‘We had no idea our son was at risk': readers on living with epilepsy

Times

3 days ago

When the writer Caroline Scott revealed how epilepsy had blighted her 24-year-old son's life, comments from our readers poured in. Here, you share your stories about losing children, living with the risks, caring for loved ones and building awareness around an often invisible disease.
Despite epilepsy affecting 630,000 people in Britain, and causing 21 deaths a week, readers described pervasive misunderstanding of the condition, especially Sudep (sudden unexpected death in epilepsy).
Hussey's daughter Libby died from Sudep last September. She was 38.
The NHS was brilliant. We were close to a very good centre of excellence here in Bristol, where there was a neurology unit.
The only time it wasn't helpful was when Libby left university and their advice from a nurse was that she should go home, join some local support groups and we should monitor her in every room. Libby turned to me and said, 'Bleep that, I'm going to live my life.'
She was incredibly brave and always hopeful. She lived a full and fulfilled life. She went to university, eventually found a job she loved and was happily married. All the time I lived in dread of the phone, every ambulance siren could be her, every unanswered call could only mean one thing.
My only comfort is that she lived life on her terms, despite the epilepsy. We miss her.
Verbeeten was diagnosed at 25, after seven years of occasional seizures that doctors had attributed to lifestyle and work stress.
I was not in a rush to be diagnosed with epilepsy! Finally, I had a bad [seizure] while driving and could not ignore it any more — I ended up in a ditch having crashed through two farm gates and a fence. I have had seizures on ski slopes, in public, at home and during important business meetings. I'm usually oblivious to what is going on — it's much more distressing for the uninitiated in attendance.
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I had my first seizure at 71. You read that correctly — people over 65 are the age group most likely to develop the condition for the first time. It is about time that epilepsy is properly recognised and resourced for research, diagnosis, effective treatment and public awareness of late-onset epilepsy in fit, active seniors like me.
After his son Tom died from Sudep in 2015, aged 24, Sibree became a trustee on the board of Sudep Action, working with bereaved families and raising awareness about the condition.
We had absolutely no idea that our son was at risk of dying. We found Tom in bed in the morning. He wasn't getting up, so his mother went up to him — and he was dead. And he went to bed the night before and all was well. It's so sudden and so heart-wrenching. There are no goodbyes. It's out of the blue and it's brutal.
Through Sudep Action, we talk to lots of bereaved families. The story again and again is 'We had no idea', 'We were not told' and 'We didn't know that this was something that could happen'.
Epilepsy itself is difficult to understand, and some GPs seem to have no understanding that Sudep — which clearly impacts more people than we might think — is a risk that epileptics run.
When you think it's been a known condition for so long, it's staggering how little the medical profession know about it.
Stone's son Dorian had his first seizure at 14. Now 37, he lives and works in Poland, where he has healthcare (both private and through work).
Puberty, GCSEs and epilepsy all rolled into one catastrophic event for Dorian that has lasted years. While employers are mainly ignorant of the condition ('You don't look like you have epilepsy,' one said to him), the real everyday issues are with the medication. They make the sufferer exhausted, dopey (for want of a better word) and therefore less present and productive. I live in constant fear about him losing his job as he now has a son and a mortgage. He will never have a well-paid job but he seems to be accepting of that, while it gives me sleepless nights as we are not in a position to support him financially.
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From 1968 to 1969 I had about 18 jobs — out of one job, into the next really. I stopped mentioning epilepsy in 1970 … no sackings.
More recently, I had a fit in the street. When I came to, cars were going around me with passengers leaning out, recording footage on their mobile phones. No one came to my aid. One lady said she thought I was one of many 'dipsos' [alcoholics] who gather nearby. I found my own way to the hospital, where I had a CT scan to see if I had a bleed — mercifully not — and an x-ray confirming a rotator cuff muscle had detached.
Both of Colston's daughters are epileptic. The elder developed it later in life after her first pregnancy and has her seizures under control, while the younger has to navigate systems not well-suited to epileptics.
The younger daughter, now 31, started having absence seizures at puberty, which progressed into tonic-clonic seizures first thing in the morning whenever she was ovulating or had her period.
Her life changed dramatically. She was constantly put on different drugs as they tried to find something that worked. One of them led to weight gain, others changed her personality. She never learnt to drive, and she never will because her seizures are still not controlled.
Her seizures all happen in the morning, and jobs that can accommodate that are so few and far between. She has found a job now which is based in the US and Canada, so the shifts start later in the day. However, she's paid minimum wage.
And because she doesn't drive, and public transport is so useless and taxis so expensive, she really is stuck where she is.
She couldn't possibly go on and study music as she would've done. She was a singer and a flautist, but sadly her absence seizures are exacerbated by hyperventilating.