March 21st 2000
It was not long after my grandad had died that my nan came up to stay for a few days. I had given up my bedroom so that nan could have her own room for the nights so she had her own personal space and so I opted for a sleeping bag on the floor of my brothers room. It was not the ideal sleeping arrangement but atleast it meant I would not be sleeping alone downstairs.
I remember waking up to two green figures standing in the door way, the curry-like smell of the oxygen mask and somehow being transported from a fetching brown and orange sleeping bag to the hard trollies of A&E.
I remember nothing else from my time in A&E nor the following few days.
I had suffered a grand-mal seizure. 2 weeks passed with no incidences.
The following seizure took place in the kitchen. I know I was by the sink but I was unaware that I was “wet” following a petit mal seizure. I was wet as I had no control over what my bladder wished to do at that time.
Earlier that day it was a sports day at school. Sport was something I was highly competitive in as I was one of the best female runners in my year. My teacher had commented how she thought I was going to burst and the seizure followed that evening. Perhaps I had pushed myself too far or perhaps it was a coincidence. Who knew.
By the end of April 2000 I had suffered 9 seizures and by now I had been diagnosed epileptic and scans and testing were being discussed.
By now I must have been well known by the local ambulance crews. I was taken into A&E on the 31st May 2000 after another grand mal episode but subsequently sent home. Only then to be taken back in the following day and admitted to the children’s ward. Goodness knows how much oxygen I had got through on both occasions.
September 2002 and after however many seizures I finally had an MRI scan coming up. I remember the day well as it was a great mates 16th birthday, he was at school and I didn’t get to see him. After the scan and as a treat to myself I bought Bon Jovi – Crossroad on CD. But what would the scan reveal?
Being under 16 I was still in paediatrics which was uncomfortable in itself. Surrounded by children younger than yourself and thinking that they must be suffering worse because they were so young.
On one of my many visits to the hospital we sat waiting. I had been weighed, measured and all the normal things. But then everything stopped. I could not figure where I was, I felt sick and found myself seizing in front of both the waiting room and my pediatrician. To which he was grateful as it is rare they get to witness a patients seizures first hand and to see the effects is has on a patient afterwards.
I remember having numerous ECGs and EEGs but still only one MRI. The result of which came back clear. The paediatrician showed the scan to a neurologist who happened to have come up from Oxford. On closer inspection there appeared to be something there. This came a year after the original scan! From being told nothing was there to then being told there was. Did I suffer a years worth of seizures more than I needed to? yes.
I had hippocampal sclerosis.
Scarring of the temporal lobe and hippocampus.
April 2004 -
I underwent video telemetry. I was hooked up to an EEG machine and place in front of a camera. Which I must say was not very fun at all. My medication was gradually reduced so that it would induce seizures. I was in hospital for 5 days and I that time only needed to have 5 seizures recorded. But me being me I ended up 7 – 3 short and 4 tonic clonics.
This was to see if I was a suitable candidate for surgery as number out medications were not working.
Following the telemetry an appointment was made at the Royal London as it was suggested I may benefit from VNS (Vagal Nerve Stimulation). The consultant basically told me this would be of no use and that without actual brain surgery there was every risk I could die.
Back to Oxford and I underwent Amybarbital testing. In short half your brain is put to sleep at a time and tests carried out based around language and memory. In my case it confirmed that my temporal lobe was not storing anything and was not being of any use to me whatsoever. Therefore it could be removed and not have any effect on my memory or language.
In total I had
67 seizures in 2002
79 in 2003
84 in 2004 and
124 in 2005
Worse by almost 50%. It was clear the medication alone was not doing enough to stop my seizures especially the clusters.
2006 – Surgery loomed.
A right temporal lobectomy and amygdalohippocampectomy.
All went well. A rather nice black eye a few headaches but nothing to worry about. I recovered quickly but had a hard time eating the hospital food and was made to drink protein shakes just so that I had something in my system.
I was out of hospital in under 10 days.
The only thing I remember was a spider (dead or alive) in the light above me just before getting anaesthetic.
I went seizure free from Jan 2006 to April 2007.
My medication began to be withdrawn to see whether surgery alone had stopped the seizures. I was two days off of coming of all meds completely and bam! That hit me like a truck.
Yet I remain positive as I went from 124 a year – sometimes 3 or 4 a day, down to one a year.
The latest was seizure was in 2011. I was on holiday with my parents and as normal we decided to go and have a drink. Suddenly the noise from the people, the televisions and music became too much. I felt like needed to escape but couldn’t. I recall telling my mum that “my eyes were rolling back” and they were indeed.
When I came round I had somehow got from the bar back to the holiday accommodation and questioned if I had had a seizure or not. Silly I know but when you can’t remember the last twenty odd minutes of your life you know something must have happened.
So thankfully now I am coming up to 3 years seizure free and feel a little more positive about life.
I never got a chance to even apply for a provisional license and when people go on about how wonderful driving is you ignore then. They tell me I should apply now but they do not realise the fear of getting behind a wheel and having a seizure can bring.
Living with a hidden condition such as epilepsy is hard even having gone so long seizure free. As epilepsy is often not see until a seizure occurs people will say -
“Oh you don’t look ill” - perhaps because people with epilepsy are not “ill” !
“Well you best stay away from the lights then” – in fact only a small percentage of those with epilepsy are affected by strobe lighting and/or fluorescent lights flickering and the fact this has not been made more aware is often frustrating.
“Why have I never seen you have a fit” – I cannot just make a seizure happen for viewing purposes. They came when they chose! Obviously I hope that I and others do not suffer any more but unfortunately that will not be the case for many.
It was found my seizures mostly occurred in the early evening and so my medication was adjusted accordingly which has been working very well indeed.
It has in no way been an easy or fun journey for the last 14 years. Even now a strange headache, distorted hearing or visual disturbances scare me. These are known as auras.
Some would say it is an irrational fear but to me it is perfectly normal.
Having remembered how my last seizures started I feel I have to get away from the situation. I try to escape but I can’t and I am already on the way to having a seizure. Although you may be with someone you are actually alone. No-one can stop the seizure and it has to run it’s course.
Worrying that I haven’t had my medication sometimes wakes me up at night. Then I desperately try and remember what I would have been doing around the time I was meant to have taken them. The fact the trigger for my seizures was never discovered often fills me with dread.
Something that still annoys me is that people are blissfully unaware that epilepsy can happen to anyone at anytime. Those with epilepsy have a lower seizure threshold than those without but that is not to say that any person can suffer from a severe head injury or infection later on in life that may cause them to have seizures.
They are also ignorant when it comes to the fact that seizures can kill. The sufferer is in the wrong place at the wrong time (eg) in a bath, crossing the road or may suffer from something known as SUDEP (Sudden Unexplained Death In Epilepsy). I am well aware that my seizures may have caused much more that just a few bruises and a bitten tongue and that even surgery itself could have gone terribly wrong but it did not and I am still here.
Whilst typing this I did get a little upset and at times stopped for a few hours to just chill. I will be writing more soon about personal experiences with epilepsy such as school, outings etc. And shall post more about different tests etc.
Take Care xx