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President’s Monthly Musings – Feb 2023 Search for Hope

This month has been a big one in our household.  Patrick’s pain on both sides of his face is back with a vengeance.  The gamma knife treatment he had back in 2021 had kept the pain at bay but now it is back.

We all know how debilitating this awful condition is, and the utter helplessness of family members who really do spend days looking for that mystical unicorn with a magic wand.  The zombie scrolling through google desperately searching for new treatments, or research, or ideas in the search for hope.

Our circumstances like many others, means we are reliant on the public health system, we took early retirement when Patrick’s condition was still undiagnosed and impacting his ability to work.   Private health costs had escalated, our superannuation fund, which we are reliant on, had been smashed, by first the GFC, and then the COVID years smashed it a bit more.

We are not unique.  We hear many stories from members how the condition has impacted their working life and that they find themselves on the treadmill of seeking diagnosis and treatment and hope, all the while trying to manage their precarious financial situation.  TN is not classed as a disability in Australia and even the Insurance Giants have no knowledge of the condition.

Part of our Vision is to raise awareness – trigeminal neuralgia is rare, most people have no idea such a condition exists.

This month is Rare Disease Awareness Month – we need to raise the profile of the condition – see our article about what you can do to highlight trigeminal neuralgia in February

Rare Disease Day February 28th 2023 – Trigeminal Neuralgia Association Australia (

The association wrote to the Queensland Health Minister, to request a meeting – see correspondence below

Nov 8 2022

Good Morning

I am the current president of Trigeminal Neuralgia Association Australia.

Our organisation has been supporting people suffering from trigeminal neuralgia for 20 years.

The WHO has recently recognised TN as a disability but there is very little awareness of the condition within Australia.

We are run entirely by volunteers and support sufferers with face to face, online and phone support group meetings.

It is extremely difficult getting stats within Australia about how many people actually suffer from the condition.  Sufferers often have to leave work because the pain is too hard to manage, which is a huge economic blow for them personally and of course our countries economy.

I would like to start a conversation about how we can help our sufferers, with better access to medical care, more training for neurologists, more neurologists, better pain management, stop the huge number of misdiagnosis and disability avenues etc.

I don’t really know the best first step, so I am hopeful, you can help us to make a difference.

See our website for further info

I am sure you receive many submissions, but I am hopeful of a reply.


Feb 17 2023

Good afternoon Lyn,

Thank you for your email dated on 8 November to the Honourable Yvette D’Ath MP, Minister for Health and Ambulance Services and Leader of the House requesting to meet.

Apologies for the delay in responding. Unfortunately, due to a heavily committed schedule the Minister is unable to meet. She has asked Julieanne Gilbert MP, Assistant Minister for Health to meet with you on her behalf.

The Assistant Minister’s office will be in contact with you shortly to arrange a time to meet via telephone. In the meantime, should you need to contact her office please email:

If you no longer require the meeting, please advise the Assistant Minister’s office.

Kind regards,

All state governments run the health offering within their state.  We need to get all of the State Health Ministers on board to create a guideline for diagnosis and treatment of trigeminal neuralgia.

What else can you do to raise awareness about Trigeminal Neuralgia?

Last year we lit up landmarks in 11 cities on International Trigeminal Neuralgia Awareness Day October 7th.  This year we want to achieve much more but our volunteer base is very small.  I am asking that each of you read the article about what you can do to Light Up In Teal in 2023.

International Trigeminal Neuralgia Awareness Day – Light Up In Teal 2023 – Trigeminal Neuralgia Association Australia (

Direct involvement by members to nominate the next committee – we need volunteers

Lastly, my tenure as President has nearly run its course with our AGM scheduled for April 1st 2023, which will be conducted as a zoom meeting.  You can read the information about the committee nomination process in the link below and I encourage you all to make a nomination online, consider volunteering and at the very least, add the AGM date to your calendar and be involved in the meeting.

Nominate Your Committee – Trigeminal Neuralgia Association Australia (

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Pain and me – Tamar Pincus

This video provides a wonderful visual depiction of a personal interpretation of acceptance of chronic pain created by Professor Tamar Pincus.

Tamar Pincus is a Professor in Health Psychology at The University of Southampton, where she is also Dean of the faculty of the environment and life sciences. Until 2022 she was a Professor and Executive Dean at Royal Holloway, University of London. She has led the Research Centre for the study of Pain and Well-Being at Royal Holloway. Her research spans experiment approaches to explore psychological mechanisms in pain, observation studies to measure risk over time, trials to test effectiveness, and qualitative work, to examine the thoughts and beliefs of people living with pain and those who are part of their life. Examples include investigations of cognitive biases in people living with pain; the psychological predictors for poor outcome in low back pain, and the study of clinicians’ beliefs and behaviours and their effect on patients with pain, especially in reference to effective reassurance and return to work.


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Biopsychosocial Model and Occupational Therapy

Pete Moore runs the Pain Toolkit organisation in the UK and talks in this session about biopsychosocial occupational therapy.

This conversation is  with Bronnie Thompson, who is an occupational therapist.  Bronnie talks about how an OT can help a person dealing with chronic pain, manage their day to to day lives, incorporating psychology and physiotherapy and pain management.

It is an important issue which often gets overlooked.

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3.7 Motor Cortex Stimulation

FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 3.7  Motor Cortex Stimulation Olga Khazen, BS and Julie G. Pilitsis, MD, PhD Not all facial pain is TN. This is a common mantra of experienced physicians to their trainees. How to differentiate between TN, especially TN type 2 and trigeminal neuropathic […]
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How Intractable Pain Causes Brain Tissue Loss

By Dr. Forest Tennant, PNN Columnist -August 09 2

The brain not only controls pain but the endocrine, cardiovascular, metabolic, respiratory and gastrointestinal systems. Any or all of these biologic systems may malfunction if there is brain tissue loss.

Beginning in 2004, brain scan studies began to document that brain tissue loss can be caused by intractable pain. Today, almost 20 years later, this important fact appears to be either unknown or a mystery to both the public and medical professionals.

Basic science researchers have unravelled the complex process of how and why this pathological phenomenon may occur. A good understanding of how this pathology develops is critical to properly care for and treat persons who develop intractable pain whether due to a disease or an injury.

What Causes Tissue Loss?

Tissue loss anywhere in the body is caused by inflammation, autoimmunity, or loss of blood supply due to trauma or disease. The brain scan studies done since 2004 that documented brain tissue loss were not done in persons who had a stroke or head trauma, but in pain patients experiencing inflammation and autoimmunity (i.e., collagen deterioration). It turns out that both biologic mechanisms may operate to cause brain tissue loss in intractable pain patients.

In the pursuit of understanding brain tissue loss and its accompanying malfunctions, it has been discovered that the brain and spinal cord (central nervous system or CNS) contain cells called microglia. They are closely akin to the immune protective cells in the blood stream which are called a “lymphocytes.”

The microglia in the CNS lay dormant until a harmful infection, toxin or bioelectric magnetic signal enters its domain, at which time it activates to capture and encapsulate the danger or produce inflammation to destroy the offender.

If the microglia are overwhelmed by some danger, such as a painful disease that isn’t cured, it produces excess inflammation that destroys some brain tissue which can be seen on special brain scans. Some viruses such as Epstein Barr may hibernate in microglia cells and create an autoimmune response, which magnifies inflammation and brain tissue loss.

Intractable pain diseases such as adhesive arachnoiditis (AA), reflex sympathetic dystrophy (CRPS/RSD), and genetic connective tissue diseases such as Ehlers-Danlos syndrome may incessantly produce toxic tissue particles and/or bioelectromagnetic signals that perpetuate microglial inflammation, tissue loss and CNS malfunctions.

This is the reason why proper pain management must have two targets: the pain generator and CNS inflammation.

How To Know You Have Lost Brain Tissue

If your pain is constant and never totally goes away, it means you have lost some brain tissue and neurotransmitters that normally shut off pain. If you have episodes of sweating, heat or anxiety, you probably have inflammation that is flaring. Naturally, if you feel you have lost some reading, calculating or memory capacity, it possibly means you have lost some brain tissue. MRI’s may also show some fibrous scars.

Fortunately, studies show that if a painful disease or injury is cured or reduced, brain tissue can regenerate. While we can’t guarantee that brain tissue will be restored, we offer here our simple, immediate and first step recommendations using non-prescription measures.

First, do you know the name and characteristics of the disease or injury that is causing your pain? Are you engaging in specific treatments to reduce or even cure your disease, or are you simply taking symptomatic pain relief medications?

Start at least two herbal-botanical agents that have some clinical indications that they reduce inflammation in the brain and spinal cord: serrapeptase – palmitoylethanolamide (PEA) and astragalus-curcumin-luteolin-nanokinase. You can take different agents on different days.

Increase the amount of protein (meat, fish, poultry, eggs) in your diet. Consider a collagen supplement. Limit starches and sugars.

Start taking these vitamins and minerals:

  • Vitamin C – 2,000mg in the AM & PM

  • Vitamin B-12, Vitamin D

  • Minerals: Magnesium and selenium

We recommend vitamins daily and minerals 3 to 5 days a week.

The above will help you stop additional tissue loss and hopefully regenerate brain tissue.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.

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Presentation by Karen Smith – Her experiences living with Chronic Pain

Karen Smith advocates for chronic pain sufferers in Canada, and shares her personal story in this presentation.

In this video she describes the impact on her, from other peoples reaction to her, when she discloses she lives with chronic pain.  In her case she suffers from a debilitating back injury, but I think her observations are true for all sufferers of invisible chronic pain conditions

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3.2 Microvascular Decompression: Attacking the Root of the Problem

FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 3.2 Microvascular Decompression: Attacking the Root of the Problem by Kenneth F. Casey, MD [Kenneth F. Casey MD FACS is a Past-President of the Medical Advisory Board of the American Facial Pain Association. He is an Associate Professor of Neurosurgery and Physical […]
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Whole Person Pain – Empowered Relief

The Association recently were provided details from Stamford University of the presentation by Dr. Beth Darnall, PhD – Associate Professor, Department of Anesthesiology, Perioperative and Pain Medicine

A video recording of last week’s program called “Whole Person Pain” is now available

 The presentation in 90 minutes in length and has details of many study approaches.  It is very relevant to the USA sufferers but there are plenty of tips to help you manage pain.  This presentation is one you can dip in and out of to view.  We hope you find it interesting and educational

Whole Person Pain – Empowered Relief – YouTube

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Deloitte Access Economics Report – The Cost of Pain in Australia

Sufferers of Trigeminal Neuralgia suffer chronic pain and very often treatment is made harder due to the  clinicians,  who treat the patient, do not always work collaboratively through the diagnostic and treatment process.

The Deloitte report is very interesting because it highlights the huge benefits from multi departmental care.

“Deloitte Access Economics was commissioned by Painaustralia to establish the local and Australia wide socioeconomic impact of pain, and to conduct a cost effectiveness analysis of health interventions that could reduce the impact of pain in Australia.

In this report, evidence has been presented to demonstrate the burden of chronic pain in Australia, including health system, productivity and carer costs, other financial costs and the loss of wellbeing.

The key findings include:

  • 3.24 million Australians were living with chronic pain in 2018. 53.8% are women and 68.3% are of working age
  • For the majority (56%) of Australians living with chronic pain, their pain restricts what activities they are able to undertake
  • The total financial cost of chronic pain in Australia in 2018 was estimated to be $73.2 billion, comprising $12.2 billion in health system costs, $48.3 billion in productivity losses, and $12.7 billion in other financial costs, such as informal care, aids and modifications and deadweight losses
  • People with chronic pain also experience a substantial reduction in their quality of life, valued at an additional $66.1 billion
  • The costs of chronic pain are expected to increase from $139.3 billion in 2018 to $215.6 billion by 2050 in real 2017-18 dollars
  • An extension of best practice care to Australian patients could lead to
    • substantial savings and better health outcomes.

    Published: April 2019″

The full report can be downloaded below – it is a long read but the index is extensive so users can hone into the areas that interest them


Deloitte have also provided a shorter presentation covering the key points


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Barometric Pressure – Impacting Pain

When the Gold Coast Support Group met on Saturday 4th December for their Christmas Lunch, there was a lot of chat about the weather we had been experiencing November had been a very stormy month and the Coast had received a lot of rain.  Many of our members commented that the weather had really set […]
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