women

Every day in the UK, 75 people are diagnosed with epilepsy, yet few of us know the true implications of living with the condition. Sara Brannan, 33, reveals the impact that suffering from extreme epilepsy has had on her life

What’s the worst thing that’s happened to me because of my epilepsy? Probably the time I had a fit in my bathroom and broke seven bones in one go. In fact, over the years, I’ve fractured my skull twice, my nose three times, seven ribs, my tail bone, my arm, my fingers and my breastbone (and still suffer daily pain because of those injuries). Or perhaps you’d think that it was when I was mugged while having a fit.

I was walking across a pedestrian crossing when it happened. A man behind me told everyone I was his girlfriend and was overdosing on heroin - then ran off with my bag. A lot of people believed him and left me in the road, but at least there were a few who thought a heroin addict might not be laden down with shopping and decided to help. That was more than ten years ago, and it was the last time I left the house on my own.

Description: Trapped By Epilepsy: “I can’t even leave the house on my own”

Trapped By Epilepsy: “I can’t even leave the house on my own”

It wasn’t always like this. I was diagnosed aged eight, but no one knows what triggered it, and there are no other cases in my family. Apparently, epilepsy can be caused by birth difficulties, a blow to the head, a stroke, brain tumour or brain infection, such as meningitis. The seizures are caused by a burst of excess electrical activity in the brain, which leads to a temporary blip in the message-passing between brain cells. This results in the messages being halted or mixed up. What you experience during a seizure depends on where in your brain the activity begins and how it spreads, so there are several types. I started having what’s known as ‘petit mal’ seizures, where I’d go blank and stop talking mid-sentence. I then progressed to ‘drop’ attacks, where my muscles stopped working and I’d fall, and finally ‘tonic clonics’. These were probably the worst, as I’d convulse, vomit and lose bladder and bowel control. I was put on Lorazepam, an anti-convulsant and anti-anxiety medication, which calmed things down and meant the epilepsy didn’t affect my life so much.

My parents certainly didn’t wrap me in cotton wool, and while I was supposed to use common sense - not climb on things, not go swimming alone - I was a child and, of course, I didn’t always. I broke my nose after I had a fit while I was balancing on a wall. I also had a seizure in a swimming pool and had to be rescued by the staff. I think my mum and dad did worry on several occasions, but they let me grow up as independently as possible, which I’m incredibly thankful for.

Description: When I was growing up, I dreamed of working with children, as a paediatric nurse or a teacher, but it was eventually made clear to me that that wasn’t going to happen

When I was growing up, I dreamed of working with children, as a paediatric nurse or a teacher, but it was eventually made clear to me that that wasn’t going to happen

In my teens, things calmed down further - I was only having a tonic clonic about once a month, and the vomiting and loss of bladder and bowel control stopped. I had a very strong group of friends with whom I’d grown up; they all knew about my epilepsy and what to do if I had a fit, so I had a virtually normal life. In my early twenties, I left home and moved in with my boyfriend (now husband) Paul, now 34 - although I was trying to be independent, living alone wasn’t an option. We’d known each other since we were 13, and got together when we were 19, so he knew all about my condition.

When I first had a fit in front of Paul, I was mortified, but he carried on as normal. Even now, he’s very laid-back and practical, performing first aid and calming me down. Of course, he worries about me - he regularly phones me from work to check I’m okay - and if I feel like a fit is imminent, I’ll call him and he talks me through it, reminding me to move the furniture, lie on the sofa and put a quilt over myself, so that if I do fall, the damage is minimal. The only time he becomes emotional is when people don’t understand the condition, or if I tell him someone has ignored me after a fit. He gets angry sometimes - not that people don’t care, but that they can be so ignorant about my condition, assuming I’m drunk when I’m in need of help

When I was growing up, I dreamed of working with children, as a paediatric nurse or a teacher, but it was eventually made clear to me that that wasn’t going to happen. Stress and over-excitement trigger my attacks, so I had to pick low-pressure admin jobs. I loved working, but sadly, my employers didn’t always feel the same way. I’ve been sacked from every job I’ve had during my three-month probation. Sometimes it’s to do with insurance - I have a lot of accidents at work - but on one occasion, I had a seizure and one of my colleagues started to cry. I was immediately taken aside and told I was scaring the other staff and was therefore no longer needed. I hadn’t even finished coming round yet, and they were getting rid of me. Now I don’t work at all - it’s one of the things I hate most.

Epilepsy: the facts

  • Epilepsy cannot be cured with treatment - but, in most cases, the right drugs can control it. There are more than 20 different medications currently available.
  • Not everyone with epilepsy has it for life - it can disappear.
  • Up to five per cent of sufferers have photosensitive epilepsy. Sara’s fits can be triggered by flashing lights on television - or even being driven past a fence on a sunny day.


It’s 50-50 how people react when K you do have a fit - I’ve had seizures in the street and come round to find passers-by literally stepping over me to get away, but other people are brilliant. I’m not expecting everyone to know what to do in terms of first aid, but if you do see someone having a seizure, stay with them.

I suppose one benefit of my condition is that it’s made me an excellent judge of character. I know who my friends are, as people who can’t cope certainly don’t hang around. My best friend Susan has been there since childhood - she even picked me as her bridesmaid when she didn’t know if I’d make it through the ceremony. My own wedding day was the same. I was terrified that I would fit during the service, but I kept it very low-key and scheduled it in the afternoon, when I know I’m less likely to fit. I took some prevention medicine and made it down the aisle just fine - I didn’t drink a drop of alcohol all day, though, just in case it set me off.

Description: In a way I’m lucky - I have great support from my family and friends, and have been helped by the Scottish Epilepsy Centre.

In a way I’m lucky - I have great support from my family and friends, and have been helped by the Scottish Epilepsy Centre.

Eleven years ago, I became pregnant and had my daughter, Mary-Jo. After her birth, everything changed. Within six months, I went from having serious, but manageable, epilepsy, to an out-of-control condition. Though hormones do impact on epilepsy, it’s unusual for the condition to change so severely after pregnancy. In fact, pregnancy can reduce incidents as much as provoke them. I don’t know how many fits I have a day, as I’m not aware of all of them. When I was monitored at hospital recently, they said I had nine seizures in the first two days alone. They also told me my seizures are very violent - when I asked them to describe it, one staff member said, “Imagine The ExorcistThat’s why I do so much damage to myself; there’s often no warning that I’m going to have a fit, and if I’m somewhere like the bathroom, I can bang into every hard object that’s around me. Because of this, we live in a house without stairs.

I can’t remember fitting when I was alone with Mary-Jo as a baby. But I had to plan meticulously; I did nappy changing and feeding on the floor, so that even if I fell, she wouldn’t. When she was a toddler, I’d keep her strapped in the buggy when we were out as a family, so that if I did fit, she couldn’t run off.

Sometimes I only know I’ve had a fit because I look at the clock and realise an hour has passed. Other times it’s more obvious, because I find myself on the floor. Then it’s a case of assessing whether I think I need to go to hospital or just sleep it off. I also fit at night, and only know I’ve done that when I wake up and find I’ve bitten through my tongue. The doctors are mystified - up to 70 per cent of epilepsy sufferers can control their seizures through medication**; I’m one of the other 30 per cent. I’ve been on every drug on the market -and even a few that have been taken off it. I take daily prevention medication and must take it within five to ten minutes of waking or I’ll have a fit. I’m also on a sedative that leaves me wiped out all day. My only real hope of controlling things further is if a new drug comes out that works for me.

In a way I’m lucky - I have great support from my family and friends, and have been helped by the Scottish Epilepsy Centre. This means I have a relatively normal social life (some sufferers as severe as me are housebound). It also means that Mary-Jo, who’s now ten, can grow up normally, although it’s my dream to take her out one day, just mother and daughter. Obviously, I’ve had a fit in front of her and, even though she knows what’s happening, I’ve come round to find her crying because she’s scared. She’s turning into a real campaigner, though - she does talks at school about epilepsy, and I once found her and her friends on the street selling cakes to raise money for research into the condition. She wants a brother or sister, but there’s no way I can get pregnant on the drugs I’m now taking - and I have so many falls that I probably couldn’t carry another pregnancy to term anyway.

One in every 100 people in the UK is affected by epilepsy, so the chances are you know someone who has it. Yes, it can be lonely and confusing sometimes, but it’s part of who I am and I’ve managed to achieve a rich and happy life despite it.

How To Help An Epileptic

A recent study* revealed that 94 per cent of epilepsy sufferers feel other people have no idea what they go through daily. Says Sara (below), “There are things you can do to help someone who is having a seizure. First, check there’s nothing around them on which they can injure themselves - if there is, move it. Cushion their head with something soft, but don't hold them down or put anything in their mouth. If a convulsive seizure doesn’t stop after five minutes, call an ambulance. When it does stop, put them in the recovery position (on one side, with their top leg and arm bent at 90 degrees) and check they are breathing okay. If they aren’t, call an ambulance. Also call an ambulance if they are injured or if they begin to have another fit before recovering fully from the first.”

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