My son has recently been diagnosed with non-epileptic seizure disorder, he is just 16 years of age and only a few days ago wrote his account of what he has been going through to post onto a web site. I will copy and paste his story, hope it helps someone and also helps him with feedback, maybe someone else has experienced similar: Please take into account, that these 'episodes/moments' can be finished by getting me to fall asleep, after this I am back to my 'normal' self and can continue with my 'normal' life. Also each and every 'episode/moment' I have, I have no recollection of any - bar one behaviour.
It's been ever so interesting seeing what has been happening to me over the past 9 months, bearing in mind that for the other 15 years I've been alive, apart from asthma and being hit by a car; they were the only two points of illness of my life - minus a few stomach bugs, and such.
November, I started with, well, my girlfriend began to notice, I had points where I would just stare blank in to space, without any show of awareness of my surroundings, I would just stare at one place, until someone touched, or shouted my name, where I would look around and finish with a massive cheesy grin on my face.
It came to mid-November where the doctors were notified and I was given multiple appointments with the same GP, she was lovely and went through every test they could possible do at a GP; they then came to the conclusion when all the tests were complete that there was a huge possibility it could be petit-mal seizures. She then recommended me to one of two hospitals, one of which was a two week wait to see the specialist paediatrician at Kingsmill (Mansfield, England), and the other was a 6 week wait to go to a closer hospital to see a Doctor with the same qualification as the specialist. but this appointment was at The Queens Medical Centre (Nottingham, England). My parents wanted to know as soon as possible so we opted for the two week wait.
It came to the appointment, when the specialist confirmed the theory of petit-mal by inducing one by getting me to hyperventilate, this being showed allowed her to book an appointment for an EEG (electroencephalogram) at the Queens Medical Centre. We heard nothing for a while to find when the appointment was. The same evening I displayed an agitated behaviour when it appeared I couldn't quite get my words out. Getting quite agitated and annoyed, I proceeded to hit things, such as walls and slam cupboards. (Please bear in mind I have absolutely no recollection of these events). Seeing this behaviour had my father drive me down to the Queens Medical Centre's accident and emergency block. Where I began to show a new behaviour instead of showing the previous behaviour. I was showing behaviour one would expect from a three or two year old.
That evening I was admitted in to the E39 children's neurology ward.
Over the 9 days spent there, each day my girlfriend would come to visit, I would look forward to each visit, but as after the second day, I became quite annoyed of sitting at my bed all day, which lead me to seem ungrateful towards her, looking back, I shouldn't have been so grumpy to her. Over the course of nine days I began to display a new behaviour, which my parents and girlfriend seemed to declare a trigger of the 'episode' which was a young baby across the ward to me, crying and screaming, in the 'episode' My face would twitch and I would hit my head, each time, would hit the exact same spot, the right temporal lobe, but as the days progressed and I became more agitated the hitting of the head would become harder, every now and again my parents, or girlfriend would film me, in a desperate attempt to show the nursing staff, or the doctors the behaviours I display.
There came a time where as we could show one of the doctors the video my girlfriend took on her phone, once we showed him, he just seemed to comment on how good quality her camera was and asked what phone she had! He didn't even comment on me, and if he'd seen this behaviour before, ever so bizarre.
I had many tests at the E39 ward, I had, urine samples, stool samples, multiple blood tests, sleep deprived EEG's, all day EEG's, CT scans, MRI scans. The bizarre part, they were all clear, everything in working order.
It came to the mid of the second week I'd been in where as the doctors deemed me safe to go home, and the same behaviours carried on, until one day 'Storage wars' was on the television, whilst I was in an 'episode' where 'Dave Hester's' way of bidding is/was a 'yeeeeeeeeeeeeep' whilst in this 'episode' every time he shouted his key saying, I mimicked him, with my own little hearty 'yip' which my parents and siblings and girlfriend seemed to find very amusing indeed, after this, we stopped referring to the seizures as 'episodes' but as 'moments'.
It was a few weeks after the transformation from not being able to form a word, or trying to for that matter, to being able to speak, not much, but it was a start regardless. After that, I began being able to form sentences and string together conversations, but not like how I would outside of a moment, but in a very childish manner. These 'moments' still happen today, and haven't really changed, the only thing that seems to change is that, where I focus on different theme for an amount of time. These themes became apparent when it was my girlfriends birthday. The main theme was birthdays. Where I would proceed to pick up an item and give it to someone and wish them a happy birthday, regardless of what the item was/is, or whether or not it was actually the persons birthday or not. When I say regardless of the item, I mean really, the 'moment' me has picked people up and given them to people as 'presents'.
The next theme seemed to be that where I would keep telling my girlfriend we're getting married. I would make rings out of paper, give her sweet rings, tell her places we're getting married, and would draw images of two people stood next to each other holding hands whilst a 'vicar' was in the middle of the two on a stand. An interesting variation of the drawing included the 'vicar having a *****'.
Bearing in mind this year was my last year in secondary education and I had multiple exams I had to sit, and 'resit' because I had missed them. I had missed four months of my last year of secondary education as school deemed me unfit to go back, as health and safety wouldn't allow it. My mother was absolutely furious that they would prejudice over a child who had missed four months and had multiple GCSE's to sit, with an unexplained disability - at the time anyway. It came to the end of the four months and my mother putting together an intervention sheet, what they would have to do if such happened, she also had to sign a form, allowing the teachers to touch me if needs be. Being introduced back in to school was hard, as people were asking where I'd been, and being assigned a teaching assistant who would care for my every need.
At first it was hard, I wasn't allowed into lessons until I was back into the general pattern of waking up. I didn't really speak to the teaching assistant who looked after me in the house office (we have houses at the school) until about a month in, when I was actually allowed back into lessons. She was absolutely amazing, anything that made me feel uncomfortable, she sorted.
Anyway, it was when I was getting back into full time education, when another behaviour came about. I would lose complete control over my body, and I would collapse wherever I was, which was a problem for school, because they had many hard wooden floors, and a lot of upstairs classrooms. But the odd things about these 'moments' is that I can recall everything that happens in them. It was tough, I'd rather me not recall them, as it's harder to see how people react when I fall onto the desk and I cannot move, but it's also good, because I could tell people how to deal with it. In the school they have a 'quad' area, where the 'quad' is filled with picnic benches to allow the pupils to eat outside under a shelter, the 'quad' itself is about a foot deep from the top step, and it's only sods law that I was stood on the top step when I had a 'moment' and if it wasn't for the help of two good friends of mine, I would have cracked my head open on the concrete floor I was dropping towards. This became a regular thing at lunch time. Personally I think it was the general amount of noise the pupils were talking which could have triggered it; but my friends were always cautious and always caught me, except for one time, where I fell back and hit my head on the top step. I couldn't remember anything after that, apart from waking up at home in bed.
It was mid May where I was half diagnosed with Psychogenic Non-epileptic Seizure Disorder. Which the family were happy with to receive. It was a start, finally after months of nothing, we finally had something to go off. After that we were referred to the Psychiatry team at the Queens Medical Centre where they confirmed the Psychogenic Non-epileptic Seizures. We still see the Psychiatry team today, and we have fortnightly meetings to see how things have progressed/changed.
Nothing had changed up until a few weeks ago, where a new behaviour was developed, where once again I couldn't talk, or recognise others are talking to me. The childishness of the 'moments' are still present in the new 'moment' as I would pull out toys from when I was around 4/5 like the old 'brio'. It's only been this past week, where I have began to jump over my garden fence and go for a walk, after that (it's happened twice, so I'm just averaging), that I wake up in the other childish 'moment' state where I find myself to be lost. The first I was discovered by my brother and my other brothers boyfriend who came and found me only about 20 metres up the road, but tonight (August the 2nd) that I had wandered into a wood nearby, and woke up in the other childish 'moment' state once again, where I was seen to be completely lost, the 'moment' me rang my girlfriend and told her that I was lost, to which she told me to look for a house, after a few minutes she rang my mother, who in turn got the police looking for me. To show how childish the 'moment' me is, I referred to a slug as 'A monster'.
After about an hour of being on the phone to my girlfriend, I was told to hang up as the police were going to ring me. The person who spoke to the 'moment' me told me what to do, to which I followed the instructions, he then told me that a police helicopter was going to land, and that I should wait for then, it was only after the helicopter landed that I was escorted off of the field I was lost on to where I was taken home safely to my parents. It was only after I had waken up on my sofa, to which I was greeted by a police man, who told me of all the events that had taken place this evening.
If you have read all of this, I am truly grateful you have taken the time to read and see what the past 9 months have been like for me, it hasn't been easy for anyone, my family, my girlfriend, my friends. It's been hard on us all, but I am so grateful to them all for sticking with me throughout it all.
Thanks again, and I hope it has enlightened you all to how serious these conditions actually are.