No, it’s not a mental illness. Nor is it called that these days, although us TN Warriors love how accurately it describes Trigeminal Neuralgia (you can see why it needed a nickname). Trigeminal Neuralgia (TN) is a progressive, chronic pain condition that affects the largest cranial nerve. The neuropathic disorder manifests in paroxysmal bouts of stabbing, burning or shock-like facial pain, ranging from a few seconds to two minutes per episode. These attacks can occur in quick succession, in volleys, lasting for several hours. The intensity of pain is physically and mentally incapacitating.
Living with TN is excruciating. There is very little activity you can do without the use of the bilateral trigeminal nerve in your face. It connects the brain to your face and enables sensory, motor, and parasympathetic functions. This means that you use it when you wake up and rub your eyes; when you brush your teeth and scratch your face. You use it to eat, to feel the wind in your face, to kiss your loved ones, to laugh and to cry. You use it in the tiniest modes of facial expression and it’s sensitive enough to detect even the slightest motion. Tri-geminal Neuralgia occurs when the nerve sustains damage, causing it to misinterpret regular stimuli as pain. If you paid attention in science class, you’ll remember that nerves carry mes-sages in the form of charged molecules or what we familiarly know as electric current. As a result, when you have TN, speaking or chewing is like tasing yourself in the face repeatedly. Have you ever gravely wounded yourself or felt an electric shock? Imagine that happening to your face throughout the day, every time you use the said nerve. I will not attempt to describe the spectrum of pain because, to be honest, there’s no way to do that without making it a 128 Hours sort of scenario. But I will tell you that it is unanimously acknowledged as one of the most painful conditions in medical history, right up there alongside pain associated with can-cer and physical trauma. Any expression of the agony simply exacerbates the pains so most of us suffer silently, not to be brave but because expressing the agony is literally torturing ourselves further. TN’s invisibility makes it almost impossible for people to understand the extent of suffering one goes through on a daily basis. It is easy to identify extreme pain with a bleeding wound, much less to link it to an impassive face with no visible sign of trauma.
In the summer of 2006, I felt an intense electric shock in my left eye when I took a bite of lunch one day. Three years, four eye specialists, a dozen other doctors and a battery of un-comfortable medical investigations later, I was finally diagnosed with Trigeminal Neuralgia. That is actually considered fairly quick as its rarity, lack of diagnostic evidence, and percep-tion of symptoms makes TN difficult to identify. The most common cause is compression of the nerve from a blood vessel or artery. A recent brain surgery revealed the reason for mine
was that too - three fat arteries and a vein had coiled themselves tightly around my left trige-minal nerve, injuring it severely. The operation was only partially successful, i.e. the intensity decreased but I still need medication, although a lower dose, for the pain to be tolerable. However, I wholeheartedly recommend it because, with no real cure as of yet, Microvascular Decompression surgery is currently the most effective treatment for TN. Of course the pros-pect of an invasive brain surgery is terrifying; it comes with serious risks and an unbelievable amount of post-op pain. Though a gamble, having been through it I say it’s worth a shot for the chance of even a slight decrease of pain and meds.
At the developing age of 19 I was handed a fistful of pills and told that I’ll have to take them for the rest of my life. The label had warned me: DO NOT DRIVE OR OPERATE HEAVY MACHINERY. MAY CAUSE DIZZINESS/DROWSINESS. After a decade on these medications in increasing doses, I’d say that is a gross understatement. They affect my body's cognitive functions and ability to absorb nutrients; they suppress blood flow and alter the chemistry of my precious brain. I did not fathom the toll these side effects could take on my body and they hit me like a barrage of bullets. Whether it be in the form of pain or side effects such as brain fog and ataxia, chronic pain conditions severely impact the quality of life. It’s important to educate yourself about your illness and the medications you take; to un-derstand their effect on your body.
As my body continues to age, I know that the path ahead of me will be difficult. I won't lie, I feel bitter sometimes (ok, a lot), but I’ve come to terms with this life in chains, fleshing it out by practising, within my limited abilities, what I value, cherish and admire. An example of that is this article itself - if I can use this experience to help and support others like me, then it gives my suffering some purpose. The takeaway? When you make lemonade from those particularly sour lemons life gave you, realizing a way to add some sugar to it can make for a pretty decent drink.
7th October is Trigeminal Neuralgia Awareness Day. If you, or a loved one suffer/s from Trigeminal Neuralgia or any other type of chronic pain, please feel free to reach out to me @TNWarriorsBD.facebook
