What It’s Like to Live With Trigeminal Neuralgia, the Worst Chronic Pain Possible

"After a quick Google [search] I found out it was also known as the suicide disease."

Too many of us have stories about struggling to access the care we need. Often, health care obstacles are directly tied to medicine’s gender bias, as well as stigmas relating to our race, ethnicity, sexuality, gender identity, age, size, income, and condition. In our series Pain Today, we are highlighting these stories through personal and reported essays, hoping to empower each other to advocate for our health in a way that much of the medical community does not.

Trigger Warning: This article discusses suicide. 

As Melissa Géczy blended her eyeshadow on the day of her 27th birthday, she realized something was different: her eyelid was completely numb. Throughout the day, the right side of her face, half her scalp, and neck also went numb. It wasn’t until a few days later that the severe pain in her face began. Géczy was eventually diagnosed with Trigeminal Neuralgia (TN), which has been described as the most excruciating pain known to humanity. 

Trigeminal Neuralgia is a rare chronic disease that causes unbearable nerve pain to normally appear in the face area. But while the disease is rare, the number of people diagnosed is as high as 150,000 each year. And even though Géczy was diagnosed at 27, TN occurs most often in people over 50.

However, while being diagnosed with TN at such a young age used to deter Géczy from using Instagram because it reminded her of who she once was, she now uses her account to share her experience and resources to spread awareness about this chronic pain condition. “I feel like when you raise awareness, you’re making people aware of realities that are different from their own,” she tells HelloGiggles.

So, to provide more awareness about TN, we spoke with Lisa Cook, M.D., co-director of The Los Angeles Headache Center, to learn more about this rare chronic illness. Raising awareness isn’t only important for treatment and research purposes—but also for inclusivity.

What is Trigeminal Neuralgia (TN)? 

According to the National Institute of Neurological Disorders and Stroke, TN is a chronic pain condition that affects the trigeminal or fifth cranial nerve, one of the most widely distributed nerves in the head. “Trigeminal neuralgia, generally speaking, is episodic,” explains Dr. Cook. “Usually, people have intermittent, brief attacks but there are some chronic forms in patients that can get worse over time where they just have constant ongoing pain, but that’s much less common.”

Like many of us, Géczy hadn’t heard of TN before her diagnosis. “When I found out that there was a name for what I had, there was a sense of validation—but after a quick Google [search] I found out it was also known as the suicide disease—no one should experience that, really.” While it is rare, Géczy emphasizes that more than enough people are affected for society and experts to be having conversations about this disease.

Trigeminal neuralgia causes:

It is generally agreed among neuroscientists that TN is caused by the trigeminal nerve “misfiring” and sending out inappropriate pain signals. Most people diagnosed with TN report that their pain appeared out of nowhere. “I went to sleep in one body and I woke up in a body that I did not recognize at all,” says Géczy.  

“Most of the time it’s unknown, it’s idiopathic, which just means that we don’t really know the cause,” says Dr. Cook. However, she adds that some causes can be identified in certain cases. For example, “It could be as a result of a tumor that’s pushing on the nerve itself or sometimes a blood vessel compresses on the nerve” and Multiple Sclerosis (MS) or strokes can be a possible cause, although very rare. But in most cases, it just happens out of nowhere. “The pain just starts up in that trigeminal nerve distribution,” Dr. Cook tells HelloGiggles. 

Trigeminal neuralgia symptoms:

Dr. Cook says the Trigeminal Nerve goes to three parts of the face, “the forehead (V1), cheek area (V2), and jaw or lower face (V3). Most people have pain primarily in that B2 or B3.” Most people experience pain on only one side of the face, but in some rare cases, it can occur on both sides, which means two different nerves are affected. As far as the pain itself, Dr. Cook describes it as an intermittent sharp, shooting pain. “Some people have some tingling or numbness but it’s most often just pain,” she says.

Trigeminal Neuralgia

Trigeminal neuralgia triggers:

As mentioned previously, an initial cause or trigger is rarely identified, but according to Dr. Cook, “There are certain kinds of movements that can trigger the pain for people.” While triggers can vary, some common ones she shared are: eating, chewing, talking, any kind of mouth movement, brushing teeth, shaving, water in a hot shower, or even the wind can also be a trigger.

Trigeminal neuralgia treatment:

There is currently no cure for TN, but there are treatments available. Dr. Cook shares that the order of treatment goes from oral medication, injections, and finally, surgery. When it comes to oral medication, anti-seizure or neuropathic pain medication is prescribed. However, “If oral medication [doesn’t] work or patients aren’t able to tolerate it, then there are other types of treatment, [like] injections or sometimes, we refer to pain specialists.” As the last alternative, surgery is an option. Dr. Cook describes the surgery as a “type of brain surgery where [the neurosurgeon] decompresses the nerve.” 

In Géczy’s case, she decided to have surgery. After being told by multiple doctors that there was no contact being made with her Trigeminal Nerve, one surgeon found that there was indeed a vein pressing on it. The surgeon explained that although the surgery could work, there was a chance it could make matters worse. Unfortunately, in the end, the surgery didn’t work the way the doctors had hoped. “They don’t know why it didn’t work,” says Géczy, “They actually found a vein and an artery touching my trigeminal nerve and they separated them…and it still didn’t work! No one knows why.” Regardless, she’s glad she did it.

Géczy turns 30 soon and shares that it took her a lot of work and grieving to finally accept that she is disabled. “Becoming disabled is actually the best thing to ever happen to me. It really didn’t feel like that in the beginning. I was depressed, I was bitter, and I thought my life was over when it was actually just taking another shape and form.” However, her POV isn’t an invitation for toxic positivity. “Being positive will not cure an incurable disease. Being positive is not the solution you think it is and it is definitely not the solution to my health,” she explains. She points out that people often choose toxic positivity so that they can feel less uncomfortable about her talking about her disease and being disabled. 

Oftentimes, we believe we are helping disabled people by offering solutions to their disabilities but this way of thinking is harmful. “We don’t talk about illness or disability as a society and I think people don’t realize that it feels like they just want to fix you, and feel good about it,” says Géczy. We must get rid of our savior complex and educate ourselves on the different disabilities that exist. Disabled people aren’t broken.

Finally, there’s one thing Géczy wants to make clear, “I don’t want people to feel sorry for me, that is not why I choose to share my reality… I wish people would stop seeing disability as a tragedy. Yes, I live with the most painful disease every day which is tough, but it also means I am tough and no one should pity me.”