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Brisbane Support Group

The Brisbane Support Group met on December 11th and are seen here holding a banner created by Matthew Puls.

Matthew now lives on the Gold Coast but has previously lived in Melbourne and Brisbane, and attended both cities support groups.

Matthew has generously offered to help us light up Australia in Teal for International Trigeminal Neuralgia Day on October 7th

We have signed up sites in Brisbane, Gold Coast and Adelaide to date

 

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Deloitte Access Economics Report – The Cost of Pain in Australia

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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

[Download not found]

Deloitte have also provided a shorter presentation covering the key points

[Download not found]
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Joint Consultation Study

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Our organisation have links with medical and dental experts around the world, all working hard to diagnose, support and treat sufferers of Trigeminal Neuralgia.

We publish our newsletter to them and they reciprocate by providing new research, articles and advice for the benefit of our members

In November we were contacted by Prof Joanna Zakrzewska, having read our September Newsletter featuring pain and patient decision making, she shared with us some research around GP and Neurosurgeon joint consultations.

The research center’s around patients satisfaction by using a collaborative model of consultation

We are delighted to publish the research and we hope you find it interesting

The papers are titled below

Trigeminal Neuralgia Guidelines 2021 V4

  • Ottowa Decision Guide 2015
    • [Download not found]
  • Poole Satisfaction with a MDT Clinic Decision Making Br J Pain 2021
    • [Download not found]
  • Key MDT Multi Disciplined Team
    • [Download not found]

Provided by

Professor Joanna M. Zakrzewska MD, FDSRCS, FFDRCSI, FFPMRCA
Consultant facial pain
Royal National ENT &Eastman Dental Hospitals

Floor 3, 179a Tottenham Court Road, London, W1T 7PA

 

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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 […]
To access this post, you must purchase TNA Australia Full Member or TNA Australia Associate Member.
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Furthering Trigeminal Neuralgia Awareness – Light It Up Teal 2022

We have started work on Lighting up Australia for 2022 to further Trigeminal Neuralgia Awareness.

We are delighted to announce Gold Coast City Council have agreed to Light up the Isle of Capri Bridge in Teal in support.

Thank you for enquiry on lighting Gold Coast assets to support International Trigeminal Neuralgia Awareness Day. I am happy to advise we can support this wonderful awareness campaign and light the Isle of Capri Bridge teal on 7th October 2022.Gold Coast City Council spokesperson

Below are pictures of the bridge lit up for an awareness campaign – it will look spectacular in Teal for the 2022 Trigeminal Neuralgia awareness campaign.

Isle of Capri Bridge – Gold Coast
Isle of Capri Bridge – Gold Coast

We aim to get buildings, bridges and homes lit up in Teal all around Australia. Please contact us if your town or city can help.

Want to make a difference in the life of someone who suffers from Trigeminal Neuralgia? Consider Membership to TNA Australia or a tax deductible donation.

Stay in touch by joining our newsletter – we’ll email a few times during the year with tips on how to best support people who suffer from Trigeminal Neuralgia.

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Risks Ahead – Avoiding triggers associated with Trigeminal Neuralgia

Risks Ahead - avoiding triggers associated with Trigeminal Neuralgia

The painful attacks of trigeminal neuralgia can sometimes be brought on, or made worse, by certain triggers, so it may help to avoid these triggers if possible.

For example, if your pain is triggered by wind, it may help to wear a scarf wrapped around your face in windy weather. A transparent dome-shaped umbrella can also protect your face from the weather.

If your pain is triggered by a draught in a room, avoid sitting near open windows or the source of air conditioning.

Avoid hot, spicy or cold food or drink if these seem to trigger your pain. Using a straw to drink warm or cold drinks may also help prevent the liquid coming into contact with painful areas of your mouth.

It’s important to eat nourishing meals, so consider eating mushy foods or liquidising your meals if you’re having difficulty chewing.

Certain foods seem to trigger attacks in some people, so you may want to consider avoiding things such as caffeine, citrus fruits and bananas.

Want to make a difference in the life of someone who suffers from Trigeminal Neuralgia? Consider Membership to TNA Australia or a tax deductible donation.

Stay in touch by joining our newsletter – we’ll email a few times during the year with tips on how to best support people who suffer from Trigeminal Neuralgia.

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Coping with Pain

Strategies for Coping with Pain

Pain is a constant when you are a sufferer of Trigeminal Neuralgia. Medications can help control the pain, and treatments don’t always take all of the pain away, all of the time. Sufferers often experience pain free periods, but can suffer extreme pain anxiety while pain free, in anticipation of a reoccurrence.

Recently our Sunshine Coast Support Group Leader, Nora English, shared her experience about managing pain

We hope you enjoy the article and can apply the the process to your pain cycles. Please do consider becoming a member of our Association to gain more insights, support, understanding and to be part of our exciting new initiatives coming soon, or make a donation to fund our research programs

Thought I would share my personal experience of power of positive psychology! I recently had a tooth pulled, due to an abscess, on my TN side. I put this off for 2 years for fear of TN returning as I have been pain free since Jan 2016. Before the procedure I did meditative breathing, during the procedure I was in a meditative state in the ocean at sunrise and the dentist pulling was the ebb and flow of the ocean. I was completely relaxed and all went well. But a few days later TN returned, so I kept telling myself “the nerve is just agitated it will pass” I felt like I was passing into migraine territory so I visited my upper cervical chiropractor. Then I visited a friend who instantly saw the pain in my face and got out her drum for sound healing. I have never tried sound healing before but it was quite extraordinary, I could feel a physical shift of energy and the TN and migraine gone. That was 4 weeks ago and I am still pain free. So yes the power of the mind and our thoughts is critical!

Stay positive”Nora English

Want to make a difference in the life of someone who suffers from Trigeminal Neuralgia? Consider Membership to TNA Australia or a tax deductible donation.

Stay in touch by joining our newsletter – we’ll email a few times during the year with tips on how to best support people who suffer from Trigeminal Neuralgia.

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Awareness

Trigeminal neuralgia (TN) is a well-recognized cause of facial pain in the general population.

Trigeminal neuralgia affects about 5 in every 100,000 people. It is more common in women than men and usually affects people between 50 and 70 years old.

Trigeminal neuralgia (TN) is a well-recognized cause of facial pain in the general population, although it is a relatively rare condition with a lifetime prevalence of up to 0.3%.

So In Australia that equates to 75,000 people thats three quarter capacity at the MCG.

The Australian Government does not fund any research into this condition, yet up to 75,000 people are left to cope with mis-diagnosis, dental trauma from teeth being removed unnecessarily, coping with a drug regime which is debilitating, and often cannot work.

We want to change the conversation, raise awareness and provide practical help for sufferers and support for carers.

Want to make a difference in the life of someone who suffers from Trigeminal Neuralgia? Consider Membership to TNA Australia or a tax deductible donation.

Stay in touch by joining our newsletter – we’ll email a few times during the year with tips on how to best support people who suffer from Trigeminal Neuralgia.