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Trigeminal neuralgia pain can ruin a life. The following story was written by Penelope Debelle for SA Weekend – 21 min read November 14, 2014 – 11:41PM See our LINKS page for mental health organisations
The secret agony of jewellery designer and philanthropist Ann Middleton
JEWELLERY designer Ann Middleton was the life of the party but behind her smile lay a pain she could bear no more.
IT was Friday, July 25. Ann Middleton, the jewellery designer whose Burnside shop, Chez Jewels, has a clientele of a certain kind, checked into a luxury high-rise hotel on the Gold Coast. She had a small bag and told reception she would be there for a night, possibly two. I’ll see how I go, she said.
In her room the airconditioning was up too high so she asked that it be turned down. Then she requested a glass of wine and one was brought up to her room. By the time the concierge clocked off 15 minutes later, someone had jumped from the building. It was Middleton.
“She just got up there and … hmmmm …” Brother Phil McMahon’s voice trails off as he contemplates what his sister went through. Middleton had rung him the night before for a chat which had taken on new significance.
“We talked about a lot of stuff actually,” says McMahon, a real estate identity as well known in his field as Middleton was in hers. “She got really spiritual, that was Thursday night.”
On the day, Middleton told the girl who ran her high-end Gold Coast shop, Marina Mirage Boutique, she had to go to hospital because she was in so much pain. Instead, she went to lunch with a client then checked into the hotel.
“It wouldn’t have been impulsive,” McMahon says. “There’d been signals all the way along. She was always saying ‘I love you’. ‘Yes, I love you too.’ ‘No, I really, really do, you know that don’t you?’ That was said in the last phone call.”
Middleton suffered from face pain brought on by a condition known as trigeminal neuralgia. All neuralgias are bad because they involve paroxysms of pain along a nerve. It isn’t the chronica che of a bad back or the searing, localised hurt of an open wound. It is the agonising exposed pain you get fleetingly when the dentist hits a nerve and sends you almost into shock. An instant of it can leave you gasping. Trigeminal neuralgia, which affects the branching nerves that enclose the face — including the nose, lips, ears, tongue, jaws and teeth — is so severe the sufferer feels as though they are being struck by lightning, again and again. The merest touch of the skin triggers blinding pain.
“I’d wake up in the morning, jump in the shower and just the water on my face would set it off,” says Kent Parkin, a real estate agent based in Mt Barker. “I hate to say it, but I can understand why she jumped.”
It is known as the suicide disease because exhausted sufferers like Middleton choose oblivion over the agony of living. Yet her death was a shock to many. She was the epitome of a successful woman with a resume that went back to being a champion ping pong player, touring with the Australian table tennis team in 1971. She became jewellery maker to the elite, our own Queen of Diamonds who led a dazzling life making stunning, extravagant pieces, some of them worth more than $1 million each. She had a large international clientele and made bespoke items from 20 carat topaz gems or pink sapphires or Argyle diamonds or South Sea pearls for royalty in Brunei, Thailand and Malaysia. Champagne aloft, she was photographed with Bill Clinton, Olivia Newton-John and Ian Thorpe, and was a charity regular and a favourite of the ladies who lunch. In 1994 she was South Australian of the Year and in 2006 she received the Order of Australia, a year after she moved from Adelaide to the Gold Coast.
Three years ago she began to worry that she was sick. Suffering from abdominal bloating and pain, she thought it might be a food allergy. After six months of discomfort she was diagnosed with uterine cancer and had a hysterectomy. She had a longstanding sensitivity to light and not long after the surgery began experiencing early symptoms of trigeminal neuralgia; an intermittent burning sensation at the back of her head and from the forehead down. Fearing the problem was dental — trigeminal neuralgia can be tricky to diagnose — she had a tooth implant removed. As it worsened, she sought help from a range of medical specialists. In Queensland she saw an eye specialist whose injection into her neck seemed to make things worse. Then she saw an Adelaide specialist who drilled in to try and cauterise the trigeminal nerve.
“She came out of that worse,” says McMahon. “After that, any time anyone touched her she was in quite a bit of strife. It had nothing to do with the cancer surgery; that was unrelated.”
She tried not to complain. Whether you are consumed by dire pain or not, there is only so much someone else can do. For two years she hid it as much as she could, flying to Adelaide to see friends and distracting herself with friends and work and dinners.
In 2001 she had sold Chez Jewels to businessman Robert Gerard but kept working as a jewellery designer and ran the store on the Gold Coast. She was ebullient and full of life and worked hard for charity, even when planning her death. She tried pain clinics and spent time practising relaxation techniques at her friend Olivia Newton-John’s retreat. She tried opiates but they made her sick. The pain was always bad but for the last six months became more intense. Towards the end, there was little else she could talk about, at least to close family and friends. She withdrew into herself. Her first husband, the father of her adored son Jamie, supported her and she would stay with him on Adelaide visits. She socialised but her world was shrinking and at its centre was the pain.
“She loved her glass of champagne, it made her feel better, but in the end that didn’t work either,” McMahon says.
Her affliction is not rare but it is uncommon. An Adelaide oral and maxillofacial specialist sees about 500 people a year with face pain, about 50 to 75 of whom will have trigeminal neuralgia. Interestingly, one way to diagnose it is that, unlike toothache, the pain goes quiet at night and doesn’t disrupt sleep. Ninety per cent of cases are successfully treated with antineuralgic medication like Tegretol. It’s not a cure but keeps it under control. With the other 10 per cent, surgical intervention can help.
It is difficult for sufferers to explain just how bad it is. Kent Parkin spent months thinking the source of his pain was dental, visiting specialists and buying mouthguards hoping it was related to a lifelong habit of clenching his teeth. Nothing worked as the pain progressed from occasional bouts to an entrenched agony that left him pressing so hard on his cheek he broke blood vessels. “You can describe it to people but it’s so hard,” he says. “It’s like an electric shock but it doesn’t stop. I say to people, imagine dissecting a nerve out of your face then getting a knife and twisting it. The pain is so bad they call it the suicide disease. When you do research on the net, that’s how people refer to it.”
He was managing a company that supplied GPS equipment to the mining industry and would sit still in meetings, unable to speak while waves of pain coursed through his face. He tried prescription medication and neural dampeners like Endone but nothing touched it. In despair one day he called his sister who took him to a doctor at Brighton.
“I’m sitting there saying ‘I’m going crazy, I’m just going to bloody shoot myself’,” he says.
He was given morphine, which helped for about an hour. Later that night he went to Ashford Hospital and got a bigger dose that let him get home and sleep. The hospital referred him to a maxillofacial surgeon who the next day gave him a neural block that stopped the pain entirely.
“Before he pulled the needle out I said to him, ‘are you going to be embarrassed if I get out of the chair and kiss you?’ Because the pain just went. It numbed the entire bottom of my face.”
It broke the cycle for a couple of days but by now Parkin was convinced he had trigeminal neuralgia. He was referred to a neurosurgeon at the RAH who ordered an MRI. Parkin tore open the notes and read that there was nothing abnormal to be seen.
“I took it in to (the neurosurgeon) and said, ‘they’ve said there’s nothing’. He holds the film up and says ‘bullshit, they don’t know what they’re looking for. That’s your problem’.”
At the base of his brain a blood vessel was rubbing against one of the branched facial nerves, wearing away the nerve’s protective sheath. The specialist recommended surgery to insert a piece of Teflon between them.
Parkin went to Memorial Hospital in July 2012. At 6am the surgeon told him they were going in, in an hour. Three things could happen, he said: You could end up with numbness on the side of your face, you could have a stroke, or it could be a complete disaster and you could die.
“At that point in time, with what I’d been going through, as far as I was concerned I didn’t care what was going to happen as long as I got rid of the bloody pain,” he says. “It was just horrendous.”
The surgery worked although not without complications. With staples in his head, but free of the neuralgic pain, Parkin went home. He was relieved beyond comprehension. Days later he was back in hospital after brain fluid began dripping from his nose. He had a spinal tap that reduced the fluid but four days later it began dripping again. He needed more surgery. When the surgeon sewed up the dura membrane that encloses the brain, a tiny pinhole was left, enough to allow fluid to leak out. He was also becoming sensitive to light.
The pinhole was sealed but two days later he began a course of heavy-duty intravenous antibiotics; he had contracted bacterial meningitis, probably a hospital acquired infection. Six weeks later he was attending meetings with a pump in his pocket discharging intravenous antibiotics. He was unlucky, but grateful. Two years later, he is pain free but can’t say the words without a “touch wood” for luck. He has his life back.
“When they say it’s a suicide disease, I can understand it,” he says. “You can’t live with it. The pain is so intense. What are you going to do? Stay in hospital on a morphine drip?”
Those who loved Middleton are left haunted by the thought of “what if?” What if she had hung in there for another week or month and found a doctor who could help? What if she had found some way of learning how to live with chronic pain?
Professor Lorimer Moseley, who works in clinical neurosciences at UniSA and studies the role of the brain and mind in chronic pain disorders, says he understands that some people feel it is better to die than live with so much pain. In his experience, nerve pain often seems to be the worse. This includes trigeminal neuralgia but also testicular neuritis or pain after a motorbike accident that has damaged peripheral nerves in some way. Sometimes stroke victims also experience unbearable full body pain.
After 20 years of research, he is convinced that when people say “it’s all in your mind” they are more right than they know.
“Pain is not like a disease process where you can see the thickening of the arteries or plaque on the brain,” he says. “Pain is the experience that is produced entirely by the mind. That’s a really difficult thing to conceptualise because it feels so strongly that it’s in the body.”
In Moseley’s view all pain, 100 per cent of the time, is produced by the brain as a way of making you protect that part of your body, even when — as in the case of phantom pain in an amputated limb — there is nothing to protect. An entrenched affliction like trigeminal neuralgia is a prime example of pain being produced when there is nothing tangible for the body to protect. From this flows the potentially fruitful step of training the mind not to produce that pain any more.
“I am one of many people around the world who are trying to work out ways to make it do that,” he says. “We need to train the brain to change its mind over protection.”
In a case of trigeminal neuralgia, the aim would be to train the brain to stop reacting to danger messages from the trigeminal nerve. Moseley says progress has been made in changing the way people think about their pain and helping them understand what their pain means.
It is no magic bullet. There is no cure. It is a process of rehabilitation, not a treatment, and involves a team of people including a physiotherapist and a psychologist who can help teach tricks to get the brain coping differently. For the first time, researchers like Moseley are feeling positive about their hopes for those who suffer from chronic pain, and there are many of them.
Living with pain is not a catastrophe that affects just a small number of people. Moseley says it is the nation’s most burdensome health issue, more costly in lost productivity than cancer and diabetes combined. In the top 10 of the world’s most burdensome diseases, chronic pain disorders occupy the first, fourth and eighth place.
Yet with all the guarded hope that pain research brings, there will still be individuals for whom no help will be found. “There are tragedies everywhere,” Moseley says. “Ann is one person but I could reel off 20 people I have known who have killed themselves because of unbearable pain.”
Her brother wonders if maybe Middleton knew too much, that she went to too many doctors and knew so much about her condition that it drove her down. McMahon would try to be positive and tell her she would get better and the pain wouldn’t kill her, even if it got worse. Other people have recovered and he worries that with Middleton, something was missing.
“My mate’s father had trigeminal neuralgia in his 80s and said to his son ‘kill me’. Then they found a tablet that worked,” he says. “A CIB (policeman) on the Gold Coast told me there was a lady, a devout Christian, who had it and she went to (euthanasia adviser Dr Philip) Nitschke then decided no, it’s against her beliefs. Five days later she found someone who helped.”
He is not critical of the medical profession but thinks there should be a central register where people like Middleton can go for up-to-date, reliable information on best practice treatments. She saw so many doctors yet none of them could help her. “She was looking for a Dr House; we laughed about that,” McMahon says. “I can’t explain any of this. It’s a real mystery to me.”
For support, contact Lifeline 13 11 14 or beyondblue 1300 224 636