I was thinking of ideas for new blog posts and I suddenly realised that people reading the blog may actually know nothing about my epilepsy diagnosis or how it all began. So here goes, a brief insight into where it all started :
- Before the 1st seizure –
I was in year 5 at school and was non the wiser of what was to come. I was sat in class just like every other day looking at the whiteboard and eagerly scribbling down some notes. But this day was about to become very different. According to my teacher, I began to stare in to space, repeatedly tapping my finger on the desk and became unresponsive. I had no recollection that any of this was happening as I had completely blanked out and even after coming round I couldn’t remember a thing! ( I now know that this was an absence seizure but at the time nobody knew what had caused it. The easiest way to describe what an absence seizure is : I stay conscious however I am unaware of my surroundings, I go blank and I am unable to respond to anyone or anything.) I ended up in the back of an ambulance and little did I know this was the start of my epilepsy journey.
- The first “official” seizure –
It was Christmas Eve 2010 and like most children I was extremely excited. I had just woken up and was lay in bed relaxing until the next thing I knew, the bed that I was in was now a hospital one. I’d had my first tonic clonic seizure. These are the seizures that people stereotypically associate with epilepsy and are often referred to as “full blown seizures”. I was very confused as I came round and once again I couldn’t remember a thing. (I never do after a seizure). I ached like mad, my head was pounding and i’d also managed to bite my tongue. The doctors describe it as feeling as though you have just ran a marathon. As the doctors explained to me that I had just had a seizure I tried to take in all the information that they were giving me, but as a 10 year old all I was bothered about was getting home in time for Christmas Day. I had brain scans but theses surprisingly showed absolutely nothing?! Regardless of this they put me on medication and referred me to a specialist doctor. I was told as long as I didn’t have a headache I was able to return home to enjoy Christmas. Of course I told them I felt fine (I would have done or said anything to be able to be at home on Christmas Day) but I may have had to have some paracetamol when I got home for my headache! oops.
- Growing out of it? –
Since that day I have changed my dosage of medication on several occasions and even completely came off all medication for a couple of weeks. They believed that I may have ‘grown out’ of having epilepsy and wanted to see if I was able to live without the medication. This was all going well for around two weeks until one weekend I had 5 seizures and ended up in hospital. I was immediately put back onto my medication and continued to see the specialist epilepsy doctor on regular occasions.
- Another type? –
I then (kind of stupidly) believed that I would be seizure free. This was until I began to have some strange ‘episodes’ every morning when I woke up. I would drop anything that I had in my hands and my mind would completely shut off for around 2-5 seconds. The way I described it to my doctor was as though someone had turned a light off in my head and then turned it back on. When I mentioned this they immediately said I was having another type of seizure each morning. They named it ‘Juvenile Myoclonic Epilepsy‘ and that was what was causing these ‘episodes’. With it being me nothing is ever straight forward and typically I was on the medication that made this type of epilepsy worse! (only me…) Anyway, I then had to immediately start to transition over to another type of medication. They said I would have had to do this eventually anyway if I ever want children as some anti epileptic medication can be extremely harmful during pregnancy. This transition took a few weeks to successfully complete, however once I did eventually the ‘episodes’ began to reduce and then finally stopped completely.
I am still on this medication today and my dosage was increased around 7 months ago. The scary thing with epilepsy is a large amount of the treatment and medication is a case of trial and error and finding the right combination for each individual. There is no one solution that fits all. Also, of course every medication has it’s side effects but compared to having seizures they really are nothing!
Here’s to hoping for a seizure free year!
I hope this gives everyone a little insight into my epilepsy journey so far and I hope it wasn’t too boring for you to read through.
Molly x
A Life With E 