Lyn from the Gold Coast lives with a nerve pain condition called Occipital Neuralgia. It took six years to get a diagnosis, and she had to google her symptoms because no doctor had ever considered it.
“The condition started with a car accident in 2009, which left me with whiplash and chronic head pain, but almost 10 different specialists and numerous tests couldn’t diagnose me,” she says.
“I was told to see a psychiatrist but I knew I wasn’t depressed, just very frustrated.”
Today Lyn has a sensation of electric shocks running through her neck, into her head and out her eye, every five to 10 minutes.
She can’t read or watch TV. Her social life is limited. She can’t work and can hardly manage a grocery shop.
Lyn wants to reach out to others with nerve pain, which she says is the worst form of pain.
“Nerve pain is different, it’s an horrific form of pain. It can make people suicidal,” she says.
“We really need more research into the condition, and better treatments.
“We also need more education for doctors so that people get the right diagnosis.”
Lyn started an online Occpital Neuralgia Support Group a few months ago and already there are 77 members.
“I want people to know they are not alone, and I want politicians to know that we need help.”