Complex Partial Epileptic Siezures - Stephen's own story. (Published in Epilepsy Today)

 I THOUGHT I WAS NORMAL

On the night of 2^nd January 2005 I (half) woke up to find myself being taken down the stairs in a chair by paramedics to an ambulance. The next memory is being told in the morning that I could leave A&E. I was covered in little red blotches and Iachedlike I did a marathon the day before. My shins were covered in bruises.

I had suffered a huge seizure in my sleep and terrified my wife and son. I now know this was my first Tonic Clonic seizure. I was then 52. I had flown back from Brazil the day before – in business class with free champagne. Readers of Epilepsy Today will know that tiredness, jet lag and free booze are a very bad combination if one has epilepsy. But I did not know that then – I did not have epilepsy did I?

The following 12 weeks (while I waited for the NHS neurology appointment to come) were simply awful. I kept having very strange experiences which I now know as Complex Partial seizures. I got lost in a café. I stood in the local kebab shop fiddling with change for 15 minutes not responding. I found myself in the bathroom with my gums bleeding as I had mechanically used the toothbrush for a very long time. My short term memory was non-existent. I was terrified of having another Tonic Clonic seizure. However, if I was honest with myself, these experiences were not unfamiliar, it was just that following the big Tonic Clonic seizure they became unusually frequent. Seizures beget seizures.

Eventually I gave up on the NHS and saw a private neurologist at the Cromwell hospital in London. That meeting was extraordinary – life changing. He asked me did I ever smell strange aromas (yes I did), any feeling of deja vu (doesn't everyone?) or strong feeling that everything is unreal (deja jamais) YES! Did I ever find myself in the wrong place, did people complain I ignored them, did I find myself repeating actions automatically, did I ever 'see' sounds or 'hear'colours, have unusually vivid dreams: yes and yes again! But doesn't everyone get these things I said; this is daydreaming, absent mindedness, rudeness! The neurologist smiled and said that I was getting more than anyone's fair share and that I was probably suffering from epilepsy.

An urgent MRI scan showed I had a Dysembryoplasticlastic Neuroepithelial Tumour (DNT) and an EEG confirmed that the pesky thing was causing temporal lobe epilepsy producing Complex Partial seizures and a bad one had blown into a Tonic Clonic (helped by the free champagne no doubt).  DNTs are uncommon, usually benign tumours. I probably had mine since birth. I had some sticky days waiting for tests to confirm the diagnosis of a benign tumour. If it had been cancer I might have died of neglect by the NHS, as it would have grown while I waited for even an appointment with the local neurologists.

I then had to get used to the idea of having epilepsy. The council gave me a travel pass which said ‘disabled’ on it. I have never been ill in my life. I went through months of enduring the trial and error that comes with the prescribing of anti epileptic medication; I got big red spots and fell asleep the moment I sat down. Then one day, with a Tegretol and Keppra combination (lucky me – two sets of pills), the seizures just stopped and so far have not come back. 

But I started to look back and ask my family and friends about me. People began to describe very odd things. For example my sister said she put me on a train once after a visit and then I rang up to say I had missed it – I had just got off and it pulled out and I did not see it go. My PA at work said she was used to me ignoring her sometimes and thought I just switched off as I was thinking about something else. My mum said I had always daydreamed as a kid and it took something to get me to come around, the family just used to wait, but I always seemed sleepy after a daydream which seemed odd everyone thought. But people had just accepted my behaviour as normal, for me that is.

My partner had more worrying things to say – there were times when I gave her blank or seemingly hostile stares. She thought sometimes I was distancing myself from her and even that I actively disliked her. And then I would return to my usual self. I recall her often asking me what was the matter and I always said 'nothing' because I did not think I did anything wrong. I could not remember the incidents. I had not realised just how much of a strain this had put on our relationship. She had worried a lot about me. I remember her saying it might be epilepsy and I poured cold water on the idea; I was normal.

The sense of unreality (which I now know is called déjà jamais) used to leave me shaking and scared and the smells I had were awful. Déjà Vu is scary and unsettling.  My dreams can be powerful and in Technicolor. But then I had endured such experiences all my life. How is one to know what other people experience in their heads? I thought this is what life was like. Terrible headaches used to follow these episodes, I put these down to stress and migraines but I now think they were after effects of seizures.

Attending Epilepsy Action groups was so helpful, I heard other people's stories and found that I was not alone or mad and epilepsy is a condition that a lot of other people have and live with. I rang the helpline a few times; amazed at the matter of fact response I got when I described my strange experiences.

But sometime I used to get some great ideas along with the weird experiences that go with Complex Partial seizures. I ran my own business and came up with some wacky things, but a lot of the ideas were pretty good. I miss these creative, crazy moments; they faded away with the seizures.

Reading about other people with epilepsy helped. A passage in Dostoevsky’s book 'The Idiot' struck me.  One of his characters, Prince Myshkin, describes the onset of a seizure.

'He was thinking, incidentally, that there was a moment or two in his epileptic condition almost before the fit itself (if it occurred in waking hours) when suddenly amid the sadness, spiritual darkness and depression, his brain seemed to catch fire at brief moments....His sensation of being alive and his awareness increased tenfold at those moments which flashed by like lightning.  His mind and heart were flooded by a dazzling light.’

Dostoevsky was himself subject to Complex Partial seizures and secondary Tonic Clonics and so it seems that this character is describing the author's own experiences. The seizures never made me a great writer but there is part of me that misses their positive aspects. I think I am bit less interesting now.

However I do not want to have more Tonic Clonic seizures. At Epilepsy Action Group meetings

I have met people who have repeated Tonic Clonics and I really admire how they cope. One was enough for me. And whilst the build up to the Complex Partial attacks and the seizure could be extraordinary, I do not miss the roaring headache and memory loss I used to get afterwards.

I can drive again, having stopped for two years, only now I go straight home instead of finding myself inexplicably at my old house in my car as I did prior to diagnosis and treatment. It seems I could drive my car or beloved motorbike quite well during a Complex Partial seizure – I just did not know where to go or I followed well known routes. Epileptic cruise control. The AED dosages have been reduced but I am on pills for life. But the headaches have gone, an unexpected benefit.

More recently I have stopped feeling cursed with epilepsy but rather lucky that my tumour is (so far) benign and medication did the trick. Many people with epilepsy have it much worse than me. Though now and again I miss the seizures and the imagination and inspiration they gave – but I would not go back.

Stephen Vaudrey

London