A BUILDING in Waterford (yet to be confirmed) will be one of hundreds around the world that will be lit up on the night of 7th October to raise awareness of Trigeminal Neuralgia, a rare, chronic pain condition affecting the face that makes it excruciatingly painful to chew, brush one’s teeth, talk – or even be kissed.
A number of people in Waterford suffer from this condition affecting the trigeminal nerve, which is the main sensory nerve of the face. Even mild stimulation of their face — such as brushing teeth or putting on makeup — can trigger a jolt of excruciating pain. A cold breeze blowing on the face can be enough to initiate an attack. As the illness progresses, sufferers experience longer, more frequent bouts of searing pain in the face.
As the illness is not recognised by the WHO, there is very little research into causes and potential cures. The Waterford branch of the Irish support group is working to change that, as well as increase awareness around the plight of those living with Trigeminal Neuralgia.
Life is a constant battle, trying to find a balance with pain medication, according to TN sufferer Bríd Mallon from Ferrybank, who first became symptomatic 15 years ago. “Chewing is especially painful. Eating my breakfast this morning took so long, each bite was another jolt of pain.”
As with many sufferers, Bríd first noticed pain when she was brushing her teeth. “I initially thought I had a pain in my tooth. I went to the dentist and he told me there was nothing wrong but the pain was getting worse so I went to another dentist, who referred me to a doctor. I was put on medication which worked for a couple of months but then the pain came back even worse. That’s the way it was for many years, I’d have awful pain, we’d get the balance right with medication but then a few months later it would be back. I was only in my 40s, I had four young children at home… it was such a difficult time. We also have our own business and I would have been trying to do the books for my husband, we run a wholesale meat distribution business.”
As Bríd’s pain intensified over the years, she was referred to several pain specialists seeking relief but, she says, the side effects of the anti-convulsive medication used to treat TN can be a huge burden in themselves. “I’ve had a number of surgical procedures over the years, one side of my face is permanently numb from the first procedure. The amount of medication I need would have increased all the time and that has resulted in a lot of memory loss. The high dose would leave me feeling very tired.
“Some days the pain is so bad that a gust of wind in the face can be agonizing, sending shock waves through my eye. I have five grandchildren and they all know you can’t kiss Nanny on one side of my face. My little granddaughter is always asking can she kiss it better for me. The pain tends to get worse during bad weather, for some reason. You don’t ever get a day off from it.”
Fellow Trigeminal Neuralgia sufferer Alma Browne from Waterford said this debilitating and painful condition can just come out of nowhere and for no reason or as a result of an injury to the face, head or jaw. Dental procedures are also a known cause and Alma said that her Trigeminal Neuralgia was caused by the extraction of a wisdom tooth in 2002. She went on to say that since then she has had no pain free day whatsoever. Alma has exhausted all the avenues of facial pain specialists and medications down through the years, all to no avail and is still in constant pain and as a result her quality of life has been severely limited and every day is a struggle.
She also hopes that raising awareness of this cruel disease will make people understand more about how adversely lives can be affected by this as yet incurable condition.
About seven years ago Avril Hitchens, a 35-year-old mother from Waterford began to experience what she thought were sinus problems. She had many investigations done but no medical person could pin point the cause of her symptoms. Avril was forced to take long leave from her childcare job, which, of course placed a financial burden on the family. In June 2010 she finally had an MRI scan. The scan indicated that a blood vessel was pressing on the trigeminal nerve deep inside her head. On February 15th 2011, Avril underwent a procedure called microvascular decompression (MVD) to relieve the pressure on the trigeminal nerve. Following her discharge, she was far from well. “Every single movement was agony,” she says. “I could hardly put one foot in front of the other.” To this day Avril still suffers from constant pain and can fully understand why it is called the “Suicide Disease”.
Avril says her condition causes all sorts of other problems. Her constant need for bed rest and solitude puts pressure on her family but she was delighted to finally find out about other people both in Waterford and the rest of the country that suffer from this disease through the TN Ireland Support Group’s Facebook page.
Trigeminal neuralgia affects four or five people out of every 100,000 and women more often than men. It’s more likely to occur in people who are older than 50. Doctors say the severe pain associated with Trigeminal Neuralgia – or even the fear of the pain – can have a very severe impact on the everyday life of a sufferer, sometimes making it virtually impossible for them to perform the most basic daily chores.
The World Awareness Day for TN takes place on 7th October. For further information on the condition, visit the TN Ireland Support Group’s Facebook page or email firstname.lastname@example.org.