About Us

We formed in 2001 as a small group of fellow suffers. Our first meeting was in the Spa Hotel in Lucan. Since then we have shifted venue a number of times and now meet up in the Maldron Hotel in Tallaght.
We see our role as a support for all those diagnosed with TN and with limited funds try to raise awareness.

Trigeminal Neuralgia Ireland Support Group

This is a story from one of our members.

"I got Trigeminal Neuralgia July 2013,
It started as an electrical shock pain in my jaw. The pain was like cold ice cream on a sensitive filling, except  no filling in that part of my jaw. After a couple of days I was certain that every tooth in the left/right hand side of my upper/lower jaw was rotten. The pain also lead up to my ear, which isn't uncommon with dental issues. 
I went to the dentist who found nothing, my teeth and gums were perfect in his opinion. Despite his findings, he prescribed me some anti-biotics.
One week and a doctor on call visit later, i went to my GP. Within minutes, he diagnosed me as having Trigeminal Neuralgia."

  • This story is not uncommon. Often referred to as suicide pain or tic douloureux, TN afflicts 4.3 per 100,000 individuals (per year) and is often referred as the worst pain known to mankind.
  • The road to diagnosis can sometimes be bumpy. Lot's of GP's and dentists may not be very familiar with TN, and it could take a long time and many Neurology referrals for a firm diagnosis to be made. 
  • Sometimes an issue with the Trigeminal Nerve can be seen on an MRI scan, but most of the time nothing shows up. 
  • There is no test for TN, just doctors' expertise and tests that rule everything else out.
Medications are prescribed to alleviate symptoms and manage pain. 
These include:
carbamazepine, baclofenlamotrigineoxcarbazepinephenytoingabapentinpregabalin

There are surgeries and procedures that can be carried out:
  • Microvascular Decompression (MVD)
  • Gamma Knife Radiosurgery
  • Nerve Blocks
Living with Trigeminal Neuralgia is not easy, and often many things in your life will change. It is the little things that matter, for example: I cannot go out on a cold, windy day. Even if there is a slight breeze, the pain it can cause is excruciating. Certain foods are hard to eat with TN pain. I cannot remember the last time that I ate an apple. The medications that we get prescribed can also have a negative effect. Weight gain, memory loss, drowsiness and dizziness are to name a few. 

Despite all of this, it is important not to lose hope. There are new studies being conducted all the time, new drug trials and hopefully all of this will lead to a cure. The specialists in this field are absolutely amazing, and they really try their best to try and beat this pain. 

Above all, we are a group of people who suffer from this condition. We aim to support each other, provide awareness and we strive to do the best we can to make people understand what TN is. We hold meetings every couple of months where we have an open forum or invite guest speakers to take part. Our next meeting is in the Maldron Hotel, Tallaght, Dublin 24 on September 6th at 2.30pm. 

3 comments:

  1. Hi i havw just looked up to see did a group extist in ireland thank god i see it does ..in the middle of flare uo at the minunit ..will look again to keep posted ciara x

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  2. Great to see there is an Irish group where information can be got. I've found a British group on Facebook and thank God I found them as I almost lost my sanity with this pain. Will be nice to know of meet ups and information get together.

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