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. 

17 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

    ReplyDelete
    Replies
    1. ALL THANKS TO DR WILLIAMS
      I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

      Delete
    2. I was depressed when doctor told me that I have been diagnosed with Herpes disease… I thought about my Family, I know my Family will face a serious problem when I'm gone, I lost hope and I wept all day, but one day I was searching the internet I found Dr.ezomo contact number. +2349069171173 I called him and he guided me. I asked him for solutions and he started the remedies for my health. Thank God, now everything is fine, I'm cured by Dr.ezomo herbal medicine, I'm very thankful to Dr.ezomo and very happy with my hubby and family. email him on dr.ezomorootandherbals@gmail.com or you can also reach him through WhatsApp number+2349069171173
      He can also cure so many sickness
      {1}HIV And AIDS
      {2}Diabetes
      {3}Epilepsy
      {4}Blood Cancer
      {5}HPV
      {7}ALS
      {8}Hepatitis

      Delete
  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.

    ReplyDelete
  3. Thank you for this post, We guarantee to resolve the email errors instantly and ensure users receive quick assistance via Contact Gmail Email Support Ireland +353-12544725 Call at Gmail Support Ireland Customer Care Number +353-12544725

    ReplyDelete
  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.

    ReplyDelete
  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.

    ReplyDelete
  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

    ReplyDelete
  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

    ReplyDelete
    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
  9. I was diagnosed of herpes virus in 2015, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor called Chief Dr Lucky, who prepare herbal medicine to cure all kind of diseases including herpes virus (Herpes), when i contacted this herbal doctor via his email, he sent me herpes virus herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed i was totally cured from the virus within 3 weeks of usage. Contact this great herbal doctor today to get your cure.
    Via Email : chiefdrlucky@gmail.com
    Whats App : +2348132777335
    website : http://chiefdrluckysolutionhome.website2.me/

    ReplyDelete
  10. Hello Everyone out there,I am here to give my testimony about a Herbalist doctor who helped me . I was infected with HERPES SIMPLEX VIRUS in 2011, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES SIMPLEX VIRUS and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES SIMPLEX VIRUS that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him at {oliha.miraclemedicine@gmail.com}
    or whatsapp him number: +2349038382931.

    Contact him today and you will have a testimony...Good luck!

    Dr. OLIHA Also Cures:
    1. HIV/AIDS
    2. HERPES 1/2
    3. CANCER
    4. ALS (Lou Gehrig’s disease)
    5. Hepatitis B
    6. chronic pancreatic
    7. Emphysema
    8. COPD (Chronic Obstructive Pulmonary Disease

    ReplyDelete
  11. ALL THANKS TO DR WILLIAMS
    I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

    ReplyDelete
  12. Greetings to every one that is reading this testimony. I was HERPES positive for 5years and all the means i tried for treatment was not helpful to me, but when i came on the Internet i saw great testimony about DR omohan on how he was able to cure someone from HERPES, and any disease this person said great things about this man, and advice we contact him forany problem that DR omohan can be of help, well i decided to give him a try, he requested for my information which i sent to him, and he told me he was going to prepare for me a healing portion, which he wanted me to take for days, and after which i should go back to the hospital for check up, well after taking all the treatment sent to me by DR omohan i went back to the Hospital for check up, and now i have been confirmed HERPES Negative, friends you can reach DR omohan on any treatment for any Disease, reach him on Email (dromohanherbalmedicine@gmail.com) whatsapp number (+2348164816038)

    ReplyDelete
  13. I am Sophie from Canada, I once suffered from a terrible and chronic neuralgia ,since 30years now , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs kate on how her husband was been cured from neuralgia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help

    ReplyDelete
  14. I was depressed when doctor told me that I have been diagnosed with Herpes disease… I thought about my Family, I know my Family will face a serious problem when I'm gone, I lost hope and I wept all day, but one day I was searching the internet I found Dr.ezomo contact number. +2349069171173 I called him and he guided me. I asked him for solutions and he started the remedies for my health. Thank God, now everything is fine, I'm cured by Dr.ezomo herbal medicine, I'm very thankful to Dr.ezomo and very happy with my hubby and family. email him on dr.ezomorootandherbals@gmail.com or you can also reach him through WhatsApp number+2349069171173
    He can also cure so many sickness
    {1}HIV And AIDS
    {2}Diabetes
    {3}Epilepsy
    {4}Blood Cancer
    {5}HPV
    {7}ALS
    {8}Hepatitis

    ReplyDelete