Today, I’m writing about myself, my epilepsy. I’ve been working on this post for over a month now. Sometimes it’s easy to write about myself and other times I shy away from sharing anything personal. The thing is, I’d like to read about other people’s experiences with epilepsy so I’m going to share mine.
So I say my epilepsy, because the condition is experienced differently by each person who has it. There are many types of seizures that manifest in totally different ways. I’m writing about my own diagnosis. The seizures I have and the doctors I experienced. If you have epilepsy, I’d love to hear about your experiences; what you’ve found encouraging or challenging whilst living with this conditions.
Right, time for a cup of tea. Tea exists to rejuvenate. Kind of like how chocolate helps people who’ve been around dementors. I’ve tried to organise this post in my mind and in notes so many times and sometimes it’s organised and flows well and other times it’s a mass of information that comes out in a blob of different points. So please, bear with me.
– The Beginning –
For as long as I can remember, I’ve had these weird little experiences. Sort of like daydreaming but with a panic and disconcerting edge. The feeling is an extreme sense of déjà vu. I suddenly feel like everything around me has happened before in exactly the same way. E.g. People walking in the same place, the same thoughts crossing my mind, everything the same, the same, the same all happening around me. I’ve since learnt that these weird déjà vu sensations are partial seizures in my Temporal Lobe.
Partial seizures are only in one lobe of the brain, whereas general ones spread across more of the brain. During a partial seizure I don’t loos consciousness and continue what I’m doing. I didn’t know what these experiences were and no-one ever noticed them happening so I didn’t think about them much. My partial seizures were just a weird hinky sensation I got used to experiencing.
In 2013, things changed. I started having generalised, tonic clonic seizures. This is the type of seizure where you loos consciousness and muscle control. This is the type that’s shown in films as epilepsy, it’s a little more noticeable than a partial seizure! I’d had one random big seizure in 2010, and I was checked over but because I didn’t have any more they put that down to a random one off. I had my second generalised seizure in July 2013 and was then diagnosed with idiopathic epilepsy. Idiopathic means they don’t know what causes it (or as I like to think, the Doctors are idiots and don’t know what causes it!)
– Doctors –
Looking back, I really resent the GP I had as a teenager. I went to her about my weird “déjà vu sensations” and asked her about epilepsy and the “aura” sensation I’d read about. She completely dismissed it as something I’d read about online and presumably thought I’d made it up! I was a vulnerable person looking for help and she made me feel ashamed of asking for it. After two trips to A&E, confirmed tonic clonic seizures and a big hole in my head from collapsing on concrete, she finally realised I hadn’t been making it up. I was diagnosed with epilepsy.
– Diagnosis –
My Epilepsy diagnoses changed things. I’d passed my driving test one month previously and I remember saying to Antonia (who needed to drive further to work everyday when I could be dropped off) “yeah, you take the car, I have my whole life to drive now”. Irony bit me in the butt there. I lost my driving license after one week of driving and started a medication called Lamotrigine.
– Lamotrigine –
For anyone who is taking this and likes it, that’s great, good for you. I’m happy it works for you. But, I HATED it.
For 10 months I lived like a zombie. I worked mornings at work and then came home at lunchtime to sleep in the afternoon. I’d get up for dinner and horses and then go back to bed. My boss was really lovely about this but obviously was concerned that I was working with young children at a nursery school. My responsibility at work was greatly reduced and I started to feel like the 4 year olds I was working with. I wasn’t allowed to be left in charge of the children by myself and needed another member of staff with me at all times.
So, I went from having weekly partial (small) seizures to daily seizures and perpetual tiredness. I felt constantly odd, slow in my mind. Processing information and making even small decisions became a challenge. Everyone was nice about it but I felt a little like I had a sign on my head reading “delicate, do not touch” as everything I wanted to do had an added assessment of risk attached to it. Lamotrigine made me feel really rubbish and after 10 months I decided I couldn’t take any more and slowly came off it. I had three great weeks of no seizures. And then unfortunately, I had another generalised seizure so back off to A&E I went.
– Keppra –
Back in 2014, I started a different medication called Levetiracetam or Keppra (much easier to pronounce). I’m still on it to this day and it’s working fantastically for me. In July this year (2019) I will have had 5 years WITHOUT ANY SEIZURES. I started driving again in 2016. Levetiracetam’s been brilliant for me – I take 250mg four times a day.
The best thing that’s happened whilst I’ve been receiving epilepsy treatment is meeting my Consultant. I started having twice annual check ups with a neurologist after I started taking Lamotrigine. After a couple of years I met my Consultant Neurologist who I’ve been seeing once a year since. He. Has been. Amazing. Explaining as much as he can to me about epilepsy and the drug treatments, and listening to all my questions and taking everything I say seriously. He is the first doctor I’ve ever had treat me with respect. He even wrote to my GP, urging her to prescribe me the treatment that I needed.
– My story with seizures –
Since I stopped having seizures, I’ve realised quite how much having them continually for years affected me. For starters, my memory. I have always had a poor memory, my Mum and I share a poor short term memory. The thing is, seizures affected my long-term memory. I don’t have memories of much of my childhood. I can watch home videos of myself as a child but I’ve no memory of anything that happened over those years.
My memories are mostly moments of family holidays in Canada, and feelings of isolation at Prep School. I remember Senior School and my friends, but I don’t remember what I studied or recollect events that my friends fondly look back on. The Temporal lobe of the brain along with the hippocampus is responsible for the formation of long-term memory. Continual seizures affected my ability to memorise information. In a way, It’s good to have a reason to explain why I struggled so much to remember what I was trying to learn at school.
– Somedays it sucks –
Sometimes the weight of all this gets to me and I inevitably start thinking, why the hell did epilepsy have to happen? But if there’s anything I try to take away from the unpleasant surprises that crop up in life, it’s this…
Life isn’t just black and white, just good and bad things. It’s a whole array of situations and emotions. Some experiences maybe horrible, but together with the good times, they make us who we are. Everyone of us, is a story of a life. I try each time I find myself looking at the bad to turn around and realise that it is part of what made me me. Made me who I am today, completely individual. My struggle with epilepsy has made me stronger than I used to be.
I think of what Rafiki says to Simba in the Lion King, after he hits Simba over the head with his stick; “Oh yes, the past can hurt. But the way I see it, you can either run from it, or learn from it”. I’ll leave you with that cheesy message from Rafiki, from one of my favourite films.
Happy Tuesday Everyone