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Message from Aneeta Prem CEO

Trigeminal Neuralgia (TN) is the most painful condition known for any human being to endure.

The fifth cranial nerve, (the trigeminal nerve) supplies sensation to the face, and when it is damaged or loses control it fires pain to the face unmercifully. This pain sends recurrent electric shock-like (paroxysmal) pains along one or more branches of the trigeminal nerve (the maxillary, mandibular, and/or ophthalmic branches), each supplying a different portion of the face.

There is no cure for TN, however I know that some people are mercifully in remission and we pray for them that the pain does not return.

For those newly diagnosed, and all those who are fighting this horrendous pain every day of their lives, we wish to highlight to you that the 7th October is now recognised as the National Trigeminal Neuralgia Day.

This is incredibly important for us, because it’s our opportunity to raise awareness so that others can understand that those living with TN, suffer the most horrendous and worst pain in the world. Normally, this pain is suffered in silence and hidden away. We lose our ability to function, to enjoy life and a walk in the fresh air can rarely happen. Our lives are stolen from us. This is not called the suicide disease for nothing.

Friends, family, employers and colleagues need to understand that for someone living with TN then there must be additional care, empathy and adjustments need to be made available for that person to cope with every day simple things in life. They must understand that everyday tasks like talking, smiling, being in a room where there is air-conditioning and not being able to walk outside or just grab a coffee are removed from them.

Therefore the 7th of October is a hugely important day because it gives sufferers an opportunity to talk about their pain and for those who are fortunate to not suffer, to understand that this a hidden disability and needs to be treated with adjustment, care and love. They need to have an understanding of the importance for quiet, and offer support to a sufferer in an  empathetic and thoughtful manner.

Many sufferers of TN have found medication has helped with their pain, others report that ‘the side effects are catastrophic’. Some sufferers try dozens many different medications throughout their lifetime but with very little success and often say that they are left in a worse condition than when they originally started.

There are surgical procedures available with a limited success rate. Some sufferers are able to undergo extensive Micro Vascular surgery (MVD) which can result in pain free remission but unfortunately not for all. We sadly know surgery is not an option for everyone, and despite many successes there are many people with TN who are still living with life changing pain.

To those of you who are lucky enough not to live with TN, please be grateful that you do not have to endure this hideous and debilitating pain.