Lyn

I live with a nerve pain condition called Occipital Neuralgia, but it took six years to get a diagnosis.

Nerve pain is horrific. Every five to 10 minutes, I have the sensation of electric shocks running through my neck, into my head and out my eye.

I am in constant pain and feel very uncomfortable all the time.

I can’t read a book because the condition affects my vision and I can’t watch TV or got to the cinema because the flashing lights make the pain worse. I have a very limited social life and just doing the grocery shop is difficult.

It started with a car accident in 2009, which left me with whiplash. By 2010 my head pain had increased, but almost 10 different specialists and numerous tests couldn’t diagnose me.

I was told to see a psychiatrist but I knew I wasn’t depressed, just very frustrated.

By 2011 I couldn’t work, I was taking many days off due to pain and being unable to sleep.

I ended up finding out about Occipital Neuralgia online, and then told my GP I thought I had it. After being diagnosed, I finally got some treatment.

After my first nerve block I felt semi-cured, but mine have to be repeated every six months. This means being anaesthetised, because the procedure happens to nerves in my head. It also means an extra expense, so I don’t have them as often as I should.

I take Lyrica every day, which makes me feel drunk, but it takes the edge of the pain.

I started Occipital Neuralgia Support Group Australia to raise awareness about the condition and advocate for change.

Chronic nerve pain can make people suicidal; it’s important they get the right care and support.