Living with extreme pain

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 down to the face, while that same part of the face is being stabbed repeatedly with a sharp object and, at the same time, a razor-blade is being scraped down it, leaving it raw and bleeding.

When the sharp, stabbing and shock-like pain starts, there is no relief, for seconds, minutes, hours, 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. That is the excruciatingly painful reality of those living with TN.

TN is a very uncommon disorder, which causes facial pain that is associated with the trigeminal nerve. The trigeminal nerve sensitively 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 compression with the potential to wear away the protective coating around the nerve. TN symptoms can also occur in people with Multiple Sclerosis (MS) 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 suffered by TN patients has been described, by medical experts as, one of the most excruciating agonies a person may ever experience in life. The disorder is known to be one of the most painful conditions known to mankind. TN is often referred to as, the ‘Suicide-Disease’ because the pain experienced by sufferers is so spasmodic, paralyzing and intense that it has been known to drive many people to suicide. Rather than continue living with a condition so paralyzing, unbearable and excruciatingly painful, some have opted to take their own lives instead.

A Clip of a typical painful episode of a TN Sufferer

When TN strikes, even the slightest touch to the face, whether it’s a light breeze or wind, hair falling onto the temple, simply brushing the teeth, subtle head movements, talking, eating or even a loud noise may trigger flashes of acute pain. Sometimes, sufferers may unexpectedly and randomly be heard shrieking in agony. Often when sufferers cry from the pain, tears just drip down because they are unable to squint, scrunch or move their face. When TN attacks occur, there is no relief from the pain.

The pain suffered as a result of TN is the type of pain that, those who don’t experience it, cannot understand. Unless one experiences the pain, it would be difficult for them to understand or believe how extreme it can be. It is a harsh, unforgiving, cruel and relentless condition takes over a life to the extent where it is difficult to find any joy in life when the attacks occur.

The triggers of TN pain 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 a TN 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 a period of remission 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 an acute toothache. And in a large percentage of those cases, patients have had their teeth removed by dentists, in order to ease the pain, which is perceived to be caused by an abnormality in dentition. In instances where teeth are mistakenly removed, the pain caused by TN gets presumably worse.

Part of the challenge faced by both sufferers of TN and the medical practitioners trying to understand and manage it 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, due to overlapping symptom diagnosis and the large number of conditions, which can cause facial pain, obtaining a correct diagnosis is generally 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 try in order to manage the condition and there is the possibility that the condition can go 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 stop 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 (MD), a form of brain surgery. 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 Microvascular Decompression, it includes a method where the nerve fibers are destroyed to block pain. This causes some degree of permanent sensory loss, facial paralysis and facial numbness sometimes causing the side-effect of hearing loss, balance problems, extreme vertigo, mouth ulcers, chronic skin infection, and even 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. Knowing that even Invasive Surgery may not provide a lasting solution for TN discourages many sufferers from adopting surgery as an option.

A clip of a Sufferer of TN who has battled the condition for 20 years and has tried all the options available to her, yet to no avail. Her pain continues

There are also assortments of drug treatment available to minimize the pain of the disorder, of which Carbamazepine is the most effective. But Carbamazepine can have 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 given 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 many lives. They did so by marking October 7, 2013, as the first International Trigeminal Neuralgia Awareness Day. Thu, today, is International Trigeminal Neuralgia day; a day that dozens of buildings and structures across the world will be lit up with the color #Teal to spread awareness. It is a day that is hoped will be used as a starting point for TN suffers to get recognition. Since the movement to spread awareness of TN began, an online petition has been submitted to the World Health Organization (WHO) asking for Trigeminal Neuralgia 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.

A Clip of How a Typical TN Suferer may be forced to talk and communicate during a prolonged TN attack.

It is important for facts about a very serious and painful condition such as Trigeminal Neuralgia 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, paralyzing, agonizing and unbearable 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 a very ferocious, vicious and cruel 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 soon. Because going through life with the World’s most excruciating pain is not living; it is not a life! Nothing can be worse than living a lifetime of unimaginable pain where one is consistently driven to their knees. Unfortunately, that is the painful reality of those who live with the extreme pain of Trigeminal Neuralgia; the enemy within.

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