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Trigeminal Neuralgia: How I Survived the Worst Pain Ever

A journalist, Marcelle writes to raise awareness for trigeminal neuralgia, a condition she was diagnosed with in 2013.

This illustration shows the trigeminal nerve's three major branches extending into the facial areas.

This illustration shows the trigeminal nerve's three major branches extending into the facial areas.

I survived what many medical experts agree is the "worst pain known to humankind." Here I share my personal story ending with a successful microvascular decompression (MVD) procedure, which is a type of brain surgery. However, I am not cured.

I look at my life now through a different perspective and cherish every day. I lack medical training, so I cannot offer true medical advice or recommend any specific treatment. What I can do, however, is share my own patient experience with this disease, detail what worked for me, offer support avenues and resources I found on my journey, and just maybe provide some hope to those warrior patients suffering each day from this condition.

Disclaimer: I am not a medical professional. This account is from my personal experience as a patient. If you are experiencing facial pain symptoms, please seek out the expertise of a medical professional.

"The Scream," by Edvard Munch, is often used as a visual symbol in depicting the facial pain of trigeminal neuralgia.

"The Scream," by Edvard Munch, is often used as a visual symbol in depicting the facial pain of trigeminal neuralgia.

What Is Trigeminal Neuralgia?

Trigeminal neuralgia (TN) is a debilitating nerve pain disorder often described as the most excruciating pain known to humankind. TN causes facial pain, usually affecting one side of the face, where severe, electric shock-like pain hits typically in the lower jaw area, teeth, gums, and cheek. The pain can sometimes be felt in the area around the nose, ear, eye, and forehead. Irritation of the trigeminal nerve causes the pain, usually by a compressing blood vessel or vessels, and less commonly by a tumor, multiple sclerosis or other abnormality. It is sometimes referred to as the "suicide disease," based on historical context at a time before medical treatments existed, when patients had little or no options.

This illustration shows the distribution of the three major branches of the trigeminal nerve that feed the facial area. Pain may be experienced in any or all these areas. The pain often occurs in waves or "attacks," lasting anywhere from a few seconds to a few minutes and sometimes longer or ongoing. Pain is easily triggered by simple acts such as eating, talking, shaving, teeth brushing, smiling, putting on makeup, touching one's face, or even a gentle breeze.

The video below shows Neil Martin, M.D., FAANS, and chairman of the UCLA Department of Neurosurgery, discussing trigeminal neuralgia in detail, including symptoms, causes, and treatments.

My Trigeminal Neuralgia Story

The words below are my personal story of my experience as a patient with trigeminal neuralgia starting in 2013. I am fortunate that I no longer experience the severe pain symptoms, nor the ill side effects of the medication, but the pain cannot escape my memory. I also live knowing that the pain could return.

My First Shocking Pain

On a cold, Sunday afternoon, what felt like a sudden bolt of lightening struck my face out of nowhere while standing in my kitchen (patients often remember the exact moment and location of their first pain). I dropped to my knees. The excruciating, electric-like pain attacked the left side of my face—my teeth, my gums, my cheek, my jaw. It felt as if a dentist was drilling all of my upper and lower teeth on the left side at the same time, without novocaine! At the same time, it felt like someone was cattle-prodding my cheek and jaw. I honestly felt like I was dying. If I had been standing on a cliff at that moment, I would have jumped off to escape. Then, as quickly as it came on, it disappeared. It returned a few minutes later with a vengeance, disappeared again, came back and on and on throughout the day. I lay curled up on my floor waiting for each horrific session to pass.

Doctor or Dentist?

I found myself at my family doctor's office the next morning. I thought to go to the dentist first since it seemed my pain came from my teeth and then radiated out but my dentist's office was closed on Mondays. That turned out to be the best thing that could have happened to me that day as so many TN patients head to their dentist and often times have teeth pulled to relieve the pain to no avail.

After punching away on her laptop, my doctor figured out that my pain might be caused by this thing called Trigeminal Neuralgia or possibly a few other things I’d never heard of. She referred me to a Neurologist to figure it out. She prescribed a couple of strong pain medicines to get me through until my appointment; they didn’t work.

Diagnosing TN Early

My diagnosis came in just a few days. Most patients with this condition wait months or years for a diagnosis. Often, because the pain targets the teeth and jaw, patients end up in a dentist chair, having teeth pulled to relieve the pain. The problem is that pulling teeth, root canals, and so on do not work. The tooth is gone but the pain remains. Many dentists and even doctors do not have experience diagnosing or treating this condition since it is a very rare disease. Getting diagnosed is half the battle—the first battle I won in this long ordeal.