Today is Trigeminal neuralgia awareness day

Today is international Trigeminal neuralgia awareness day. Trigeminal neuralgia is a disease described by doctors as the worst pain known to man, and can also be sometimes known as the ‘suicide disease’.

Trigeminal neuralgia is described by Intl Trigeminal Neuralgia and Me as:

Much like the insulation around an electrical wire, the myelin sheath around the trigeminal nerve enables electrical impulses to be conducted along the nerve fiber accurately. When the myelin sheath is damaged it’s like live wires touching each other and the correct information to the brain is not being sent.

A simple breeze, shaving, brushing your teeth and many other sensations can be received by the brain as excruciating pain in the form of shocks and stabbing pain in one or more areas of the face.
 If you’ve ever had a severe toothache, been punched in the nose, poked in the eye, had a migraine or a sinus infection, then you have experienced a small portion of the pain that the trigeminal nerve is capable of sending to the brain.

Just imagine all that at the same time — to the extreme — and add in your face being hooked up to a car battery at the same time. Yes, there is a reason why Trigeminal Neuralgia is often called the world’s worst pain. It hurts like nothing you’ve ever felt in your life.

My own experience with trigeminal neuralgia comes from my stepfather. I’ve known him all my life, one of my earliest memories being of him, and for all that time he’s been a man that is stoic, never shows emotion. A manly man if I ever saw one.

On Christmas day last year he started complaining that his tooth felt sore. Over the course of the day, it got worse, to the point he wouldn’t eat anything, lying on the couch, the pain numbed by panadol.

Soon, anything was painful, and suddenly this big stoic man was reduced to a lump on the couch, clutching at his face in pain.

My mum did her own research, and the doctor confirmed his findings, it was trigeminal neuralgia, the ‘suicide disease’. There are treatments that can help relieve the pain, and many medications, including medicinal pot.

My stepdad, thanks to medication, can now return to work and doing what he as doing beforehand. But the medication can cause severe damage to his liver, and every six months he needs liver function tests.

As I’m writing this, there is no known ‘cure’ for the disease, and the World Health Organization doesn’t even recognise it as one of their top diseases, despite the damage it can cause on a person’s life and the people around them.

The average age to get trigeminal neuralgia is 50, but people can develop it as young as 3. My dad was 39.

Trigeminal neuralgia and WHO needs to recognise this so we can get effective cures, not treatments, cures, for the disease. I encourage, no, I beg you, to please sign Trigenminal Neuralgia and me International’s petition. We to bring the disease to light to WHO and put it on their Health Topic List, so more experts can be trained on how to deal with trigeminal neuralgia.

Originally published on Valiant Ghost

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