Thursday, March 28, 2013

Epilepsy - Waves Through My Head

I woke with a start. My legs and arms shaking. Cramp! I shouted at Mr H.   I was in the clutches of a wild tiger.  My brain hit the sides of my skull. A black cloud descended. I sank into it... Silence.

Mr H saved me...so he says.. a matter of debate! My first Grand Mal Seizure (now called Tonic Clonic), did not count as epilepsy. One off seizures happen for all sorts of reasons. A Brain Tumour for me...

Then...Summer 2009 I lay in bed as the sun peeped under the curtains. My arm shot out twenty times to stop non existent traffic... Epilepsy. Another uninvited visitor. A complication of my brain abscess. Drugs were tweaked... a second added to the pill pot.

Driving still out of reach due to brain surgery.... now a longer distance to travel...another year....at least.

As a nurse, a knowledge of  epilepsy was assumed. Grand Mals (generalised Tonic Clonic seizures) and Petit Mals (absences) were the extent of my understanding.  I hit Google hard and discovered they are the tip of the iceberg. A myriad of symptoms dangled from websites. Epilepsy Action and Epilepsy Society helped me link the jigsaw pieces: 

  • All epileptic seizures start in the brain
  • During a seizure the electrical signals in the brain (signals passed between nerve cells)  are disrupted or too  many are sent at once.
  • Seizures are different for each person.
  • The type of seizure depends on what happens to the person. 
  • Not all seizures involve convulsions (shaking and jerking).
  • Seizures can be focal (partial), affecting one part of the brain or generalised, affecting both sides of the brain
  • Each persons seizures tend to follow the same pattern but they may have more than one type.
  • My arm stopping the traffic was a focal seizure from the motor strip of my brain...the area where my tumour had originated.
Anti-Epileptic Drugs (AEDs) stop or reduce seizures. In simple terms they reduce the excessive electrical activity... slow down the brain. Side effects vary. My experience is of low energy levels but as my body adapts this reduces. It is hard to unpick how much of my fatigue is due to the tumour and surgery or the medication.The AEDs affect my memory...I muddle words...call birds kittens, floors tables, shoes sprouts....

Unanswered questions flooded my brain. Epilepsy Nurse discovered, appointment made, interrogation pursued, the epilepsy puzzle began to take shape. I have epilepsy, I am an epileptic, I have epilepsy..saying it out loud helped me believe...

I was awarded my seizure free year in 2011, a drivers pass to freedom was my trophy. A year of trips to the sea my reward.

But a year later a sudden wave of panic fluttered across my heart. Cotton wool fireworks showered my brain and I burst into tears with nothing to cry about...my head seizures had started. My driving stopped. My seizure diary was scattered with scribbles...is a jump in my arm a seizure...  my hand jumping across the lap top key board? ... a wave going through my head? 

More tablet changes...I drag myself out of bed after 12 hours sleep... the towel is hard to lift....

Spring  sprung... more energy...seizures less frequent... not stalled. Taxi is here, I meet my Epilepsy Consultant today....We will scrutinise my diary and see where we go from here...