In which I raise some awareness of epilepsy

Today is Purple Day, a day for awareness and fundraising for epilepsy. In the UK alone, there are about 600, 000 people living with epilepsy, myself included, and it’s still a disability which a lot of people don’t understand. This leads to general stigma, but also a fair few fuck-ups from people trying to help.

When someone is having a tonic-clonic seizure, it looks terrifying. I’d always wondered, upon waking up from one of my own seizures, why everyone was running around like headless chickens and practically snogging me in relief. One time, when I was stuck on an overnight stay in hospital, I saw someone else fitting, and I suddenly knew why. It really does look awful.

Fortunately, a lot of the time, it’s not as bad as it looks. Here’s some really useful advice for what to do, which I’m going to repost here because it’s so important (you should also click the link and watch the video if you can).

Do…

  • Protect the person from injury – (remove harmful objects from nearby)
  • Cushion their head
  • Look for an epilepsy identity card or identity jewellery
  • Aid breathing by gently placing them in the recovery position once the seizure has finished (see pictures)
  • Stay with the person until recovery is complete
  • Be calmly reassuring

Don’t…

  • Restrain the person’s movements
  • Put anything in the person’s mouth
  • Try to move them unless they are in danger
  • Give them anything to eat or drink until they are fully recovered
  • Attempt to bring them round

Call for an ambulance if…

  • You know it is the person’s first seizure, or

  • The seizure continues for more than five minutes, or

  • One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or

  • The person is injured during the seizure, or

  • You believe the person needs urgent medical attention

The thing about calling an ambulance is especially important to me.  Most times after I’ve had a relatively uncomplicated seizure, someone has called an ambulance. I have then been carted off to A&E, which is a waste of my time and everyone else’s, because what I really need to do is just go home and have a bit of a sleep because my body is telling me it’s run down.

I also can’t stress enough the importance of putting someone on their side afterwards: I have a tendency to vomit after seizures, and that can be fatal if I’m not on my side. And I have really appreciated having someone around, partly because after seizures I’m usually a bit confused, and partly because it’s nice to have someone around to look after you, because having seizures is really sucks.

All of this is good advice if someone has tonic-clonic seizures and it’s worth reading over and over until it sinks in, because that knowledge could save someone’s life–or even just stop a seizure from ruining their day.

But what if someone has a different kind of seizure? I’ve written before about the other weird stuff my brain does, and how sometimes I get very intense and weird experiences where I’ll zone out for a bit. Partial seizures affect a lot of people, and affect a lot of people in very different ways. With me, I look intensely happy, because most of the time I’m kind having the sort of experience that most people spend a fair amount of money to get drugs to simulate. But other people might do other things, like pluck at clothes, or smack lips, or look not-all-there, or wander around. The general advice here is wait with them for the seizure to stop, and try not to let them walk into anything dangerous while it’s going on. Again, you can find full advice here.

I’ve lived with epilepsy for half of my life: I was diagnosed at 14 when puberty kicked in and my hormones went haywire and I started having tonic-clonic seizures, in clusters, which meant I’d never just have one, I’d be having four or five in close succession. I was in and out of hospital a lot during that year of my life and placed on some pretty heavy medications which made me miserable and slow. I don’t really remember much about the years I was on those meds (Epilim, 1000mg per day), except that sometimes I’d have hilariously dramatic nosebleeds without noticing until everyone stepped away with an expression of howling horror and I’d look down and notice my entire front was covered in blood. On the plus side, it stopped the seizures completely. I came off the meds about two years later, but went back on a far lower dose about three years later, following another cluster of seizures. Again, I didn’t get on well with the drugs, even at a lower dose, and came off them six months later. That year, I went on the contraceptive pill, which seems to have helped a lot: I still get the occasional tonic-clonic seizure, but never in clusters, and the seizures are shorter and I wake up a lot quicker. They only ever happen when I’m seriously run-down, and on the break between packs of pills, so with a bit of self-care and this understanding of seizure triggers, I can manage my epilepsy without meds.

The thing that helps most of all, though, is that people understand. I need people around me to know what to do if I do have a seizure, but also, I need the stigma and the ignorance to go away. Epilepsy can and does affect anyone, and it can affect everyone differently. It’s worth making an effort to learn about it.

Also, since I’ve done my bit for awareness, I might as well do my bit for fundraising. Why not donate a bit of money to Epilepsy Action, who have been a vital source of support and information since I was diagnosed?

While it can probably never be cured, epilepsy can be managed, and we people with epilepsy need your help to make sure we can do it.


5 responses to “In which I raise some awareness of epilepsy

  • cabrogal

    I share my life with someone who suffers seriously from epilepsy and endorse everything you’ve said.

    However I stopped supporting Epilepsy Action Australia when I realised they were backing research (both with promotion and advocating to members to become research subjects) that not only seeks genetic correlates for epilepsy but seeks to patent the genes it is trying to link to the disease. EA members were not told of the patents nor of the implications to them of having their genes ‘owned’ by a private research company.

  • The Fat Pastor

    Reblogged this on The Fat Pastor and commented:
    Today is National Epilepsy Awareness Day, and a little bit of knowledge could save someone’s life. I’m wearing purple, and found this blog when I followed the #PurpleDay. Vulgarity warning – but a very good read.

  • princessmousey

    Very nice. Thanks for sharing your story. Thanks for helping.

  • Byghan

    Several people I care about have regular seizures… mainly partial complexes with altered consciousness and sometimes repetitive movements but I have also dealt with a few tonic-clonics.
    My recommendations (as well as the above excellent advice) is always that people give the person having the seizure a bit of time to recover themselves but stay close, don’t rush them to regain speech and movement and reassure them about what is real/help them remember where & when they are if necessary. Also don’t be afraid of bodily fluids, not understanding what they are saying and random jerkiness – its all manageable and not worth worrying about. If you are in doubt treat it a bit like shock (keep warm, monitor intakes, don’t leave alone too much) and remember disorientation and memory loss might be annoying and scary for you but they are worse for someone recovering from a seizure – Be Patient.

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