Buzz
Trigeminal neuralgia (TN), also known as the 'suicide disease,' is regarded as one of the most excruciating pains a human being can endure. Those affected by this rare condition suffer agonizing pain in the fifth cranial nerve.
While there are some treatment options, TN is an incurable and progressive condition. Despite its rarity, even those who do not suffer from it will find certain facts about this condition both disturbing and fascinating.
10. A Longstanding Affliction
Discussions about facial pain, known as tortura oris, can be traced back to ancient Greek physicians such as Galen and Aretaeus of Cappadocia in the first century, and later to Avicenna in the 11th century. Even Hippocrates noted variations of this perplexing facial discomfort in his writings, recognizing it as a puzzling condition.
Reports of this condition also surface in 13th-century Somerset, England. At the tomb of Bishop Button, wall carvings depict figures experiencing intense facial agony—a potential early representation of this affliction.
Historians believe these carvings alluded to what is now recognized as trigeminal neuralgia, distinguishing it from mere toothaches. After Button's skeleton was exhumed, it revealed a set of almost perfect teeth. Despite this, people continued to visit his tomb in the hope that the saint might alleviate their toothaches.
Trigeminal neuralgia gained attention in the medical field when renowned physician John Locke described it in 1677. The term 'tic douloureux' was coined by Nicolas Andre in 1756. Following Andre's research, John Fothergill provided the first detailed explanation of the disorder, calling it 'Fothergill’s disease.'
Fothergill identified the condition as a neurological disorder, distinct from pains related to the teeth, mouth, or tongue. Today, it is known as trigeminal neuralgia, referring to a neuropathy of the fifth cranial nerve, also called the trigeminal nerve, in modern neurology.
9. A Disease With Many Names
It’s impossible to overlook the shock factor of trigeminal neuralgia’s most infamous and chilling nickname—the 'suicide disease.' Many people are taken aback when they first encounter this term, though they may ultimately understand its connection to the severity of the condition.
Trigeminal neuralgia inflicts agonizing pain, often described as the worst pain a person can endure. Fortunately, effective treatments have only been developed in more recent years.
Faced with such unbearable pain, over 50 percent of patients were once believed to have taken their own lives. However, patients (and their families) can take solace in the fact that there is no reliable evidence or statistics to substantiate this claim.
Alternative names for trigeminal neuralgia include tic douloureux, Fothergill’s disease, prosoplasia, and trifacial neuralgia. The most common name used by both those affected and medical professionals is simply 'TN.'
8. Pain That Strikes Without Warning
What exactly sets off the facial spasms and electric-like shocks in a person with TN? Perhaps a better question would be: What doesn’t trigger it?
People with this condition experience a wide range of triggers. Commonly reported culprits include smiling, touching the face, brushing teeth, combing hair, wind, eating or drinking, temperature changes, shaving, applying makeup, certain foods, loud sounds, and kissing.
The list of triggers continues, and many sufferers mention that even the mere anxiety of provoking an episode often leads them to avoid everyday activities.
7. The Link to Dental Health
"Pull them all out!" is probably the exclamation most new sufferers of TN make before they are properly diagnosed. Similar to the image of Bishop Button’s shrine, people with TN often appear as though they are enduring severe toothaches. Their first instinct is to visit a dentist, seeking the removal of the suspected teeth, unaware that the real issue lies in facial nerve pain radiating to the jaw’s nerve endings.
For many TN patients, teeth are unnecessarily extracted. Believing the pain originates from their teeth, they might convince their dentist to remove them, particularly if the dentist isn’t well-acquainted with TN or if a correct diagnosis has yet to be made.
This can lead to a disappointing and confusing experience for both the patient and the doctor, as they discover that the pain persists even after attempts to remedy it, sometimes resulting in the need for dentures before turning 50. This unfortunate scenario is often shared by seasoned TN patients when offering advice to newcomers.
While the dental connection isn’t entirely misplaced, it’s important to note that research indicates dental problems can sometimes be the origin of TN facial pain, rather than merely an effect of it.
Nonetheless, the belief that dental issues may be the cause of TN pain is not completely unfounded, as studies have shown that dental problems are frequently linked to the onset of TN-related facial discomfort.
Nearly 40 percent of trigeminal neuralgia cases can be traced back to accidental or iatrogenic dental trauma. When combined with dental procedures that trigger the condition and the constant sensation of tooth pain, the fear of visiting the dentist can take on an entirely new meaning, transforming into a full-fledged 'dental phobia.'
6. Addressing the Incurable
Despite the long history of trigeminal neuralgia, it is remarkable that viable treatments for the disorder were only discovered in the past century. Once medical professionals identified its neurological roots, they were able to develop more effective medical interventions.
Because it’s a condition affecting the nerves, traditional painkillers like NSAIDs and opioids are ineffective against the pain. Medications commonly used to treat seizures and convulsions, such as gabapentin and Trileptal, serve as the first line of defense.
These medications are effective in about 80 percent of cases. However, patients often experience troublesome side effects and may need to gradually increase their dosage to maintain the same level of effectiveness. Other pharmaceutical options, such as Lamictal and Baclofen, can be used to enhance the effects of the anticonvulsants.
When medication alone isn't sufficient (and it often isn't), TN patients have several surgical options to consider. The most common is microvascular decompression (MVD), a procedure pioneered by Walter Dandy in 1925, which has since become the most widely used surgical treatment for TN.
MVD is a type of brain surgery that involves separating the root of the trigeminal nerve from the artery compressing it and causing irritation. This surgery tends to be particularly successful for patients with Type 1 TN, especially when MRI results show that nerve compression is the primary issue.
The long-term results of MVD can vary; some patients experience complete relief, but often only for a limited time. This can lead to the need for multiple surgeries and an increased risk of severe side effects, such as anesthesia dolorosa.
For patients with Type 2 TN or atypical facial pain, MVD may not be the most suitable option. Alternative surgical approaches include rhizotomy, glycerol injections, and balloon compressions.
So, where does all of this leave us?
Right back where we began. TN remains a puzzling and formidable adversary to the field of neurological sciences. Some treatments are effective—but only for a subset of patients and only for a limited time. Managing a treatment plan for TN is a constant challenge. It requires a great deal of trial and error, persistence, and dedication from both doctor and patient.
Research is underway. With some good fortune (and the work of a few skilled scientists), a cure—or at least a long-lasting, dependable treatment—might be just around the corner.
5. The Triple Threat
Trigeminal neuralgia often brings along a few other unwelcome companions. As if the sensation of your face being stabbed with ice picks, electrocuted by lightning, and weighed down by 10-ton dumbbells isn’t enough, now you must deal with the added misfortune of a severely compromised trigeminal nerve.
Multiple sclerosis is the most well-known comorbidity associated with TN. However, scientists are still unclear about the exact nature of the connection, or which condition comes first—the chicken or the egg. (That said, it's worth noting that 1–2 percent of MS patients experience TN as their first symptom.)
Researchers have uncovered a concerning statistic: 18 percent of women with TN also have a diagnosis of MS, and 2 percent of all MS patients experience TN. To make matters worse, 5 percent of TN–MS patients suffer from bilateral facial pain, a rare form of TN typically seen only on one side of the face.
Another complication for TN sufferers is the presence of migraines and cluster headaches. These three conditions often occur together, though there is no evidence that one causes the others. Some doctors speculate that this connection may stem from the close proximity of migraines and cluster headaches to the trigeminal nerve, creating a complex web of aggravation, pain, and other symptoms.
It's important to note that headaches are a common side effect of TN medications. While anticonvulsant therapies used for TN can sometimes help prevent migraines and other headaches, in many cases, these headaches require separate treatments and interventions.
It’s not hard to imagine that the strain of living with this condition could significantly impact a person's mental health and overall well-being. Depression is often a companion to TN patients, and it’s essential that doctors and caregivers address and provide support for this unfortunate consequence.
A person's life undergoes a dramatic shift upon being diagnosed with trigeminal neuralgia. This includes the fear and uncertainty during the diagnostic process (not knowing what is happening), adapting to life with persistent pain, losing the ability to engage in activities once enjoyed, and a general sense of hopelessness.
Support groups, both online and in person, offer valuable assistance in adjusting to the condition and provide a space to find understanding and empathy for the changes in one’s life.
4. The Importance of Differential Diagnosis
Receiving the correct diagnosis at the right time is crucial to understanding, managing, and coping with trigeminal neuralgia. To avoid the frustrating path of misdiagnosis, experts suggest following these steps.
First, if you experience tooth pain, consult a dentist. Inquire if they are familiar with trigeminal neuralgia. If they are, request a differential diagnosis before considering any tooth extractions. If they aren’t familiar with the condition, it’s best to seek another opinion.
Next, schedule an appointment with a neurologist as quickly as possible. These specialists are the ones who truly understand the condition and can offer appropriate assistance. Although finding one in your area may take some time, in the meantime, your primary care physician can help devise a temporary plan.
If you find yourself in the emergency room due to intense pain, be prepared for your pain to be questioned. Since ER doctors are not experts in TN, be ready to explain what you know about the condition. (It helps to have this information written down, as you may be too overwhelmed by pain to speak clearly.)
Ask if there is a neurological consultant available at the ER. Keep in mind that typical pain medications, including opiates, will likely provide only limited relief. The first line of emergency treatment is often fosphenytoin IV (also known as Dilantin). Be sure to ask the doctors about it. (Having this info handy can be a lifesaver during a pain crisis.)
Once you’ve had a thorough evaluation by your neurologist, you can request that they write an emergency care plan for you. Bringing this document to the ER will help ensure that the medical team understands your needs without confusion or delays.
Finally, it is possible to self-diagnose to some extent. A leading international researcher and neurologist specializing in trigeminal neuralgia has developed a self-diagnosis tool. He believes that this tool can guide individuals to make a reasonably accurate diagnosis of facial pain. You can access it here.
Once you’ve identified a likely diagnosis, take it with you to your doctor appointments. If you’re fortunate, it may help make the diagnostic process smoother, and you’ll feel more in control of your health journey.
3. The Bright Side (Forget the Rest)
It’s difficult to imagine any positive news after all the unsettling information we've discussed. But believe it or not, there is some.
If you or someone you know suffers from TN, there are many helpful resources and proven practices to make the experience more manageable and filled with hope. Experts agree, these tools are truly worth exploring.
Community: Join organizations like the Facial Pain Association, TNnME, and connect through social media support groups.
Self-Care: It’s crucial now more than ever to prioritize yourself. Recognize your triggers and create a strategy for dealing with them. Work with your family to establish a group plan for handling flare-ups. Find relaxation techniques that soothe you and commit to practicing them.
Pain Management: Consider seeking out a pain management specialist. These professionals offer alternative methods for coping with pain that many TN patients have found incredibly beneficial.
Be Your Own Advocate: Understand your condition thoroughly—know your diagnoses, test results, medications, ER visits, and doctors. Maintain an organized record of all your medical documents, and bring them with you to every doctor or ER visit. Take control of your health and speak up for yourself!
2. Gaining Recognition
The facial pain and TN communities have tirelessly advocated for more advanced research and heightened awareness of trigeminal neuralgia. On October 5, 2017, the U.S. House of Representatives passed House Resolution 558, officially designating October 7 as National Trigeminal Neuralgia Awareness Day. This resolution also reflects the government’s dedication to supporting the search for a cure for the condition.
The facial pain network is also pushing for global recognition of October 7 as International Trigeminal Neuralgia Awareness Day by the World Health Organization. This request was submitted on July 1, 2017.
In addition, TN is slowly gaining more attention through various news reports, TV shows, and short films. As the condition comes to the spotlight, sufferers will discover they are not isolated, researchers and scientists will be motivated to find a cure, those who live or work with TN patients will develop a better understanding of the disorder, and the medical field will become more aware of it, reducing future misdiagnoses.
1. Famous Faces
Although trigeminal neuralgia is quite uncommon, it has impacted a number of both contemporary celebrities and historical figures.
Gloria Steinem, the renowned social activist and writer, has openly shared her struggles with trigeminal neuralgia. She describes the pain as unbearable, especially during flare-ups, which leave her speechless and unable to walk.
HR, the lead singer of the legendary rasta band Bad Brains, underwent surgery to treat his trigeminal neuralgia. The family raised $16,000 through GoFundMe for the procedure, and HR is now recovering well.
In 2011, Bollywood star Salman Khan revealed he was suffering from trigeminal neuralgia and traveled to the United States for treatment. Khan leveraged his celebrity status to raise awareness, stating, “If there was a choice to give this pain to my worst enemy, I would not give it. They wouldn’t be able to take it.”
In 2015, Member of Parliament Andrea Jenkyns faced criticism in the media for struggling to complete her speech at a public event. She defended herself, attributing her difficulties to trigeminal neuralgia, describing the condition as both “excruciating” and “sporadic.”
