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Our Association has been operating as a charity for 20 years. Sometimes in the busyness of volunteering, it is easy to lose sight of the good we do for our community and the power of story telling
This experience has been supplied by Jo Holland who has given us permission to publish in order for her experience to help others.
To the Trigeminal Neuralgia Association Australia
“I can’t thank you enough for all of your support which immensely assisted me to access quicker treatment during my recent hospital experience.
I basically collapsed into the ER Department and was in a state of distress as I walked through the doors and they asked me if I was alright, which I answered no. I was experiencing an attack of Trigeminal Neuralgia which spread to occipital neuralgia and had also triggered my frontal migraines. I was in a world of pain.
Presenting my TNAA Blue card, endorsed by the Medical Advisory Board, led to a prompt triage. Although the medical staff hadn’t encountered this card before, they recognised its significance and initiated treatment shortly thereafter.
Over the course spanning several days, my treatment included Sodium Valproate and Cloromazapine infusions (noted from my neurologist’s instructions), a Sphenopalatine Ganglion Block, a Bilateral Occipital Nerve Block, and Tapentadol for pain relief, complementing my previous 3-month Botox treatment.
Overall I was diagnosed with ‘Status Migrainousus’ which just sounds like a Harry Potter spell to me, but encompassed all of the TN and ON as well.
I deeply appreciate how the card influenced my care, especially as I was unable to communicate during this period. My partner’s assistance was invaluable, and their possession of a second card allowed them to advocate on my behalf without disturbance, especially as I was completely out of it during the first few days (so much so as when I closed my eyes I could just see cartoons of everyone talking in the room and believed my bed was embedded as part of Fraggle Rock (?!).
The occipital nerve block worked a treat. I have had one before which wasn’t as effective but this one yielded immediate relief and alleviated pain in the back of my head.
The Sphenopalatine Ganglion Block provided relief to searing pain in my teeth which had previously felt like they were being tasered.
The infusions also offered relief on multiple fronts, ultimately restoring my wellbeing and eventually everything settled back into place.
My discharge pharmaceutical regime of increased doses in Tegretol, Lyrica, rabeprazole, and short-term steroid is slowly settling the expected end of my symptoms at home over the next week.
While this experience marked the worst pain I’ve ever endured, I am immensely grateful for the exceptional treatment I received, all thanks to the unwavering dedication of the Trigeminal Neuralgia Association Australia in providing support to individuals like me and providing tangible resources which can be used in cases of emergency care.
I cannot thank you all enough. Wishing everyone wellness and to take care of yourself 😘 XXX”
Camden and Campbelltown Hospitals are New South Wales public hospitals servicing the Macarthur region in South West Sydney. Camden and Campbelltown hospitals operate under a single, common executive management structure, with services delivered across both hospitals.
Number of beds: 306
Founded: 1899, Campbelltown
Affiliated university: Western Sydney University
Care system: Medicare (Public)
“Especially great experience from a hospital which has historically been known to have “Rampant understaffing and an excessive number of vacancies …[which has frequently] drawn condemnation from a multi-partisan parliamentary committee.
When I first attended ER there was only one single seat available, ER was over capacity with an average 9 hour wait at that time. The hospital staff kept apologising, even though I was receiving responsive treatment. More needs to be done to equip our critical hospitals with the staffing they need”
you are more than welcome to use my experience and story in any article. I feel so lucky to have found this group after so many years of suffering. It was so good not having to repeat my symptoms/experiences due to the card and was super grateful that the hospital was so super responsive.
My husband just told me that the ED Specialist took a photo of the card and was sharing with his colleagues. It is great to hear that they are spreading awareness of the condition within the medical field too 🙂
Jo has updated us from the response from the the Hospital
I also forwarded a link to the hospital for their acknowledgement, and they have asked for the link to be disseminated up to the Executive Staff and to the Board of Directors for even further promotion. I really can’t thank you enough for all of your support. This last hospital experience I had, was in stark contrast to the previous admissions I have had and am hoping that this further promotion can flood the hospital with awareness of TN.
Wow that is wonderful to hear. Maybe they will consider a collaboration with us seeing as they are linked to Monash University. Thank you for taking the time to tell us about your experience. I totally understand when a person is in a bit of remission, they don’t like to be reminded of their pain but stories like yours make such a difference. I will also link your story to our Instagram page this afternoon.
Hi Lyn, just an update. Campbelltown Hospital will be including the article in their newsletter and will further promote Trigeminal Neuralgia and the TNAA
That’s awesome can they send us the link for the newsletter.
Our Association is always looking for volunteers. If you have a few hours spare a month, reach out and help us help others.
Your interactions with others highlighting trigeminal neuralgia awareness is so important – please let us know your stories.
E. Paul Zehr Ph.D. Black Belt Brain
Sticks and Stones Break Your Bones but Words Hurt Your Brain
There’s overlap in how the brain processes physical and emotional pain.
Posted October 7, 2023
Reviewed by Gary Drevitch
Pain processing is about detecting imminent damage.
Words associated with physical pain can change the perception and brain processing of pain.
Brain imaging shows that semantic pain partly shares the neural substrates of nociceptive pain.
When I was a kid my mom used to tell me “sticks and stones can break your bones but words will never hurt you.” She was riffing on a phrase from GF Northall in 1894 but she was also trying to tell me to ignore other kids in school who might say unkind things. She was trying to encourage resilience and mostly succeeded, but words seem to “hurt” also, even when no bones are broken.
Do words hurt?
Researchers Eleonora Borelli and her colleagues in Modena, Italy were interested in similarities in the brain’s processing of pain from physical injury and that from words. They extended prior work showing that processing “semantic pain” (e.g. words associated with physical pain) can change the perception and brain processing of pain. They also wanted to relate this to social pain, that “of social exclusion, rejection or loss of significant others.”
In a cohort of 34 women, the researchers studied brain activity using fMRI in two different sessions. The “semantic” session involved “positive words, negative pain-unrelated words, physical pain-related words, and social pain-related words”. The “nociceptive” session related to bodily somatic pain involved mechanical activation of the skin that could be “painful” or non-painful. Subjectively each person rated how unpleasant each condition was.
When examining regional changes in brain activity, words in the semantic session associated with social pain led to increased activity in many of the same areas found for physical pain. The researchers conclude that their results confirm that “semantic pain partly shares the neural substrates of nociceptive pain.”
There is a point to pain
This doesn’t mean that the neural processing of physical pain due to mechanical injury is exactly the same as that from words, but it does suggest that there is overlap and sharing. This results in related effects in how we feel.
This suggests something additional about pain processing. A fascinating thing about physical pain is that it’s a brain-level interpretation of impending tissue damage detected by “nociceptors” relaying in the spinal cord. The point of nociceptive responses is to warn you that something damaging is about to happen or will happen if we keep doing what we are doing. If you accidentally put your hand too close to something very hot, nociceptors in your skin will activate to generate a reflex to pull your limb away before you get burned. The key here is that the receptors help out before injury to prevent damage. This means that many events that are detected are avoided and don’t lead to ongoing damage.
Changing the threshold for pain
I think how we react to pain from words can be related to bodily reactions to pain from mechanical inputs. Many of the things we hear and see that might be insulting or hurtful don’t always have to be experienced at the level of “damage.” That is, we can ignore and be resilient to some things by changing our threshold of reaction in the same way bodily reactions to non-damaging impacts are handled by the nervous system.
When framing the potential effects of words on how we feel this way, we gain some agency over how they can affect us long term. It doesn’t mean to ignore everything and certainly not more serious injuries. I am suggesting we do have the capacity to ignore some things, though, and treat them a bit like our brain treats the little bumps and bangs our bodies experience every day. Not everything that can be reacted to has to lead to lasting damage.
The most important takeaway for me is that this is another example of research clearly demonstrating the fallacy of separating the brain from the body. Humans, like all animals, are integrated, holistic beings. We can easily see a broken bone and infer the real extreme pain that the person must be experiencing. It’s critical to realize that the injuries and pain that a person might have from social experiences are also real.
That old expression, often used to put down feelings, is apt but for a different reason. It really is “all in your head,” but so is the entire universe. All of our experiences, regardless of point of origin, are in our heads. That’s the point of being conscious. It doesn’t matter whether our brains get information from our skin, our ears, our eyes, or our thoughts; hurtful intentions can cause pain. While my mom wasn’t completely correct in using that old saying, her intentions were always helpful and did help manage hurt.
Borelli E, Benuzzi F, Ballotta D, Bandieri E, Luppi M, Cacciari C, Porro CA and Lui F (2023). Words hurt: common and distinct neural substrates underlying nociceptive and semantic pain. Front. Neurosci. 17:1234286. doi: 10.3389/fnins.2023.1234286
About the Author
E. Paul Zehr Ph.D., is a sensorimotor neuroscientist and a martial artist of Okinawan, Japanese, and Chinese traditions. His books include Becoming Batman, Inventing Iron Man, Project Superhero, and Chasing Captain America.
Thank you Dee for sharing providing your members story, each one helps our community. I thought you might like to share my journey with other members. I could go into further depth if you want as I must say some said it was caused by MS lesions and others said it was from the TMJ […]
Thank you Cheryl for sharing providing your members story, each one helps our community. I’ve been a member for a couple years so though about time I might share my story. My journey with Trigeminal Neuralgia began the middle of 2019. It started with a oral operation. The horrible shock- like stabbing pains began a […]
Continuing our conversations around diagnosing and treating persistent orofacial pain, the following article explains the new classifications for dental pain and the people behind the changes.
Professor Chris Peck is a senior transformative leader who, as a leader of a major University initiative and Dean of Faculty, has developed and delivered innovative and sustainable University- and community-wide research and education strategies. These roles have been in complex multi-stakeholder environments where he has developed industry, government, and community collaborations to produce effective and efficient outcomes with significant impact domestically and internationally.
Australian and New Zealand Academy of Orofacial Pain
– Present 13 years 4 months
Leading the National Academy that provides a unified vision for the development of clinical care, research and teaching of orofacial pain in Australia and New Zealand
It’s incredibly important to have clarity around these classifications and definitions of pain because if you can’t make the diagnosis, how are you going to treat patients appropriately? That’s been a problem in the past.
Dr Chris Peck, MJ Cousins Pain Management and Research Centre
We are delighted to announce that Ass Prof Tasha Stanton has accepted our invitation to present webinar for our community. She has an extremely busy schedule but we have preliminary booked February 7th 2024.
The below podcast will help you understand her work.
Wednesday Aug 30, 2023
Episode 36 – Tasha Stanton (Relaunch) – Illusions and context in pain
Associate Professor Tasha Stanton delves into the realm of pain perception, context, and illusion. Prepare to embark on a journey of intellectual exploration as Assoc. Prof. Stanton shares her profound expertise in pain science and therapy. With a keen focus on research and therapeutic insights, she guides us through the labyrinthine of pain perception, revealing how our minds and bodies interact to create pain.
The “Le Pub Pain Podcast” offers a unique opportunity to engage with Assoc—Prof—Stanton’s groundbreaking research, exploring the multidimensional landscape of pain from both academic and real-world perspectives. Whether you’re a seasoned researcher, a healthcare practitioner, or simply curious about the mysteries of the human experience, this episode promises to leave you with newfound insights and a deeper appreciation for the complexity of pain.
There has been some interaction on our Facebook page referencing Stem Cell Therapy for trigeminal neuralgia. Over the years there has been some controversial claims on the subject, with medical professionals choosing which side they stood on the issue, however this is a quickly developing area of medical science.
In this article we provide educational content to help you understand the science and potential applications.
Current research is very much focused on the auto immune system and activating the bodies own healing capacities to cure invasive conditions like cancer.
So what are stem cells?
Stem cells are immature cells that have the ability to renew and differentiate to form different types of cells; in other words, they are cells that have the ability to develop into various kinds of other types of cells. For example, blood cells, nerve cells, immune cells etc. Human stem cells can be found in adult bone marrow or human embryos.
Australia is currently watching with amazement, one of our own prominent melanoma specialist treating himself with ground breaking novel treatments to try and beat a life ending brain tumour.
Stem cell therapy is not a new concept and has been researched for more than 15 years and below are highlighted two studies covering the subject.
Mesenchymal stem cells (MSCs) have been shown in animal models to attenuate chronic neuropathic pain. This preliminary study investigated if: i) injections of autologous MSCs can reduce human neuropathic pain and ii) evaluate the safety of the procedure.
Trigeminal NP encompasses variable states of diagnosis, this includes trauma resulting in maxillofacial NP, odontalgia which is atypical, and burning mouth syndrome. Trigeminal NP is considered to be a localized pain. Thereby, its patient population forms an ideal group to investigate the innovative novel therapy.
The below article link has been published via Stem Cell Care India
DISCLAIMER INFO: In 2010, for example, Regenexx sued the FDA, claiming the agency lacked the authority to regulate its procedures, which involved culturing stem cells before reinjecting them into patients. Regenexx lost its case and was countersued by the FDA, which charged that Regenexx was marketing an unapproved drug.20 June 2019
At Regenexx, we’re constantly expanding the number and type of patients we can help with precision orthobiologic procedures. While that occurs at all of our sites, our primary new treatment research site is our Colorado HQ. There we’ve been developing a new procedure to help patients with Trigeminal Neuralgia. This is very different than the Trigeminal Neuralgia stem cell treatment scams popping up at local integrative medicine practices. Let’s dig in.
What Is Trigeminal Neuralgia? How Is It Usually Treated?
Imagine that you wake up one day with severe facial pain. The pain is just like a severe toothache but in your eye, cheek, or jaw and nothing makes it go away. In fact, after a few months like this, with most doctors not knowing how to help, you’re considering the possibility that suicide could be the answer. That’s Trigeminal Neuralgia in a nutshell.
There are specialized nerves that exit the skull at various places called “Cranial nerves”. They come directly off of the brain or brainstem, unlike all other nerves that come off the spinal cord. They’re numbered 1-12 and the fifth nerve is called “Trigeminal”. It’s responsible for taking sensations from the face to the brain.
The Trigeminal nerve has three branches, the Mandibular (jaw), Ophthalmic (eye), and Maxillary (cheek):
These branches from top to bottom are also known as V1, V2, and V3.
When one or more of these nerves chronically misfires, this can cause chronic severe pain in the face, teeth, or nose. This pain is usually more intense than when other nerves in the body misfire because there’s less pain control circuitry for Cranial nerves.
The treatments are very invasive and involve either focused radiation to destroy the nerve (gamma knife or radiosurgery) or microsurgery to move an artery that may be aggravating the nerve (microvascular decompression). Both have high complication rates and aren’t always successful.
The New Orthobiologic Trigeminal Neuralgia Treatment
We’ve known for some time that platelet growth factors can help nerve function. In fact, we’ve published a paper suggesting that Platelet Lysate (the growth factors stripped from platelets in plasma) may help chronically irritated low back nerves. Others have published research showing that PRP can help the Median nerve in Carpal Tunnel Syndrome patients (4-9).
Hence, it wasn’t too far a stretch to think that if we developed a precise way to inject the Trigeminal nerve with Platelet Lysate (or PRP) that these patients may be helped as well without these invasive and destructive procedures. While I’ve treated some of these patients as well who also have Craniocervical Instability, Jason Markle, M.D. at our Colorado HQ really took the lead on this advancement. I’m proud to say that Jason has now begun to dial in this new promising therapy.
The new treatment, known as the Perc-TGN procedure is percutaneous hydrodissection of the Trigeminal nerve using Platelet Lysate. This involves first isolating platelets from the patient’s blood and creating a growth factor rich plasma in our lab. Then the doctor precisely places this mix using x-ray and ultrasound guidance around the problematic branches of the nerve. This both breaks up local scar tissue and provides growth factors for the nerve to help it heal.
Does Perc-TGN Work?
Let one of the first patients to receive this new procedure tell you about their journey:
“After a year of misdiagnosis, I was correctly diagnosed with Trigeminal Neuralgia (TN) in 2015. TN is often called the “Suicide Disease”, because of the level of pain and no cure. The TN nerve on the left side of my face was damaged, because a blood vessel was in constant contact and had worn away the Myelin Sheath, which protects the nerve. With every pulse I experienced excruciating pain. After seeing multiple neurologists and neurosurgeons in December 2018, I had Radiosurgery on the damaged nerve. This doesn’t heal the nerve, but blocks the pain signal from the nerve to the brain. The hope was that I would be pain-free for up to three years. After 13 months in February 2020, the pain returned like a freight train.
The next step would have been Microvascular Decompression Surgery. The possible complications from this surgery include a stroke or loss of hearing or sight on the side where the damaged TN nerve is located. While they have success, it’s not known how long one might be pain free. Not excited about this option, God another door opened for me.
Today there are lots of stem cell clinics. Although Centeno-Schultz in Broomfield, Colorado pioneered stem cell and PRP. Dr. Jason Markle, one of the doctors at the clinic, decided to do a small trial with me. I have had three Plasma Rich Platelets (PRP) injections over and around the damaged Trigeminal nerve. Because I was patient number one with PRP for TN at the clinic, each procedure was slightly modified. Initially, I had about three months free from pain after each procedure. It was explained, the PRP, if correctly placed, pushes the nerve and blood vessel apart and then initiates healing. It was expected after a period of time, the nerve and blood vessel would come in contact once again causing pain. When this occurred, I would have another PRP treatment.
I’m ecstatic to say, PRP is the answer to my prayers. It’s been 10½ months since my last PRP. NO PAIN for 10½ months and counting! When there’s no pain, you can easily forget that TN was ever an issue! NO PAIN whatsoever. I’m praying the nerve and blood vessel will stay in place where they belong… apart from each other. If the pain reoccurs, you can be sure I’ll schedule another treatment with Dr. Markle.”
Beware of Trigeminal Neuralgia Stem Cell Treatment Scams
This treatment approach will only work if the doctor has the skill set to use ultrasound and x-ray imaging to target these very difficult to reach areas where the Trigeminal nerve is being irritated. That takes years of specialized training that just isn’t available at your local chiropractic or integrative medicine clinic where there’s usually a nurse or poorly trained physician performing the procedures. Precision placement using advanced imaging guidance is everything in this procedure.
While you, like this patient above, may have heard about a local office offering to treat Trigeminal Neuralgia with stem cells, that’s almost always a scam. First, the birth tissues they’re using have no living and functional stem cells. Our research lab proved that in our recent publication in the American Journal of Sports Medicine (10). Second, this treatment won’t work if an alternative medicine clinic gives you an IV treatment (in the vein in your arm).
The upshot? It’s great to see that the physicians at Regenexx HQ in Colorado continue to push the envelope of what’s possible with precision ortho-biologic procedures. The new Perc-TGN procedure is a big deal as these patients in severe pain have few good options.
(1) Centeno C, Markle J, Dodson E, et al. The use of lumbar epidural injection of platelet lysate for treatment of radicular pain. J Exp Orthop. 2017;4(1):38. doi:10.1186/s40634-017-0113-5
(2) Sowa Y, Kishida T, Tomita K, Adachi T, Numajiri T, Mazda O. Involvement of PDGF-BB and IGF-1 in activation of human Schwann cells by platelet-rich plasma. Plast Reconstr Surg. 2019 Aug 27. doi:10.1097/PRS.0000000000006266
(3) Sánchez M, Anitua E2, Delgado D, Sanchez P, Prado R, Orive G, Padilla S. Platelet-rich plasma, a source of autologous growth factors and biomimetic scaffold for peripheral nerve regeneration. Expert Opin Biol Ther. 2017 Feb;17(2):197-212. doi:10.1080/14712598.2017.1259409
(4) Senna MK, Shaat RM, Ali AAA. Platelet-rich plasma in treatment of patients with idiopathic carpal tunnel syndrome. Clin Rheumatol. 2019 Aug 16. doi: 10.1007/s10067-019-04719-7.
(5) Sowa Y, Kishida T, Tomita K, Adachi T, Numajiri T, Mazda O. Involvement of PDGF-BB and IGF-1 in activation of human Schwann cells by platelet-rich plasma. Plast Reconstr Surg. 2019 Aug 27. doi: 10.1097/PRS.0000000000006266.
(6) Shen YP, Li TY, Chou YC, Ho TY, Ke MJ, Chen LC, Wu YT1. Comparison of perineural platelet-rich plasma and dextrose injections for moderate carpal tunnel syndrome: A prospective randomized, single-blind, head-to-head comparative trial. J Tissue Eng Regen Med. 2019 Jul 31. doi: 10.1002/term.2950.
(7) Güven SC, Özçakar L, Kaymak B, Kara M, Akıncı A. Short-term effectiveness of platelet-rich plasma in carpal tunnel syndrome: A controlled study. J Tissue Eng Regen Med. 2019 May;13(5):709-714. doi: 10.1002/term.2815.
(8) Uzun H, Bitik O, Uzun Ö, Ersoy US, Aktaş E. Platelet-rich plasma versus corticosteroid injections for carpal tunnel syndrome. J Plast Surg Hand Surg. 2017 Oct;51(5):301-305. doi: 10.1080/2000656X.2016.1260025.
(9) Sánchez M, Anitua E2, Delgado D, Sanchez P, Prado R, Orive G, Padilla S. Platelet-rich plasma, a source of autologous growth factors and biomimetic scaffold for peripheral nerve regeneration. Expert Opin Biol Ther. 2017 Feb;17(2):197-212. doi: 10.1080/14712598.2017.1259409.
(10) Berger DR, Centeno CJ, Kisiday JD, McIlwraith CW, Steinmetz NJ. Colony Forming Potential and Protein Composition of Commercial Umbilical Cord Allograft Products in Comparison With Autologous Orthobiologics. Am J Sports Med. 2021 Aug 16:3635465211031275. doi: 10.1177/03635465211031275. Epub ahead of print. PMID: 34398643.
Chris Centeno, MD is a specialist in regenerative medicine and the new field of Interventional Orthopedics. Centeno pioneered orthopedic stem cell procedures in 2005 and is responsible for a large amount of the published research on stem cell use for orthopedic applications. View Profile
If you have questions or comments about this blog post, please email us at email@example.com
NOTE: This blog post provides general information to help the reader better understand regenerative medicine, musculoskeletal health, and related subjects. All content provided in this blog, website, or any linked materials, including text, graphics, images, patient profiles, outcomes, and information, are not intended and should not be considered or used as a substitute for medical advice, diagnosis, or treatment. Please always consult with a professional and certified healthcare provider to discuss if a treatment is right for you.
We have a community of people living with trigeminal neuralgia who we have connections to through face to face and online support groups and our media platform of website, Facebook, Instagram and ENEWS digital newsletter.
The following article was published via Beyond Blue and explains why connection can improve mental health.
Feeling connected to others plays a key role in our mental health and wellbeing. Discover why connection is so powerful – and how you can have more of it in your life.
How much social connection we seek out varies from one person to another, but one thing’s for sure – as humans, we share a fundamental need to interact with and feel connected to others.
“We are social creatures by nature,” says Relationships Australia National Executive Officer, Nick Tebbey. “That feeling of belonging and being connected is really important for our wellbeing.”
Research backs that up, with a 2017 study finding that social connectedness and mental health are not only inextricably linked, it tends to be connectedness that promotes good mental health rather than the other way around.
“On the other hand,” says Tebbey, “we know that feeling isolated and lonely has a significant impact on our mental and physical health.”
The many faces of connection
What it takes to feel connected can be different for everyone.
“Connection doesn’t look the same for all of us and that’s actually a real positive,” says Tebbey. “It means we’re able to connect – and feel connected – in so many different ways, regardless of our circumstances.”
So, while some kinds of connectedness revolve around physically spending time with like-minded people or doing something unifying – such as being part of a sports team or a book club – others are far less organised.
“Sometimes all it takes is making the effort to say hello to a neighbour,” says Tebbey. “Even small acts like that foster a genuine sense of connection.”
A study of Relationships Australia’s 2019 Neighbour Day – an annual campaign that encourages people to connect with others in their community – proved exactly that. Those who made the effort to do something neighbourly experienced an increased sense of belonging.
“It doesn’t have to be your next-door neighbour or neighbourhood community either,” explains Tebbey. “Communities exist in many different forms, including those you belong to online.”
And don’t forget how nice it can be to receive something in the post. Letter writing may be a lost art but there’s something really lovely about knowing someone has taken the time to put pen to paper just for you. Our premier partner Australia Post have launched a special release stamp set to encourage people to stay connected. Learn more here.
Sometimes you don’t even need anything tangible or actual interaction with others to feel connected.
“A really good example of that was the ‘teddy bear hunt’ that popped up all over the world as a response to COVID-19,” recalls Tebbey. “Simply participating made you feel like you were a part of something and, through that, more connected.”
One explanation for that is the fact that connectedness is actually a subjective thing, which means it relies far less on hard facts, like how large your social circle is, and far more on what you believe, sense or feel.
“This subjectiveness explains why it’s possible to feel connected to a group of strangers, but also why you can sometimes feel lonely or unconnected among a group of people you know,” adds Tebbey.
Starting a conversation
If you are experiencing loneliness or struggling to feel a real sense of connection, Tebbey suggests speaking up or reaching out.
“Surveys we’ve conducted at Relationships Australia indicate that most of us are quite capable of recognising when we’re feeling isolated or lonely. However, we’re less well equipped to understand why we’re feeling like that, and, importantly, what we can do about it.
“Talking to people you’re close to about how you’re feeling and asking them for help – if you feel comfortable – can be a good starting point. It may even help you identify larger issues that you need to seek support around in order to feel more connected.
“And if you don’t have someone close to talk to or find that it doesn’t help, reach out to a support service like Beyond Blue.”
The Beyond Blue online forums are a great way to connect with people online in a safe and anonymous environment. Discussion topics cover anxiety, depression, suicide, and a range of other life issues. Anyone in Australia can participate in discussions, connect with others, and share their experiences with our community.
If you need assistance visit Beyond Blue’s support services. Our mental health professionals are available 24/7 on: 1300 22 4636. Click here for a web chat (3pm-12am AEST). Alternatively, contact us via email (responses within 24 hours).
For immediate support call Lifeline on 13 11 14 and in an emergency, always call triple zero (000)
We were recently contacted by a healthcare professional to gain information about helping a client who lives with trigeminal neuralgia and also wears glasses.
Trigeminal neuralgia and wearing glasses do not necessarily go together, but options are limited to putting up with the trigger pain, or to wear contact lenses. Many people find contact lenses are not an option for them, so what can help.
In Australia most of the population do wear sunglasses due to our climate, so even if you do not need glasses for reading, our community will have to deal with TN pain triggered from pressure around the nose and ears caused by glasses.
We have found one Company in Australia which offers options to improve the comfort of wearing glasses.
If you have any hints or tips how you deal with this issue, please share by adding comments to this article.
Let’s get real: If your glasses are sitting too low on your nose, it can feel uncomfortable AF. But there is a solution to ensuring your plastic frames are more snug, and it requires a hair dryer. According to LIVESTRONG, you can actually warm up the temples of your frames for 20 seconds with a hair dryer, and then bend them to adjust accordingly.
2. Adjust the Nose Pads on Your Metal Frames If They Feel Too Tight
There’s nothing cute about nose pinching (and I’m not talking about the kind your grandma does when she tells you you’re her favorite grandchild in the world). If your metal frames are pinching your nose, you can pull the nose pads away from each other a bit (delicately, of course), according to Frames Direct.
3. Look for Slippage
If you’re constantly pushing your frames up on your face, it might look like you’re giving everyone around you the finger. (Yes, it’s happened to me and I don’t want to talk about it.)
For this, you’ll have to invest in a tiny screwdriver to tighten the screws on each side of your frames. This CVS Health Eyeglass Repair Kit is a great purchase, as it comes with four screw sizes to fit a good majority of frames.
Lastly, if you’re new to the glasses lifestyle, you might find that the skin behind your ears is a bit sore or tender. Money Versed recommends breaking out a bottle of baby powder and applying it behind your ears daily until your skin adjusts to your new frames. You’ll smell fresh AF and feel comfortable. That’s a win-win, if you ask me.
by GEORGINA BERBARI and ALEXA MELLARDO – UPDATED: ORIGINALLY PUBLISHED:
This post was originally published on Aug. 27, 2017. It was updated on Aug. 22, 2019. Additional reporting by Alexa Mellardo.
Meditation and mindfulness has been shown to not only help with mental health , but also the management of chronic pain.
The Federal Government funded mindfulness App Smiling Minds is a highly regarded free online tool, to help mental wellness and mindfulness techniques and programs
We believe our community can benefit from online programs facilitating self management tools.
Below is a research article exploring mindfulness meditation techniques.
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Mindfulness is a state of awareness characterized by open and non-judgmental recognition of thoughts and sensations and an ability to resist the usual wandering of an individual’s attention. Usually achieved by meditation, mindfulness is recognized as a treatment for chronic pain. Evidence, thus far, has been characterized by poor quality trials and mixed results, but a growing body of research is further investigating its effectiveness. Despite inconclusive evidence, the inherent difficulties of mindfulness research, and problems of accessibility in rural settings, mindfulness meditation is an emerging treatment strategy for many chronic pain patients. This report presents the case of a patient admitted to a rural hospital in New South Wales, whose quality of life was severely impacted by chronic pain.
Keywords: Aging, Behavioral neurology, Pain,
Chronic pain is highly prevalent in rural Australia with a lack of holistic pain management services.[1–3] Chronic pain is complex in its etiology and lasts longer than 3–6 months, or beyond the duration required for normal tissue healing after an acutely painful event. Acute pain is mostly biological in nature, whereas chronic pain results from a combination of biological, psychological, and social factors and often requires a multifactorial approach to evaluation and management.[4,5] In Australia, one in every five people lives with persistent pain (i.e., 3.24 million Australians in total), and nearly 70% are of working age. However, referrals to pain specialists occur in <15% of GP consultations, whereas medications are used in nearly 70%. Access to holistic pain management services is especially poor in regional and rural Australia, with most multidisciplinary-care clinics located in major cities.1,2 Allied health professionals, who are expected to play a significant role in the non-pharmacological treatment of chronic pain, are underrepresented in rural areas. Further, those who are able to access pain services often wait months to be seen, with a median wait time of 85 days in provincial (non-capital city) clinics. Given these challenges, chronic pain patients are often difficult to treat in rural and remote settings.
Mindfulness is a state of awareness characterized by open and non-judgmental recognition of thoughts and sensations and an ability to resist the usual wandering of an individual’s attention. Usually achieved by meditation, mindfulness is recognized as an effective treatment for chronic pain. Evidence, thus far, has been characterized by poor quality trials and mixed results, but a growing body of research is further investigating its effectiveness. Meditation uses a distinct brain pathway – change in the cortical thickness in the brain – to deal with chronic pain. Studies reported that mindfulness meditation promotes cognitive disengagement and also induces a person’s body opioid system to reduce the feeling of pain.[8,9] Despite inconclusive evidence, the inherent difficulties of mindfulness research, and problems of accessibility in rural settings, mindfulness meditation is an emerging treatment strategy for many chronic pain patients.
This report presents a patient case admitted to a rural hospital in New South Wales, whose quality of life was severely impacted by chronic pain. As an adjunct to medication, mindfulness meditation became an important part of his treatment plan. This report highlights the effectiveness of mindfulness meditation and ends with a discussion of the difficulty accessing these services in rural Australia, and the role technology can play in improving access.
A Clinical Case in Rural Australia
Barry Davidson (pseudonym) was an inpatient at a rural hospital in New South Wales, Australia from July to September 2021. A 52-year-old T4 paraplegic, Barry had been admitted under the general surgeons for management of NPUAP stage 4pressure injuries from prolonged immobilization. The cause of these pressure injuries was Barry’s chronic abdominal and back pain, worsening dramatically over the previous few months to the point where any movement was painful. Living alone in rural New South Wales, it had become very difficult for Barry to continue managing his own care. While admitted, the surgical team investigated his abdominal and back pain. Blood tests and abdominal imaging found no pathology and a spinal MRI found old compression fractures of T4-5, now partially fused, but no acute pathology. He was further investigated for medical causes of his pain. Gastroscopy and colonoscopy were unremarkable, as were his kidney and liver function tests and full blood count. Ultimately, no cause of the chronic pain was identified. The network-wide chronic pain service was consulted, but they were only able to see Barry 3 weeks later, despite him remaining an inpatient. Due to the unfeasible waiting time for non-pharmacological services for chronic pain, he was commenced on oral paracetamol and 5–10 mg oxycodone by the Acute Pain Service, which worsened constipation and made him nauseous. He was then swapped to clonidine and rectal indomethacin. To encourage weaning of his dependence on opioids, he was also commenced on gabapentin and tapentadol. This regimen, however, led to a number of side effects including sedation and fatigue, so these were ceased in favor of duloxetine. Ultimately, he remained on regular oxycodone CR and PRN oxycodone and oxazepam. Barry was not fit to return to living alone; however, rural rehabilitation hospitals nearby thought that he was too complex to manage.
Barry was transferred to a smaller, rural rehabilitation hospital after 8 weeks as an inpatient, once his pressure injuries had healed. Despite this, the management of his chronic pain was still suboptimal. He recovered some function gradually with the help of nursing and allied health staff, while remaining on duloxetine, clonidine, indomethacin, oxycodone and oxazepam. Yet, his ongoing dependence on care prevented him from returning to his own home, and thus he was discharged to a residential aged care facility.
Management of Barry’s chronic pain
The management of Barry’s chronic pain within the inpatient setting and rural rehabilitation hospital was suboptimal. The chronic pain management in Australia is guided by the National Institute of Health and Care Excellence (NICE) guidelines. The first step is to treat any identifiable source of pain medically or surgically. Then, engage any of the non pharmacological therapies: Exercise, physical therapy, sleep hygiene techniques, behavioural and psychological therapies, healthy lifestyle interventions, or acupuncture. If there is an ongoing pain that interferes with normal functioning, pharmacological treatments may be added. For nociceptive pain, first line is NSAIDs; for neuropathic pain, there are a few options including antidepressants and antiepileptic drugs. If there is still insufficient response, opioids may be used, but only after consideration of severity of pain, and weighing the benefits and risks. A Cochrane review of opioids for long-term treatment of non-cancer pain found that continuation of long-term opioids led to clinically significant pain relief. However, the quality of the evidence in this review is weak; 25 out of 26 trials were case studies without controls, and the only randomized and controlled trial (RCT) compared two opioids. Evidence for other treatments, including physical activity and psychological therapy, is also weak, but these strategies are still advocated for.
The management of chronic pain in Barry’s case followed the above step-wedge approach, but limited access to non pharmacological services in the inpatient setting led to some divergence. The introduction of opioid analgesia came after excluding medical or surgical causes and high-dose oral paracetamol. Introducing the mindfulness meditation earlier may have reduced the need for opioid analgesia, but these strategies were difficult to implement in the busy inpatient environment and pharmacological options were preferred by Barry. While a resident in rural aged care facility, Barry began to engage in the meditation classes provided by a local meditation guide that visited the facility.
Effectiveness of mindfulness meditation in Barry’s case
Meditation became the most important part of his pain management in aged care facility. Barry attended weekly meditation sessions delivered to a group in an in-person setting. Over subsequent weeks, his participation steadily increased and his pain began to improve. Barry continued to attend the weekly meditation sessions over the following months and despite reporting that his pain was not completely resolved. In brief but noticeable moments of mindfulness, Barry has been able to focus on his pain, recognize it as an appearance in consciousness, and simply come to terms with it. On days that Barry meditates, he describes a lasting feeling that he is able to connect with feelings of pleasure and relief, even when at other times his pain is overwhelming. Barry was fortunate to have access to a meditation guide, as access to in-person meditation sessions is often rare in rural areas. Furthermore, Barry was unwilling to engage in online and app-based guided meditation, due to concerns of difficulty maintaining interest and enthusiasm. This may be a concern shared by many potential meditators and the regularity and commitment of an in-person program may improve engagement. However, a more flexible and individualized approach (such as through app-based courses) may still be preferable to many people.
The case that we have presented was initially an inpatient with chronic pain, who were referred to a rural residential aged care facility because of his ongoing dependency on care for pain. The strength of this case is the illustration of a step-wedge way of managing chronic pain in a monitored setting following the NICE guideline. However, the limitations were: (i) mindfulness meditation and low access to non pharmacological services, like mindfulness meditation in the inpatient setting; (ii) lack of individualized approach in therapy; and (iii) unwillingness to engage in online and app-based guided meditation. An understanding of and engagement with mediation as well as adequate access to such therapy in rural health-care settings would enhance the chance of managing chronic pain in a successful way.
In Western cultures, meditation is typically associated with yogis, hippies, and “self-help gurus,” has struggled to break from its Buddhist roots, and become established in an increasingly secular society. Dan Harris, an American news anchor, wrote a book about meditation after stumbling on the practice whilst working as a “religion correspondent.” This author asserts that the problem with meditation is that “its most prominent proponents talk as if they have a perpetual pan flute accompaniment,” but, “If you can get past the cultural baggage…you’ll find that meditation is simply an exercise for your brain.” Commonly, meditation sessions involve focused awareness on an appearance in consciousness, such as the sensation of breathing or the feeling of one’s body while sitting in a chair. Humans are constantly distracted by thought and meditation is the practice of recognizing these thoughts merely as appearances in our consciousness, just like sensations, and then re-orientating oneself to the practice. Each time one notices, they are lost in thought, the act of bringing attention back to the breath or sensations acts to train the mind. Mindfulness has been found to regulate the sensation of acute and chronic pain, improve cognition, and treat anxiety and depression.
Mindfulness-based stress reduction (MBSR) is a therapy developed by Jon Kabat-Zinn at the University of Massachusetts.[20,21] It typically involves a standardized course of 8 weeks of mindfulness meditation sessions, performed once-weekly for 1.5–2.5 h [Figure 1].[8,22–25] There has been important research in the last decade investigating the role of MBSR in the treatment of chronic pain,[21,25–27] with inconsistent results. A number of studies show reduced pain intensity in groups treated with MBSR,[24–26,28] but these improvements may be short lived. The mechanism by which pain is reduced in these patients has been postulated to be through the effects of medication on psychological factors. Indeed, a number of studies find that the benefits of meditation are most prominent in reducing symptoms of depression and anxiety and improving psychological functioning.[23,27,29] One important trial, conducted on older patients in in whom pharmacological analgesia is often complicated by adverse effects, found that MBSR led to improvements in chronic pain. The MBSR approach is fairly common in the literature and has the largest evidence base supporting it; however, there is considerable heterogeneity in the format used depending on billing structure, type of session (guided vs. silent), and other factors. The approach taken by Barry involved ongoing weekly sessions 30 min in length, as facilitated by the meditation guide.
Approach to the treatment of chronic pain, highlighting the role of mindfulness-based stress reduction.
Mindfulness is often associated with cognitive behavioral therapy (CBT), as there are many similarities between the two practices. Both are psychological therapies that encourage the practitioner to examine their thoughts, emotions, sensations, and behaviors. The techniques used in these practices, including deep breathing and self-reflection, are also common to both therapies. CBT has been studied since the 1980s but recent reviews suggest only a small to moderate effect on pain, with some patients receiving no benefit.[30,31] Further, a number of studies have compared MBSR and CBT. A systematic review in 2011 found that MBSR was no better than CBT in the treatment of chronic pain, but it may be a good alternative. Despite the low quality evidence, the authors recommended therapies that combined both mindfulness and behavioral therapy. In a larger, randomized, and interviewer-blind trial, MBSR and CBT were both found to improve chronic low back pain compared to usual care, with no differences identified between MBSR and CBT. In one RCT of patients with rheumatoid arthritis (RA), CBT conferred the largest improvement in pain, but meditation was more beneficial in RA patients with psychological manifestations of their pain. The poor quality of many of the studies, however, makes it difficult to conclude the effectiveness of MBSR in treating chronic pain, as noted by a systematic review in 2012. A more recent RCT of 109 patients found no significant differences in pain measures between MBSR and a wait list control. Access to psychological therapies such as CBT is often difficult in rural areas. Improvements in technology, such as telehealth conferencing, may improve access to CBT, but the individualized therapy prohibits the scalability offered by online and app-based guided meditation services. Although technology may allow those in rural areas to access CBT services provided in metropolitan areas more easily, the format of one-on-one therapy may limit engagement due to wait times for appointments and out-of-pocket costs.
There are inherent difficulties in performing high quality trials of mindfulness in medical research. Measuring mindfulness is difficult and there is little consensus as to the components of the mindfulness experience. Much of the research involves self-reporting of results, which exposes trials to significant response bias. Further, problems emerge when designing control interventions, as many trials involve wait-list controls, where the control group is given no intervention for the study period, then offered the intervention at a later date. Another factor that compounds inconsistency of intervention is the modification of MBSR, leading to variability in the intervention given and reduced generalizability. There are also significant difficulties in elucidating the dose-response relationship of mindfulness, as measuring both the dose of meditation and the response to it is abstract and challenging. Some practitioners achieve benefit almost immediately and some require years of practice.
Further research should prioritize quality and comparison using quantitative measures, where possible. Structured measurements of mindfulness may be used, including scales such as the Mindfulness and Attention Awareness Scale and the Frieburg Mindfulness Inventory. A pain assessment in patients before and after the mindfulness session, using the appropriate scale such as Numerical Rating Pain Scale, Wong-Baker Faces Pain Scale, FLACC Scale, CRIES Scale, COMFORT Scale, or McGill Pain Scale would be a better scientific approach to such case study. These measures may allow for quantitative analysis of the effects of meditation and allow for correlation with pain scores. Empirical evidence of the extent of mindfulness may also reveal the most effective meditation techniques, including in specific subpopulations such as those with chronic pain. In addition, the future studies should incorporate active control groups and standardized mindfulness interventions, to promote comparison between different treatment modalities and to encourage adoption of mindfulness on a larger scale. High-quality RCTs using quantitative measurement of mindfulness and active control groups in chronic pain patients are needed.
There remains the problem of access to meditation services, especially in regional and rural areas. Access to guided meditation can be difficult and expensive. Classes and retreats are often fully booked with existing clients and those taking new clients are expensive. The Meditation Association of Australia suggests fees of up to $400/h for sessions delivered to community groups and $1000/h for businesses.
Practical steps in mindfulness meditation prescribing in rural areas
Technology has improved access to many health-care services for patients in rural areas. These services include pain management and research has suggested that delivery of meditation sessions through teleconferencing may be effective. Furthermore, access to mindfulness meditation services in rural areas has been transformed by the development of online and app-based resources. Many of these resources involve pre-recorded, guided meditation sessions, and delivered at a time of the practitioner’s convenience. In the era of COVID-19, when most group therapy sessions have been cancelled, these resources are especially relevant and may be preferable for many people. There are a variety of programs available online and to download. Some, such as Smiling Mind, Insight Timer, UCLA Mindful and Healthy Minds offer free access to meditation sessions. Some other apps, such as Headspace, Calm, Waking Up, and Stop Breathe Think, require a paid subscription, but often include extra content such as podcasts. Evidence for app-based delivery of mindfulness meditation in the treatment of chronic pain is lacking, but it represents a low cost, safe, and accessible option for patients in rural areas with less access to traditional services. Rural health practitioners may consider these emerging technologies when dealing with a multi-pronged approach to chronic pain.
The search for effective chronic pain treatments is ongoing, but there may be further benefit gained from existing strategies, such as mindfulness meditation and CBT. Our case clarifies the effectiveness of mindfulness, but lack of access to services was evident. It is a reasonable choice for clinicians to advocate for, due to its negligible harms, additional psychological benefits, and increasing accessibility through technology. Access to meditation services in rural and regional Australia may be challenging, but online and app-based programs may provide a new avenue for the treatment of chronic pain.
The search for effective chronic pain treatments is ongoing, but there may be further benefit gained from existing strategies, such as mindfulness meditation and CBT. Our case clarifies the effectiveness of mindfulness, but lack of access to services was evident. It is a reasonable choice for clinicians to advocate for, due to its negligible harms, additional psychological benefits, and increasing accessibility through technology. Access to meditation services in rural and regional Australia may be challenging, but online and app-based programs may provide a new avenue for the treatment of chronic pain.
Financial support and sponsorship
How to cite this article: Bishop ME, Hamiduzzaman M, Veltre AS. Mindfulness meditation use in chronic pain treatment in rural Australia: Pitfalls and potential – A case report. J Neurosci Rural Pract 2023;14:516-21
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent.
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