I had epilepsy “auras” as a small child

I’ve had epilepsy all my life - but I only actually realised around 20 years ago, when I had the first seizure that sent me unaware. I’d had the “auras” (weird feelings of fear and deja-vu that these days serve as precursors to my unaware seizures) as a small child but just used to just go hug my mum when an aura came, without telling her why.

The auras reappeared in my mid 30s

These weird feelings disappeared for years – in fact I forgot all about them - but reappeared out of the blue when I was standing on a crowded tube in my mid 30s. I recognised the feeling immediately. That’s the weird feeling I used to get as a child. Trouble was that this time, it didn’t just come and go – it went on and on until I became unaware and fell over. I went for a load of tests and epilepsy was diagnosed.

My seizures now

These days I have around two seizures every week. When I’m unaware, for a few minutes, I might …

  • Stare blankly and fiddle e.g. picking at the seams of my bag, or
  • Carry on talking (nonsense) or walking (to strange places), or
  • Fall over (very occasionally)

I’ll remain unaware for around 15 minutes, but will gradually return to full consciousness and normal function within half an hour – confused, anxiously thinking “what on earth have I just done or said?”, and very sad. What helps lift the sadness is chatting to someone or laughing. Laughter is a huge tonic for me.

 

My triggers

My triggers are tiredness and stress. The trouble is that the stress of worrying I might be about to have a seizure adds another layer of stress and the vicious circle goes on.

Treatments I’ve tried

No treatments (I’ve tried lots) have worked YET. No drugs have worked, nor has the ketogenic diet, nor has having a vagal nerve stimulator (VNS) surgically implanted. Cognitive Behavioural Therapy (CBT) has been useful in some ways, for example thinking of practical things I should do during an aura.

 

Accidents and embarrassment

Epilepsy brings me more accidents than the normal person – big ones and small ones – I went out of the office to buy lunch recently and arrived back with no lunch but with a burnt finger! It also scrambles my memory. And it brings me a ton of embarrassment – please don’t ever think I’m weird or rude if I walk out of the room when we’re in the middle of talking.

 

The positive

Epilepsy is frightening but hasn’t halted my life. I have a lovely family with a husband and two grown-up children, who all support me. I have a full-time job as a service designer making healthcare digital services. I play an awful lot of tennis, and love it. And I do feel, strange though it may sound, that having epilepsy has made me a wiser person – I have more empathy and more creativity.

Helen