Epilepsy Sparks Founder, International Public Speaker
Title: Epilepsy - Temporal Lobectomy, AEDs and Societal Stigma
After an hour-long febrile seizure, Torie’s epilepsy worsened over the following 32 years, and she was lucky enough to have a successful temporal lobectomy in 2013. Torie has became an active international public speaker and consultant regarding epilepsy, disability, mental health, diversity and inclusion. Her purposes are to enlighten the uneducated, reduce the stigma held against those with epilepsy and hold organisations accountable for corporate social responsibility when it comes to employment. Torie has featured in both conferences and various platforms media in the UK, Australia and Europe. Founder of Epilepsy Sparks, Torie brings together Neurologists, Epileptologists, patients, employers and family members from all over the world to share their stories – with a smile where possible! Working with the UK Government DWP, Epilepsy Action (accredited volunteer/trainer), featured in Huffington post and numerous other publications.
Torie Robinson (the patient): aged 37 with refractory, left temporal lobe epilepsy in a setting of left hippocampal sclerosis. Increase in seizure severity and frequency over 30 years, with associated depression, anxiety and emotional disorder. In corporate finance role, Torie travelled back to London (from Melbourne) to obtain NHS help with worsening seizure severity, clusters and associated health issues. For surgery exploration testing, Torie had EEG, Video Telemetry, fMRI, Psychological evaluation/neuropsychology assessment and IQ test; which led to left temporal lobectomy in 2013. Post-operative diagnoses: seizures partially controlled (outcome Engel class 2); significant reduction in frequency and severity. Torie has had 5 tonic-clonic seizures post-op, has absence or focal seizures every 2/3 months, with new “shudders” yet to be investigated by consultant. Torie remains on Lacosamide, Lamotigine, Clobazam (for international travel when sleeping pattern disturbed), Venlafaxine and Levothyroxine. With improved neurological and psychological stability, quality of life and life expectancy, Torie is now a motivational and international public speaker regarding epilepsy, disability and psychiatric health.