I know, it’s been a while since we’ve chatted, but I’m not gonna lie. Things are kinda shitty right now.
It all started about six weeks ago, right around the last time you heard from me, as a matter of fact. It was Saturday night, my sister and her family were over for dinner, and we were playing my new favorite game, “Cards Against Maturity.” Check it out; you won’t be sorry. It’s like that other game with the similar name, but instead of cards that would make even the saltiest sailor blush, they’re packed with snort-inducing phrases like “Booger Holes” and “Skid Marks On Your Tighty Whities.”
My 12-year-old niece asked innocently, “What’s a merken?” and I burst into raucous laughter. It was that moment I first felt it. Like an electric shock on the side of my head, right in front of my left ear. I winced and slapped my hand up to my ear, and then the pain subsided. But it got my attention. Then I explained what a merken was to Lena. A few minutes later, I felt that pain again.
As the night progressed, I became convinced that I had an ear infection. I’d never had an ear infection before, but figured that the pain associated with one might feel like a hot poker stabbing you in the ear every 15 minutes or so. And that’s what this felt like.
By the next morning, the pain spikes in my ear were coming more often. And I thought maybe it might actually be coming from a tooth that I had long suspected might be in need of a root canal. I found a dentist who could get me in first thing Monday morning, and he referred me to a root canal specialist who was able to squeeze me in Tuesday if I could arrive before dawn broke.
I’ll cut to the chase. It wasn’t my tooth. But he’d seen a few people like me before that had similar symptoms, and he thought I might have a rare condition that I should probably see a neurologist about: Trigeminal Neuralgia. I went to the hospital’s urgent care clinic. The doctor there spent considerable time discussing my symptoms, even taking an X-Ray of my spine and head, and concurred with the dentist. And he had this sad, apologetic look on his face.
“This isn’t a terminal disease,” I said. “But you’re looking at me like you just told me I have Stage 4 cancer.”
“Yeah, I’m sorry. Trigeminal Neuralgia won’t kill you. But it’s not curable. You’ll have this for the rest of your life.”
He told me that in only 15% of cases can an anatomical cause be found, and in most of those cases the cause is something in the head that is pressing on the nerve. Something like a brain tumor. It’s also a symptom of MS.
The skinny on Trigeminal Neuralgia is this: it is most commonly found in women over 50. It’s described by its victims as feeling like repeating excruciating electric shocks in the head. And not just in the ear. The Trigeminal nerve has three branches on each side of the head that control facial and scalp sensations. Rather than get all technical and doctor-y sounding with you, I’ll just leave this sweet little graphic right here. It shows you all the places one with this condition might expect a jolt of pain.
Before sending me off with a prescription for Gabapentin, the doctor also went over the things that I might want to consider not doing any longer, since they are known to set off an episode of Trigeminal Neuralgia:
- Talking
- Applying makeup
- Brushing my hair
- Shaving
- Going outside (because even a slight breeze can set it off)
- Brushing my teeth
- Eating
- Drinking
What, breathing wasn’t on the list? So it was either die of starvation and loneliness because I would no longer be able to practice basic hygiene or communicate with anyone, or just power through it and suffer. No wonder some websites refer to Trigeminal Neuralgia as “The Suicide Disease.”
By Wednesday I started figuring out why the doctor had that sorry look on his face. He knew what was coming. Even with the medicine to help control these little facial seizures, I was still having them. A lot. And now they were moving around to different parts of the left side of my head. I started marking them down on a sticky note one day while I was doing my radio show, and was horrified when I realized how often they were coming. An average of 73 per hour.
I kept track of how often my nerve hit me with a zinger. Sometimes 2 or 3 per minute.
Some felt like I was being jabbed with a hot poker. Others were minor enough that you would never know I experienced three of them while reading the weather forecast over the airwaves. But if you were looking at my face, you’d see me grimace or maybe put my hand to my head. The one thing that seemed to help was warming up a compress in the microwave and holding it against the side of my face. I slept like that, even did my radio show like that. Sometimes I’d go for a few hours and not experience any jolts, and then WHAM! It was back on like Donkey Kong.
This is the way things were for 10 days. And then it just stopped. Game over. No more hot pokers in the ear, no more electrical shocks to the head, no more eye twitching (well, not much eye twitching). It’s almost as if it had never happened.
I did tell you that this isn’t curable, right? That Trigeminal Neuralgia is a lot like herpes. It might go into remission for a good, long time, but I have to be prepared that at any moment, I’ll be hit by a little bolt of lightning, and go through another 10 days (or two years) of nerve pain attacks.
During those 10 aggravating days I was able to land an appointment with a neurologist (although that appointment hasn’t happened yet. The earliest appointment I was able to make with a neurologist who accepts my insurance is April 23rd). Because I wasn’t willing to wait that long to find out if I have a brain tumor, I made an appointment with a new primary physician. The first time I’ve seen a doctor in years.
We had a lot to discuss.By the end of the appointment I had a handful of orders for:
- An EKG to see if those heart palpitations are cause for alarm
- Lab tests to check on a multitude of things
- A list of supplements that I might want to add to my daily routine
- A Gabapentin refill for the next time I experience a cattle prod to the ear
- An MRI so I don’t have to wait until the end of April to find out if I have a brain tumor
- One other kind of crappy procedure that I’ve been putting off for a few years
The good news is that I don’t have a brain tumor (so I’m in good company with the 85% of people who have no known cause for developing Trigeminal Neuralgia). The bad news is that I’m definitely in menopause, my cholesterol is a little high, and my colonoscopy is just around the corner. Crap.
You know, Getting Older Ain’t Much Fun. But it beats not getting older. And with that, I leave you with a fitting playlist by that name, along with an invitation to share your favorite songs about growing old. At least I’ve got that going for me.
