What does Trigeminal Neuralgia feel like?
–There are a few different answers to this question, depending on who you speak to.
Some will say “zaps,” some will say “fire.” — Others will say “isolation.”
The first thing you have to keep in mind is that this is not just a physical pain. This is a life sentence, so it begins to take over our lives. It wrecks our homes, our finances, our lifestyles and our relationships.
There isn’t a ton of awareness about “TN (Trigeminal Neuralgia for short),” so even some doctors try to call our bluff. What is called “the worst pain anyone can ever have” by neurologists and “The Suicide Disease” by others, if often misunderstood, misdiagnosed and discounted as “a headache.”
But, it’s not. It’s more than that. It’s Hell. It’s a nightmare. It’s excruciating!
For a moment, imagine Freddy Kreuger and the Langoliers having babies with every single powertool known to man and unleashing the spawn into your brain. Now, imagine reading that run-on sentence with a “so-called headache.”
Then, imagine this:
For me, I have what is called TN2. This is a constant throbbing pain that doesn’t go away. If it does, it’s faint and in the background. But, it’s always there. I am just now able to function and forget it. At the onset of the more severe pain, I visualize a cracking piece of wood, rapidly splitting in half along the gumline. It’s at this moment, I go for my oils!
I have a rare form of TN2, where it flips from one side to another. Most people have TN on one side of their face for the rest of their life. I have it on both… just one side at a time. One day, it might be on the left. The other day, it might be on the right. And, then, it will stay the same for weeks to months before flipping again. Mine started on the left. Now, it is on the right.
When my pain is on the left, I can still function properly. I feel that I am in a lot of pain, however. But, I am able to go on.
Initially, I thought I had arthritis kicking in from a car wreck I was in at age 16. Boy, was I wrong! After seven months of taking Aleve every day — to the point I was literally chewing three pills at a time, each one of those days — I finally had no more pain. To be honest, I really don’t know why. But, I wasn’t complaining, either. I went into remission for over a year.
When it returned, it returned to my right side. It returned like the plague! I’m not really sure what brought it back into my life. There were definitely many factors. But, we will talk about this in another post, at a later date.
To describe my feeling about the pain I feel on my right side, I often equate it to a 24/7 brain freeze on one whole side of my face. The pain is actually much worse, but c’mon! We all know how unbearable that is, right?
Just imagine for a second, you have a 24/7 brain freeze on one whole side of your face. You feel it:
- Behind your eye
- On the top of your head
- Your forehead
- Your jawline (often misdiagnosed as TMJ)
- Under your tongue
- By your thyroid
- Inside your ear
- In the cup of your ear
- Behind your ear
- In your teeth (often told you have a tooth infection)
- In your gums (often told that it is just localized pain)
- Where your jaw connects
- Down your neck and to your shoulder blade (if you also have Occipital Neuralgia)
… and that’s only the beginning!
Sometimes, the pain feels like it’s crawling. Sometimes it feels like there are giant worms wedged between your brain and your skull… tunneling their way into your cheek!
You can have A+ dental hygiene and still end up with cavities. The pressure in your face will cause fillings to pop out, teeth to die and crumble and gums to swell. I remember using dental floss just to break my gums and release the pressure. This is very dangerous and not recommended to anyone.
You will end up with rashes from touching your face — and, it will hurt to touch or scratch. You can’t brush your hair without first preparing for the pain. You have to use straws to bypass sensitivities in temperature. The wind causes a reaction. You can’t lay down to take a nap, because you literally feel the gravity pushing down on your jawbone. The vain on your temple seems like it can’t swell any larger!
You’re never supposed to feel the pain on both sides at once. But, I actually do from time to time. This is supposed to be very rare. And, then, it could also be a sign you have occipital neuralgia. I’m one of those people. I was never diagnosed for “ON” by a medical professional. But, the overstimulation of my senses throws me into an attack. This is a clear case for “ON” with “TN.” And in fact, many people with TN will have more than one neurological disease… all of which seem to fly under the radar during medical testing and procedures.
The constant stinging, burning, zapping, pinching, pulling, swelling, compressing… there really is no other way to describe it but extreme torture at its finest. And just because we’re not screaming 24/7, it doesn’t mean that we are not masking the pain. Not only are we suffering physically, but we are also suffering mentally, emotionally and economically.
Fighting the pain from the time we awake to the time we finally pass out from exhaustion is depressing. It’s isolating. Our pride is lost in the sacrifices we unwillingly give up. Our humanity stolen. Our lives in limbo. This is the worst pain one can experience. And, we hide it so well.