My name is Nicola and I was diagnosed with Idiopathic Intracranial Hypertension (IIH) nearly three years ago. IIH is a neurological condition that causes intracranial pressure in the brain.
As a result of my rare condition, I have had to undergo 28 lumbar punctures to drain excess cerebral spinal fluid (CSF) from my brain to try and save my eye sight. I have also had a lumbar shunt placed but that did not work, so I underwent brain surgery to place a ventricular shunt in my head.
This treatment has been intermittent and I am constantly in the hospital with blockages of this shunt. My eye-sight is deteriorating rapidly. Doctors are doing all they can, but there is currently no cure for IIH.
I hope one day, for everyone that suffers IIH, there will be an end to our pain and a cure.
Hope, it’s in my genes!