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Our members generously share their hints and tips to assist other community members.
Living with a condition like Trigeminal Neuralgia can be a challenging and often isolating experience.
Gratitude, empathy and mindfulness have emerged as powerful tools to navigate the challenges posted by TN. Inspired by the book The Resilience Project by Hugh van Cuylenburg, I have embraced the GEM framework, all of which have become part of my coping strategy. Practicing gratitude has shifted my focus from the pain to the positive aspects of my life. Empathy has helped me connect with others who may be experiencing their own challenges similar to the camaraderie found among members of our support group. Mindfulness meditation has helped in managing the mental and emotional toll of the condition.
As part of my ongoing journey towards self-care and coping, I recently incorporated the “The Smiling Mind” app into my routine. This free app offers a diverse range of meditations, including those focused on mental fitness, calmness, stress reduction and sleep. The sleep meditation exercises on the app have been particularly effective for me. The soothing guidance provided by The Smiling Mind app have improved my sleep quality contributing to an overall improvement in my wellbeing.
I hope this helps others in similar situations to explore these techniques and discover their own personalised methods of coping.
If you would like to try the app please find link and details below
Mental wellbeing to support sleep, meditation and mindfulness and reduce stress
Smiling Mind is Australia’s leading digital-led, prevention focussed mental health not-for-profit and the innovators behind Australia’s most trusted mental wellbeing app. The Smiling Mind App is a free tool, developed by psychologists and educators and downloaded by millions of people..
Programs in the app are underpinned by mindfulness and positive psychology strategies and designed to build mental fitness and resilience; support good sleep, study and sports training; reduce stress and improve relationships; and promote the development of new social and emotional skills..
Whether you have half an hour, or just a couple of minutes in the day, you can learn, build and practise the skills to build mental fitness and improve your mental health anytime, anywhere . Find programs tailored for children aged 3 years and older, young people and adults as well as dedicated family programs.
Members Corner is our place to interact and pass on hints and tips.
Our association interacts with people living with trigeminal neuralgia online, face to face and by phone. We often hear stories about how people have learnt methods to cope with day to day management of trigeminal neuralgia.
This month’s tip is provided by Tina Stubbs who lives in Coolum Queensland and is a very talented photographer. Check out her stunning images on Instagram
I would just like to pass on a couple of tips that are helping me cope at the moment.
I had an MVD in March 2022, had a mild recurrence in October, controlled with 100mg Tegretol, which settled down after a couple of months.
Another flare up in the last couple of months. This one is stronger and not well controlled with 300mg Tegretol. I’m reluctant to take more Tegretol because it affects my sodium levels.
My sensitive areas as usual are my left cheek, nose and upper lip.
I’m coping with frequent use of lignocaine- Numit cream on my sensitive skin and applied with a cotton bud inside my nose. Also oral liquid inside my mouth. I use these before meals, before cleaning my teeth or blowing my nose, or anytime I feel sensitive. It lasts an hour or so. Without this I I would be climbing the wall and would have to increase Tegretol.
The other tip I have discovered by trial and error. I have never seen this mentioned before. Wiping my face from the centre outwards- the normal way I would wash my face or apply moisturiser etc- is a strong trigger. But I have discovered that wiping from the outside of my face towards the centre does not usually trigger the pain. This makes a vast difference in my daily routine! It makes sense when you consider it is wiping down the nerve rather than wiping up from the nerve ends!
Just thought I would like to share, it might help someone else.
The last month since being elected as President has been extreme, to say the least. I’m amazed at how much work there is to be done. I’m also amazed at how much work others do to help our organisation. It’s been a little bit frantic and sometimes overwhelming however, it’s been rewarding. I have learnt to self-manage rather swiftly whilst maintaining a balance between family commitments and maintaining a work relationship between the two passions in my life. Family and Trigeminal Neuralgia with a lot of self-care along the way.
I’m also excited to say that I undertook a rather documented role with my Droctor. I am receiving a treatment called Low level Light Therapy, which hasn’t been documented for Trigeminal Neuralgia and so I became the specimen in my Dr’s. journey, and mine I might add.
I can say that after two treatments of LLLT I am pain free. Something I never thought was possible however, clinging tightly onto HOPE, I appear to be getting relief from my pain.
This is something that my Doctor and I embarked upon, each making documented journal entries along the way.
This may be something that we’ve touched upon that others don’t know yet. This has been one of the most rewarding months. This illness has made me humble; it’s shown me what IS important in life. My family deserves a medal for being by my side every step of the way.
“If we have hope, we have everything.”
I look forward to working with and providing help and Hope to so many more.
Watch this space.
further information on low light therapy can be found here
FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 6.1 A Summary of Research on Medical Marijuana for Neuropathic Facial Pain By Anne Brazer Ciemnecki, MA specialist in health and economic policy (USA). The intent of this section is to provide sufficient information about medical marijuana so that those with trigeminal […]
FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 5.2 Acupuncture Gary Stanton, MD Acupuncture is an option in the treatment of TN. Acupuncture was developed in China 2,500 to 3,000 years ago, or perhaps even earlier than that. Traditional acupuncture was conceptualized in traditional Chinese terms, with constructs such as […]
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.
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.
Nick explained that a quarterly webinar is offered from within his organisation and can be accessed on the bellow link
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.
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 –
Dr. Deborah Barrett offers a framework and tools to help people improve their quality of life, just as they are, while also reducing pain and suffering. Her work draws from empirically based cognitive and behavioral interventions, and she practices what she preaches every day.
We thank the FPA for the great work they are doing publishing webinars in this field.
FACIAL PAIN: A 21st CENTURY GUIDE 4 What to Do When Your Surgeon Says There is Nothing Left to Do For People with Trigeminal Neuralgia Neuropathic Pain By Jeffrey A. Brown, MD (USA) You think you will have a microvascular decompression (MVD), but there is no compression. Your pain returned after your MVD, and your doctor […]
When Trigeminal Neuralgia pain is too much: presenting to the emergency department for pain management
In July 2022 we were delighted to host a webinar chaired by A/Prof Liam Caffery and presented by Prof Arun Aggarwal
Professor Arun Aggarwal is a highly experienced neurologist with expertise in chronic pain management.
Professor Aggarwal graduated from the University of Adelaide in 1987 and went on to specialise in neurology, rehabilitation medicine and pain medicine and is a Fellow of the Royal Australasian College of Physicians, the Australasian Faculty of Rehabilitation Medicine, and the Australasian Faculty of Pain Medicine.
Professor Aggarwal completed his PhD at the University of Sydney on motor neuron disease. He currently oversees a number of research trials at the University of Sydney’s Medical School including trials on trigeminal neuralgia and chronic neuropathic pain.
Professor Aggarwal sits on the on the Medical Advisory Board of Trigeminal Neuralgia Association.
In this webinar he will speak on “When trigeminal neuralgia pain is too much: presenting to the emergency department for pain management”
Our Association is working hard to provide clearly understood information, not only to our sufferers but to the medical and dental profession. We thank all who logged in to watch the webinar live and they had the opportunity to ask questions and receive replies.
We would like to thank our Medical Advisory Board Members for the work they do and the advocacy they provide to all sufferers. Contact details for our MAB members can be found here
012 – YouTube TNAA – Prof Arun Aggarwal – When Trigeminal Neuralgia pain
is too much Presenting to the Emergency Department