I have suffered from epilepsy since the age of 18 months when I fell and hit my head on a table leg. I was at the toddler age and into everything!
Throughout childhood I was in and and of Southend University College hospital and had six monthly check ups.
Once I turned 19 my epilepsy had improved so much on Epilim and Primidone (low doses) that I was struck off from the hospital list and told to go back to my GP for repeat prescriptions and if the epilepsy flared up again.
From then on I led a pretty normal life including learning to drive and even taking a year out to backpack around the world.
When I returned I was employed by a local firm and things started to go downhill. I'd been commuting to London before.
They put far too much pressure on me and wouldn't employ somebody. To help me out even if only part time. The stress affected the epilepsy badly.
I kept asking to see my present consultant but have seen nobody now for 4 years! So much for the NICE guidelines!
I am now approaching the menopause and have seizures every month that coincide with the periods so I feel this may be connected. I also have the stress of looking after my elderly Mum full time as I cannot work any more. Alplas put paid to that when they unduly sacked me!
I have tried the ketogenetic diet but it doesn't work for me and I'm already on the maximum dose of my medication, Zonegran, EPILIM Chrono nd Clonazepam.
The bottom line is that the doctors just don't want to listen.