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Two violent seizures.

May 11, 2011

Things have unfortunately taken a turn for the worst and I can no longer travel in a car, let alone drive one. Last Friday on the way back from Norwich, I was in the car and almost blacked out. My whole side went dead and I did all I could to prevent passing out and managed to get home and stumble onto the sofa (normally laying down would lower the tachycardia) this was not the case and soon my whole body went into a violent seizure (exactly like an epileptic fit, only I was completely conscious through out).

Needless to say 999 was followed by a first responder, then two paramedics in a car and eventually an ambulance, which took me to to A+E and 4 hours later the fitting stopped – yes 4 hours of constant violent fitting! (not fecking good! and according to the doctor in A+E “not normal at all”) although still tachycardic they sent me home as there wasn’t anymore they could do for me, and in the early hours of Saturday morning my heart rate managed to get back to 70bpm.

Saturday I spent the whole day asleep on the sofa absolutely exhausted and in agony having pulled every muscle and joint in my body the previous night. I slept well Saturday night and Sunday I needed to buy something for the computer, and was going to order it online as I was quite simply too scared to get back in the car, but after much encouragement from mum and dad, I braved getting in the car again and we set off to PC world in Norwich. On the way home….

my side went completely dead again and I started fitting in the passanger seat of the car. Still 30 mins from home, dad had to hold my shoulder everytime he went round the corner to stop me landing on him! eventually we got back and while mum ran indoors to phone 999, dad grabbed a neighbour to help carry me indoors (with them either side they carried me whilst still shaking into the house) and laid me on the sofa again while I continued to fit in the same way as friday.

This time the paramedic that arrived in the car was completely different to the ones on friday. (I later found out that he is one of the best in Norfolk so much so that he also works on the air ambulance helicopters), he took one look at me and then started injecting me with all sorts for the pain and to stop the muscles spasming (high as a kite with meds) they again took me into A+E. I dont remember the journey, but mum said he got one of the ambulance crew to drive his car so that he could care for me in the ambulance. He never left me alone and kept shouting my name to keep me awake whilst pushing fluid into me to raise my blood pressure.

This time I went straight into re-suss and they gave me another two bags of fluid as well as codine etc for the pain (im just glad he managed to stop the fitting with the muslce relaxant he injected me with as the pain was unbearable). Needless to say they kept me in Sunday night for obs.

Monday morning when the consultant came round, he said that where the blood had left my brain (probably agitated by the movements of the car) the part of the brain then caused the whole of my body to enter a conscious seizure. He said there wasn’t anything more they could do for me, but he would write a letter to Prof Mathias at London and let him know how serious things are becoming!

Although I’ve been ill, and I don’t doubt that for a second, there was still part of me that didn’t consider myself to have a “disability”. Friday and Sunday really rang home how ‘real’ this now is! Its incredibly heart breaking to see your own body do that and a seriously hard truth to see yourself in such a contorted and disabled state. I think I spent most of the weekend in tears. every time I closed my eyes, all i could see was myself fitting on the chair, but i’m gradually coming to terms with it now. although i still feel like ive been run over by a lorry!

I just can’t handle this pressure in my head anymore, it’s becoming truly unbearable.

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