Rather than give you facts and figures about epilepsy that you can search online I've chosen to share with you how epilepsy has affected me.
How did it happen?
I wasn't diagnosed with epilepsy until I was 18, this was when I had my first seizure. I was on my way home from work and had to go into a shop to buy batteries for my Walkman (yes, I'm that old), whilst in the shop my vision started to flicker and a felt a sudden feeling of panic. I left the shop as quickly as I could and once outside my body seized up; the right side of my body began moving inwards and the left side locked into place, this resulted in me stood on the spot involuntarily spinning around in circles. My neck was tilted backwards and locked in place and the last thing I remember was the sky spinning, confusion and panic, at this point I blacked out and collapsed. I woke up 3 hours later in the Bristol Royal Infirmary with my parents there.
I was discharged the same evening and told I would need tests to determine what caused the seizure. Once I got home from the hospital, I don't think I left the house for around two weeks in fear that it might happen again.
I had an MRI Scan, CT Scan and an EEG (whist having a flashing light directed in my face, which even for someone without epilepsy wouldn't be pleasant). After the tests I was officially diagnosed with epilepsy and for the past 16 years I have had to take anti-seizure medication twice a day, which I will most likely have to continue doing for the rest of my life.
How does it affect me now?
Although my epilepsy is well managed by medication I am still affected by some less noticeable symptoms. I experience mood swings and anxiety attacks, some days I panic about leaving the house to go to work or even to go to the supermarket to buy milk.
My memory occasionally lapses, long term and short term. Some long term memories only exist for me because there are photos and I have no memory of the event. Short term memories, I can forget a conversation mid-conversation so if you find me saying yes to a ridiculous request that's probably why.
I can have trouble concentrating and paying attention during conversations and performing tasks.
A few lines of something I've heard will get stuck in my head, a movie line or song lyric; and it will repeat itself over and over and no other thoughts can get through. This can last for several minutes.
I sometimes have an intense feeling of deja vu. It can be so intense that it can become confusing, causing paranoia and anxiety.
I experience "auras" these happen in different ways, most commonly for me my senses are heightened, sounds become so loud that it's like someone is shouting in my year. My vision seems brighter and the colours seem more intense.
I haven't openly discussed this with family or friends before, so I'm expecting some mixed reactions. There are so many people experiencing the same symptoms as me and have learned to hide them but they will always be there.
There is little awareness of epilepsy and until writing this I'd guess 80% of people who known me didn't know I was epileptic. It's more than likely that you all know someone; a family member, friend or work colleague who has epilepsy and you aren't aware of it.
Why am I telling you this?
I am running the Bristol to Bath Marathon on 25th October 2015 to raise money for Epilepsy Research UK and would like you to sponsor me. All donations are appreciated no matter what the amount. Running 26+ miles isn't an easy thing to do so if you'd like to cheer me during the race it would also be appreciated.
If you'd like to know more about epilepsy and how your donation can help, please click on the link below.
http://www.epilepsyresearch.org.uk/
Thank you for taking the time to read my story.
Dave Hellings