At birth I had west syndrome and that lasted about 2 years. Because I had strokes, I had to teach myself through using heavy boots how to walk as all I could do before is crawl. My epilepsy when controlled I lived somewhat a normal life till I turned 13, I had the HPV vaccine at school which triggered my epilepsy. Had my first seizure at school! Hit my head on the lockers, went down and don’t know the rest.
I had tonic clonics purely at first. Then over the years I developed daily focal aware along side generalised seizures. Not a day off in 15 years. And if I did have a day off, my body would make sure I made up for it the next day. My triggers are sudden noise and movement, on top of the usual like sleep, stress and sometimes spontaneous seizures. I also developed focal clusters and prolong so taking buccal quite a few times a week. Loads of hospital stays including one last month which the cluster lasted over 4 hours.
Jo’s Story: Seizure-free days
My local gp told me “there are people worse off” and gave up so being that my seizures were so easily triggered I was able to film them and send them private – which, was difficult financially.
I managed to see a Dr in Birmingham and he told me about the Epilepsy Society and they changed my life. Offering me treatments and support I’d never had before. I am drug resistant so it started to look like surgery was my only option left. Last year Cenonabate was a new drug newly available which I started this march (due to long term illness last year I had to wait) and to our amazement I’ve had days off. In fact I just had a major milestone being 12 days free which sadly came to an end by a night seizure and cluster later that day????.
I’m hoping this only gets better! I have life long friends during my epilepsy journey and have been able to run marathons, attend patrons lunch, board meetings, become an advocate AND even attend the Parliament event with my friend Teni who also has epilepsy!
Jo @johardimann