Six years ago, Natasha was on a backpacking holiday when she suffered intense neck, back and head pain. It took three years of seeing multiple therapists to get a diagnosis (including Neurologists, Chronic Pain Clinics, musculoskeletal specialists, acupuncture, Bowen therapy, physio, hydrotherapy, kinesiology, E.N.T., psychologist, psychiatrist, pain specialists, Neurosurgeon, chiropractor, naturopathy, dietitian, and more), until she was eventually diagnosed with Occipital Neuralgia.
Natasha has tried many different procedures to treat her pain, including facet joint injections, nerve blocks, prolotherapy, Botox, and bone scans. She attended a chronic pain clinic regularly, however after six months they told her that could no longer help her, that there was nothing more they could do.
In 2015, Natasha had two surgeries to excise specific nerves, in an attempt to stop them from firing and to make her numb – the first time these surgeries had been performed in Australia - however unfortunately they were unsuccessful. Her pain actually intensified after the surgeries, and she has since also developed Trigeminal Neuralgia.
Natasha is now at a loss as to what to do. She has seen three pain specialists since the surgeries, and all have said that they cannot help her further. She feels let down and unsupported by the health care system, and dreads the future. She takes many different medications to try and manage her symptoms, which come with significant side effects including crumbling teeth, memory loss and blurred vision.
Natasha finds some relief in meditation, deep breathing, yoga, spending time in Nature and with friends, darkness, silence, and spending time with animals. She still manages a half day trip to explore a village or forest every week. She is unable to drive due to the pain, however she has a supportive network of friends who help her get out and about occasionally.
Natasha’s mental health is significantly impacted by her chronic pain, and she has suicidal thoughts weekly, and even daily when she is having a bad flare up. While the drugs she is on don’t eliminate the pain, they mean she is able to work 13 hours a week. She has applied for the Disability Support Pension four times, unsuccessfully. Natasha is unable to touch the side of her head, meaning she can’t wear hats or glasses, and has to sleep on one side only. She can’t lift her right shoulder, and avoids using her right arm and hand if she can. She can’t look up or down or to the right at all – only straight ahead, which can be very dangerous when she’s moving around.
Natasha is very limited in the leisure activities she can do; she can only manage quiet places, and must avoid crowds and noisy environments, and she can generally only be out of the house for one or two hours at a time. She experiences extreme exhaustion, and her immune system is also compromised, to the point that it can take her a month to get over a cold. She also experiences migraines twice a week on average, with glare and certain smells being triggers.
“I used to be a manager, a dancer, a singer and an amateur actress, but that’s all gone. I feel like I have nothing left, nothing to look forward to. It’s very hard to live with.”
“Because I look OK, people think there’s nothing wrong with me. Having an invisible illness is hell, no one believes that I’m in constant pain.”
“People think my pain can’t be that bad because I work, but that’s rubbish. I have to work as the government doesn’t think I’m sick enough for the DSP, and I have no family here in Australia. I have to pay for all of my therapies and treatments myself – on two shifts a week - as the public hospital system has said my case is too complex.”
“I feel so unsupported by the government and by the medical profession. The government doesn’t believe I’m sick, and doctors say there’s nothing they can do for me.”
About Occipital Neuralgia
Occipital Neuralgia is characterised by severe pain that begins in the upper neck and back of the head. This pain is typically one-sided, although it can be on both sides if both occipital nerves have been affected. Additionally, the pain may radiate forward towards the eye as it follows the path of the occipital nerve(s). Individuals may notice blurred vision as the pain radiates near or behind the eye. The pain is commonly described as sharp, shooting, zapping, an electric shock, or stabbing. The bouts of pain are rarely consistent, but can occur frequently depending on the damage to the nerves. The amount of time the pain lasts typically varies each time the symptom appears; it may last a few seconds or be almost continuous.
About Trigeminal Neuralgia
Trigeminal neuralgia (TN or TGN) is a chronic pain disorder that affects the trigeminal nerve. There are two main types: typical and atypical trigeminal neuralgia. The typical form results in episodes of severe, sudden, shock like pain in one side of the face that lasts for seconds to a few minutes. Groups of these episodes can occur over a few hours. The atypical form results in a constant burning pain that is less severe. Episodes may be triggered by any touch to the face. Both forms may occur in the same person. It is one of the most painful conditions and can result in depression.