Neuralgia and Facial Pain Disorders Ireland resources
Trigeminal Neuralgia Ireland
Trigeminal Neuralgia Ireland
About Trigeminal Neuralgia Support Group Ireland.
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 Glashaus Hotel in Tallaght, Dublin 24.
We see our role as a support for all those diagnosed with TN and with limited funds try to raise awareness throughout Ireland. 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 for 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 leads 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. 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.
Lots 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, baclofen, lamotrigine, oxcarbazepine, phenytoin, gabapentin, pregabalin
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.
As part of our awareness campaign, we aim to find and help every person suffering in silence in Ireland.
Our email address is: ireland.tn@gmail.com
Find us on Facebook: Trigeminal Neuralgia Support Group Ireland
Other resources:
> Chronic Pain Ireland
Chronic Pain Ireland is a charity that is committed to create awareness of all chronic pain, and to support those affected and their families. Chronic Pain Ireland often hold seminars and workshops
> The Migraine Association of Ireland
The Migraine Association of Ireland is a registered charity that provides help and information for those with Migraine and headache disorders.
> Jaw Pain Ireland
Jaw Pain Ireland is a website dedicated to the management of Orofacial and Temporomandibular (TMJ) Joint disorders.
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 Glashaus Hotel in Tallaght, Dublin 24.
We see our role as a support for all those diagnosed with TN and with limited funds try to raise awareness throughout Ireland. 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 for 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 leads 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. 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.
Lots 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, baclofen, lamotrigine, oxcarbazepine, phenytoin, gabapentin, pregabalin
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.
As part of our awareness campaign, we aim to find and help every person suffering in silence in Ireland.
Our email address is: ireland.tn@gmail.com
Find us on Facebook: Trigeminal Neuralgia Support Group Ireland
Other resources:
> Chronic Pain Ireland
Chronic Pain Ireland is a charity that is committed to create awareness of all chronic pain, and to support those affected and their families. Chronic Pain Ireland often hold seminars and workshops
> The Migraine Association of Ireland
The Migraine Association of Ireland is a registered charity that provides help and information for those with Migraine and headache disorders.
> Jaw Pain Ireland
Jaw Pain Ireland is a website dedicated to the management of Orofacial and Temporomandibular (TMJ) Joint disorders.
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All information contained on TNNME web site is for informational purposes only and at no time should any content on TNNME be considered medical or legal advice or imply any action should be taken.. It is in no way intended to be used as a replacement for professional medical treatment. TNNME makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to and from this site. All information taken from the internet should be discussed with a medical professional!
All information contained on TNNME web site is for informational purposes only and at no time should any content on TNNME be considered medical or legal advice or imply any action should be taken.. It is in no way intended to be used as a replacement for professional medical treatment. TNNME makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to and from this site. All information taken from the internet should be discussed with a medical professional!
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