Hello everyone,

TW: images of surgery scars and one mention of suicide.  

Trigeminal Neuralgia (TN) is an incredibly painful - and often debilitating - disease which affects the trigeminal nerve between the face and the brain.  It is often described as 'the worst pain known to mankind'. (TNA UK, 2018). My most excellent friend Melissa experiences this debilitating pain on a daily basis. 

Melissa developed TN just under three years ago, and I am running the Hackney Half Marathon on Sunday 26th September to raise funds for Trigeminal Neuralgia Association UK. This charity that does vital work to raise awareness of this condition and to continue to offer support to people recently diagnosed with this disease. This service was helpful and reassuring to Melissa when she first received her diagnosis. The officers of the charity (many of whom are themselves sufferers of the condition) give their time voluntarily. The charity receives no Government or corporate funding but relies mostly on donations. 

Trigeminal Neuralgia’s symptoms include episodes of severe, shooting or jabbing pain that may feel like an electric shock, episodes of several attacks lasting days, weeks, months or longer. Many experience incessant burning, searing pain (TN type 2) or, like in Melissa's case, a combination of both. No medication touches this pain. It’s even, sadly, come to be known as ‘The Suicide Disease’ due to the unbearable pain it causes. If you’d like to find out more, Amanda Young (a 39-year-old fitness instructor in Brooklyn living with Trigeminal Neuralgia) describes what it is like to live with TN in this short film from MSNBC: Living With The World's Most Painful Disease. (hyperlink in the title).

Travis Barker (best known as the drummer in Blink 182) and Gloria Steinem (feminist journalist and activist) also have TN. In an article for Mother Jones, Gloria Steinem explains her experience with TN:
              “Painkillers don’t work on it. And because of the costs of searching out different specialists, it was very clear to me that if I hadn’t had the resources and insurance both, I would probably have done what most poor people with this disease do, which is end up having all of their teeth out and then discovering it’s not their teeth. So it certainly is a sobering disease in every way–cost, knowledge of the health care system, and so on. In my case, it had another meaning, because I couldn’t speak, I couldn’t walk. The only thing I could do was stay home and write and read.”

Melissa has spoken eloquently and openly about her experiences with TN, including on the BeautyMe podcast with Cherisse Kenion, so please do give her episode a listen here to find out why this is such an important and special cause. 

At the moment, there is no cure for the disease. Some treatments such as brain surgery and other percutaneous procedures can be undertaken, but they have limited effectiveness as a permanent cure. One such operation is microvascular decompression surgery (MVD), which involves opening the skull and exposing the nerve at the base of the brainstem. A tiny sponge is inserted between the compressing vessel and the nerve. This sponge isolates the nerve from the pulsating effect and pressure of the blood vessel. Melissa underwent MVD surgery in August 2019. Many TN sufferers get relief from this, but this was not the case with Melissa. Trigeminal Neuralgia Association UK is working to raise awareness and fund further research into finding a cure for this excruciating disease.