By Elizabeth Sirrell.

Trigeminal neuralgia, is an excruciatingly painful condition affecting the nerves on the face. The pain, most often on one side of the face, can be like an electric shock, like a bolt of lightning, or it can be stabbing, burning or aching. It is considered to be one of the most agonizing and debilitating conditions known to mankind, yet patients are often left untreated, misdiagnosed or given wrong advice.

I live with this horrendous condition.

But I lived with it for over twenty years before being diagnosed.

During that time, I saw several dentists and doctors. I had toothache-like pain, face pain and head pain. Sometimes it was just in the background, other times, as though a knife was wedged between my teeth, slicing through my gums or as if someone was drilling or even extracting teeth without anesthetic. I had an almost constant headache, with my head often feeling as if it were trapped in a vice.

Over the years, my pain increased, becoming more severe, more persistent and, eventually, constant. My complaints were ignored or brushed off. No reason was ever given to me for my pain. Pain medication was prescribed – but it was the wrong medication. It did nothing to help.

When I was forty four, I saw a new dentist. Thankfully, she didn’t just dismiss me. She didn’t shrug her shoulders or tell me there was nothing wrong with me. She told me the pain was from nerves in my face. The following day, a rheumatologist who I was seeing for another problem, agreed with her and she diagnosed me with trigeminal neuralgia. She also gave me hope when she told me that there was medication which could help – either anticonvulsants, tricyclic antidepressants, or both. She confirmed that normal painkillers do not help.

Since my diagnosis eight years ago, I’ve been on several medications. Some work better than others, some haven’t helped at all and they all tend to have side effects (some severe). Despite the medication, my face still often feels as though I’ve been hit by a baseball bat, or I can get stabbing, shooting pain coming from nowhere, or it burns like sunburn. On a good day, it’s a constant ache. It’s never pain free.

I’ve learned about self help, like using heat and cold, and the importance of breathing, relaxation and pain management techniques. I’ve also learned that certain things can worsen my pain. Some of those triggers are avoidable, but some are not (I do need to eat, and I do need to brush my teeth at times!) and sometimes triggers change. Nothing about trigeminal neuralgia is consistent.

Sadly, I know my case is not unique. I know of many people who have spent years in agony without being given a name for their pain. They felt like they were not believed, both by doctors and by their families. They were made to feel as though they were exaggerating or fabricating their pain. And like me, they did not get the correct medication. Getting that diagnosis is crucial in getting help, support and treatment.

But even when they do have an official diagnosis of trigeminal neuralgia, people can still encounter problems. When their pain is out of control, some people have gone to emergency where they are given normal pain medication which won’t help. Even worse, they are sometimes turned away, thought to be seeking drugs.

Trigeminal neuralgia badly needs awareness spread amongst the public, but there also needs to be more education about it within the medical community.

Six years ago, I was one of the creators of a trigeminal neuralgia awareness page and support group. Some of the admin have changed over the years. It’s now mainly run by myself and Trish Veltman. Our principle is the same as in the beginning – that we have accurate, easy to understand and free information for sufferers, to help them and their families. There is so much false, misleading information online, which does nothing to help people, but simply leaves them with fear. Living with the pain is difficult enough.

The 7th of October is Trigeminal Neuralgia awareness day, but in reality, we need awareness every day.

Elizabeth Sirrell lives near Edinburgh, Scotland and will write on Trigeminal Neuralgia more in the future.