Banner by Claudia Huggins

Pain Profile: Trigeminal Neuralgia

by Guy Beresteanu

Trigeminal neuralgia has long been known as a mystery disease that causes patients unbearable pain. People who have this condition say that the pain is worse than childbirth or a kidney stone. Imagine feeling the pain of a sharp knife stabbing into your cheeks or the sensation of your skin burning—that’s what some trigeminal neuralgia patients face every day. 

Trigeminal neuralgia is more common in older women, and people with multiple sclerosis may experience it. The cause of trigeminal neuralgia is an intercranial blood vessel compressing the trigeminal nerve, which is the fifth cranial nerve, causing unbearable facial pain. The brain has 12 cranial nerves, each with a distinct role. The trigeminal nerve controls sensation in the face and some of the facial motor functions such as chewing. The pain typically does not last longer than a few seconds or minutes at a time, but during each episode patients describe experiencing such a strong level of pain that they become unable to do anything other than sit or lay motionless. Initially, the pain episodes are rare, but their frequency increases over time, preventing many patients from partaking in daily activities, such as driving or going to work. Billie Jean Caperelli, a victim of the disease for over 10 years, described her experience with trigeminal neuralgia for an article by Penn Medicine News: “When a flare-up starts, you fall to your knees in pain. You get no warning, so when the pain came on, it surged quickly, and I was out of commission until it subsided.” Trigeminal neuralgia’s unpredictability creates a major issue for patients, making it difficult to structure their day-to-day lives. In addition, trigeminal neuralgia is hard to diagnose, as approximately one in 15,000 people suffer from this rare disease.

Doctors can use magnetic resonance imaging to get a better look at the trigeminal nerve and the vessel compressing it. The MRI reveals which specific blood vessel is compressing the nerve and where the compression is occurring. However, once doctors have diagnosed a patient with trigeminal neuralgia, the treatments are rather limited—the first and least invasive choice is prescribing medication to reduce the pain episodes’ severity and frequency, with the hope of managing pain and avoiding surgery altogether. Dr. Raymond Sekula, one of the leading neurosurgeons in the country at the University of Pittsburgh Medical Center, says these medications have their challenges and can “cause debilitating side effects such as dizziness, nausea [or] lethargy and require the cessation of the medication, or the medication works for a period of time, even years, but ultimately stops working.” 

Ineffective medications often lead patients to seek one of two surgical interventions. One option is microvascular decompression, an operation where a cushion is inserted between the trigeminal nerve and the compressing vessel to alleviate the pressure. The other choice is a rhizotomy, a type of ablative procedure in which parts of the trigeminal nerve are destroyed. The former is generally preferred because it retains the integrity of the nerve, while a rhizotomy often results in facial numbness. Dr. Sekula has performed over 1,000 of these procedures and says, “About 95 percent of patients with the classic form of trigeminal neuralgia will awaken from the procedure immediately pain-free.” Patients call this operation life-changing because it usually alleviates their pain almost instantaneously after they wake up from surgery. 

On the clinical side, there are many physicians, such as Dr. Sekula, who are researching better treatments for trigeminal neuralgia. Researchers at the University of Alabama at Birmingham are running a clinical trial to test radiosurgery, a technique in which precise radiation is delivered to an affected area. This study will provide patients with a different treatment option that is less invasive than surgery and will hopefully improve the care given to people suffering from trigeminal neuralgia.

Patients with trigeminal neuralgia face a difficult road to regaining their quality of life, and awareness is one of the main first steps. Because of the lack of knowledge, it often takes years for people to get the treatment or simply an accurate diagnosis. Luckily, trigeminal neuralgia has seen an increase in awareness on the international level. Organizations such as the Facial Pain Association have online groups to help victims cope with their pain. They also started International Trigeminal Neuralgia Awareness Day, during which people and organizations wear or light up their office buildings in teal to spread awareness. Even a large building in Pittsburgh, the One Oxford Centre building, lit up their offices to show their support. Additionally, social media platforms, such as Snapchat, have helped to increase awareness. Some large news organizations, such as CNN, have posted and written about trigeminal neuralgia to increase national awareness. While many trigeminal neuralgia patients fear the worst—never getting rid of the excruciating pain—there is hope. There are many physicians and scientists who work every day to improve the treatment options and quality of life for patients.