Epilepsy and me - Part One

I thought about crafting last week but in the end did not get round to it.  There is always something to do craftwise but this week just was not the week for it more's the pity.  I hate wasting time or not doing anything but this week I have had to listen to my body.  I am a workaholic and don't know when to quit at the best of times so I think this latest episode  was a warning (we call it switching off in my family as basically my electrical system goes into overdrive and then fuses out.  Just before I go out I get what is called the aura which to me smells of burning cordite/rice cakes).

I was diagnosed  with epilepsy at about 7.  The little girl who lived next door had whooping cough.  It was the one illnesses my mother was terrified we would get and we were marched off to the GP for the set of injections polio, diptheria and whooping cough I think were the illnesses covered as soon as she was diagnosed. We had not had them when we were younger.  Mum had taken me to to the Doctors to show that injections did not hurt and had an injection to show me and I got all hysterical at the Doctor telling him not to hurt my mummy and got into such a state they could not give me the jabs.  

About a week after being carted off to  have one of the booster injections  I started stopping looking at myself whilst combing my hair in the mirror.  Mum spotted it and used to question me but I was not aware of what was happening.  So I was marched off to the Doctors again. 

We cannot prove it but due to the close proximity of me having the jab and then starting to have the absences we have often wondered as a family whether or not the booster jabs were to blame being put down to rogue batches but we cannot prove it and I am very lucky in the greater scheme of things in that I have no brain damage and that for the best part I can function on a relatively normal basis whatever normal is.

GP would not have it that there was anything wrong with me and I ended up going to see Doctors at the hospital who confirmed that I had epilepsy.  GP still would not have it and in the end I was getting worse with the absences that Dad insisted on a second opinion.  I was sent to Addenbrookes for an EEG (a hairnet with electrodes that tests the electrical activity of the brain) and they ran a series of little tests whilst I was "Wired up" which included using a strobe light and I went out under the strobe proving conclusively that epilepsy was the problem.  That test proved that I was light sensitive and  They believed that because I had virus pneumonia as a child and collapsed with a temperature of 106 degrees that this is what had triggered the seizures.  We as a family did not find this logical though as I had not shown any issues in the five years in between.  Virus pneumonia does and can leave hidden scarring usually with the heart.  With me it seems to be that my temperature gauge is broken and my temperature if it goes up goes up suddenly and without warning, triggering further seizures as a by product.  Doctors say this is not possible but it does and has happened repeatedly over the years.  I can only speak as I find.

I was then popped onto a long term seizure medication called Zarontin but they never did get the petit mal absences under control until I developed the Grand Mal due to a reaction with some new medication that I had been given. It worked the wrong way round when I was 16; I was told it would make me very sleepy - quite the opposite made me very lively and then I just burnt out.  Needless to say I was taken off that medication pretty smartly. I have a history of reacting to medications but the only way they find out if I am okay with the medication is to give me it and see.

Continued on Part 2