I was barely 25 years old when my life came to a standstill.
After surgery to remove a tumor, my trigeminal nerve was damaged. From that moment on, pain became my shadow — it woke up with me and fell asleep with me. I didn't know why. There was no diagnosis. There were no answers. I was alone with something no one could name.
For nearly three years, I went from doctor's office to doctor's office, from hospital to hospital, waiting for someone to finally understand what was happening to me. I watched as my peers finished college, started careers, built families... The world raced forward while mine stopped completely. I felt my former life drifting away, while I remained trapped in an invisible glass bubble — with a pain that wouldn't let me be myself.
Neuropathic pain is something you cannot see. The trigeminal nerve is one of the most sensitive nerves in the human body, and its damage can produce pain that defies description. Trigeminal neuralgia is often called "the worst pain a human being can experience" — sudden, intermittent, devastating. But my pain was different. My pain was constant. It never let up, not even for a second. At times, it only allowed me to surface briefly from the depths, to catch a small breath of air so I would have the strength to keep fighting the waves that kept trying to pull me under.
And when the diagnosis finally came... it didn't bring relief. I still didn't know what to do next. The medications meant to help caused side effects so severe they could have cost me my life... I was left without pharmacology, without tools, without support. Just me and it — the pain.
The hardest part, though, was that no one truly understood. My loved ones tried — and I am deeply grateful for that — but they couldn't enter my world of pain. Doctors didn't always have answers either. And for years, I felt so painfully alone, as if no one else in the world was going through the same thing.
Until finally... they appeared.
My wonderful Trigeminal Sisters — people who, just like me, live with trigeminal nerve pain. People who don't need to ask what it's like, because they already know.
They know what it means to wake up with pain and fall asleep with pain.
They know what it means to lose the person you used to be.
They know what enormous courage it takes to survive each new day.
That meeting changed everything.
I could finally say, "It hurts again..." and someone would respond without hesitation: "I know. I'm going through it too. I'm right here."
And it was like hearing, "Hey, how are you?" — but spoken in the language of pain that only we understand.
Because of them, I stopped feeling alone on this road. Because loneliness in pain can sometimes be harder than the pain itself.
Today I know one thing:
The presence of another person who truly understands doesn't heal the nerve, but it heals the heart.
Support from those who walk the same path gives you the courage to keep taking steps — even when every one of them hurts.
Their words can be better medicine than any pill.
Community makes the weight that once crushed you to the ground feel at least a little lighter.
Because living with pain is not just about surviving another day.
It's about having someone beside you who says:
"I'm fighting too. We're in this together."
Natalia — since 2014 I've been living with trigeminal nerve pain. I write in plain language, based on reliable sources and personal experience. Read my story →
Frequently Asked Questions
What is trigeminal neuralgia?
Trigeminal neuralgia is a chronic facial pain condition. It manifests as sudden, severe, usually one-sided pain attacks — often described as an electric shock. A single attack typically lasts from a few seconds to about two minutes.
What is the difference between neuralgia and neuropathy?
In simple terms: neuralgia primarily involves paroxysmal pain along a nerve, usually without loss of sensation. Neuropathy involves nerve damage that more often causes constant pain along with numbness and sensory loss.
Do regular painkillers help with neuropathic pain?
Usually not. Neuropathic pain responds poorly to paracetamol or anti-inflammatory drugs. Instead, medications that act on nerves are used, such as anticonvulsants like carbamazepine.
Which doctor should I see for facial pain?
First, see a neurologist. If surgery is being considered, a neurosurgeon. If a dental cause is suspected, it is also worth ruling it out with a dentist.
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