Lyn has lived with Occipital Neuralgia for nine years, after a seemingly run-of-the-mill car accident in 2009 that left her with what doctors thought at the time to be mild whiplash. She spent six years in agonising pain, experiencing chronic and debilitating cluster headaches, before she was finally diagnosed with Occipital Neuralgia (nerve damage pain) in 2015, which has since been proven to be caused by whiplash or trauma to the head or neck.
Prior to her diagnosis, Lyn was at times taking so many different medications that she was experiencing severe incontinence, as well as other serious side effects. The intense, chronic pain left her feeling suicidal and completely hopeless. Lyn experiences pain 24/7 and likens it to getting electric shocks every five to 10 minutes, from the neck up to the head and behind her eyes.
Since her diagnosis, Lyn has found a variety of treatments that give her some relief, including Botox injections in her head every three months, and nerve blocks, which need to be performed every six months to be effective. The nerve blocks cost $1300 – which Lyn must cover herself through the private health system, as she has been on the public waiting list for over one year already, and has been told another six month wait is likely. Unfortunately, there is no longer a pain specialist/surgeon on the Gold Coast to perform the nerve block procedure in the public system.
Lyn has been unable to work since shortly after the accident. The condition can impair her vision and her balance is also affected – she likens her symptoms to having permanent vertigo, or being stuck inside a ‘drunk body’.
Lyn’s pain makes sleep very difficult. She can’t put pressure on her neck, making lying down very painful. She takes sleeping medication to help her lie down. Generally, once she is asleep she stays asleep for 4 to 6 hours, which is a great improvement on a few years ago. Prior to diagnosis she would sometimes take so many sleeping tablets that she was often surprised to wake up.
She sees a physio regularly, and has now booked in to see a pain psychologist to accept that she may never get better. Up until recently she kept thinking there would be a cure, but she is now coming to terms with the fact that she may never get better.
Lyn experiences intense pain in her head and neck, and often will take an esky full of frozen face washers with her when she goes to bed, which she holds against her head in an attempt to get some relief from the pain. Lyn relies on the support of her adult son, friends, and volunteers to help her with the activities of daily living, as she is basically house-bound without assistance.
Lyn started an online support group for people with Occipital Neuralgia as she wanted to connect with others who were experiencing the unbearable pain that she was, and try and provide some support. The group has been a great comfort to all of the members, with just over 70 members Australia-wide https://www.facebook.com/groups/OccipitalNeuralgiaAustralia/.
“The nerve block I have every six months has literally saved my life. Afterwards I sleep better, I can see better, my whole life improves immensely. But it only lasts a few months before it starts to wear off, and I have to cover the whole cost myself.”
“Most people just don’t understand what it’s like to have an invisible illness. I face daily discrimination from people who don’t believe that I’m in pain. It’s very wearing to be thought of as a liar or a fake.”
“I just want there to be more awareness of what it’s like to live with chronic pain, and especially for my condition, Occipital Neuralgia. It took six years for me to be properly diagnosed because doctors didn’t even know what to look for. There’s a bit more understanding in the medical profession now, but ON is still very misunderstood. Suicide is not uncommon amongst ON sufferers.”
“I’m starting to come to terms with the fact that there’s no cure for my condition, that this is what the rest of my life will be like. I have to accept that I may never get better.”
“There are presently no pain killers we can take for nerve pain, only pain blocker medications, and the side effects make life hard to do the normal things as they can make you groggy, dizzy, forgetful and affect how we think and speak.
“I hope we can create awareness so we can get more help, as we urgently need research into new treatments and medications for Occipital Neuralgia and nerve pain. I hope one day we find a treatment that works and that is affordable for everyone.”