Understanding Neuralgia: My Journey with a Neurological Condition

I’ve decided to share a more intimate, quieter part of my life today. Over the past few months, I learned that I live with a neurological condition called neuralgia.While the name itself is new to me, the reality is not. I now understand that I’ve been living with this condition since adolescence.

If I choose to speak about it, it’s not without intention. There are several reasons.First, because having our lived experience validated is essential to our well-being as human beings. Second, if my story can help even one person—or their loved ones—better understand this condition, then it will have served its purpose. And finally, these words may help explain certain behaviours I’ve adopted over the years to cope, often silently, with its effects.

For me, understanding neuralgia also means moving from invisible pain to medical recognition—a pivotal shift that profoundly transforms one’s relationship with self.

What Is Neuralgia?

Neuralgia is characterized by subacute pain that occurs in episodes, often described as electric shocks, affecting the area supplied by the impacted nerve. It may be accompanied by sensory or motor disturbances and is frequently marked by a persistent baseline pain between flare-ups.

In my case, it is occipital neuralgia, also known as Arnold’s neuralgia. This is a peripheral neuropathy of the neck and head caused by irritation or compression of a nerve located at the back of the skull. The pain is therefore concentrated in the occipital region of my head.

How I Experience It

I describe neuralgia as I feel it: electric shocks or burning needles piercing my head, sometimes several times a day, sometimes several times a week.

On a pain scale from 1 to 10, I generally live with a level between 3 and 5—constant, present, but manageable. I consider myself fortunate: the medication I take reduces my pain by roughly 40 to 50%.

The real challenge lies in the episodes rated 8 to 10, which have become more frequent since last spring. When they occur, they are far more difficult to manage and require significant recovery time, both physically and mentally. I’ve come to recognize my main triggers: stress and fatigue.

A Condition That Began in Adolescence

When I was 11 or 12, I was active in several sports, including figure skating. That’s when I first felt those electric shock sensations—sudden, intense, often occurring mid-movement.

I don’t know whether I spoke about it right away. I mostly internalized what was happening. When I eventually did mention it, the responses were often dismissive.“Yes, yes, Nadine, that happens to everyone.”

So I stayed quiet.

At 15 or 16, my mother took me to see our family doctor. That appointment left a lasting mark. After describing my symptoms, I was told it was all in my head. At the time, medical research had not yet caught up—scientific recognition of this condition only began around 2010.

I left that appointment with a deep sense of anger and confusion. For years afterward, I believed I was exaggerating. That I might be imagining things.

The years that followed were filled with consultations, migraine diagnoses, and tests that revealed nothing. While living in Edmonton between 1996 and 1998, some severe episodes even brought me to the emergency room, only to be referred once again to a neurologist in Moncton. Still, no answers.

Because the most intense pain occurred sporadically, I eventually resigned myself to it. I learned to live with it. To treat it as severe migraines. The last major episode I clearly remember before a long lull was during my pregnancy, over thirteen years ago.

When the Pieces Began to Come Together

In 2015, after experiencing unusual numbness on the right side of my body, I sought medical advice once again. Blood tests and an MRI of my brain and neck revealed a cervical disc herniation between the C5 and C6 vertebrae. I was referred to a neurosurgeon to discuss treatment options.

I’ll spare you the details, but it was only after requesting a second opinion that I began moving closer to a more accurate diagnosis.

The Turning Point

Last April, everything changed.

I was driving with my daughter on our way to the farmers’ market. As I turned slightly toward her to speak, an excruciating pain shot through my head—a 10 out of 10 electric shock. I cried out, which understandably startled her. Yet her response impressed me deeply. She remained calm and helped me through it.

The pain lingered throughout the day, leaving me with the sensation of having been struck violently at the back of the head. I was exhausted, nauseous, dizzy—completely depleted.

When the shocks returned in the days that followed, I knew this was no longer an isolated incident. I contacted my neurologist immediately. For the first time, a word was spoken: neuralgia.

The pain did not align with my cervical herniation—it always occurred on the left side of my head, while the herniation was on the right. When we reviewed my full history, the possibility of neuralgia became clear.

I was prescribed carbamazepine. While the medication provided some relief, a new challenge emerged: fear.The fear that pain might strike during a meeting or while speaking publicly—something I do regularly in my work—slowly turned into anxiety. Each appearance now required a careful internal pep talk.

A Pivotal Encounter

In July, I met with Dr. Charest, a neurosurgeon. After my neurologist, he was the second person to clearly speak about neuralgia and explain its mechanisms. He administered a corticosteroid injection during that visit. Six weeks later, it was clear: there was no meaningful improvement.

He then suggested I consult his colleague, Dr. El-Helou, a pain-management specialist known for innovative approaches. Dr. El-Helou had recently made headlines as the first neurosurgeon in Canada to perform a surgical intervention aimed at relieving chronic pain.

My Meeting with Dr. El-Helou

This consultation marked a true turning point.

With attentive listening and clarity, Dr. El-Helou confirmed that occipital neuralgia is a real neurological condition, one that has only been medically recognized in recent decades—explaining much of the earlier dismissal and lack of validation.

There are options. Treatments. Hope. Medication, Botox injections, surgery—nothing is decided lightly, but for the first time, a path forward appeared.

I left that appointment feeling lighter, as though I had finally set down a burden I’d been carrying for decades.

Learning Not to Suffer in Silence

Living with chronic pain often means learning how to hide it. To keep functioning. To appear fine.

For those close to me—especially my husband—this can be confusing. The pain isn’t always visible, except on the days when it becomes impossible to conceal. I’ve come to realize how common this coping mechanism is: staying silent, normalizing, minimizing—until we ourselves underestimate the impact.

I learned this the hard way last fall, when I hosted an event despite a week filled with intense pain episodes. I should have stopped. I’m still learning.

With my family, friends, and team, I’m now learning to navigate differently. To listen. To adjust. To care for myself.

And Now?

Understanding neuralgia marked a turning point in my journey. Putting words to what I had lived with for so long, recognizing it as a real neurological condition—not an imagined fragility—profoundly changed my relationship with my body, my pain, and my story.

Knowledge doesn’t erase suffering, but it transforms how we move through it. Understanding opens the door to prevention, treatment, and more compassionate choices for ourselves. It also offers a form of inner repair: realizing that everything I felt over the years made sense.

Today, I continue learning. To listen more closely. To respect my limits. To welcome signals rather than silence them. I am better supported, better accompanied, and most importantly, better informed.

For me, understanding neuralgia isn’t just about receiving a diagnosis. It’s about reconciling with my lived experience, easing a part of myself that was long doubted, and moving forward with greater gentleness—toward my body, my rhythm, myself.

Because understanding what we live with, naming what we are treating, and finally feeling validated are already an essential part of healing.

Being heard, acknowledged, and supported is an integral part of the healing journey.