Imagine for a moment that we are in the mid-twentieth century. The scientific world is celebrating because Egas Moniz has just received the Nobel Prize for... lobotomy. Yes, for severing connections in the brain. Today it sounds like a grim joke from a medical history textbook, but at the time it was proof of how little was known about the human mind — and how desperately people tried to "do something."
It's worth pausing to consider what lobotomy actually meant for the person who underwent it. It was not a subtle intervention or a "quieting of symptoms." It was the physical severing of brain connections responsible for emotions, planning, relationships, and the sense of self. After the procedure, many patients became quiet and "calm" — but this calm was only an illusion. What disappeared was not only aggression or fear, but also joy, curiosity, and initiative. The person stopped reacting as before — not because they felt relief, but because they had lost the capacity to fully experience life.
Profound personality changes often occurred. Patients lost the ability to plan, make decisions, and anticipate the consequences of their actions. They became apathetic, passive, devoid of motivation — or the opposite: impulsive, inappropriate, as if emotionally regressed. Social relationships fell apart because the person after lobotomy was no longer the same individual. Serious cognitive difficulties also emerged: problems with memory, concentration, logical thinking, and sometimes speech. Many patients could not return to work or independent living. Their "improvement" consisted mainly of the fact that they stopped being a burden to those around them.
Today we know that what was considered therapeutic success was in reality purchased at an enormous cost — the loss of part of one's humanity.
Lobotomy did not solve the problem. It simply silenced it, along with the person experiencing it.
And now the point — bitter, but true: our current knowledge about trigeminal nerve disorders is sometimes at a stage similar to what we knew about the human mind over 70 years ago. Especially when it comes to living with chronic pain. A patient hears the name of their condition, receives a prescription, and is then often left alone. Alone with pain that doesn't ask about your plans, doesn't respect weekends, and can turn the simple act of brushing your teeth into the challenge of the day.
I am not drawing an equal sign between lobotomy — a brutal and irreversible intervention in the brain — and trigeminal nerve pain. I am fully aware that these are different phenomena involving different areas of medicine with distinct, though painful, consequences. What connects them, however, is something deeply significant: the experience of a patient who is reduced to "a problem to manage" rather than a person to be heard. I want to show that living with trigeminal nerve pain can be equally devastating to daily functioning, identity, and relationships — and that the current level of medical and social knowledge is sometimes alarmingly inadequate in the face of this experience.
Living with neuropathic pain is not just a physical sensation. It is also exhaustion, irritability, a sense of lost control, and isolation. Pain can commandeer your attention like a relentless narrator commenting on every moment: now, again, watch out. And although from the outside "nothing is visible," inside there is an unceasing dialogue with your own nervous system.
Here another problem appears — the way people around us talk about pain. Out of good intentions, helplessness, or lack of understanding, they say things like: "Distract yourself with something else, it'll hurt less" or "Don't think about the pain." These words sound rational only to those who have never had to live with neuropathic pain.
In reality, they not only fail to help — they wound. They reduce a complex neurological experience to a matter of mindset or willpower. And trigeminal nerve pain is neither dramatizing nor a lack of character. It is a real phenomenon in the nervous system that can rob you of feeling safe in your own body.
This also needs to be said directly: talking about this condition is sometimes unbearably exhausting. Constantly explaining what trigeminal nerve pain is, why it hurts "for no reason," why you can't simply ignore it. Justifying that day after day you look "normal" and yet function at the edge of endurance. It is unfair that people living with this pain often cannot count on adequate support — neither from the healthcare system nor from society.
There are stories of patients who, instead of receiving real help, are referred to a psychiatrist because their pain is deemed fabricated, exaggerated, or "emotional." As if the absence of a visible wound meant the absence of suffering. It shouldn't be this way. And yet it still happens.
And although we would very much like to believe that someone will come along to fix everything, the truth is often different. There is no superhero who will arrive and rescue us. In many cases, the people living with pain must become that hero themselves: speaking up, fighting for themselves, educating others, setting boundaries — even when strength is running low. That is an enormous burden. But without it, nothing will change.
People living with this pain do not need platitudes or comparisons to others' suffering. They need understanding, support, and acknowledgment that their experience is real — even if it isn't visible on the outside.
And yet — and this is an important "and yet" — we are not entirely helpless. It is not always possible to switch pain off, but you can learn how to navigate life alongside it. Somewhat like learning to read: at first, every letter requires tremendous effort, then you combine them into syllables, until eventually you read entire sentences almost automatically. It can be the same with coping techniques: breath regulation, mindfulness, bodywork, thoughtful planning of your day, psychological support, and sometimes simply being kind to yourself when the day is hard.
What matters most is that the brain is plastic. It learns, adapts, and changes its pathways. With the right tools, you can reprogram your relationship with pain — not in the sense of a miraculous cure, but in reclaiming space for life alongside it. For laughter, for relationships, for meaning.
Perhaps in a few decades, someone will look at our current treatment methods and say: "How could they have known so little?" Until then, it is worth speaking up — that patients should not be left on their own, and that even if pain cannot be completely eliminated, it is possible to reclaim space for a life that is not entirely defined by it.
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.
Does alpha-lipoic acid (ALA) help with neuropathy?
Some people use ALA as a supportive supplement, but evidence is limited and comes mainly from studies on diabetic neuropathy. It is considered a supplement, not a proven therapy. Always consult your doctor.
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.
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