My aim of this blog is to be honest with my experiences and personal views. It initially is an account for myself which I share publicly to raise awareness and understanding.
Today I went into another episode of 'status seizures'. The paramedics were called and like the last crew decided to do nothing for my seizures - the hope of getting any treatment, such as IV Diazepam is vastly fading leaving me in more pain and feeling more hopeless than ever; will my illness be ever fully understood and taken as seriously as epilepsy?
I was taken to A&E on blue lights and sirens and taken straight into resus. Still unconscious and having repeated seizures. I stayed in resus for a while but still no Diazepam. My vitals (blood pressure, temperature, pulse, O2 saturation levels) were taken along with an arterial blood gas - a procedure I usually hate so I'm thankful I was unconscious. I was then taken to a high observation cubicle; still having seizures. I was swinging between unconscious tonic-clonic seizures and semi-conscious myoclonic seizures but I was 'locked in' my own head - I couldn't speak, I couldn't move voluntarily, my vision had black spots etc. There was no "care" no-one came to me each time I had a tonic-clonic seizure and eventually the curtain was closed on me as I was distressing other patients. I have no idea how long I was in this state for. Then suddenly a nurse came in, he sate me bolt upright and put a cup to my mouth and poured some water in which I promptly choked on; he then put a tablet in my mouth along with more water; expecting me in my semi-conscious state to swallow. Surely if someone was semi-concious they would issue IV medication, but no, A&E apparently don't want me to have IV medication anymore for reasons beyond my understanding. Any sort of pain relief wasn't even considered despite the agony I was in that I couldn't communicate, though you would have thought from my past admissions and the fact the I have hypermobile joints that anyone with any common sense would realise that I must have been in pain?!
I managed eventually to sign 'phone' to student nurse who got my phone for me and called my Dad who promptly dropped everything to come and rescue me.
My seizures came on suddenly; I went from standing to on the floor hitting my head. As I type my head still hurts (a lot) but I wasn't going to spend another second in A&E. If I had of been conscious I would have told the paramedics to leave me where I was or have called Dad earlier once I was in A&E - my plan in my previous post about A&E. On the plus side the minute I got home Dad sorted me with pain relief which A&E epically fail to do and get some quiet and rest. In the morning if my head is still sore I think I'll call the GP surgery - I just hope they don't tell me to go to A&E because I will not voluntary go there, but if I explain to my GP the reception I get in A&E hopefully they'll see me and just check me out *fingers crossed*. Hopefully though after some more pain relief and a nights sleep my head will feel better and my pain will have eased. I'm grateful that I have oramorph at home as its more than I'd get when I'm in A&E and it means I can manage my pain at home. Now though I just need to put on my zebra pj's and get to bed.
Oh, earlier I also sent an email to my neurologist and nurse asking them the speed up getting the care plan written up and to hi light the dire situation I'm in with paramedics and A&E.