Monday 28 April 2014

The day I could have died.

The sun is shining today and as I sit looking through my photographs of recent times with friends with the cat curled up next to me, I can't help but think about the fact things could have been so very different now. 

What I am about to type is made up of what my family have told me and the tiny fragments I remember of the few days myself. It's the story of the day I could have died January the 21st 2014. I know every seizure could kill me but this time it was the very thing that was trying to save me that backfired.

Despite waking up from a longer sleep than usual slightly later in the morning my day started off like most others. I wandered down stairs and put the kettle on to make a cup of tea. My dad returned home from taking a couple of clients out for driving lessons. We were sitting at the kitchen table with our drinks chatting away when my vision started to roll. I can’t quite explain how this looked to me… maybe a little like an old tv used to scroll from top to bottom of the screen continuously. It was so fast and overwhelmed my entire vision. I turned to my dad and asked him if my eyes were moving at all when his answer came as a “no” I went onto explain what was happening. He told me to go and lie on the sofa with my eyes closed to see if it passed. At first this actually worked in that if I lay with my eyes closed my world was still again but as soon as I opened them again the rolling vision was worse than ever. By now something was obviously wrong as my balance was beginning to go as well and even trying to sit up was near impossible. My dad rang up my doctors surgery to see if they had any emergency appointments, there weren't.

In the mean time my step-mum returned home apparently I was blabbing away all sorts of rubbish whilst trying to sip a drink to try and feel a little better. As long as I kept my eyes closed as far as I knew I felt alright despite now knowing I was acting very strange. Things soon changed though and even with my eyes closed my whole world started rolling and swaying. Despite lying down and trying to focus I soon started feeling very sick and before long out came the buckets and towels that I swiftly filled time and time again.. My parents tried ringing the doctors surgery again and ask if a doctor can come out and see me but after them explaining what was happening they were told that the surgery were calling an ambulance to come to the house.

We live in the middle of the countryside miles way from anything so a first responder is sent out ahead of the ambulance as they can travel faster. They arrive within minutes and place me on oxygen whilst we wait for the ambulance. My general doctor also comes around to the house to witness what is going on. Apparently one of the first things he said was "well there's no waiting for you for your referral young lady" (I had already been referred to a new Epilepsy specialist by my previous neurologist) I had been to see my general doctor the week before to ask for it to be sped up, I guess he got a shock when he saw why..

In the ambulance I’m drifting too far into unconsciousness so they attempt to wake me time and time again. My heart isn’t beating properly so they repeat and ECG to check. My hands are blue and freezing cold. I'm sick a few times more during the journey whilst unconscious. We arrive and despite the constant news reports of ambulances having to queue outside of accident and emergency departments at hospital I am taken straight in. Once I'm in the hospital they struggle to find access to my veins to give me fluids, in fact one of the junior doctors tells my family that I'm the first patient he has not been able to cannulate.  Eventually though and leaving me looking like a pin cushion they are able to get a cannula in.  Whilst waiting for the my blood results to come back I have some more seizures. Thankfully later that evening I am stabilised and conscious enough to talk a little although still very poorly and extremely tired. I couldn't open my eyes due to the intense rolling vision that was still occurring and a incredibly painful headache that left my barely able to tolerate the harsh white hospital lighting. I'm stable though, brought back from a serious case of deaths door. I have no idea what they pumped into me that day but I'm so thankful that it worked.

It turns out my latest anti-epileptic medicine had been gradually building up in my system until it reached the point of toxicity and poisoned my body sending my system into shut down.

This day was to lead to another four weeks recovering in hospital and having to be transferred to a neuro-specialist hospital for treatment. I was left with terrible vision, vomiting for days and unable to walk unaided. My physical recovery took a long time which I will write about soon. Mentally though, I still have along way to go.

It's a sobering thought but instead of dwelling on it I realise that I am very very lucky to be here. It's simple, if my dad followed by my step-mum hadn't of come home when they did things could have been VERY different.

5 comments:

  1. Thank you for sharing this very personal experience which must have been frightening for you and your family. So few people understand the consequences of uncontrolled epilepsy and how much of the treatment is still in the dark ages compared to other conditions. When will there be proper funding for research into Epilepsy? It's pitifully small for a condition shared by 600,000 in the UK and over 50m worldwide.

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    1. It's frightening isn't it. People suffer day in day out and all to many give up their ultimate possession with barely anyone knowing that it's even possible to die as a result of Epilepsy :( I makes me sad and angry but also all the more determined to keep on raising awareness and knowledge. We'll get there one day :) Hope you're well xxx

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  2. I'm so glad you are feeling better now! Do they not test your blood regularly for toxicity levels? I'm only on one medication and they still check my levels every now and then to make sure my liver can handle it. Thank goodness your dad was there to see that you weren't doing well.

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    1. Thank you, me too! No I don't have my blood tested unless there is another reason to :/ worrying isn't it even though I've reacted to drugs in the past as well! I think it's pretty rare to have this extreme a reaction though thankfully but still it happened and I'm very sure I'm not the only one! My family and I are so very careful now with anything I take even if I've been on one particular medicine for a while any tiny sign that somethings wrong then we question the meds. I make sure I make others aware of the consequences too for themselves, just incase as you really never know! Hope you're well :) xxx

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  3. Glad to learn you are feeling better. My older kids are doing the 100 mile challenge for the Epilepsy Society this year and my husband has doing the London marathon next year which if you saw him you would think is very unlikely. But we have to get the money somehow.

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