Living with Trigeminal Neuralgia: Chantelle’s Story

On Friday 26^th October, ENS will be holding a day of fundraising to raise money and awareness for the TNA (Trigeminal Neuralgia Association). This is a cause that’s close to our hearts in the ENS offices as one of our staff, Chantelle, has the condition.

TN is defined as a chronic pain disorder in which one side of someone’s face will experience periodic shooting pains that last from a few seconds to a few minutes. This can happen hundreds of times throughout the day, without warning, and can cause a serious toll on an individual’s mental health.  

Chantelle's Story

In February 2017, Chantelle began her day as normal, arriving to work as she normally does on a weekday, however as the day continued, she began experiencing pains on the side of her face. The pain worsened for Chantelle, despite taking pain killers, to the point where it was too much to handle. It was at this point one of her colleagues took her to A&E where it was suggested she may have TN.

Chantelle received an emergency referral to her GP the same day, where she was officially diagnosed with TN. While waiting for an appointment with the neurologist she was given a low dosage of Nerve Block Tablets; this didn’t help as the condition worsened to the point where Chantelle was receiving between 30 – 40 attacks every day. The attacks prevented Chantelle from living her life, as socialising, working and eating food became nearly impossible.

Chantelle received a brain scan with the neurologist soon after her diagnosis, where the root cause of Chantelle’s pain was discovered; the trigeminal nerve in her brain was being squeezed by 2 arteries. Over the next year Chantelle was put on a number of treatment plans including medicine, nerve blockers, and botox, however during this time Chantelle’s condition was worsening.

Eventually, after months of ineffective treatment, Chantelle was referred to the Royal London Hospital to meet with a TN specialist to discuss surgery. During this time the only course of action was to issue Chantelle strong medicine to try to alleviate some of the pain. The medicine failed to work and Chantelle would routinely end up in A&E asking for more medicine to reduce the pain.

Upon meeting with specialists, Chantelle opted to undergo Microvascular decompression (MVD), a process which would aim to free up space around the nerve causing her pain, stopping the nerve from being squeezed. Although Chantelle was very nervous, there was no alternative, as the amount of drugs that she had been prescribed was likely to harm her if she continued to take them, and living with the pain was no option.

On 5^th June 2018, over 1 year on from her initial diagnosis, Chantelle went in for surgery, and after 4 hours, came out with a significantly improved condition. Although it isn’t a full cure, Chantelle deems the surgery a success because she now takes a fraction of the medicine she used to, and days with hundreds of painful attacks are now a distant memory, allowing her the opportunity to live her life as normal.

Here’s what Chantelle had to say on TN: “Trigeminal Neuralgia can affect anyone at any age and sadly the amount of people that take their life due to the condition is on the rise. With the money raised today it can be invested in research to support others like me.”

Donate to Trigeminal Neuralgia Association to make a difference to the lives of people like Chantelle today.