Posted on Leave a comment

Rare Disease Day February 28th 2023

Sufferers of trigeminal neuralgia know they are dealing with a rare disease.  Medical professionals rarely come across a patient with TN in their whole careers.   Diagnosis is difficult to obtain and the lack of neurologists, especially in Australia’s regional area, exasperate the isolation and despair for patients.

Every year the International Community come together to highlight the issues in February to raise awareness around rare diseases, and in October to highlight Trigeminal Neuralgia with the Light up in Teal event.

It is easy to feel helpless and isolated, but we urge all people diagnosed with TN to, tell your story,  create a family event which highlights the day, wear the colours and answer questions.

Doing nothing and waiting for change is not a great option.  Please tell us your story using this link.

Contact Us

Send a photo of your event or your outfit, and we will publish on our site.

How to Show Up for Rare Disease Day 2023

Light up and stripe up on February 28, organizers say, as preparations begin around the globe to raise awareness about rare diseases.

It’s not too soon to start planning for Rare Disease Day 2023, celebrated every year on the last day of February.

“It is a day to come together as a united community and raise awareness for rare diseases,” said Kristen Angell, Associate Director of Advocacy with the National Organization for Rare Disorders (NORD), at a recent kickoff webinar. NORD, based in the United States, collaborates with European patient group EURORDIS on the annual event.

The themes for Rare Disease Day 2023 are #ShowYourStripes and #ShareYourColours, giving the community a visible way to come together on February 28. Organizers recommend wearing your zebra stripes and lighting up homes and landmarks in the Rare Disease Day color palette (blue, pink, green and purple). In February 2022, CSL showed its support by lighting up Philadelphia’s Boathouse Row.

But perhaps the most impactful way to participate is by telling your personal story, scientist Sheldon Garrison said during the NORD webinar. It was a patient’s story that changed his entire career trajectory to focus on rare disease research.

“Whether that’s an opportunity for someone to inspire or influence someone like myself that’s on the research side of things, or to share the story with a legislator, or to share a story within the overall community, that is to me, a massive, massive win,” Garrison said.

Why wear zebra stripes for Rare Disease Day? The zebra is an icon of rare disease patients owing to a physician in the 1940s who taught medical students the maxim “if you hear hoofbeats, think horses, not zebras.” At the time, it was practical advice to suspect the most likely causes of illness and symptoms. But decades later, 7,000 rare diseases have been identified and supporters of the cause turned that horses vs. zebra advice on its head. Rare disease advocates took on the zebra as a beloved symbol. If you attend a rare disease event, expect to see zebra hats, zebra shirts and even TZ!, the zebra mascot of the Immune Deficiency Foundation.

Other ideas for getting involved in Rare Disease Day 2023 include attending virtual and in-person events, hosting your own event, raising funds for research, hanging flyers at local coffee shops or making social media videos that draw attention to rare disease resources.

“There are so many ideas out there, so be creative and find what works best for you and the community that’s around you,” NORD Donor Engagement and Events Manager Jaime Pacheco said.

Find more resources at the Rare Disease Day website.

Posted on Leave a comment

Appreciation from members

Sometimes all we can do is be the supportive shoulder, the conduit to pass on education and provide an environment for support groups.  When we hear of  great outcomes, it is so rewarding for all of our volunteers.

Kay Morden passed on her appreciation which we are delighted to share

 I “suffered”  from TN for 15 years until I had an MVD December 2021.    After diagnosis I am not sure what I would have done without the knowledge I gained and the support I received from TNA and my fellow Members (after attending one of the first Conferences in the Yarra Valley)
I live in Melbourne but I met Mark Dexter at another Conference on the Gold Coast and always thought if I ever decided to have a MVD (never dreaming I would) I would have Mark perform the operation.  He had a wonderful caring approach and seemed so interested in TN.
It’s been 12 months and I am pain free and medication free- absolutely fantastic.
I will always support the TNA and anyone who would like to know of my long,  individual TN journey and it’s successful outcome.
kind regards
Kay Morden.

PS  Tony MacPherson was a particularly wonderful support right through my “journey”  and would speak to me for over an hour on many occasions if I was going through a “rough” period.

Perry Campbell also renewed his membership despite being pain free for now.

I did renew even though my Trigeminal Neuralgia has been corrected (completely gone), by way of a microvascular decompression craniotomy in Sept 22.  A brilliant result by a brilliant team at RPA headed by the brilliant Prof. Brindha Shivalingum. Yahoo.

Kind regards,

Perry Campbell

Show quoted text

Posted on Leave a comment

Thinking and Depression: Changing Negative Thought Patterns

Thinking and Depression: Changing Negative Thought Patterns

By Wesley Buch, Ph.D., R. Psych.

Pain and the problems associated with pain – sleep disturbance, limitations, losses, conflict, and stressful circumstances – can all negatively affect how you think about yourself, others, and your world. Negative thinking can contribute to depressive feelings.

Life Events (injury/pain) —> Thoughts, Interpretations —> Feelings

If life events like an injury and other pain-related circumstances are distorted and misinterpreted in a negative way, this can lead to a depressed mood. A depressed mood is feelings of sadness or emptiness that linger all the time throughout your days for at least two weeks.

For example:

Event:

You overdo an activity and experience a pain flare-up.

Thoughts:
  • “I must have re-injured myself. Maybe this pain is from a whole new injury. It seems that whenever I get active, I end up harming myself all over again” (Hurt vs. Harm Interpretations of Pain).
  • “I’m going to give up all my activities so that I don’t harm myself anymore” (All or Nothing Thinking).
  • “I’m never going to get better. I could end up in a wheelchair” (Catastrophizing).
Mood:

Discouraged, down, hopeless; this depressed mood can then lead to more depressive thinking, which continues the vicious cycle between pain and mood.

Some thinking tends to increase pain. For example, negative thoughts, images, and feelings can actually make pain feel worse.

Thought:

“I can’t take this headache any longer!”

Image:

“A vice crushing my head.”

Feeling:

Hopelessness.

Changing Negative Thought Patterns

Here are some ideas about how to change the negative thinking patterns that lead to depression. There are other approaches to altering negative thought patterns, but these ideas will get you started:

  • Train yourself to recognize your negative thought patterns and write them down (a cognitive therapist can help you with this).
  • Learn how these thoughts are distorted.
  • Practice ‘talking back’ to your negative thoughts – challenge them and ‘gather evidence’ against them.
  • Replace them with positive coping thoughts and images:
Thought:

“I’ll use a strategy I’ve learned, e.g. rapid self-calming with breath work, to deal with this. I’ll try to keep the pain at a manageable level. I’ve withstood worse than this.”

Image:

A peaceful scene; a place you love to be; an imaginary adventure, or foreign travel.

Feeling:

Calmness, self-nurturance, satisfaction with your efforts to cope.

Here are some questions that will help you to effectively challenge any negative thought patterns:
  1. What is the evidence for or against this idea? Where is the logic? Are my judgments based on feelings and past experiences rather than the facts of this situation?
  2. Am I oversimplifying a cause-and-effect relationship?
  3. Am I confusing a habit with a fact?
  4. Am I confusing my version of the facts with the facts as they are?
  5. Am I thinking in all-or-nothing terms?
  6. Am I using words or phrases that are extreme or exaggerated? (e.g. can’t, must, every time, should, need, never, forever, always)
  7. Am I taking selected examples out of context?
  8. Am I thinking in terms of certainties instead of probabilities? Am I confusing a low probability with a high probability?
  9. Am I focusing on irrelevant factors?

If You Feel Depressed

Tell someone you trust.

Join Live Plan Be’s supportive forum to benefit from the wisdom of others who have chronic pain and depression – and share some of the helpful things you have learned. Or find a support group near you. Pain and depression both tend to ‘disappear’ you and disconnect you from others, so do the opposite in small steps.

Book a counselling session

Book a ‘counseling session’ appointment (usually 10-15 minutes) with your physician if your emotional life is taking a turn for the worse. You will learn about medications that lessen depression but also pain and sleep disturbance at the same time. Ask about side effects. Seek specific medication advice about greater nighttime pain control in order to obtain a deeper sleep. Medication and self-management activities can also help each other. You can also book a few counseling sessions at your local mental health centre.

Learn self-management strategies

Learn about pain self-management strategies from Live Plan Be’s educational material. Learning to ‘put a muffler on your pain’ will benefit your mood. For example, learn about pain distancing, compassionate self-talk when in pain, gentle movement routines despite pain, pacing to prevent pain flare-ups, hurt vs. harm pain interpretations, and rapid self-calming strategies during pain flare-ups.

Get better quality sleep

Learn about how to get a better night’s sleep. Review the Live Plan Be sleep module for tips and resources. Ask your physician about how to get a better night’s rest. Getting better sleep tends to improve mood and stamina for self-management activities.

Make a plan

Use Live Plan Be’s action planning tools to make some goals about daily activities that increase your interest, enjoyment, or sense of accomplishment but without repeated pain flare-ups. You can also target activities that you miss or avoid now. Make these activity goals small and manageable. For example, go for a short walk, especially with a friend. Go to your local aquatic centre to enjoy the weightlessness of moving and floating in the water, then go to the hot tub and let go of all bodily tension. These are mood-boosting activities. Incorporate these activities into your daily routines. Show these goals to your physician at your next visit. Discuss them with a friend and make some goals for social activities – an especially powerful mood booster.

Focus on positive thought patterns

Review the information on Changing Negative Thought Patterns above. Thinking patterns affect mood for better or worse, and you can learn how to manage these more effectively.

Go for a massage

Go for a few gentle massage sessions from a Registered Massage Therapist in your area. People with chronic pain and depression often feel alienated from their own bodies. They become ‘the untouchables.’ Massage not only provides professional touch but the release of bodily tension that often accompanies depression.

Take advantage of available resources

In British Columbia, try the free Bounce Back program for depression online. This program will connect you with a real person who will walk you through a cognitive-behavioural self-management approach to depression using a DVD.

This article and other helpful educational links, stories, articles and research van be found on the below website

https://www.liveplanbe.ca/pain-education

 

 

Posted on 2 Comments

President’s Monthly Musings – Jan 2023 All Change

It is the last day of January 2023 and the month has rushed by.  I hope you have all enjoyed a wonderful break over Christmas and New Year and have recharged your batteries.

January is the month when many of our pre new website members will be renewing their memberships.  If your membership has lapsed and you would like to renew please use the link below.

TNA Australia Full Member

I am always humbled by the generosity of our members, who often donate to the Association when they renew.  This month alone, you have donated $1,271 to our cause to ensure we can continue our work.  A huge heart felt thank you ❤️.

The month, and indeed the new year has signified many changes for myself.  I have taken the opportunity of the  holiday months to step back from my duties as President of the Association because I have been having some mental and physical health challenges.

I have always had a busy life, and balanced family, work and leisure reasonably well.  However we have had increased responsibility recently, helping to support our grandchildren, maintaining the one acre property where we live  and dealing with the issues that age and poor health serve up.

After a great deal of soul searching, I realise I cannot give the time commitment to support the workload the Presidency of the Association requires and deserves.

It has been hard for me to accept my limitations, something that all of our membership is very aware of.  I have always had a bit of a gung-ho personality so for me I am all in, or not, which is not ideal because I get worn down.

The Association will be holding its Annual General Meeting the last week of March 2023 and the membership will have the opportunity to vote in new volunteers.

Please be assured the committee continues to work hard on realising the vision for all sufferers of Trigeminal Neuralgia, education support and hope.

I will be continuing in the background as membership and website co-ordinator, along with publishing the ENEWS each month.

It has been an honour to serve on the committee and I am proud of the the committee’s achievements during my short tenure.

 

 

 

 

 

 

 

 

Posted on Leave a comment

President’s Monthly Musing – Dec 2022 Thriving through Christmas Festivities

It is Christmas – when the world takes on a loving glow and everyone is excitedly looking forward to parties, carol singing, roaming around lit up streets, gathering with family and friends, eating too many chocolates, and generally eating too much all together……

Except that isn’t the case for many of our members who are dealing with the pain of trigeminal neuralgia.  Enduring stabbing pain, having the lightest of breezes or a cold evening trigger pain, dreading talking and eating, and all you want to do is stay quiet, calm and on your own……

So how do we make the most of spending time with family and friends at Christmas and thrive rather than survive. 

The following tips may help you create a plan around your festivities

    1. Shop online. This will allow you to avoid stressful traffic and crowded stores. You are also less likely to catch a cold, flu or covid when you shop from the comfort of your own home.

    2. Limit gatherings to smaller groups to reduce stress and pain.

    3. Start shopping early and wrap your presents early. If you wrap a few gifts per day vs. all of them at once, you’ll be less tired and less sore from being hunched over.

    4. If you are feeling anxious – pop on your favourite Christmas songs and enjoy the memories, they conjure.  Research has shown that music can relax blood vessels and increase blood flow.

    5. Set boundaries around your activities and let your family know what they are, so you can drop in and spend the time that suits you, rather than coping with a long afternoon of festivities.

    6. Learn what works best for you to reduce stress, sometimes fragrances like lavender can calm your mind, applying firm pressure on the fleshy place between your index finger and thumb, called the Hoku spot for just 30 seconds is believed to reduce stress and tension in your upper body which is used in traditional Chinese medicine.

Take care of your body

The holidays look different for everyone, but they often have a few things in common: too much food and alcohol, and not enough sleep and exercise. These unhealthy behaviours are the perfect formula for triggering illness and pain. To avoid these common pitfalls, take steps to protect yourself and your immune system by:

  • Getting enough sleep
  • Staying hydrated
  • Avoiding large, heavy meals
  • Limiting or avoiding alcohol
  • Exercising regularly
  • Washing your hands frequently

These steps can also help keep other health conditions in check, such as diabetes and heart disease.

Stick to your routine

When you live with chronic pain, routine is key — especially if you take medications or have interventional treatments. Unfortunately, it can be easy for schedules to get disrupted during the holiday season.

To avoid these complications, set an alarm on your phone and checking your medication supply to ensure you won’t run out over the holidays. You should also talk to your provider about scheduling any pain management treatments you may need to keep your symptoms controlled during the season.

As you celebrate the Christmas Festivities, take time to just enjoy those special moments, watching a smile radiate on a child’s face, smelling the food cooking, listening to your family’s laughter, holding the hand of your partner, being present for as long as you are able.  The memory of special days can often stay with us long after the tinsel has been cleared away.

No matter how you spend Christmas – please remember

“you are not alone”

Posted on Leave a comment

Neuromodulation – for Trigeminal Neuralgia

Our Vice President and Tasmania support group leader, Helen Tyzack, updated her group about neuromodulation for trigeminal neuralgia back in 2021.  She has provided the information she gathered, and we hope it may provide education and understanding about this treatment

Neuromodulation. In italics below I have added the contents of emails I previously sent to all those on my database. The first email was dated 22nd May 2021.

Yesterday it was exciting to watch and listen to the Webinar from the USA at 9am; chaired by the president of the Facial Pain Association of America Dr Jeffrey Brown interviewing a Member of their Medical Board, Dr Konstantin, (an expert in neuromodulation of facial pain).  Previously, thanks to member Peter, I had sent you the information for you to link in. I received an immediate response yesterday from Peter after the Webinar and I wonder how many others took up this excellent opportunity.

 This free opportunity was excellent but whether it was useful depends on your circumstances.  So, what did I learn?   In brief,

  • Neuromodulation is management, not cure, by a non-destructive change in our nerve activity – using a device
  • The device delivers non-painful sensations to the nerve.
  • Neuromodulation is minimally invasive
  • Neuromodulation can be facilitated inside our body or outside depending on need and circumstances.
  • Neuromodulation always involves the use of small devices. That is, the chemical modulation of our nerves by our medications does not count as neuromodulation.
  • Neuromodulation does NOT work for people with Typical Trigeminal Neuralgia and usually makes the pain worse.
  • Neuromodulation does work for people with neuropathic pain on the trigeminal nerve; it is most effective for those who have more or less constant continuing unpleasant pain. Some sufferers with Typical TN can, over time, develop this neuropathic continuous facial pain – either with or without the Typical TN (and its sharp shooting electric shocks).  The neuromodulation may (and may not) work for such people.
  • The process is for the specialist to test a potential patient with an external device over a week to 10 days making adjustments so that the sufferer can work out whether this neuromodulation process might be comfortable for them and reduce or remove the pain.  If all works well then, a device is implanted – and can be there for up to 15-18 years if need be.  If there a period of 6 months without the pain, the thinking is that the device can be removed, and neuromodulation is no longer required.
  • Usually, you do NOT get the ideal result first up and it needs reworking so should be seen as a work in progress.  Every person’s body is unique and therefore the device controls have to be uniquely set up.
  • Once a week the device needs to be recharged and this takes about 30-40 minutes
  • Neuromodulation also works well with sufferers of Occipital Neuralgia at the back of the head but does not work for migraines.
  • Who does neuromodulation treatments?  Find only the most experienced. Beware of someone who says they have 100% success – they may have only treated one or two people. The safest practitioner is the one who has already encountered complications with this process and has safely managed and solved the problems; the more complications (not of their own doing) they have safely coped with the better.
  • How long before you feel relief after the device is implanted? Rarely immediately and mostly hours, days or weeks later.  The message was to be open minded and not to panic if the response is not fast.  Allow time for your body to adjust

Main point:  Not every treatment will work for every person. No treatment will work all the time.

 I am fortunate at the moment not to be taking medications or in pain.  But I am mindful that the time will come when the pain returns. This Webinar was helpful because I now know more about my options for managing the pain.  In Tasmania where would I go for advice? I would be talking with members of the Trigeminal Neuralgia Associations of Australia’s Medical Advisory Board.

My second email was dated 10th August.

A few months ago, I told you I had listened to/watched webinars on the topic of Neuromodulation as a treatment for Trigeminal Neuralgia pain. Afterwards, I set out to determine if a specialist might come to Tasmania and talk to people in our Support Group and any others who might be interested.

Since then, I have been exchanging emails with Dr Nick Christelis, the President of the Neuromodulation Society of Australia and New Zealand. Recently, we talked by phone about the options, but a visit to Tasmania by a specialist to meet with TN sufferers is not on the cards.  However – 

Firstly:

Nick confirmed there was not a specialist in Tasmania, but he explained that he had used neuromodulation on patients with Trigeminal Neuralgia. He would welcome contact from any Tasmanian sufferers and be prepared to do an initial Telehealth consultation. His contact details are on the website: https://painspecialistsaustralia.com.au and his consultation and surgical location is within Warringal Private Hospital in the Melbourne suburb of Heidelberg, Victoria. Phone 1300 798 682.  If you read through this page and watch the video, then you will understand more about the services he offers.  His site has this to say about Nick:

Nick now practices 100% within the field of pain medicine. He is an interventional pain specialist combining a multidisciplinary team approach with advanced pain interventional techniques like nerve and joint blocks, epidural injections, radiofrequency ablation, pulsed radiofrequency, spinal cord stimulation and other advanced neuromodulation techniques.

Secondly:

Nick explained that a quarterly webinar is offered from within his organisation and can be accessed on the bellow link

Events | Ramsay Health Care

Please note that I have no experience of neuromodulation and no experience of Nick’s capabilities, so this email is not meant to be a recommendation. Rather, I am letting you know about this option, in case neuromodulation is a process which could improve your quality of life. 

If you decide to try this, I would be very interested to know what the process is and all the ins and outs. Not to mention whether it was useful for you and reduced, removed your pain. I am sure other sufferers would also be interested so please keep me posted. 

For facial pain sufferers in other mainland states, I recommend you read through the Neuromodulation Society of Australia and New Zealand website to find specialists close to you.

Extra Q&A after the recent webinar on neuromodulation pain management produced by the USA Facial Pain Association

1. Can a TENS unit applied somewhere help? Is the concept of neuromodulation similar to using a TENS unit? thank you.

The TENS is indeed one of the types of neuromodulation, and we do recommend trying it in patients who can tolerate placement electrodes onto painful regions. It tends to be much less effective than other neuromodulation approaches, but is definitely worth trying due to its low invasiveness. Keep in mind, that pain that does not respond to TENS may still be relieved by invasive neuromodulation with implanted devices.

2. Explain the relationship between neuromodulation and neuroplasticity?

Neuromodulation in many ways relies on neuroplasticity – we are trying to modify neural activity by adding neuromodulation signals, and neural plasticity plays a major role in cooling down hyperactive parts of the nervous system that are responsible for development of pain in the first place.

3. “Explain foramen ovale stimulation?” What’s the difference

I am not aware of “foramen ovale stimulation” – most likely, the procedure which is referred here is the stimulation of the trigeminal ganglion (Gasserian ganglion) that is reached through foramen ovale. This approach is known for many years but is rarely used, mostly because it is difficult to keep electrodes in that location as they tend to migrate over time. In principle, however, the trigeminal ganglion stimulation is a very effective approach to control neuropathic facial pain and may be considered if the pain involves several trigeminal branches at once.

4. Can it be used for a patient with a pacemaker?

Yes, neuromodulation can be used in presence of pacemakers and defibrillators. Your doctors need to be aware of these devices so the proper precautions may be made in choosing the device and its location in the body.

5. What is the success related to pain as a result of acoustic neuroma surgery/radiosurgery?

The mere presence of acoustic neuromas, the surgery to remove the tumor, and sometimes radiosurgery for the tumor may result in development of facial pain. Sometimes it presents as secondary trigeminal neuralgia and its treatment resembles trigeminal neuralgia management algorithm, but in some cases the patients develop trigeminal neuropathic pain or occipital neuralgia, and these conditions may great indications for neuromodulation.

6. Would it help with Geniculate Neuralgia?

The pain of geniculate neuralgia has not been investigated as an indication for neuromodulation, or at least I have not heard of it. The classical geniculate neuralgia may require either microvascular decompression or, more often, an open rhizotomy of nervus intermedius – this is what I normally recommend to my patients.

7. Once implanted, can the patient stop taking medications?

Yes, it is possible – but we usually start considering weaning pain medications only after the patients report symptomatic improvement from neuromodulation. Majority of patients are able to significantly reduce the amount of their pain-relieving medications as a result.

8. How much experience does Dr Slavin has with this? How many has Dr Slavin done?

Neuromodulation is a large part of my practice ever since I completed my fellowship in 1999 – and I do between 100 and 150 neuromodulation surgeries every year. Very few of these surgeries are done for facial pain as most facial pain patients I see end up having other interventions, including microvascular decompressions, percutaneous rhizotomy, radiosurgery, etc. Most neuromodulation surgeries in my practice are still done for pain in lower back and extremities, Parkinson disease and tremor, epilepsy and other functional neurosurgical conditions.

9. If I had an MVD without any pain relief, would this help?

Neuromodulation is generally recommended for trigeminal neuropathic pain and not for trigeminal neuralgia. If the patient’s typical trigeminal neuralgia did not improve with microvascular decompression, we would usually consider either repeating the decompression or proceeding with percutaneous interventions. If the pain is non-neuralgic but rather neuropathic in nature, neuromodulation would be an appropriate thing to consider.

10. Are the electrodes ever implanted into the brain and if so, where?

The brain stimulation for facial pain is usually reserved for patients with anesthesia dolorosa – the electrodes are placed either over the surface of the brain (so called motor cortex stimulation) or in the depth of the brain in the area of thalamus or brainstem (so called deep brain stimulation).

11. I am just finishing TMS therapy. It has not helped me. I like Dr. Brown’s suggestion to “adjust the magnet.” How can the Dr. find the correct “spot” for neuropathic pain?

It may be challenging to find the right spot for TMS. We usually recommend finding the face representation in the contralateral motor cortex or focusing stimulation at pre-motor area (which is used for treatment of depression).

12. Following left craniotomy for Trigeminal Schwannoma I have a mix of numbness on lower jaw but extremely sensitive and continuous pain on temple, cheek, and upper jaw. Is the neuro modulation compatible when both numbness and sensitivity are combined?

To answer your question, it would be important to find out whether the numbness is complete or partial. Stimulation of peripheral branches may help in case of partial numbness. Complete numbness may necessitate stimulation of the uppermost cervical spinal cord, the deep brain structures or the motor cortex.

13. Hi, I have a question from the webinar. Dr. Slavin described neuromodulation, if I understood correctly, as an option for trigeminal neuropathic pain but not trigeminal neuralgia and described TN2 symptoms as neuropathic pain. Just to clarify before I get my hopes up, is “trigeminal neuropathy” the same thing as TN2?

Trigeminal neuropathic pain is different from TN2 but there is certain overlap between them. As a matter of fact, about 20 years ago we published a theory that postulated a possible transition from TN2 to trigeminal neuropathic pain as a part natural history of this condition. Right now, we do not recommend neuromodulation for TN2, but use it routinely and frequently for trigeminal neuropathic pain.

The original webinar published by the FPA can be watched below –


Facial Pain Association Neuromodulation – YouTube

Posted on Leave a comment

Julian Whittaker – Frozen in Fear – Waiting

One of our members has written an article which describes how he feels about the impact that trigeminal neuralgia has on him.

Frozen in fear. Waiting…by Julian Whittaker

All is fine in your world, as if Trigeminal Neuralgia was a myth.

The day is going well, but in the back of your mind you know anytime the evil thing can hit like a freight-train. Pain like you’ve never dreamed possible. Suddenly attacking out of nowhere, like a dozen white-hot electrically charged needles plunging into your face.

Then, almost as quickly as it arrives, it departs, after perhaps 10 seconds, maybe 20 or 30 seconds of agony. Screaming rolling on the floor pain. After minutes you’ve recovered, but you’re absolutely shaken.

The slightest breeze or lightest touch somewhere on your face can set it off, but where, when? That’s where the fear comes in. Expecting it.

Sometimes you wake in the morning frozen, knowing that any movement could set it off. You’re lying on your left arm which has gone numb, but you’re unable to turnover or move a muscle for fear of setting the pain off, (you’ll feel that dead arm all day, and the next too!).

You can just lay there, but you know you have to make a move eventually, aware that the electric-shock needles will then hit you, eventually you have to take a plunge into the pain.

I had a big ‘hit’ today, completely out of the blue, ironically just an hour before an appointment with my neurosurgeon who, 7 months ago operated using the ‘R F Ablation’ technique. This gave me 7 months free of the pain, which was a blessing, but I knew the procedure probably wouldn’t be a permanent cure. In the meantime, I thank ‘Trileptal’ for intercepting the pain. But…

…It’s back.

This is the reality for many of our members who are struggling to understand their pain, have not yet seen a neurologist, or who don’t have an operable option, or who don’t have good pain management plans, and who sometimes, just aren’t believed.

We have to raise our voices, describe, educate, provide information, support and find a permanent cure.

 

Posted on Leave a comment

Invisible Disability in Australia

People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects.
4.5 million Australians live with conditions which are invisible to the casual observer.  Our community who deal with the pain of trigeminal neuralgia are well aware of this.
As a society we still suffer from the stereotype belief that if you can’t see the disability you must be faking, or trying to get off work or some other nonsense.
The following article is by the ABC’s Specialist Reporting Team’s Evan Young
This article is very insightful and we encourage all of our members to take heart and have the courage, when you can, to tell your story.  Education, information and changing attitudes is the only way forward

“Acceptance means so much more than many people understand, just to have someone be like, ‘I see you,’ because we feel invisible so much of the time.”

Connect to community’s, attend online and face to face support groups, talk to family and friends.  Together we can change society’s negative views about invisible illness’s which have a devestating impact on our sufferers.

Posted on Leave a comment

President’s Monthly Musings – Nov 2022 Year of Progress

It has been a busy month again and I cannot express how proud I am of our community.  So much progress has been achieved in the last year and I feel it is appropriate to spend some time and reflect on just how far we have all come.  We are heading into the Christmas season and soon everyone’s focus hopefully will be with family and friends celebrating together.

To appreciate the massive amount of change, I must cast my mind back to June 2021 not long after I became secretary, and talk turned to creating a new website.  The fact that the committee had already sanctioned a new website was hugely exciting to me, because this was an area that matched my professional background.  In the next few months, the web design was agreed, and work started.  Normally in a business arena it would take a full year to design, collaborate and create a platform to just get to a test stage.  However, we pulled it off in 4 months and went live in November 2021.

Although we had been working in the trigeminal neuralgia field for 20 years, we were not easily accessible.  The new website allowed our members to manage their own accounts, receive automated reminders to renew membership, pay in a way that suited them, contact us, provide members stories, find news articles and feel connected to our community.

Having this platform has enabled the association to offer opportunities to volunteer and help our community.

This year we have recruited a new committee member, Sarah Wilkinson who is contributing to the decision making and hopefully will be able to set up a young patient advocacy platform.  To have to bear the pain of trigeminal neuralgia at any age is difficult, but to have to deal with it from such a young age is heart breaking.

And we also welcomed the return to committee of Helen Tyzack elected as the Vice President.  Helen has worked tirelessly for months on our strategic plan and new updated constitution along with her duties at Tasmania’s support group leader.

Gay Roberts in Adelaide has taken over the running of that support group.  She gained the confidence to do so by working through our online training program, reinforcing her knowledge and providing a reference library to support her.  She currently runs face to face support meetings but next year she is keen to offer online meetings for her regional members.  How wonderful that Gay has progressed with such confidence, from telling us she couldn’t deal with technology, to wanting to run meetings using technology.  I am enormously proud of her.

Kim O’Donnell contacted us in August, keen to set up a support group in the Toowoomba / Lockyer Valley area.  I was camping at Evens Head when I received her message and practically danced with excitement telling Patrick when he returned from surfing.  Kim also worked through our training modules, and she is now offering a fortnightly online meeting on a Tuesday at 10.30am.  You don’t have to live in the area to connect to Kim, she is intent on helping anyone with trigeminal neuralgia, to support and offer advice.  She has set up a facebook group to advertise her meetings, so please do join her and have a chat.

This month we were contacted by Jodie Schneider from Townsville, who is interested in training as a support group leader and hopes to run a support group in Townsville.  Jodie contributed some wonderful pictures of Townsville for our Light Up in Teal International Trigeminal Neuralgia Awareness Day.    We welcome her to our team, and I wish her every success in her training.  I am sure Jodie will create a wonderful support community in her area.

We are producing our last webinar of the year, a presentation by Dr Jeremy Russell – click HERE for details.  How wonderful that we were able to produce 4 webinars this year to provide education and information.  Our support group leader volunteers make a difference to someone at every meeting.

quote from a former member

I’ve been a member since 2007 when I was in absolute agony when the condition I’d had since 1997 flared up .  The support I received from everyone there was so wonderful, as I always had to explain what was wrong with me  as nobody have ever heard of it.  Fortunately the wonderful Dr Dexter operated in February 2008 & I’ve been painfree ever since.  I kept going to meetings at Toongabbie for some years to tell my story so that people would know there could be a happy ending.  Thanks for the memories.

quote from a donator

My pleasure my Mum is a TN sufferer, she has for the past 10 years, truly a remarkable woman to have the strength to manage this awful illness.
Hopefully we can find a cure🙏🏽

So, as we head into the Christmas Season – I wish all of our volunteers and members the very best of greetings.  I hope that pain stays away, the weather stays mellow, the food is easy to eat and chatting brings you pleasure.

here is to 2023 – remember “you are not alone”