1. alex

    alex Registered User

    Apr 10, 2006
    Hi everyone

    Sorry i only seem to post when i feel really low, but that seems to be most of the time at the moment.

    Had such a terrible day yesterday and today, the kind of day you know is going to be bad as soon as you get out of bed.

    Went to visit yesterday and was informed that Ray had been having seizures most of the afternoon, he had three whilst i was there.

    They have been getting worse and the hospital rang today to say they were very concerned and they were arranging to transfer him to another hospital. I dashed there so that i could accompany him in the ambulance and i was shocked when i saw him, he was having a really bad fit.

    I have just got back from the hospital and i'm restless and worried sick. The fits are continuous now and he is very poorly. The doctors said they don't know yet whats causing it, but the drugs don't seem to be helping much. I suspect its more to do with his brain damage rather than his dementia.

    I would rather have stayed with him but they said there was no point, as they can't do scans until tomorrow and as he is so weak, they would rather he rested.

    Here we go again on this never ending roller coaster.

    Has anyone had experience of continuous fits?

    Sinking ever deeper
  2. connie

    connie Registered User

    Mar 7, 2004
    Alex, no experience. Just wanted to let you know we are here for you.

    Hugs and good wishes coming your way.
  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Alex,
    So sorry that Ray (and you) are having such a bad time. You must be so frightened tonight.
    You are both in my thoughts and prayers tonight, and sending a big hug in your direction.
    Love Amy
  4. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Alex,
    I am so sorry that you are being hit by one problem after another. You make me feel truly guilty for moaning about my 'lot'.
    I do hope you get a good night's sleep so that you can face whatever tomorrow may bring. I hope it will be an improvement in your husband's condition, some good news from the scans, a caring consultant/nurse, a ray of hope, a ray of sunshine ......
    You amaze me. Stay strong!
  5. alex

    alex Registered User

    Apr 10, 2006

    Hi girls,
    Thanks for your support, i really do feel so desparate at the moment, just rang the hospital and it does not sound good, so scared that this is it! Just hope i can be with him, although i won't be much help and he is not aware of anyone at the moment. Can't wait til morning. Still can't face losing him yet!

  6. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Alex,
    Get the feeling this is going to be a very long night for you; of course you can't face losing him yet; when you love someone, you don't want to have to say that final goodbye. Just a thought Alex, but might it help to write a letter to Ray tonight, telling him how you are feeling - if it's going to be a long night anyway, at least you would be with Ray 'in spirit', even if the hospital feel that it is better for you to be at home. You could tell him how you feel, your fears for the future, your memories of the past, ask for advice, what does he want for you? For me writing things down helps - it makes a connection - I sound bonkers, but who cares? If the time is nearing when you have to say goodbye, maybe spending some time writing to Ray whilst he is still with you may help. He doesn't have to read or hear your words, it is enough for you to have thought them, but the written word is tangible for you. I'm here for a little while longer, if you want to chat.
    Love Amy
  7. alex

    alex Registered User

    Apr 10, 2006
    Not that lucky!

    Thanks Amy
    Its a good idea but the paper would get too wet to write on! Can hardly see the computer to type, i might even get electricuted (I'm not that lucky) as the keyboard is floating in tears!

    I think it will be the sofa for me tonight, if you don't hear from me by tomorrow, you'll know the computer got me after all!!!

    Did not think anyone would be up so late, your nearly as bad as me!
    You might need to get some sleep, because if this computer does not electricute me, i might need some more support tomorrow.

    Good night, god bless
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005
    It can be from the dementia


    My Dad suffered from fitting...and was put on the drug epilim (I believe Brucie has had some experience with his wife having fits as well) also know as sodium valproate. Epilim can turn your loved one into a bit of a zombie for a while...but these days Dad is only on a very low dose and hasn't had a fit in an age and no longer seems to be adversely affected by it.

    I know Brucie hated the way the drug zombified his wife, but everyone is different...and it can work for some, like my Dad, so maybe you might want to ask doctors about it. Its apparently used for people with epilepsy as well.

    It was a great relief to not have to worry about him fitting and hurting himself anymore.

    Hope this might help,
  9. Amy

    Amy Registered User

    Jan 4, 2006
    The thing is Alex, I've finished school for the week, and it is the only chance I get to stay up. If I don't get my sleep when I'm working, I don't cope. And I intend having a nice lie in in the morning!! So I'm sitting watching a film (very vaguely watching it) and typing.
    Put your keyboard in a transparent plastic bag - it should help!! The number of us who cry into our keyboards whilst on TP, just think of the thousands of pounds (dollars etc) that we are stopping counsellors and psycho therapists earning by having TP!!
    Love Amy
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Alex
    As Nat says, Jan has fits, though they are occasional, though they sometimes come in clusters.

    I questioned the use of medication given rectally at the onset of a fit [these tend to happen around breakfast time which, come to think of it, was when she used to faint most often at the onset of her dementia], and her GP says it is to get absolutely immediate effect as she feared Jan might go into continuous fits otherwise. It does seem to work and the staff have learned to recognise the signs of a fit very early.
  11. dmc

    dmc Registered User

    Mar 13, 2006
    Hi alex

    im so sorry your havning to go through this terrible nightmare, just wanted you to know you and ray are in my thoughts, and prayers,
    take care may you find the strength to get you through
  12. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    Thinking of You.....

    Just to say I am thinking of you and know what you are going through.

    My husband has fits. Sometimes really bad... and I have to call the Paramedics / 999.
    Sometimes we have a Doctor attend too .... If the seizure will not reslove.
    His BIG seizures he is needs admitting to hospital ... usually overnight.... and he needs oxygen too till his levels are 'back to normal'.


    It can be a terrible thing to experience.

    My husband is currently taking KEPPRA 1000mg x 2 daily as well as GABAPENTIN 300mg x 2 day.... for the seizures.
    Thankfully, he has only been having smallish seizures for a couple of months now.

    There is a new drug out that you can give 'orally' if the seizure will not stop.
    It is meant to be better that the 'other route' !!

    Your Doctor/s will review his medications , and work out what is best for you husband.

    Try and get an appointment to see the Epilepsy Nurse Specialist at your local hospital. Ring your GP's Practice Nurse, and insist on an appointment... Say how worried you are....

    Good Luck

  13. alex

    alex Registered User

    Apr 10, 2006
    #13 alex, May 27, 2006
    Last edited: May 27, 2006
    Hi Daisy

    Thanks for the message, sorry i'm late in replying but i've just got home from the hospital.

    He has been constantly fitting for 56 hours now and they still can't get things under control, you see the problem is that he is still very ill from Intensive Care and so they are limited to what drugs and how much of a drug they can administer to him, I have spoken at length to his consultant today and he said that they have decided not to carry out a brain scan to find out the cause, because it would not change their treatment. For instance if its caused by a blood clot, he is too ill to withstand even the simplest operation, let alone brain surgery.

    They have said that under normal circumstances they would have ventilated him by now but because he was on a ventilator for 3 months, whats the point? They would be trying to save someone for what? He is brain damaged, can't feed him self, he is paralized apart from being able to move his left arm very slightly, he is partially blind and can't initiate speech.
    They have always been clear on the point that they will not attempt any resuscitation as his quality of life is practically non existant.

    He has surprised a lot of people over the last 6 months by defying death many times, however i don't know how long he can keep doing it!

    I have been with him for 12 hours today and he is getting weaker by the minute, his breathing is very shallow, he has not been conscious at any point and i feel he is drifting away and i feel so helpless. I don't want to see him suffer like this, but i'm so scared of losing him. I really don't know how much more i can bear.

  14. Kayla

    Kayla Registered User

    May 14, 2006
    Dear Alex,
    I've just been reading your posts and I want to say that I am thinking of you and I want to offer you my support. It is very frightening when some one is so ill and there is nothing you can do.
    When my father was in hospital for 4 weeks with kidney and heart failure, it was upsetting to see him in pain. In the end he had an unexpected heart attack, which was almost a relief. He looked so peaceful afterwards and free from pain.
    Have you got some one with you, a friend or member of your family? You shouldn't be on your own just now.
    I hope there is some more encouraging news from the hospital soon.
    Best wishes
    from Kayla
  15. alex

    alex Registered User

    Apr 10, 2006
    Hi Kayla

    Thanks your message, i have had offers to stay with friends but just wanted to be on my own for a while.
    The hospital staff have said i can stay at the hospital tonight so i will more than likely go back later when i pull myself together.
    I'm o.k. infact i feel dead inside at the moment, its just been such a long, hard road to travel over the last six months, but i know i have a job to do and i need to step up to the plate, i'm just trying to find the strength.

    Kind regards
  16. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Alex,
    I am sitting here, desperately searching for some words of comfort that don't sound trite. My heart goes out to you - you are in the most unenviable predicament, and all I can do is send you good wishes and a big hug.
  17. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Alex I am so sorry to read your latest news - it is so dreadfully sad. Wish I could find words to help but its impossible - I will think of you today and tomorrow

  18. Bets

    Bets Registered User

    Aug 11, 2005
    South-East London, UK
    Dear Alex,

    Nothing I can add to what others have already said. Like them, my thoughts are with you at this difficult time.

  19. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Alex - I have been reading your posts and feel so very sad for you. My thoughts have been with you so much today - there is so little we can say or do. Keep your strength up hard though it is. BeckyJan
  20. mel

    mel Registered User

    Apr 30, 2006
    Dear Alex
    I just want to echo what everyone else has said to you
    I think we're all with you and hope you can draw some strength from all of us

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