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. 

9 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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  4. Hello
    I developed TN after extensive dental work and a long tortuous root canal filling in 2011. Immediately afterwards I refused to take medication, but after a short period realised I had to start taking the Tegretol. I was on Tegretol for about 5 years, but last December/January it became necessary to increase the dosage. Before my doctor changed me to Pregabalin and Trileptal The dosage had increased considerably. In changing over I spent a dreadful 2 weeks, eventually giving up on Pregabalin and increasing Trileptal to 450mg twice/day. However, only after 1 month or so I began finding it necessary to increase the dosage - which was quite worrying. I increased it to between 1200 and 1350 a day. On one occasion 1500!! Pretty disastrous.
    Now I don't know if this overkill wirjed to launch me into remission, or was it a visit I paid to an Ayurvedic hospital in Kerala, India. Rte doctor there took 1 look at my face and said that my cheek was swollen, and a paste was prescribed. After a couple of days the swelling was gone and I reduced the med dramatically. I got withdrawal symptoms so started 600/day- after a week to 450/day, then 300, 150, finally stopping 3 weeks ago. (June 2017)
    I am convinced this treatment of the swelling, that had not been noticed by doctors, dentists, neurologists, specialists etc, had a major impact on the pain. Time will tell as the TN may well return. But, in the meantime I am celebrating, and I would suggest everyone with TN as a result of dental work or ear infection should look into it.

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  5. Just got diagnosed today. My doctor thinks it's only temporary. Can it be temporary. Had it Fri and Saturday night. Never experienced pain like it. Very concerned.

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  6. I've been directed to your page as I have glossosonpharangeal pain this concerns the 9 and 10th cranial nerve. This causes me great pain who
    I try and talk, also my throat is in burning steering pain all day , none of the meds work, I had to give the job i love and it's almost impossible to meet friends, I'm lucky I can swallow as some people can't. This is so rare I was wondering if anyone would like to contact me, I have had two unsucessful nerve blocks and am waiting tonsee if the vhi will approve gamma knife radiation. I have this 24/7 for the past two years , i was a happ gomlucky 55 year old woman in their 50's but felt about 40 till this happened, mine is A typical so its not the usual case but both the neurologist and neurosurgeon feel its definitely connected, if you're someone who has this very rare disease and would like some support please email me at coleman2gg@gmail.com

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  7. I am new to trimignal neuralgia about 6 months and I'm in bits I can't get it to settle and it's driving me in sane. I'm on high dose of lyrica which works great but I keep needing increase so started on a new medication today and I'm finding the side effects nasty. If anyone has anything alternative or anything at all that helped them I'd be so grateful of help please. You can email me on Joanneslough@hotmail.co.uk. Many thanks Jo

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    Replies
    1. I will keep sharing to the world the good work Dr folonsho has done for
      me. I have been suffering from trigeminal neuralgia for the past 10
      years now. If not for his herbal cure I wouldn't have been well. If you
      are also suffering from this suicidal disease. Then you should contact
      him also. Email drfolonsho@gmail. Com or via what's app
      +2349027505789
      Let's all share this good news you can also contact him for cure to any type of chronic pain

      Delete
  8. I will keep sharing to the world the good work Dr folonsho has done for
    me. I have been suffering from trigeminal neuralgia for the past 10
    years now. If not for his herbal cure I wouldn't have been well. If you
    are also suffering from this suicidal disease. Then you should contact
    him also. Email drfolonsho@gmail. Com or via what's app
    +2349027505789
    Let's all share this good news you can also contact him for cure to any type of chronic pain

    ReplyDelete