Diagnosing Trigeminal Neuralgia: A Patient Who Noticed What Doctors Missed

DKM's careful observations helped him recognise a pattern in his symptoms.

DKM is a professor of mathematics at a university in North India. I think that detail matters because of how precisely he arrived at his own diagnosis — well before any doctor was willing to commit to it.

It began with a strange, brief electric flash across his forehead while drying himself with a towel after a bath. Most people might let a sensation like that pass. He noticed it, dismissed it once, and then paid close attention when it happened again in exactly the same way, while doing exactly the same thing.

An occasional, brief, electric-shock-like pain can be easy to overlook because it passes quickly and may not seem alarming on its own. What matters is its character and its repeatable triggers. A towel on the forehead. Cold water. A breeze. That pattern can be an important clue, even before the symptoms become difficult to ignore.

DKM saw three doctors before anyone used the words Trigeminal Neuralgia. By then, he had already found the term himself, compared his symptoms with the clinical description and was waiting for a doctor to confirm a conclusion he had reasoned his way toward. Most patients arrive overwhelmed by conflicting information. He arrived having filtered it carefully.

Living With Trigeminal Neuralgia: Four Years Before Surgery

The four years between his first symptom and surgery reveal how deeply this condition can affect daily life.

Like standing beside someone welding — except the electrode was inside his own head.

He kept teaching through all of it. Winters in his city are harsh, with temperatures sometimes falling to two or three degrees Celsius. Cold can be a reliable trigger for some people with Trigeminal Neuralgia, which may make winter especially difficult.

He wore two caps and wrapped a wool band across his forehead to get through those months. He bathed every day knowing that when water touched his forehead, the pain might follow. He did it anyway, because there was no other option.

His daily oxcarbazepine dose increased from 200 mg to 1,200 mg over the course of a year as the disease progressed. The medication helped control the pain to some extent, but he described a constant dull heaviness that never fully lifted.

He described the pain in a way that has stayed with me: like standing beside someone welding, hearing and imagining the electrode sparking against metal — except the electrode was inside his own head. Three to five seconds of it, he told me, but so intense that anything longer would be unsurvivable.

What Trigeminal Neuralgia Patients Teach Me That No Textbook Can

My training in neurosurgery and Microvascular Decompression taught me the pathophysiology of Trigeminal Neuralgia: the symptoms, vascular compression, pain pathways and the mechanism behind decompression. It did not give me the felt experience of the condition. That comes from patients, and especially from those who can put the experience into words.

DKM's welding analogy is one I still use when explaining this disease to a newly diagnosed patient or to a relative who struggles to understand how the pain can be so severe. No textbook gave me that image. He did.

Over the years, other patients have also described their pain in ways that have taught me something. Not the diagnosis or treatment, but the texture of the experience — how a brief event can come to dominate a person's relationship with their own face, morning routine and sense of safety in ordinary moments.

A mathematician's mind, trained to observe precisely and report exactly what it observes, can be unusually well suited to this. DKM told me what kind of pain he felt, how it began, how it travelled, how long it lasted, and how the absence of pain for twenty-two months in 2018 and 2019 felt different from its presence before and after.

Dedicating my career to the surgical treatment of Trigeminal Neuralgia and Hemifacial Spasm has made me a better listener with every patient, including those who struggle to find words for what they are feeling. I ask better questions now because I know what a complete answer can sound like.

Trigeminal Neuralgia Surgery: A Mathematician's Approach to Risk

DKM approached the decision by weighing the risks of surgery against the impact of continuing to live with severe pain.

By the time DKM came to me, he had already done extensive independent research into Microvascular Decompression. He had read surgical literature, watched procedure footage from our MVD centre in Pune and centres abroad, and understood alternative treatments well enough to explain why he had ruled some of them out.

What I remember most is how he framed the decision. He did not ask whether surgery was completely safe. He understood that no surgery is without risk. He asked me to help him weigh which side carried more risk: undergoing surgery, or continuing the life he was already living.

He put it in terms of probability, as one might expect from a mathematician. He concluded that the risk of something going wrong during surgery was small, while the likelihood of his quality of life continuing to erode without an effective intervention was a much larger concern. Once he had reasoned it through that way, he told me, the fear left. It did not return, even on the operating table.

The surgery is called Microvascular Decompression (MVD). Under the operating microscope, the surgeon identifies whether a blood vessel is pressing against the Trigeminal Nerve. If a responsible vessel is found, it is carefully moved away from the nerve. A small piece of cushioning material, commonly Teflon, may be placed between them to maintain separation.

An artery moved a few millimetres, and held there.

The exact findings and surgical steps vary from patient to patient. MVD is a major neurosurgical procedure, and its potential benefits, alternatives and risks need to be discussed individually with a qualified neurosurgeon.

DKM woke up and checked for the pain. It was not there. He reports that it has remained absent.

Life After Trigeminal Neuralgia Surgery: Six Years On

What stays with me is not the clinical outcome on its own. It is watching a person who spent four years building his entire day around avoiding triggers now sit in front of me with no visible tension in his body.

It is also the fact that, twice now, he has chosen to spend part of a visit to Pune sitting in my OPD, talking with patients who are exactly where he once was. He does this because he wants to help, not because I asked him to.

He has spoken about the experience on camera too, in his own words, for anyone who would rather hear it directly from him than read it from me. His full interview is available on our YouTube channel.

A man who spent four years organising his whole day around avoiding pain now spends part of his day helping a stranger get through the wait.

What stays with me is simpler than any of it: a man who spent four years organising his whole day around avoiding pain now spends part of his day helping someone else get through the wait.

Trigeminal Neuralgia Awareness: Why I Keep Telling This Story

Trigeminal neuralgia can be difficult to recognise. DKM saw three doctors before one used the words out loud. If a research-minded mathematician, capable of describing his symptoms with such precision, still had to work hard to get the diagnosis considered, it is worth asking how many people without his persistence are living with similar pain without a name for it.

If any part of what he described sounds familiar — a brief electric-shock-like pain brought on by touch, cold or a breeze, lasting only seconds but severe while it lasts — seek medical assessment. Trigeminal neuralgia is one possible explanation, but a clinician needs to assess the symptoms and consider other causes.

Watch DKM's full interview, in his own words:

DKM's full interview: Watch the patient interview on YouTube →