IN A BID to increase awareness of a rare disease called trigeminal neuralgia (TN), famous buildings and structures across the globe are set to light up in teal-coloured lights today to mark Trigeminal Neuralgia Awareness Day.
In Ireland, over 30 buildings including the National Concert Hall and Christ Church Cathedral will go teal, while experts, clinicians and people living with the condition will gather in Trinity College Dublin to discuss TN.
TN is an unusual, intensely painful chronic neurological disorder which causes extreme, sporadic, sudden burning or shock-like face pain.
It is estimated to affect 1 in 20,000 people, but is often misdiagnosed as a migraine, toothache or a joint condition as there is a lack of awareness surrounding the condition.
Estimates suggest 700-1,000 people in Ireland are living with what is one of the most painful conditions known to science.
Event organiser Carol Murray, who is a researcher at TCD and has the condition, tells us about her experience.
’24 tablets and 3 injections a day’
Carol has had TN since she was 14 years old. She describes the pain as if someone was running a kitchen knife dipped in ice down your face – from eye to jaw.
She said these can last about 5 to 10 seconds, but you could get 50 or 60 of these pains in the space of an hour, and it could stop or go on for a day, or for a few months.
Carol tells us of her worst experiences:
Once I was hospitalised for two months because of the pain – I lost the ability to walk for a while. The condition also makes your heart and stomach very weak so I was constantly vomiting as well.
There’s no known cure for the disease, as the cause of it is still to be discovered, although links have been made between it and Multiple Sclerosis (MS).
Everyone has a different reaction to the pain medication. For some it impairs their memory, for others it might make the shooting pains less frequent or less severe. I’m lucky because I was on 24 tablets and three injections a day at one stage , and now I’m on one drug that has worked really well for me. My last ‘episode’ was in May of this year.
Different types of pain
Mypainfeelslike… is a new national campaign that aims to raise awareness of pain and support patients when communicating with doctors and nurses. The questionnaire helps people with localised nerve pain, like TN, describe their pain (eg ‘shooting pain’ or ‘electric shocks’) when speaking to their doctor so as to improve diagnoses.
Carol added: “Trigeminal neuralgia is a debilitating condition to the point that everyday actions that most people don’t think twice about doing, such as talking, smiling, eating, or even just brushing their hair, can trigger excruciating pain for people living with it. This doesn’t just impact on patients, but also on their families and loved ones.”
The Trinity Biomedical Sciences Institute will open its doors from 6pm – 9.30 pm for the Trigeminal Neuralgia Awareness Symposium, which is hosted by the Neuroscience Society and is open to the public, patients, carers, and healthcare professionals.