Brain surgery brought me back to the person I always was, and should have been.
It’s not easy to say when my epilepsy started. I was diagnosed with epilepsy when I was in my thirties, when my son was just 12 months old.
I’d started having a few seizures in the night, when I was asleep. My husband didn’t really think anything of them. But these rapidly developed into what I call major seizures (tonic-clonic). My husband, my work and I had no idea what was wrong. Through my work, I was sent to see a private consultant. The appointment wasn’t very good. They didn’t investigate what could be wrong or do any tests. They just wanted me out of the consultation room!
So my husband and I decided that I should see someone through the NHS. I can honestly say – the NHS has been brilliant. The staff care and want to support you. After running lots of tests and scans, I was told that I had epilepsy. I was also told that it was due to a scar on my temporal lobe.
Before the diagnosis, I thought that my seizures had come out of the blue. I was in my thirties and to my knowledge, hadn’t had anything like this happen before. But the diagnosis made things click. There were so many times at school when I felt like I was on another planet – I now recognise that feeling, as an absence seizure.
My parents could identify the link between the scar and me having really high temperatures as a small baby.
Living with epilepsy
For the first five years everything was fine. I was a mother of two young children, I assessed my lifestyle, and took steps to minimise the risk of accidents should I have another seizure. I took my medication, and became seizure free again. I worked in HR for a large multi-national company; it was a stressful job, but it was fine, and I just got on with it.
Then my seizures returned. For the next 10 years I had the major ones (tonic clonics) and the small ones (absences). In fact I had these seizures for so long, that the medical terms for them changed twice. Petite mal to partials to absences! Grand mal, to generals, to tonic clonics!
The doctors had to increase my epilepsy medications, try new ones and add other ones to try and control my seizures. At best, I’d be seizure free for upto nine months. Just as I thought ‘I’ll get my driving licence back soon’ the seizures would return.
As my seizures worsened, I found that staff at work didn’t believe that I had epilepsy. Or those who knew I had epilepsy, didn’t believe that it could get worse. I was having seizures at work – so why didn’t they believe me?
My colleague’s attitudes and the stress of my job made my seizures worse. And my seizures hurt. At worst I was left with injuries, at best I was really sore. I was always left so tired that I’d sleep for days.
Again, through my employer I was sent to see a private consultant. I was more or less told to just get on with it.
Returning to my amazing NHS epilepsy team at Salford Royal, I was told that I might be able to have epilepsy brain surgery, through the NHS. Eager to find out, I consented to all of the tests that are required to find out if I was suitable for the surgery. The team had to make sure that they knew where the scarring was, and where the epileptic activity was coming from.
I also had to give informed consent to have the operation. I begged them not to tell me about the risks. They explained, as I already knew, that they had to. I tried my best to ignore them, each time they told me. Like putting my fingers in my ears, I concentrated on the fact that I was more likely to be hit by a car during a seizure. For me, I had to take this chance, the risks just had to be managed.
I had my operation at Salford Royal Hospital in August 2013. I was a bit scared, but I had to have the surgery, and I trusted the brilliant team around me. I knew that the surgery might not be a cure and might not work.
The operation went fine, and I woke up swollen and bruised. For the very first time, my parents and sisters could see how bad my epilepsy was. For the first time, it clicked that it wasn’t something and nothing. For me to resort to surgery, it had to have been bad. But I’d always found that unless someone saw me having a seizure – they never really understood it.
And after the operation
I’ve noticed that sometimes my words and sentences are fine in my head, but can come out a little bit wrong. Most of the time no one notices! If I concentrate and try again – I’ll do fine.
I no longer work in HR - leaving my negative workplace was a good decision for me. I wouldn’t want to go back. I feel that since my operation I’m still intelligent, but less sharp. My memory isn’t quite as good, and I’d struggle to concentrate that deeply and for long periods of time. I’m also not very good at making a decision - I dither more, I’m less decisive.
I still have to see my epilepsy specialists, specialist nurse and neuropsychologist for check-ups. My neuropsychologist has told me about a course designed to improve the plasticity of my brain. It would help my brain recover. I’m thinking about it. But I don’t like travelling on the bus and train on my own. I’m always worried just in case I have a major seizure.
Hand on heart, if I had to have the operation again, I would in a breath. I wouldn’t look back.
What is your life like now?
Following the surgery I was seizure free for about 14 months, but I was on a very high dose of two medicines. This caused side-effects, so with my doctor we began to reduce the dose of one of my medicines. As a result, I began to have absences, again. But do you know what? It doesn’t bother me.
As the dose of my medications came down, the real me began to emerge. Before the epilepsy I was fairly quiet, but I was also chatty and happy, and had plenty of friends.
I worry about the person I was while I was on the high dose medicines. I plastered on a smile, but I was very quiet, withdrawn, colder, slept all the time, had very low confidence and could lose my temper more easily. Friends drifted away. Some didn’t want to deal with my epilepsy, others didn’t ‘get me’ any more. At some point, I stopped talking to people; I thought that they’d judge me or fail to understand my epilepsy.
My husband never said anything - he’s always been supportive. But he’ll admit that I had changed and I’m returning to my old-self. I’m happier and have chosen not to have my medicine increased back to the high dose. I have a few friends, but would really like to increase my friendship circle – now that I want to talk again!
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