TN is often referred to as the ‘suicide disease’ because the intense pain it brought about is so unbearable and agonizing, sufferers had been known to commit suicide rather than face the pain. Medical experts cite it as the most ‘painful’ condition known to mankind; more painful than any other medical condition including, childbirth.
As he got ready to walk towards the building to, once again, confront his archenemy, Alfred was full of fear and anxiety. He had been here 2 times before in this life battle that he had fought for the last six years. But this time it was different. This time, he felt drained, defeated and un-optimistic. Unlike the first two battles when he thought he would defeat his enemy, this time Alfred knew the enemy was strong and unrelenting.
As he got closer to the door, his mind started to wonder down memory lane to the very beginning. To the beginning when this ‘battle of his life’ started…
“…It began six years ago in the early hours of a chilly Wednesday morning. Alfred King, an up and coming lawyer, woke up to get ready for work. Having qualified as a lawyer 5 years earlier, Alfred hit, what he thought would be, the case of his life. It was a multi million Naira Class Action which Alfred and the legal team he worked with had spent the better part of eleven months putting together. As he got ready for his day in court, Alfred was anxious and excited about presenting the case he had worked so hard on.
To make sure everything went as planned, in a break from his usual routine of getting ready for work before eating breakfast, Alfred decided to eat breakfast before getting dressed. “I’m not going to let an accidental stain slip from his mouth onto my shirt,’ he thought out loud. Proud that he managed to get ready without an unfortunate breakfast mishap on his crisp white shirt, Alfred arrived in court and rushed straight to the room where the case would be heard.
As Alfred might have guessed, he was the first person to arrive in court; he had arrived 2 hours early. The timing worked perfectly for Alfred because it gave him enough time to arrange his documents, get his mind into ‘legal eagle mode’ and relax; ready for his great court room performance. This was certainly Alfred’s day and nothing was going to stop him squashing this case because, if nothing else, Alfred was prepared to address the court. He was prepared to express his legal arguments like he had never done before. He was prepared to impress his clients, his colleagues and the Judge.
But as prepared as Alfred was, little did he know that in precisely 2 hours and forty eight minutes time, the choice to address, express, and impress would be completely taken out of his hands. In precisely 2 hours and forty-eight minutes, a vicious and unforgiving ‘enemy’ will prevent him from addressing the court, expressing his case and impressing his clients.
It was an enemy that Alfred unknowingly lived with. It was an enemy that silently grew stronger by the day. It was an enemy that had followed him to court on that fateful day. It was an enemy that had not made its existence known because like Alfred, it too, had chosen the moment it was to make its grand performance. The moment was on that same chilly Wednesday morning; precisely 2 hours and forty-eight minutes from the time Alfred finished laying out his documents in preparation for his case.
After preparing his documents, Alfred sat alone in the court for a while before people started arriving. The court filled up relatively quickly and ten minutes after the proposed start time all the parties, save the Judge, had arrived and were seated in the courtroom.
The Judge arrived thirty-three minutes late and two minutes after her arrival, the court was in session. After the usual court proceedings, the time came for Alfred to present his case. It was precisely 2 hours and forty-five minutes from the time he arrived and settled in court.
As he began to express himself in the most impressive manner, Alfred didn’t feel the enemy that was creepily approaching him. Getting ready to attack, it reached out to grab the right side of his face at the same time that Alfred was addressing the court. And before Alfred knew what hit him, the enemy took aim and struck!
The first Alfred realized he was under attack was when he felt a sharp electric currant strike his right cheek. He lifted his hand to feel what it was but before he could do so, his right cheek felt like it had been stabbed with a sharp blade, which had been gorged in scorching fire. He managed to yell in agony but the motion of opening his mouth only made the pain more intense. Attack after attack continued with Alfred crumbling in excruciating pain. The final agonizing assault, which was a mixture of a violent, electric shock-like pain, severe burning and repeated stabbing, paralyzed him. Slumping to the ground under the weight of such excruciating torment, the likes of which Alfred could never have previously imagined, the room began to blur and he began to fall. As his body and head reached the floor, his eyes closed and everything faded to black!
When Alfred finally woke up, he found himself lying on a hospital bed with his doctor, standing over him. Barely able to remember the events that led him there, his doctor, Dr. Stober, sat down to have a chat with him. After a brief explanation, which Alfred, still confused, was not following, Dr. Stober recommended that Alfred go for an MRI among other laboratory tests to determine what had actually caused such a brutal attack.
By the time the tests and x-rays came out, Alfred was diagnosed with a rare and chronic disorder known as Trigeminal Neuralgia (TN). Never having heard of about the condition, Dr. Stober explained to Alfred that the disorder is a vicious, unyielding and volatile illness referred to as the ‘suicide disease,’ which had no lasting cure. The disorder is characterized with bouts of intense and painful attacks, which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months. Depression is often seen in patients with Trigeminal Neuralgia. Most sufferers incur Trigeminal Neuralgia when they are older than 60 years and there is no known cure for it.
TN was often referred to as the ‘suicide disease’ because the intense pain it brought about was so unbearable and agonizing, sufferers had been known to commit suicide rather than face the pain. Medical experts cite it as the most ‘painful’ condition known to mankind; more painful than any other medical condition including, childbirth.
Having been given the initial information about the condition that caused him such pain, Dr. Stober referred him to a neurologist, who could explain TN in more depth and the options available to Alfred in treating it.
Alfred learnt that TN is a disorder of the trigeminal nerve in the face, resulting in its overreaction to everyday stimuli, such as eating, talking, brushing, touching or even just standing outside in the breeze. Often wrongly diagnosed, sufferers endure for years and go through painful, unnecessary dental procedures before knowing they have TN.
Ordinary painkillers have no effect is easing the pain caused by TN. Instead, epileptic medication and an anti-convulsant drug called Carbamazepine are usually used to treat it. However, the tendency of such drugs having negative side effects and after-effects is high and at some point, they may cease to be effective. Even in a situation where the pain has been controlled and the sufferer feels comfortable enough to stop taking medication, the condition and pain may return after some time and medication would have to be restarted. In some cases, sufferers require additional drugs to control advance episodes and may, as a last resort, need surgical intervention.
While there is no cure for TN, a Microvascular Decompression (MVD) ‘brain surgery’ is the closest option to a cure. However, even with the MVD brain surgery, there is a possibility of TN reoccurring because the effect of the procedure may only last for a couple of months or years and has a likelihood of activating a different kind of pain in the nerve, mouth, eye, ear or head. Due to this, many sufferers do not subscribe to the procedure and put themselves through delicate brain surgery when that brain surgery gives no guarantee whether it will ease the pain at all.
In Alfred’s case, initially, he was put on Carbamazepine, which eased his pain for a very short while. When the pain came back, Alfred had nerve blocks from his neurologist put directly into the nerves in his head. In addition to this, at some point in his journey, Alfred was prescribed with injections, which he self-administered. But despite all of that, the brutal electrical stabbing pain he was experiencing became more regular and more intense, bearing across the right side of his face; through his mouth, eyes, ears, gums, forehead, to an extent where he was unable to even smile.
As time went on, crumbling under the agony, Alfred was so desperate to stop the pain; he eventually opted to have brain surgery. Since the beginning of his ordeal, up until now, he has had two brain surgeries; the first of which eased his pain for only a couple of months and the second, which lasted a little under a year…
Six years since that fateful day in court when he was attacked by an enemy living inside him, Alfred arrived at the hospital where he would be undergoing surgery for the third time. With every surgery Alfred has, the risk of the incapacitating, opposing effect of Anesthesia Dolorosa increases; so surgery, in itself, is a risk for him. But what else could he do? He was so desperate to stop the pain. Unable to be productive due to the constant pain and because the medication he was on was no longer effective, Alfred felt he had no other choice but to go for another surgery.
For six years, Alfred has lived, suffered and been battered and abused by this terrible enemy within him. An enemy that is a cruel condition that has devastated his life. Almost 24/7 he lives with and feels an excruciating pain that very few people can imagine. Trigeminal Neuralgia has completely changed his life.
Even though Alfred tries very hard to manage and work around the unbearable, unrelenting, unpredictable pain when he can and when he has bouts of relief, it is such a struggle. His once vibrant legal career has had to take a back seat to his journey of finding a solution to this constant pain. The job that he loved so much required an expression of the face, the gift of speech, and the kind of bodily motion and emphasis that he could no longer afford to give. As a lawyer in the courtroom he needed to express himself thoroughly (that was his style). As sufferer of Trigeminal Neuralgia, he was unable to!
So as he walks closer to his 3rd surgery, Alfred is nervous but somewhat optimistic that one day there will be a cure for TN.
As he moves through the door, he knows that he must keep hope alive and he outstretches his hand in preparation for a handshake. And as if it was an afterthought, Alfred defies the excruciating pain he is feeling on the right side of his face in order to force his lips to move ever so slightly. You see, Alfred wanted to smile while greeting the neurosurgeon that was about to open his brain and operate on the base of it for the 3rd time in the last six years!
*(The World Health Organization (WHO) does not recognize Trigeminal Neuralgia because it is often misdiagnosed and so rare. As a result, it gets no funding, little publicity and not enough research is done to make sure sufferers get an accurate diagnosis, health professionals are properly informed and trained and a lasting cure is found.
October 7th has been marked as the International Trigeminal Neuralgia Day.
*To contribute in the battle against this chronic illness, one does not have to know someone who suffers from it and one does not have to give money. By learning about TN, telling others about the condition, displaying the TN ribbon on social media pages or buying a TN ribbon online, one is contributing immensely.
There is also an online petition that can be signed, where over 10,000 signatures are needed for WHO to recognize Trigeminal Neuralgia and add it to its Health-Topic-List here.
You can view examples of the effect of Trigeminal Neuralgia attack on some sufferers in the following YouTube videos:
Written By Hannatu Musawa.
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