……over the edge

I am in my forties and YES, routine is a form of security, even peace of mind. I have been epileptic since my ‘teens and I have grown with the many problems it can present. So I not only looked to medication and Neuro-advice from Specialists for assistance but read up on the problem and soon found breathing exercises could fight-off a fit or an absence (complex partial seizure) or by focusing my concentration on other things, a complete lateral change in thought or activity could offset an attack.

If there is a definitive ‘trigger’ around I try to physically walk away, but the most self-assurance and confidence I have found is in ordered, structured days. This is how I came to understand the culture of Japan particularly, simplicity of structure and order in everyday activities or more complex things and how order in your home actually reassures by telling you what has happened in those moments of partial, complex or even full seizure.

"I am OK, but where is the TV controller"? Looking is easy because there are few hiding places and everything is tidily in its place, so after opening a few lids looking under the bed, etc. I give up!  I go to make a drink and there inside the fridge is the TV remote, the kitchen has been cleaned, the washing up is done?

Everything is tidy, and perhaps this is unique to me but it is interesting how the auto-pilot things you do everyday, repeated so many times such as cleaning, tidying, sorting seem to step in while I am having a ‘complex partial seizure’.

What is a complex partial seizure? My Consultant Neurologist writes -‘ These are really the next stage up from simple partial seizures (which may last seconds) and the clue is in the word ‘complex’. In these, the seizure involves a larger part of the brain and spreads to enough of the brain so that the patient is no longer aware of his or her environment (that is, becomes unconscious).

The spread of the seizure can either be so fast that the patient does not experience the simple partial seizure, or be slow enough for the patient to have, for example, a feeling of deja vu, a strange unpleasant taste or an awareness of coloured flashing lights lasting seconds to a few minutes before becoming unaware of the surroundings.

During the seizure, it is quite common for complex, strange or inappropriate actions to occur (called ‘automisms’). For example, the patient may fumble with his or her clothes or make chewing movements. Occasionally, the actions are co-ordinated and can even take the form of running, dancing, undressing or speaking in a confused fashion.

These seizures usually last only a matter of minutes, but occasionally are more prolonged. On coming round, the patient is completely unaware of what he or she has done.

Of course this is only a small segment of a very useful handbook and not the whole story, I recommend this book to anyone at any stage of their condition, and their family or carers as it is written for the information of the patient, in plain english and has explained things to me, even after 30 years of losing the TV remote!

It is inexpensive and called –

UNDERSTANDING EPILEPSY

published in association with the British Medical Association (BMA)

by Dr. Matthew Walker and Professor Simon Shorvon

ISBN No. 1-903474-39-6

I hope this is useful.