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    • CommentTimeOct 10th, 2017 12:18pm (Oct 10th 2017) edited

    Keeper of the hens

    So just after I was getting to grips with my seizures and feeling like we were managing them much better (and had reduced them to about a dozen a day), autumn hit and the grey days have bright them back as bad as ever :sad: I'm right back up to having 25-30+ seizures a day.

    On Saturday I had a really seizure heavy day. I was out of it for several hours, having near back to back seizures and not coming around or being coherent in between. In the early evening, after a hellish day, we called 111 to ask what to do, as we know our GP won't help.

    The guy from 111 wanted us to go to A&E and said he would send out an ambulance - when we said we could make our own way there so we weren't wasting resources, he said we had to get there by ambulance.

    The paramedics were lovely, asking about all our pets, and I had a few seizures on the way to hospital. 4 hours waiting and I was seen by a wonderful Dr. He told me to leave my goggles on as he did some tests, then turned the lights in the cubicle off for tests that needed my eyes. I had a seizure after a test that involved a light shining in my eyes, and he said to Lyle the light was clearly the trigger. He said I was having absence seizures, and everything I was describing was very typical of seizures. He wanted me seen by a neurologist asap, so I could begin medication, but there was no way to do that so he said he'd keep me in overnight.

    From 4am to 5am I was left on a stretcher in a horribly bright corridor, sitting under a jacket and crying due to how out of it and in pain I was. At 5.30am I was in a bed on a ward and they said I could go to sleep.

    At 7am the lights were turned on, horribly fluorescent and combined with only getting 1hr sleep and having 50+ seizures the day before, I started seizing immediately. I felt really physically unwell, very out of it, and couldn't manage to tell a nurse the lights were bothering me for a good 30-40 minutes.

    At 9am a Dr came to see me. He asked some basic questions which I managed to reply, all spacey and confused, and asked what I did for a living. When I said I received PIP he said I was 'too young' - I didn't know there was an age limit for when disability can affect you!

    He discharged me. I waited for a little while but didn't know what was going on, then gathered my things and stood in the very busy hallway for a few minutes, but I was too out of it and didn't understand how to ask if I could leave. Finally I got a nurse's attention, was told I could wait outside, and left.

    My parents were horrified with my treatment, I called them to say I'd been discharged right after calling Lyle, as I was sat alone by a canal. My mum phoned the hospital to complain immediately.

    The hospital then lied to her, they said they'd done a CT scan on me and it showed no signs of seizures, which was why I had been released. I hadn't had a CT scan, although I started second guessing myself - was I too out of it to remember?!

    When mum called back they said that was a 'mistake', I hadn't had a CT scan, it was just hard for them to remember so many patient's info!! My mum asked what tests had been done that COULD have shown I was or wasn't having seizures, and it was none. So I'd been left with no treatment, no neurologist appt, and hadn't had an xray one Dr wanted done.

    They then told my mum I'd been released because no staff had witnessed any seizures in 12 hours observation - I hadn't even been there 12 hours!! I was able to list six staff who definitely witnessed seizures, including a nurse on the ward who said 'welcome back' to me as I came around, about an hour before I was discharged.

    So all that was for nothing. My mum, bless her, is handling the complaint as there's no way we could cope with all that now. I'm still having way more seizures than I have all summer, and am so tired of being spacey and confused for 90% of every single day.

    All I want is to see a neurologist, so if these are absence seizures,I can get on medication to try minimise them. As it is I feel awful 24/7, and the more seizures I have and the longer they're untreated, the more likely I am to at some point have a tonic comic seizure.
      CommentAuthorchief chicken
    • CommentTimeOct 10th, 2017 3:18pm (Oct 10th 2017)
    Bless you Red, you poor girl - what a horrible time you had of it. I'm glad Helen's on the case - hope she gives 'em hell! Any record of the nice Doc who spoke to you about a neurologist? I hope you're feeling a little better now... :flowers: :heart:
    • CommentTimeOct 10th, 2017 3:50pm (Oct 10th 2017)
    Oh Red I'm so sorry the NHS is letting you down so badly. I come across so many staff who really do care and try to help, but there are so many more who just can't be bothered and seem to override and overrule anything remotely good that is done.

    Don't let them put your mom off - tell her to make them give her everything in writing. Ask for a copy of their complaints procedure, a copy of your medical records, and keep pushing for answers.

    I hope you get some help and relief soon. xx
    • CommentAuthorLynnW
    • CommentTimeOct 14th, 2017 11:12pm (Oct 14th 2017)
    Oh wow, horrible a time you have been having! I hope you can find someone to help you. :face-crying: