In the bio of this page, I managed to fit a few lines about myself so you'd know who's writing to you. But that's only a fragment of a much bigger whole — a story full of twists, battles, and questions without simple answers. Just as it can't be summarized in a few sentences, it will be told here in stages — because a lot of time has passed, and some things return today more as memories than as fresh events.
Today I want to tell you a little more about myself. The way you tell something important — to people who truly understand.
First — welcome to the New Year
I wrote in the previous post that January would be my time to rest. A time of stepping back a little — from Facebook, from the screen, from the daily rush. And that's exactly what it was.
I'm not coming back with renewed energy, because pain is still with me almost every day and takes an enormous amount of energy.
But I'm coming back with a somewhat calmer mind. With more organized thoughts — though certainly not all of them.
A change of place, silence, being "outside" — all of that allowed me to clear my head. But one thing didn't change: I was thinking about you the entire time.
About our stories. About how non-obvious, difficult, and lonely life with trigeminal nerve pain can be.
During those weeks, I thought a lot. I read. I returned in my mind to my own path — to the moments when no one yet had a name for this pain. To the years of searching for answers. To the lack of understanding. To hope and to losing it.
That's why today I want to tell you more about myself.
12 years with trigeminal neuralgia
I've been dealing with trigeminal neuralgia (neuropathy) for 12 years now.
Soon the thirteenth year will begin. Unlucky thirteen? Or perhaps just the next chapter.
My story began with a tumor in the angle of the mandible. The pain I felt at that time was one of the most intense experiences of my life.
When I was admitted to the oral and maxillofacial surgery department at the Children's Jesus Clinical Hospital on Lindley Street in Warsaw, the initial concern was ameloblastoma.
As I was being put under for surgery, one thought kept circling in my head: "Please, let it not be ameloblastoma."
After the operation, it turned out to be "only" a cyst. Enormous relief.
But no one prepared me for what would come next.
Instead of relief, as the wounds healed, increasingly intense pain appeared.
I heard from doctors that it would pass. That the nerve needs time.
First they said one year. Then two. Then five. And even ten years (on the tenth anniversary, I truly believed the pain would finally disappear).
When the pain didn't go away, six months after the first surgery I was operated on again. Then a third surgery.
Antibiotics. Hospitalizations. New hopes and new disappointments.
Until finally — after more than two years — the diagnosis came: trigeminal neuralgia.
I was given medications. I was told: now we know what it is — things will be fine.
And then... two weeks after starting Tegretol and Baclofen, something happened that I completely did not expect.
A severe adverse reaction
My condition started deteriorating rapidly.
High fever appeared, extreme weakness, a rash, pain throughout my entire body. I felt as if my body had suddenly said: stop.
I was admitted to an infectious disease ward. No one connected it to the medications at that point. They searched for an infection — a virus, a bacterium, an external factor.
Meanwhile, my body was reacting to something that was supposed to help me.
Tests showed very low white blood cell levels and liver overload. It looked like an infectious disease, even though it wasn't one.
Only later did it become clear that this was a severe adverse drug reaction.
When the medications were discontinued, my body slowly began to recover.
Parameters gradually improved, the fever subsided, and my body — though exhausted — started to regenerate.
But I was once again left alone with trigeminal nerve pain — without treatment, without a solution, without an answer to the question: what now?
My body recovered, but the pain remained.
That was the moment when, once again, I had to learn to function in a reality where healing doesn't always mean relief.
Searching for answers
I knew only one thing: I couldn't go on living like this, and at the same time I had no idea which direction to go.
So I started searching. More doctors. More specialists. More opinions.
I traveled to different clinics and offices, showing documentation, test results, explaining how my body responds to treatment. These were not isolated incidents — other antiepileptic drugs also caused severe leukopenia in me.
Unfortunately, very often this was not met with genuine attentiveness.
During 10–15-minute appointments, I was told that "this time" the medication was a newer generation and that I shouldn't have side effects.
And yet, after just one week, I felt like a zombie — with pain throughout my body, extreme exhaustion, and the feeling that once again I was paying too high a price.
Eventually, I had to make the decision myself to stop taking antiepileptic medications.
Years later
Years have passed since then.
The pain didn't disappear. It changed. It evolved, and I evolved with it.
Sometimes it gave me a moment to breathe, and sometimes it took everything: energy, concentration, the joy of simple things.
And that is precisely why this page was created.
Not as a guidebook.
Not as a collection of "golden advice."
But as a place for people living with trigeminal nerve pain — regardless of whether it is classical trigeminal neuralgia or pain following mechanical or chemical nerve damage.
A place where you don't have to explain why it hurts.
A place where nobody says: but you look fine.
A place where you can say: "I don't have the strength today" — and that's enough.
If you're here, you're probably carrying your own weight.
And I want you to know one thing: you are not alone in this.
I'm here too.
With pain. With a story. With experience.
And with the need for us not to have to go through this in silence.
This page wasn't born from theory.
It was born from pain, from being misunderstood, and from a long road of searching for answers.
If you're here — it means your story matters too.
And although each one is different, we share one thing:
We don't have to go through this alone.
February has begun — so we keep going. More posts are coming soon.
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.
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.
Can trigeminal neuralgia be cured?
In many people, pain can be effectively controlled with medications or procedures, and MVD provides the most durable results in eligible patients. The course varies — with periods of remission and relapse. Decisions are made together with your doctor.
Can chronic pain affect memory and concentration?
Yes. Research shows that chronic pain, including trigeminal neuralgia, can lead to measurable changes in brain function — affecting memory, attention, processing speed, and executive function. This is sometimes called 'brain fog' and has a real neurobiological basis.
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