Ineke’s Story

My name is Ineke. Five years ago, I started to get pain in my eyes. Initially, it was on and off but then one day, it did not go away. I now have pain in my eyes 24/7. Sometimes the pain is at a level 10 and sometimes at a seven. I am never without the pain.

What is corneal neuralgia? Corneal neuralgia, or corneal neuropathic pain as it is sometimes called, is a rare disease that causes patients to experience severe eye pain, sometimes without a clear cause as in my case. Research suggests the condition may be caused by twisted and truncated nerves in the cornea, but this damage can only be observed with powerful confocal microscopes that are too costly for specialists to buy. Patients often experience one or more symptoms such as ocular stinging, burning, irritation, photophobia, and deep aching pains. It is a severe unrelenting pain felt in and around the eyes, which knocks quality of life sideways. Patients experiencing this condition will usually already have been on a long journey to get a diagnosis as it is complex and often misunderstood.  

​I have been diagnosed in the past with dry eyes, meibomian gland dysfunction and blepharospasm. I have seen seven ophthalmologists (including a Professor of Ophthalmology who has written a paper on the condition), two neuro-ophthalmologists, one neurologist and five optometrists. I have tried all the eye drops available on prescription and over the counter. Paracetamol and ibuprofen do not work at all. I have been prescribed several medications to help with the pain and even autologous serum eyedrops (eyedrops made from my blood serum). Unfortunately, the medications for nerve pain have so many side effects that I eventually preferred to just put up with the eye pain. There is no gold standard treatment for the condition.

Because of the pain in my eyes, I cannot drive anymore and had to sell my car. I was an artist and cannot paint anymore. I was also an avid reader and although I can see perfectly well, the pain in my eyes gets so bad after reading a few paragraphs that I must stop reading.

Corneal neuralgia is also quite isolating. The pain makes it exhausting to keep my eyes open when talking to people, so I limit catching up with friends to short periods. Fortunately, my husband makes sure I go out each day, so I do not get depressed, which is a common side effect of the condition. 

I am keen to get in touch with other people suffering with this condition as so little is known about it in Australia. Reach out to Rare Voices Australia if you would like to connect with me: [email protected]