I was diagnosed with generalised epilepsy when I was 17 after having several tonic-clonic seizures.
I had my first witnessed seizure when I was out in public at the library (I was studying for my A-levels at the time!). The volunteers running the library were retired nurses so they were fab at knowing what to do and called an ambulance and I went to A&E. It was all a big shock, a really scary unexpected experience. The journey from my first witnessed seizure to diagnosis was quite a long and frustrating process.
This was down to the fact that the waiting lists for the first seizure clinic were so long. It meant I couldn’t be diagnosed and start treatment, but was continuing to have seizures. I was advised that every time I had a seizure I should go to A&E. This led to a situation where I would present to A&E having had a seizure and the medics would be like ‘yep, this definitely seems like epilepsy but there is nothing we can do, until you have been seen by neurology, had an MRI and an EEG and had a diagnosis confirmed’.
"The journey from my first witnessed seizure to diagnosis was quite a long and frustrating process."
I was in and out of A&E, having had more tonic-clonic seizures. This went on for about five weeks, with lots of frustrations such as my referral being lost. It was a really stressful time, and I was trying to finish my final weeks at school and do my A-levels but this became so disrupted by all the seizures and the things that came with it all that I really struggled. When I look back on it all it’s all a blur.
When I finally was seen by neurology, I saw a really lovely consultant. She’s diagnosed me with epilepsy and talked me and my parents through it all and she’s still my consultant. She was so positive and helpful, and that definitely made it all easier. By this point having a diagnosis and some medication felt like such a relief.
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