Roger's Epilepsy Story
At this time, Roger experienced a sudden onset of unwitnessed night-time tonic-clonic seizures, and used to wake up with blood on the pillow, with his mouth bitten inside, and not knowing who or where he was.
On a visit to see a friend in Paris, Roger finally had a seizure in front of another person and his friend was able to call an ambulance. Of this experience, Roger says: “This heightened my confusion even more, as I didn’t know why I was in France, what was happening, I couldn’t speak French, and all of the doctors’ level of English wasn’t enough to explain what was happening to me.”
Roger managed to fly home and was collected by a friend and taken to the Emergency Department. His scans and EEG results returned inconclusive and Roger was placed on anti-epileptic medication despite no formal diagnosis being made at that time.
The seizures continued, and Roger was eventually diagnosed three to four months later by a consultant neurologist. At that time, he was having at least one night-time tonic-clonic seizure a week. Amazingly, Roger still managed to finish his university degree.
Roger has tried many medications over time, many of which failed. He has experienced side effects including tiredness, anxiety, mood changes and weight fluctuations. Eventually, with medication, his seizures were modified to complex-partial and became throughout the day, rather than during sleep. However, as Roger’s seizure frequency was increasing, his consultant suggested that he have a Vagus Nerve Stimulator (VNS) put in.
Roger says: “I considered this a lot as I know the side effect would be a temporary partial loss of voice, and this is obviously extremely sub-optimal, but what else could I do? My epilepsy was impacting my life in a huge way so losing my voice for 30 seconds every five minutes was bearable, and I went with it.”
Roger has faced some challenges with regard to employment, related to his epilepsy. He finds he is questioned about his voice in interviews, has experienced a lack of acceptance from colleagues in the workplace and even discrimination in one particular former job. His memory and confidence are impacted, and as his seizures are stress-related Roger says this is a vicious circle of the more stressed he gets, the more seizures he has, and so on.
Roger moved to Australia in 2013 and now lives in Townsville. He works in academia, which keeps him very busy, particularly as he has started a PhD!
“There’s so much stigma around epilepsy but over the time that I’ve had it, I’ve noticed a change. However, there still needs to be a lot of work done until the stigma is completely gone.”
Roger would like people to know that epilepsy isn’t something to be afraid of and his hope for the future is “That attitudes will shift to be positive, and stigma will dissipate … and that I’ll finish this damn PhD!”
Can you relate to Roger’s epilepsy story?