Hi, I’m Malcolm and have had epilepsy since the age of 2 (I’m now 65) when I had meningitis. Until about 20 years ago I would have 1 seizure a week which has increased to 1 seizure every 4 or 5 days. I take phenytoin 100mg 3 times daily and levertiracetum 1000mg twice daily. However I have refractory epilepsy and increases in meds has only a temporary benefit so I have been reluctant to continually increase the meds.
I’ve been fortunate that the seizures have not held me back in terms of employment or relationships and I recover quickly from them.
I’d be interested to hear from anyone who has refractory epilepsy and how they have managed to control it without surgery or increasing the meds.
