# How I Discovered I Have Trigeminal Neuralgia, And What It Is
I felt three knives stabbing me in the face at once. And for the next 12 hours I wondered if this was it -- if this was the end.
This is the story of how I discovered what Trigeminal Neuralgia is, how and why it affects me, how I overcame it, and what's next.
# Before I Knew What Hit Me
Thursday, July 19, 2012 - Somewhere between San Diego and San Francisco, CA
I took a deep breath and felt a sharp pain in my head. The flight from San Diego to San Francisco only takes 1.5 hours. 30 minutes into it I didn't know what hit me or why, but I knew I had to keep it together. Acting strange on a flight these days can have some dire consequences.
I put my head between my hands and acted as if I was just really tired.
I hoped the flight attendant wouldn't ask me if I wanted anything and just thought I was asleep. If I looked up, she'd notice I was crying and it would become a whole new issue to deal with. An issue I didn't understand myself, so how could I explain it?
It started as a dull, uncomfortable feeling in my neck, as if I needed a chiropractic adjustment, or the airplane seats weren't made for 6 foot 2 inch tall people.
Soon, though, it turned into a piercing pain on the left side of my head and face.
I couldn't ignore it any more. It certainly wasn't a chiropractic issue, nor was it the seats.
Whatever it was, I needed it to go away before my business meeting started. So, I popped a bunch of ibuprofen and prayed I could grit and bear it through the rest of the day.
# The Knives
Friday, August 14, 2015 - Driving to Bend, OR
We've been driving for a few hours already and now it's getting dark. The two kids in the back seat are almost asleep. It's time to stop before they fully fall asleep to get gas and caffeine.
I pull into the gas station, fill up, and grab a Red Bull with zero sugar. It made sense, at the time, to try balancing all the eating and drinking we were about to do with 6 families coming together for an epic summer weekend.
Popping the top, I guzzle about half the drink down and pull back out onto the road.
As we pull into the driveway of the gigantic summer home that is already half full of families, I start getting a dull pain creeping up my neck into my head.
It's a feeling I've felt before, but it's been years and I can't put my finger on what happened last time.
After a few sips of whiskey and hugs, I feel it creep into the side of my head and face. I take some ibuprofen and chalk it up to the long drive. But thirty minutes later I know that's not what it is, and excuse myself.
The rest of the night and most of the next day I spend in bed, face down, crying, hoping the stabbing pain in my head will go away so I can enjoy time with friends and family.
# The "Suicide Disease"
The next day, after the pain subsided, I get curious. Thankfully, one of my friends' wives is a doctor.
"Julie, I'm not sure what your specialty is, but what do you think about this..." I ask.
The next few minutes we go back and forth, interrogation style, as I explain what the sensation I felt was the prior evening, and anything that could mildly be related.
Nothing. She was intrigued, but had no idea what it was yet.
Thankfully, she got curious too, and looked up in her own internal database the symptoms I described. She brought the computer to me the next day, cautiously.
"Read this list. Do these symptoms seem to fit what you're experiencing?"
"All but one" I answered. "This is definitely it, whatever this is."
"Feel free to keep reading, if you want, just to make sure."
As I do, I come across the words on the screen. "Suicide disease".
"Why do they call this the 'Suicide disease'?"
She looks away for a split second, not wanting to tell me the truth.
"Well, honestly, people who get this thing sometimes can't bear it for too long and many eventually kill themselves because they can't find a solution to it. As a doctor, I shouldn't say this stuff to you. As a friend, I thought you'd want to know the truth. I'm not saying this is what you have, but if it is, I'd rather you know that there aren't many things that can help for the long term."
I pepper her with questions. "What causes it? What options do I have? How do I figure out if this is truly it or something else?"
I'm not panicking. It's just an initial option as a diagnosis and I'm most certainly going to get another opinion, I think to myself as I sip another whiskey.
# I'll Figure It Out Myself
A few months later...
"Shit, shit, shit. Fuck this hurts! Why is this happening?"
My wife wakes up next to me, wondering what's going on. It's midnight. I can't feel anything other than stabbing in my face in the places.
I didn't swear much in these days, but these were definitely right words for what I was feeling.
The next few "episodes", as I start to call them, were excrutiating, regular, and were driving me insane.
I felt three knives stabbing me in the face at once. And each time it happened, for the next 12 hours I wondered if this was it -- if this was the end.
I became obsessed with figuring out what was triggering it.
I went to chiropracters in the middle of the night, visited with nurses and doctors who told me about cranium/nerve surgery options, and tore through the internet looking for answers for questions I didn't have the vocabulary to ask.
I read up on neurons, receptors, enzymes, and neurotransmitters.
I made myself a human guinea pig. And every other day I was crushed into oblivion for another 12 hour stint.
It took 24 hours to recover every time, so I eventually had to tell my boss that if I missed a meeting or two that I'd check back in later and this was the reason why. The explanation sounded fake. I was sure I was going to lose my job in the next few months if I didn't figure it out.
Along the way I cut out all kinds of food and drink. I became a food-monk.
And then it happened. Finally, something I could point to.
From the time I cut out everything other than raw foods and water I went 2 full weeks without a "stabby episode" (I changed the name to be funnier, even if only I was laughing. I had to do something to lighten it up).
I celebrated with a whiskey.
15 minutes later I knew the culprit.
I was face down in the bed with a "stabby episode" that lasted 12 exhausting hours. The next day I was sweaty and spent, but I celebrated gently, and without whiskey, in my mind.
I found at least one thing that triggered it. And with that, I deduced aspartame was another, based on the late night Red Bull chugging a few months prior.
"That's it, sucker. I've got a bead on you now! You're mine! I'm going to figure this out."
# What Does a Pig Have To Do With It?
I doubled down on the research. But book knowledge only goes so far. I experimented with other kinds of drinks. Soda, milk, wine, different juices, beer. Anything I could think of.
See, the thing is alcohol packs a one-two punch.
The primary culprit is histamine, but colored alcohol in particular packs double the trouble. Those with Trigeminal Neuralgia #1 might be sensitive to histamine in general, but colored alcohol is a bastard.
I found I could get away with drinking gin, white rum, and vodka without trouble. But beer, wine, whiskey and the like will all punch you in the face (in my case, literally).
The real issue seems to be the histamines, though.
We all have histamine in our body, and we ingest histamine all the time. In the right amounts, it's good for us. Histamines inflame us at the right time. It's what causes the framework inside your blood vessels to open up and allow white blood cells through to fix the damage to your body.
But as we all have heard, too much inflamation is horrible for us. It facilitates cancer, bowel diseases, weight gain, and a whole host of other major problems in the body.
For some, inflammation acts on the body in such a massively reacitve way that these unfortuante people have to abide by a strict, low-histamine diet. This has it's own issues, though, like lack of motivation (to a very serious degree).
Being a self-driven entreprenuer, this sounds like my own personal hell. B
ut, if that's what it takes, I was willing to do it.
Thankfully, I haven't had to do that yet.
# The 1930 Experiment - That Poor Poor Lady
While researching this histamine over-reaction in my body, I came across a study - well, more like a human experiment - in the 1930s which I wish I could find again.
It told a story about a lady who walked into a clinic with nerve pain in her head. Easy to deduce what was going on, but much harder to figure out why.
The poor lady came back every day for weeks. Eventually they figured out that histamine was the trigger. And each day the doctors injected a small amount of histamine into her body. Within a few minutes she experienced immense nerve pain. And each day they did this to her, they experimented on her by injecting her with other substances until they found something that blocked the histamine from attaching to the receptors.
Turns out, it was an early form of Benadryl.
Benadryl is a histamine blocker, though. So, although it solved the problem in the moment, and would do so for me too, it's not a long term solution. The histamine would just hang out in the blood stream until the blocker wears off and whatever was left would still affect the person, albeit maybe not with the "stabbies" I was experiencing. It might end up just being a bit of fogginess.
But I wanted something better than being hopped up on drugs.
Eventually I found the problem was resolved with an enzyme produced via pig intestines (so definitely not kosher).
It turns out I have DAO deficiency - an alteration in the metabolism of food histamine that appears when Diamine Oxidase (DAO) enzyme activity is low.
So, the DAO enzyme I eventually found kind of digested, or helped me digest, the histamine.
And just like that surgery, low-histamine diets, and histamine-blocking drugs were off the table. I found the holy grail. A tasteless, odorless, inexpensive, enzyme pill I could swallow with a bit of water.
# What Comes Next?
The doctors I've talked with about Trigeminal Neuralgia tell me their research indicates this condition will worsen over time. Or at least it does for those who succumb to the "Suicide disease".
In my case, I have a few options before it comes to that, though.
First, I have the option of simply ingesting this DAO (Diamine Oxidase) supplement before I drink any colored alcohol (I avoid aspartame regardless, since that stuff tastes like liquid death anyway).
But second, if that stops working, I'll simply stop drinking colored alcohol at all. And if that doesn't work, I'll stop drinking alcohol entirely.
All in all, it seems like it's just leading me down the path for better health anyway.
But for now, I'll take my pig enzyme and celebrate my entrepreneurial wins with a few fingers of a nice bourbon.
If you're reading this and have "TN1", I feel for you. I really do. I wouldn't wish this type of pain on my worst enemy. I hope this story helps in some way, and that you find relief soon.
Cheers 🥃 to you, Julie, Tilly, Mike, and all the others who were a part of this journey of self-diagnosis! Thank you for putting up with me waking you up in the middle of the night screaming.