radiating stabbing pain was ubiquitous.
I stopped eating Macadamia nuts, I kept getting headaches every time I ate them. The earaches I had as a child returned, but only to my left ear. I asked my mom what the doctors back then said what it was, she replied that they never determined it. The earaches eventually left a few weeks later, only to be replaced by something worse.
I awoke one innocent April morning and went about my business, but ten to fifteen minutes later pain behind the left eye materialized. It hurt. It was a constant stabbing pain that never went away until I took an over the counter product. The pain came back every morning, appearing ten to fifteen minutes after I awoke.
I saw Dr. Loar, my eye doctor. She said my eyes were fine, but I may be experiencing an inflamed fifth nerve. She explained how it spread out amongst the face, but she told me that other specialized doctors would have to make the call.
The ear, nose, and throat specialist wasn’t a good experience. I can say I was relieved at the negative MRI and CT scans, but I was still in pain. The meds I was on made me a zombie and had other adverse side effects. Thankfully the insurance changed and I couldn’t go back to him.
I learned to manage the pain by taking turmeric, it helped some. I changed to a higher dose of turmeric, curcumin and the pain management was even better. Yet, I still had bouts of pain, excruciating at times.
October 2007 a church member suggested I take MSM for my chronic pain, it was natural and wouldn’t have any adverse side effects. I weighed 166 on November 1; I was pushing 190 around Thanksgiving. I stopped taking it, but the weight stayed. I have yet to lose it.
One day I drank a cold cup of water, the pain in my left cheek was intense. I thought I had finally found the problem, a US Army dental problem. The dentist I saw took one look at me and stated I had TMD and that was the reason for my pain. I was relieved; I was told I would be fitted for a night guard once they finished with a few root canals. I can see many of you squirming in your seat right now, I know we’ve all been there. Sigh.
One night I had such a bad headache I was dizzy and couldn’t walk straight. My lovely wife took me to the emergency room. The doctors told me it was the sterile inflammation in my left jaw that caused me to be dehydrated. I was shocked, I live in Florida. I know how hot it gets, I drink plenty of water. I didn’t appreciate the hospital staff chiding me like a little four year old boy for not drinking enough fluids throughout the day.
My dentist quickly made the night guard mold after I told them about the incident. My jaw slowly started to realign like it should, easing the pain. I felt so good I eagerly helped out with the 2009 Christmas cantata. I was the narrator for the program, I joined the men during their solo parts. My voice was richer, more powerful than it had ever been.
I quickly learned I had made a big mistake of near Biblical proportions. A few days later I felt my jaw sliding back to where it shouldn’t be and there was the pain. I had to wear my night guard all the time unless I was eating. It was very difficult to sleep at night, the constant pressure of my locked lower jaw vainly trying to slide back to the left. It took a painful month but everything returned to ‘normal’.
Sleeping with a rolled towel under your head can be a wonderful thing; it was something the chiropractor showed me. I saw two of them within a three year period. They both stated my neck didn’t bow, the last one showed me that my jaw was the fulcrum of all my pain. I was relieved and yet I wonder at times why I went. There were multiple occasions I left the office in more pain than when I went in.
I won’t mention the late 2010 early 2011 visits to the neurologist. One should have immediately recognized all my symptoms and quickly deduced I suffered from Trigeminal Neuralgia, but that’s par for the course as most of us know all too well.
Mercifully I was diagnosed in September 2012, “Gesundheit,” I retorted at hearing the name “Trigeminal Neuralgia,” vindicating Dr. Loar’s 2007 assumption. I held back on taking the drugs as long as I could and wished I hadn’t given in on taking them. A rash broke out around my neck taking carbamazepine, a name I still can’t pronounce. Of course my doctor wasn’t in town when this happened, naturally, so another put me on gabapentin.
My magical ballooning act returned. The fattening combination of these two drugs pushed me over the Mendoza line. Disturbing dreams started, unpleasant dark dreams. I’ve had dark dreary dreams before, but they would be sandwiched between happy nice dreams. Two nights I dreamed of nothing but investigating murders, stabbings, violent conflicts, and being followed. I had enough called my local pharmacist about getting off gabapentin.
I did exactly what they told me, but I was ill prepared for the wicked withdrawals. Saturday I awoke to upper back pain I hadn’t felt in nearly 20 years. I spent some time lifting dumbbells to alleviate some of the pain. I was dizzy, spent nearly all of Sunday in bed.
Come Monday, it wasn’t alright you Jimmy Buffett fans out there. I called in sick due to still being dizzy. I stayed in bed and around 2PM that afternoon had the most excruciating attack I’ve had in memory. Suicidal thoughts invaded my pain frazzled mind. Well, it was more like, “Why won’t God just go ahead and take me?” Sometime later the four Aleves I took kicked in.
I have been off the drugs now for nearly two months. I am using herbs, minerals, vitamins, and diet to manage my TN pain. I am still finding new triggers, but that’s to be expected. All in all I can still say, “God is good.”
I have a beautiful loving wife; a canine guard, Tuxedo; and a feline one, Shakespeare; they ball up near me when I’m lying down in bed during a nasty attack. I can still take over the counter migraine pills to find relief. I have found new friends as well as finding a new direction/purpose for my life.
I am the Reluctant Warrior.
