International Purple Day - Epilepsy Awareness
Tomorrow, March 26, is international Purple Day, for Epilepsy Awareness. It was started by Megan Cassidy, an eight-year-old Canadian girl with epilepsy, in 2008.
I knew very little about epilepsy before my daughter was diagnosed. I know now that about one in a hundred people in the UK have it, and about eighty-seven people a day in the UK are diagnosed with it. It’s a fair bet that someone reading this will have epilepsy or know someone who does.
‘Epilepsy’ is an umbrella term for lots of different types of brain activity. Most people associate it with tonic-clonic seizures, what used to be called grand mal, with the full bells and whistles convulsions. But there are many variations on this particular theme, including ‘absences’ lasting a few seconds, sudden and silent collapses when the muscles go limp, and more or less violent jerks during which the person remains conscious. I could put together several thousand words on seizure classification alone.
Some people get a brief warning, an ‘aura’, before a seizure. Others don’t. Some people are photosensitive and react to flashing lights, others don’t. To my daughter’s great relief, flashing lights do nothing to her, and she can nightclub it with the best of them.
She has tonic-clonic seizures, with an aura usually lasting a few seconds. She can’t describe the aura, it’s just ‘that feeling’. Sometimes it lasts only long enough for the person with her to notice she hasn’t replied to a question and prepare to catch her. Sometimes she’s able to lie down before she falls down. Sometimes not.
She’s twenty-three now and had her first episode about six weeks before her nineteenth birthday. It was Halloween, and she was due to go to a party that evening. She hadn’t been very well, but she was determined to go, so she was having a lie down.
I put the kettle on and went upstairs to see if she wanted a cup of tea. She’d been asleep, so she was a bit drowsy, but she said no, she’d have a glass of water. When I brought the water she still seemed very woozy, and I voiced doubts about the party.
I went out on to the landing.
I popped my head round the door. The glass was on the floor, the water seeping into the carpet. She was sitting on the edge of the bed, looking puzzled. ‘I couldn’t hold the glass. I’ve got the shakes.’
I felt her forehead. She didn’t feel hot. She suddenly gave a jerk, an involuntary, violent flash of movement. Then another. And another. At that point, I’d never heard of myoclonic jerks.
‘Mum? What’s happening?’
‘It’s probably nothing, but I’ll pop down and get the phone, and we’ll ring 111 and see what they advise. You lie back down. I won’t be a moment.’
I hurtled down the stairs and back up again in seconds. By the time I got there she was on the floor.
If you’ve never seen someone you love have a violent tonic-clonic seizure, out of the blue, and when you have no idea what’s going on, don’t put it on your bucket list. Her arms were stretched out rigid above her head, joined at the wrist in a lock I knew I would never be able to undo. Her legs too were rigid. Her whole body was convulsing in what looked like her own personal earthquake. Her back arched. Her eyes rolled up until only the whites were visible. Her face turned purple, then deepened towards black. She wasn’t breathing.
I’m not quite sure how I managed to dial 999. I don’t even remember doing it, but suddenly I was screaming at the call handler. She told me it sounded like a seizure, but my daughter didn’t have seizures. My beautiful, perfect little girl didn’t have epilepsy or anything else. I screamed that she wasn’t breathing. Very firmly, the voice on the phone told me on no account to attempt artificial respiration.
I have no idea how long that first seizure lasted, apart from forever, but eventually the convulsions slowed, and stopped, but she didn’t come back to me. Her eyes stared at nothing. She started a rasping snorting that sounded like nothing I’d ever heard. She foamed at the mouth. She wet herself. I was convinced that something cataclysmic and irreversible had happened to my baby, and this snorting, foaming shell was all that was left.
The call handler cut through my weeping to tell me gently that the ambulance had arrived and I would need to go and let the paramedics in.
By the time we got back upstairs, she was sitting on her bed, looking bewildered.
It took lots of tests and several months for it to be confirmed that she has epilepsy. People can have one off seizures, through illness, or even extreme fatigue. She’d been in a demanding community theatre production, with open air promenade performances in the cold, and she was recovering from a bad case of the snuffles. We hoped it had all just got a bit much for her. But the tests showed she had irregular brain wave patterns. Now we had to think about managing it.
I say we. Obviously, it was all down to her.
She didn’t take it well. For almost a year she fought against having medication. She wasn’t going to be on pills for the rest of her life. She’d manage without. Of course, behind that was the desperate hope that if she ignored it, it would go away.
As epilepsy goes, hers isn’t as severe as many, and she could go several weeks without seizures. But they started getting more frequent, and she started doing her own research into the risks of not treating them. It was a bugger and a half, watching her work this out for herself, wanting to just scream at her, ‘Don’t be daft! Take the sodding pills!’ but she was an adult, and she was the one who would have to live with any side effects from the medication. She was also the one who had to accept she had a chronic condition that really wasn’t going to go away by itself.
Eventually she did accept it, although there are often times when she feels she hasn’t made her peace with it.
Epilepsy is a developing thing. It can take years for it to ‘settle’ into predictability, if it ever does, and medication that seems to be controlling it well can suddenly cease to be effective. It takes a while to work out the individual triggers, and the person’s usual pattern. At nineteen, my daughter was not over-impressed to be told her triggers include fatigue and excessive alcohol. She’s pretty much worked out her tolerance levels now and, being a bit older, doesn’t regard it as a sign of weakness to leave the club or the party before other people. However careful she is, she still has seizures every four to six weeks, not often as spectacular as that first one. She sometimes ends up in A&E, either because the seizure is more serious than usual, or because she’s been with people who’ve never seen it before and automatically called an ambulance. The seizures worsened when she first went to uni last year, which wasn’t surprising – stress can also be a factor - but she bit the bullet and had what could have been a difficult conversation with her new flatmates. They turned out to be supportive and lovely people and by chance include a trainee paramedic and a trainee physiotherapist, so she struck gold there.
I now know a lot of things about epilepsy that I don’t want to know. I know that repeated seizures can cause memory loss and problems with concentration. I know about SUDEP, sudden death in epilepsy, which is not directly connected to seizures. It’s a bit like cot death – no-one knows exactly why it happens. About one in a thousand adults with epilepsy will be a victim of SUDEP, and those with tonic-clonic seizures are most at risk. I know about status epilepticus, where lack of oxygen to the brain if a seizure lasts longer than half an hour, or if two or more seizures immediately follow each other, can cause severe brain damage or death. My daughter’s most recent seizure lasted twenty-seven minutes. It showed no sign of stopping on its own and the paramedics had to bring her out of it with an emergency dose of diazepam. I put to the back of my mind what might have happened had she been alone. On the plus side, she didn’t give a stuff about anything much until the diazepam wore off.
I know that some medication can cause problems with fertility, and when my daughter was regularly having violent seizures she was advised sodium valproate might be the best option, that being the one that stays in the system and causes severe foetal abnormalities. Fortunately the seizures did calm down, at least for a while, and she hasn’t had to make that decision yet.
I also know, of course, that loads of people are able to get on with their lives, have good careers, have families, and manage their epilepsy brilliantly. My daughter is doing her best to join them. She’s enjoying uni, she goes off on holiday with her friends, she goes out clubbing and all the rest. She worked for four years before going to uni, with one employer who was singularly unhelpful, and then one who was brilliant. Two years ago she ran the London Marathon to raise money for Epilepsy Action - there's a link below to the piece I wrote about that. She’s put up with arseholes making fun of her and had wonderful support from friends who punched the arseholes. She’s still beautiful, and still perfect, and I’m immensely proud of her, in case you couldn’t tell.
I asked her if she would mind me writing about her for Purple Day, and what she would most like me to say. She was very enthusiastic – the more awareness the better. Epilepsy research isn’t as high profile as some other areas, and there is still a lot of stigma attached to the condition. In 2013, the Young Epilepsy website published a report which included, among other things, statistics about people’s reactions when children had seizures. Negative responses included:
· 43% telling them they were mad or crazy
· 41% telling them they were sick [not in a supportive or understanding way]
· 29% telling them epilepsy is contagious [I assume I don’t have to say that it isn’t]
· 20% accusing them of being possessed
· 18% asking if they could speak to spirits
· 16% telling them they should be locked up
(A link to the Young Epilepsy page is provided below.)
This is in the UK, in 2013. No wonder the same report showed that 55% of adults surveyed wouldn’t disclose their epilepsy to a new acquaintance for fear of the reaction.
Epilepsy can be associated with other conditions, of course, including autism, stroke, traumatic head injury and many others. People with mental health problems can have epilepsy, and people with epilepsy can have mental health problems. But they’re different conditions, that sometimes co-exist.
If I sound like I’m stating the obvious, and insulting the reader’s intelligence, I do apologise, but I have had some bizarre conversations over the last few years.
My daughter also said she would like to highlight the lack of general information about how to react to someone having a seizure. It isn’t automatically included in First Aid Courses, for example. When she was on holiday with a friend and had a fairly mild seizure in the hotel lobby, the tour rep, supposedly a trained First Aider, informed my daughter’s friend that the best thing to do was to force the jaw open and give artificial respiration. Fortunately the friend had seen a lot more epilepsy than the tour rep, and physically got between them to prevent what might well have been the shattering of said jaw. The other suggested action, placing a spoon in the mouth – well, no. The jaw is probably in bits again, and the patient chokes to death as well. With tonic-clonic seizures, all anyone can do is minimise the risk of injury as far as possible, put them in the recovery position afterwards, and call an ambulance if it’s their first seizure, or it goes on longer than five minutes, or if they start to have another one immediately after the first. If you’re interested, there’s a link below to a very informative Canadian video showing how to help someone having a tonic-clonic seizure. The Epilepsy Action website (link below) also provides a wealth of information about what to do in the event of different types of seizure.
And, my daughter says, please remember that, like any other condition, epilepsy does not define the person.
Everyone with epilepsy, and everyone around them, has a different experience. This is just ours. Thank you for reading.
Epilepsy Action: https://www.epilepsy.org.uk/
Young Epilepsy Survey: https://tinyurl.com/y8zccenw
Castle Pillock at the London Marathon: https://www.abctales.com/story/airyfairy/castle-pillock-12