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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.


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How to Support a Partner with Chronic Pain

The question is often raised at our support group meetings – how can I support my partner with chronic pain.  It is so hard to watch someone you love cope every day with debilitating pain.

Oh if only you had a magic wand.  How many of us go to bed thinking, “maybe tomorrow they will wake up and the pain will be gone”.

Oh course always have hope, but while we wait for a miracle or a treatment that works for our partners particular circumstances, what can we do?

Supporting a partner or loved one with chronic pain is difficult. Whether you’re having to cope with the transition from being pain free, or entering into a relationship with someone suffering from an existing condition, you’re still going to have to learn a whole new set of skills if you’re going to make the best out of what can at times be a difficult situation.

15 Ways To Support A Partner With Chronic Pain

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How to Help People With Chronic Pain or Illness

This article was written by Liz the owner of the Despite Pain Blog .  The article contains links to other content that you may find useful.

Liz suffers from scoliosis (a curvature of her spine) when she was about ten years old. Initially, the orthopaedic surgeon said it was a cosmetic problem and no surgery was needed. But it wasn’t just a cosmetic problem. It started causing chronic back and rib pain when she was a teenager. The scoliosis worsened and when she was eventually referred to see a specialist, he could do nothing to help. Her pain continued to worsen, became constant and eventually, when she was 28, she had to retire from work.

Her back pain was chronic and disabling, but she lived with another pain condition that is just as debilitating. Trigeminal neuralgia, which causes severe facial pain. For an unknown reason, the trigeminal nerves in her face send pain signals to her brain.

In 2017, she was also diagnosed with the autoimmune condition, coeliac disease.

She has lived with chronic pain for most of her life, but try’s to keep smiling.

Click here to find out more about Liz.

10 Suggestions on How to Help People with Chronic Pain or Chronic Illness

If you have a friend or relative who lives with chronic pain or a chronic illness, the following suggestions are ways in which you could possibly provide physical help and support.

1. Believe Them

Believing them is the most important and supportive way to help people with chronic pain or illness.

Believe them when they tell you about their pain or illness. Believe them if they tell you that their life is difficult and that they’re struggling to cope. Believe them when they say their pain is off the charts. Believe them when they say they feel depressed. Please, never doubt them.

They need your empathy and understanding and that starts by letting them know that you believe them.

2. Listen to Them

Listen to them. Really listen.

If you ask them how they are feeling, please listen to the answer. There’s no point in asking otherwise.

Tell them that you are there if they want to vent. Many people feel they can’t or shouldn’t do that so tell them that you don’t mind listening.

They might say they’re fine when you know they’re not. So say, “I know you say you’re fine, but it’s okay to be honest with me.” If they still say they’re fine, don’t push it. Some people simply don’t like talking about their health or they might not be in the mood for opening up.

Never repeat what they tell you – if they feel comfortable enough to talk to you, don’t betray them by repeating what they say to others. You’ve gained their trust so don’t lose it.

3. Learn About Their Condition

Try to learn about their condition and how it affects them so that you understand more. I’m not suggesting you need to learn enough to obtain a medical degree, but if you learn a little bit, it will let them see that you are actually interested rather than being there out of a sense of duty.

4. Empathise

Empathise with them, but don’t tell them you know exactly how they feel. You might get an occasional bad headache, but that’s not the same as living with trigeminal neuralgia or chronic debilitating migraines. Even if you suffer from the same condition, everyone’s experience is different so, in reality, you don’t really know exactly how they feel. Empathise and tell them that you appreciate that their life can’t be easy.

5. Be There

Living with chronic pain or chronic illness can be a lonely life. Sometimes people just need a friend so give them your time.

They don’t need or want to talk about their pain or illness all the time. They don’t want pity or sympathy. Nor do they want to be treated with kid gloves and they do not expect you to be a nursemaid. They want to feel normal, do normal things and have normal chit-chat with you.

They need distractions from their health. You could share a meal with them, help them with a hobby or just sit with them to play a board game or enjoy a movie together. You could take them for a drive, go for a walk or take them shopping if they’re able. If you do this, please go at their pace so they don’t feel as though they’re holding you back, otherwise they will feel guilty. Talk about other things, including yourself. Talk about your own troubles if you have any because they still care about what’s going on in your life.

6. Help with Appointments

Offer to take them to their medical appointments. They might need your help getting there or they might be grateful for some moral support or an extra pair of ears during the appointment.

7. Offer Practical Help

Living with chronic pain or illness is debilitating, therefore simple tasks are often more like huge, possibly impossible, chores. They might be grateful for your help with some basic housework, making a meal or doing some shopping. Or perhaps you could help by picking their kids up from school or walking their dog occasionally.

But be tactful about how you offer your help as it may be construed as criticism.

For example, don’t tell them that their house needs to be cleaned. Instead, tell them that you realise that some chores must be extremely difficult due to their pain or illness, and you’d be happy to help out with something they find too difficult.

Try to offer help in a way that it’s easier for them to accept. For example, say, “I will be at the supermarket tomorrow, so it will be easy to pick up some shopping for you while I’m there.” That way, they know that you are already going to the supermarket, so you aren’t going out of your way just for them.

Offer help but try to understand if your kind offer is turned down. They might feel embarrassed, or they may still want independence so if they repeatedly say they don’t need or want your help, accept that and back off. Rather than be upset or take offence, simply tell them that you’re there if they ever need you.

8. Be Inclusive

When people are living with pain or illness, they might not be well enough to attend social events but please invite them anyway. They might not be well enough to come to your birthday party or to meet for coffee, but they also don’t like to feel excluded, so invite them and let them decide.

If they say yes, they might have to cancel or leave early due to their illness getting in the way. If that happens, don’t take it personally. Try to understand that it’s out of their control and accept that their health can be unpredictable. They are probably embarrassed and annoyed with themselves, so a little understanding will go a long way.

9. Don’t…

There are a lot of things you shouldn’t do or say. Here are a few:

    • Please don’t abandon them. Their pain or illness might get in the way, but they still value and want the relationship they have with you.
    • Never suggest that they shouldn’t take their medication or that they take too much. If you have a serious concern that it could be making them ill, suggest they speak to their doctor.
    • Don’t insinuate that they can’t be trying hard enough by telling them that your amazing friend has the same condition but is able to do so much more than them.
    • Don’t minimise their pain or illness by saying things like, “Well, it could be worse…” or “At least it’s not cancer.”
    • Don’t be dismissive of their symptoms or feelings and don’t tell them how
    • they should feel. Their pain or illness is real. Their feelings are real and valid.
    • Never suggest that they just need to give themselves a shake, pray a bit harder, go for a brisk walk or be more positive in order to feel better. Statements like that undermine them and their condition. They are also patronising and extremely rude.
    • Avoid suggesting strange herbal concoctions which are advertised online. Most of those strange herbal concoctions are expensive snake oil cures.
    • And please don’t suggest that they drink a kale and turmeric smoothie to cure their ills. If you do, you might get said smoothie tipped over your head.

10.Bring Chocolate

Unlike kale and turmeric smoothies, chocolate is nearly always welcome. So, bring on the chocolate. Or cake. That works too.

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President’s Monthly Musings – Aug 2022 – Quality of Life

We are currently on a weeks break in Evans Head In Northern NSW, one of our favourite places to bring our caravan, and we all need to find a place, could be next door or down the street, to give us a break, even if only for 15 minutes.  The campsite we use  has everything we need and is right next to the beach and with new roads it is a 2 hour trip from home

It is so important to do what you can to improve physical and mental health and this place is a little slice of heaven so it feels impossible to be miserable here

Patrick my husband has always loved the water, preferably the sea but a river or a lake will do.  He has always been a super active man, serving in the British Army for 9 years, competing in marathons, just a few seconds off cracking the 3 hour marathon back in the day.  Then came his Martial Arts period where he achieved a Black Belt in Jujitsu.  Then to challenge himself further, he took up triathlon competing and then competed in the longest day Iron Man challenge of swimming 2.4 miles, 112 mile bike ride followed by a 26.22 mile run.   Not without drama and the devastation of a fall from his bike which stuck his railing in a high gear for most of the ride.  Damn the rain, but he didn’t give up, upset that he didn’t get the time he wanted, but came in under 13 hours.  Imagine the sheer determination that must have taken

When we arrived in Australia in 2002 he was looking forward to competing in the local Gold Coast triathlon scene….but then he was diagnosed with a stuffed hip….so running was out of the question, so he turned to surfing.  Two hip replacements later and the busyness of life, career and family, surfing stood the test of time.  Any time Patrick can get into the water he is a happy man

And then came a whole load of medical conditions that it seems unfair one person has to carry, psoriatic arthritis, peripheral neuropathy, carpel tunnel in both wrists and bilateral Trigeminal Neuralgia.  Of course diagnosis was difficult due to the complexities of other conditions, and  all through these difficult years, Patrick has found his happy place in the water.  Whether he is in pain or not, he gets up and surfs most week days (weekends are too crowded), and if the surf is bad he joins me on my morning walk up the hill, and has recently discovered wake boarding

I was walking the beach today while he surfed, the expanse of sand practically empty of people, a few gulls and the odd person walking their dog.  I was listening to the sea , waves crashing,  sand sucking, water lapping around my ankles, and I sighed deeply, just letting the moment transport me into happy thoughts

It got me thinking about how our brains fight against us to present us with unhelpful thoughts or remind us of our hard time or our failures.  I have recently been doing some research on Psychology and Cognitive Behaviour Therapy to provide training aids for our Support Group Leaders, and that process has shown me the power of positive thought or happy memories.  It is so hard to be positive when you are succumbing to chronic pain every day, but it may be easier to focus on better times or things that make you happy

We sat with a glass of wine yesterday and recounted some of our high spots things we have done, laughed about our silliness and just revelled in remembering those times.  It was fun and took our minds off the pain and things that have to get done.

Recently when I dropped into our sons house (we live on the same property so that can be a daily occurrence), I noticed he had a rotating file of pictures of himself and his family doing fun things – laughing – living accompanied by the music he is into right now.  I said “wow that’s cool I love that”, and he said “yes it reminds me of how far we have come, and the great times we have had, it makes me happy”, “I keep moving onto the next project and don’t take time to just enjoy the past so this makes me appreciate life”.   Thankfully he is in good health – although he laughingly threatens his Dad not to have passed all the bad genes to him

I don’t suffer chronic pain, but as a family it confronts us everyday, I just wish I had a magic wand…..

So the power of music, pictures, memories all have been linked to positive and happy thoughts which help you cope and improve mental health.  Time to bring out the music you love,  print out some happy pictures and put them on the fridge, or get your tech savvy youngsters to set up your digital photos to scroll your TV.  Take time out to remember happy memories and go to places that just make your heart sing

The sound of the ocean – just makes us happy nothing else matters 

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Presentation by Karen Smith – Her experiences living with Chronic Pain

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

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

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What Patients Need To Know About the Differential Diagnosis Of Facial Pain

The Facial Pain Organisation has released the next presentation from the Conference held in January 2022

The presentation is by Dr Donald Nixdorf and is packed with really useful tips how to communicate with your care providers, and some of the issues that are encountered not only from the patients perspective, but from the clinicians view too

Dr. Nixdorf is a Professor and Director of the Division of TMD & Orofacial Pain. His clinical and teaching interests include the diagnosis and management of chronic TMD pain, headaches and neuropathic pain. His research is focused on the topic of persistent non-odontogenic “tooth” pain, looking at issues related to classification (e.g., consensus building), diagnosis (e.g., development of criteria, imaging, screening questionnaires), epidemiology, (e.g., determining predictive factors, assessing of impact), exploration of mechanisms (e.g., sensory testing, functional imaging), and treatment options.

Dr Nixdorf clearly describes how miscommunication can prevent a positive outcome in diagnosis and treatment

One of his major tips for orofacial pain sufferers, is to create a timeline of what has happened to you

  1. When did the pain start
  2. What medical practitioner have you seen
  3. Have you had the help of a clinical psychologist
  4. What medications have you taken
  5. Did they work and for how long

He was clear that the timeline did not have to be 100% accurate, nor did you need to compile a huge novel.  What is important, is in order for your practitioner to help they need guiding to the bullseye, so when they offer a diagnosis, it is not a scattergun approach

We do know that when dealing with chronic pain it is difficult to remember or organise thoughts, so perhaps when you are have a good day, start the process of recording your journey

Trust is so important when you are on the diagnosis journey, so everything you can do to help your practitioner get to the root of the problem will build trust between you

We have loaded this excellent presentation onto our Digital Outreach and Training /  Video Presentations and urge all sufferers to take the time and watch this presentation.

Watch Video 010

If you are not a member, then head over to the Facial Pain Associations site

Home – Facial Pain Association (



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A Personal Story – Living with Trigeminal Neuralgia

It is so important we hear from people who suffer from Trigeminal Neuralgia who are willing to share their personal stories

I came across this story in twitter, written by David Flint with a career and all the usual distractions of daily life






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Chronic Pain – Learning to Pace

We are all very different in the way that we individually tackle chronic pain, and the effect that has on all aspects of life.

This article was written for the website and it contains great insight on working to create a better way to live with chronic pain


4 Things To Remember When Pacing For Chronic Illness, Fatigue Or Pain

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Chronic Pain and Anxiety: How to Cope

Managing Anxiety is very important when you suffer  chronic pain from Trigeminal Neuralgia

The following article was written by Kathleen Smith, PhD, LPC and has some helpful advice

Is your chronic illness causing you to suffer from chronic anxiety? Do you feel like you have no control of your body OR mind? Follow these tips on how to cope when your chronic pain causes anxiety

If you’ve been diagnosed with a chronic illness, you may feel as if you have no control over your future. The stress of learning to navigate the medical world, cope with physical changes, and manage daily life can often lead to excessive worry or panic.

Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.  People with chronic pain are three times more likely to develop symptoms of anxiety.

Even long after a diagnosis, the daily demands of living with a chronic illness can continue to present challenges and generate anxiety. Loss of mobility or other abilities can lead to worry about safety, employment, or financial independence. Depending on others or engaging in sexual intimacy may also be concerns. Some are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope.

Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience

Signs of Anxiety in Patients with Chronic Illness

  • Excessively worrying about physical health
  • Trouble sleeping due to worry
  • Having nightmares about physical health
  • Experiencing panic attacks about prognosis
  • Difficulty discussing physical condition
  • Avoiding treatments that cause anxiety
  • Avoiding social interactions
  • Having intrusive thoughts about dying
  • Becoming irritable about physical health
What You Can Do

Challenge negative thinking.  When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness.

One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts.

Counselors/therapists can play an important role in teaching you this important coping skill.

Calm your mind.  Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body.

Taking  time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.

Find a good prescriber. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.

Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges.

Support groups are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness. Check with your local hospital or community center to find a local group. You can also search the Internet for online support.

Recruit the right team. Patients benefit the most when chronic illness and psychological distress, such as anxiety, are treated with a team of people who communicate regularly. Doctors, pain specialists, psychiatrists, counselors, occupational therapists, and physical therapists are among those who can help you create and implement a treatment plan for your physical and mental health.

Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.

If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable