Jasleen MahindruAbout 700 new cases of trigeminal neuralgia (TN), also known as tic douloureux, are diagnosed in Alberta each year. The condition is characterized by sudden, shock-like facial pain along the trigeminal nerve, often triggered by everyday activities such as eating, brushing teeth, or even exposure to cold wind.
While TN is typically treated with anti-seizure medications, these drugs can come with significant side effects, including blurry vision, imbalance, and allergic reactions. For about half of patients, the medications eventually stop working.
TN has historically been referred to as the “suicide disease” due to the severity of pain experienced by patients.
Tejas Sankar, associate professor of surgery and neurosurgery research director at the University of Alberta, described the condition based on clinical experience.
“It used to be called the suicide disease because a certain proportion of patients would be unable to tolerate the pain,” Sankar said. “Thankfully, that is a much lower proportion now because we do have effective treatments.”
Patients typically experience intense, one-sided facial pain described as electric shock-like, stabbing, and sometimes tearing. These episodes can last seconds to minutes and recur unpredictably.
“What makes it even worse is that very simple activities such as brushing teeth, chewing, touching the face, or even cold wind can trigger the pain,” Sankar said. “Patients tend to live in fear of the next attack.”
An incomplete understanding of causes
The exact cause of TN remains unclear. In many cases, a blood vessel compresses the trigeminal nerve near the brainstem, a condition known as classical trigeminal neuralgia. However, this does not explain all cases.
“A lot of people have that same compression and never develop the disease,” Sankar explained.
Other cases may be linked to conditions such as multiple sclerosis or brain tumours, while some patients show no clear structural abnormalities.
Advanced imaging studies suggest TN is not only a nerve disorder but may also involve changes in the brain. Researchers have observed alterations in pain-processing pathways, including possible degeneration and accelerated aging in certain regions.
“We still have an incomplete understanding of why people get the disease,” Sankar said.
Current treatment pathways typically begin with medication, with surgery considered only after drugs become ineffective or intolerable.
However, Sankar and his team are questioning this approach.
“We’ve learned that if you wait longer after diagnosis before intervening surgically, patients tend to do more poorly,” he said.
Over time, many patients require increasingly high medication doses, leading to side effects such as cognitive impairment, balance issues, and vision problems. Even when surgery is eventually performed, outcomes may be less durable.
Testing early Gamma Knife intervention
Sankar is leading a clinical trial investigating whether earlier use of Gamma Knife radiosurgery could improve long-term outcomes.
Gamma Knife is a non-invasive procedure that delivers highly focused radiation to the trigeminal nerve to disrupt pain signals. Unlike traditional surgery, it does not require incisions.
The trial will recruit 80 patients across Alberta. Half will receive standard medication, while the other half will undergo “ultra-early” Gamma Knife treatment shortly after diagnosis.
“We think that if you intervene early, you may be able to change the natural history of the disease,” Sankar said. “You might even achieve long-term remission.”
The procedure targets specific fibres within the trigeminal nerve, particularly those responsible for transmitting pain.
“The idea is to damage the pain-carrying fibres without affecting other functions like touch or chewing,” Sankar explained.
Because the treatment is highly precise, most patients do not experience significant numbness or motor dysfunction. However, it can take eight to 12 weeks for the full effects to develop.
Improving access and awareness in Alberta
Beyond pain relief, early intervention may help prevent long-term changes in the brain associated with chronic pain.
“We know from imaging studies that the longer someone has this condition, the more lasting changes occur in the brain,” Sankar said.
By treating patients earlier, researchers hope to prevent these changes from becoming permanent.
The trial also aims to address gaps in awareness and access to care. TN is often misdiagnosed initially as a dental issue, leading to delays in treatment.
“Many patients have to wait a long time to get the correct diagnosis,” Sankar said.
The study is being conducted in Edmonton, home to the only Gamma Knife unit west of Winnipeg, which makes the trial uniquely feasible in Alberta.
“We’re fortunate to have the infrastructure and experience to do this work here,” Sankar noted.
Looking toward a new standard of care
If successful, the trial could lead to a major shift in how trigeminal neuralgia is treated.
“Our hypothesis is that an ultra-early Gamma Knife will result in better long-term outcomes,” Sankar said. “If that’s proven, it could change the way we approach this disease.”
Such a shift could mean that future patients no longer have to endure years of debilitating pain and medication side effects before accessing definitive treatment.
“That would be a great day for the care of people with this condition,” he added.
