Shocks of excruciating pain radiate across the side of the face like a fierce electric shock. It feels like fire or hot coal is being held to the face while that same face is being stabbed with a sharp object and a razor-blade scraping down it leaving it raw and bleeding. When the sharp, stabbing and shock-like pain starts, there is no relief for days, months or even years. That is the painful experience that people who suffer from the dreadful and paralyzing condition of trigeminal neuralgia (TN) have to endure on a constant or regular basis.
TN is a very uncommon disorder which causes facial pain that is associated with the trigeminal nerve that carries sensation from the brain to the face. When there is a blood vessel pressing on the trigeminal nerve as it exits the brainstem, it causes a compression with the potential to wear away the protective coating around the nerve. TN symptoms can also occur in people with multiple sclerosis or may be caused by damage as a result of compression from a brain tumor. In many cases, a cause cannot be identified.
The pain is one of the most excruciating agonies a person may experience. The disorder has been described as one of the most painful conditions seen in medicine and is generally referred to as the suicide disease because the pain experienced is so spasmodic, paralyzing and intense that it has been known to have driven some people to suicide in some societies.
When the condition strikes, even the slightest touch to the face, whether it’s a breeze, hair falling onto the temple, simply brushing the teeth, head movements, talking, eating or even a loud noise may trigger flashes of pain. There is no relief from the pain. The pain suffered as a result of TN is the type of pain that no one believes unless they have experienced it themselves. It is relentless and takes over a life to the extent where it is difficult to find any joy in life.
The triggers are so many, and it is impossible to avoid them during the course of everyday living. Considering that the episodes of the attack are precipitated by even the mildest sensory stimulus, when a person is suffering an attack it becomes impossible for them to communicate effectively. Their life becomes an existence riddled with excruciating pain or the anticipation of pain at every moment. Even when the condition goes into remission, that period of relief usually lasts a short time – if the sufferer is lucky enough to have one at all.
Because TN is so uncommon, most physicians have very little experience with it and many fail to identify it on first diagnosis. This makes it very difficult for patients that have to endure living with the pain without having access to proper treatment. There have been several incidents where people suffering from TN have been referred to dentists by physicians who presume that the pain to the face is caused by a toothache. And in a large percentage of those cases, patients have had their teeth removed by dentists in order to ease that pain that is perceived to be caused by an abnormality in dentition, making the pain of TN presumably worse.
Part of the challenge faced by both sufferers of TN and the medical practitioners is the fact that there is no single test to diagnose TN. Diagnosis is generally based on the patient’s medical history, description of symptoms and a physical and thorough neurological examination by a physician. And because of overlapping symptoms and the large number of conditions that can cause facial pain, obtaining a correct diagnosis is difficult, but finding the cause of the pain is important as the treatments for different types of pain may differ. However, whilst the trigeminal nerve might be involved, it does not automatically establish the diagnosis of TN.
There is no cure for TN; at least not a permanent one. Even though there are several options a sufferer can have access to in order to manage the condition and there is the possibility of the condition going into remission for a period of time, people who live with TN generally have to manage it for the full duration of their lives.
Currently it may be managed by a combination of medications, ranging from anti-convulsions, anti-depressants, strong opiates, muscle relaxants or anti-inflammatories. These medications often have awful side effects such as confusion, dizziness, memory loss, chronic fatigue, drowsiness, weight gain, to name but a few, and, in many cases, they do not even completely control the pain. However, in cases where medication fails to relieve the pain of TN or produces intolerable side-effects, there is the option of surgical treatment.
The neurosurgical procedures available to help with TN depend on the individual’s preference, physical well-being, previous surgeries and the area of trigeminal nerve involved. The most common surgical procedure suggested to sufferers of the condition is known as microvascular decompression. However, although this brain surgery results in the longest period of pain relief, it is the most invasive and can have very serious consequences.
Another option is to have a rhizotomy. And although the rhizotomy is not as invasive as the microvascular decompression, it includes a method where the nerve fibres are destroyed to block pain. This causes some degree of permanent sensory loss and facial numbness sometimes causing the side-effect of hearing loss, balance problems, infection, and stroke. But the most discouraging aspect of any of the procedures and treatment of TN is that, no matter what procedure is adopted, often the condition will at some point still return.
There are also assortments of drug treatment available to quell the pain of the disorder, of which Carbamazepine is the most effective. But this drug has a lot of side-effects such as vertigo, drowsiness, ataxia and double vision; so elderly patients may not be able to tolerate this drug.
Given the seriousness of TN and the fact that it is universally considered to be the most excruciatingly painful condition known to medical practice, it is shocking that it remains relatively unknown. Sufferers of TN have until now been silent but have begun a push to be pro-active by trying to raise awareness and understanding of the condition that has destroyed lives. They did so by marking October 7, 2013, as the first International Trigeminal Neuralgia Awareness Day. So, in tandem, this week, dozens of buildings and structures across the world lit up teal for the day and it was used as a starting point for TN suffers to get recognition. An online petition was also submitted to the World Health Organisation asking for TN to be added to their “Health Topics List”. Globally, this will raise awareness, give access to resources, create opportunities for funding and research, would increase understanding and give individuals access to information.
It is important for facts about TN to be shared in public and stories of sufferers to be told so that people who may have family or friends that suffer from the condition may learn and become more aware of how to support sufferers of this dilapidating and horrendous condition.
Living with a debilitating, life-changing condition, for which simple things that most people take for granted like brushing teeth, eating, talking, or even moving the head is impossible, is like living with the enemy. For those who struggle to survive the pain and the harsh medications that accompany it, they can only pray that a cure is found for the world’s most excruciating pain. Because nothing can be worse than living a lifetime of unimaginable pain where one is driven to their knees. Unfortunately, that is the painful reality of those who live with TN, the enemy within.