Emily Morton’s Battle: Navigating the Pandemonium of Atypical Trigeminal Neuralgia

Three years ago, Emily Morton, a 28-year-old from Australia, was leading a life filled with joy and promise. Recently married to her soulmate, Andy, and planning for a future filled with children, Emily’s world seemed perfect.

But then, her life took a dark turn. A persistent, strange pain began in her teeth, gradually escalating into unimaginable agony. Despite visits to multiple dentists and doctors, no explanation for her condition could be found.

“Imagine having a dentist drill into every single one of your teeth 24/7 and there is nothing you can do to stop the pain,” Morton shared with news.com.au.

Desperate for answers, she underwent a series of brain scans and blood tests. Finally, she was diagnosed with atypical trigeminal neuralgia, a rare and excruciating condition.

What is Atypical Trigeminal Neuralgia?

Atypical trigeminal neuralgia, often called the “suicide disease,” is a condition involving severe pain in the face and head. It affects the trigeminal nerve, which runs from the brainstem to the face, governing sensation.

Morton’s case is unique as the pain affects both sides of her face, making it particularly debilitating. She describes the pain as electric shocks triggered by the slightest touch.

“It hurts when I smile, talk, and eat. All normal things. There are no words to describe this degree of pain. It’s like being struck by lightning, it makes you want to fall to the ground and scream,” she said.

Doctors have called it the “most painful condition known to medicine,” and it is often associated with suicide attempts due to its severity.

According to the American Association of Neurological Surgeons, approximately 150,000 people are diagnosed with trigeminal neuralgia each year, with the condition most commonly occurring in those over 50.

Causes of Trigeminal Neuralgia

Trigeminal neuralgia typically results from damage or irritation to the trigeminal nerve. The most common cause is compression by a blood vessel—usually an artery or a vein—near the brainstem, leading to neuropathic pain.

However, other factors can also contribute to the condition. Multiple sclerosis, which damages the myelin sheath protecting nerves, is a significant risk factor.

Tumors, strokes, or facial trauma can also cause the nerve damage leading to trigeminal neuralgia. For Emily Morton, despite extensive testing, the exact cause remains unknown.

“We’ve traveled interstate and even overseas in an effort to get me some kind of quality of life. It feels like a race against time to find out why. The condition has taken everything from me. It takes over my entire existence,” Morton stated.

Treatment for Trigeminal Neuralgia

Managing trigeminal neuralgia pain is challenging, but various treatments are available. Morton is currently undergoing a cutting-edge procedure called MRI-Guided Focused Ultrasound, recently made available in Australia.

This innovative method uses focused ultrasound waves to target the thalamus, disrupting pain signals. Morton has a 50/50 chance of experiencing relief, though the treatment is not covered by Medicare and costs over $40,000.

Thanks to generous donations amounting to $20,000, Morton is able to proceed with the treatment. She remains hopeful for a cure and plans to advocate for those suffering from invisible illnesses.

“In 2024, I believe there must be technology out there, somewhere, that can at least help. My plan is then to dedicate my life to becoming a fierce advocate for people with invisible ‘mystery’ illnesses,” Morton expressed.

“I want them to know they are not alone. I want them to hope and trust in the science that is emerging, and I want us to come together and fight for better healthcare.”

Conclusion

Emily Morton’s journey is a stark reminder of the challenges faced by those suffering from atypical trigeminal neuralgia. Her resilience and determination to find relief inspire hope in the quest for better treatments and understanding of this debilitating condition.

As she continues her fight, Morton’s story urges us to advocate for better healthcare and support for individuals dealing with invisible illnesses. Your support can make a difference in her quest for relief and in the lives of others facing similar challenges.

We encourage readers to share Emily’s story and support her journey. Together, we can bring awareness and inspire change.

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