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Thread: Siezures

  1. #81
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    it is so confusing.
    we (the human race), know so little about how the brain functions.

    i am thinking of you and alan.

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  3. #82
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    Thanks Steve hope you are keeping well I think all in all its very frustrating when it seems they are not doing enough or are in no rush to get a proper diagnosis they have started him back on mycophenolate and are weaning him off the phenytoin so we'll see what developments happen over the weekend.

    Love to all M.x.

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    Hello Mary,

    Thanks for letting we know and i do hope he as a better weekend than what he's been suffering all week, please keep we updated mate when you can and i know it's hard rushing about to hospitals and sorting the home but get yourself a break in between.

    I'm really hoping for the best for Alan.

    Love to you both Terry xxxxx

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    Hi Guys

    Well as expected the phenytoin has now been reduced to 50mg and he's back on mycophenolate 250mg twice daily for the last 2 days and he had 2 seizures last night and 1 today so its not looking good.I am livid,angry,stressed,emotional,exhausted and hurting like hell because his doctors don't seem to care don't seem to be helping arn't interested and I have to sit there unable to do anything to ease his suffering why is this world so cruel to the good guys?????????? M.x.

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    Quote Originally Posted by MaryS42 View Post
    Hi Guys

    Well as expected the phenytoin has now been reduced to 50mg and he's back on mycophenolate 250mg twice daily for the last 2 days and he had 2 seizures last night and 1 today so its not looking good.I am livid,angry,stressed,emotional,exhausted and hurting like hell because his doctors don't seem to care don't seem to be helping arn't interested and I have to sit there unable to do anything to ease his suffering why is this world so cruel to the good guys?????????? M.x.
    Oh I wish I was there to give you a big hug right now! This just doesn't seem right and there is nothing that I can do to help. I am at a loss for words but please know that my thoughts are with you
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hello Mary,

    Life in general is a test for we all and in my opinion they'll never be able to diagnose Alan right without that MRI to show what's going on with his brain but through circumstance and his stent that's impossible...so all these doctor's are hoping is for the best and by seeing which medication will break them and stop them from reoccuring.

    I wish i could be with you to help through this most stressful time and few words would be said to these specialist as well.

    I know it hurts mate but until they ease there's nothing which can be done and getting worked up and worried won't help you or Alan as he'll sense this but my full love and support is with you mary.

    Large Hugzzzzzzzzz your way. xxxxx

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    Hi Terry

    Too late went to hospital tonight and had a huge fight with Alan because he grilled our daughter to find out if im eating properly etc and she told him no but what am I supposed to do I can't eat I can't sleep I jump every time the phone rings the doctor gave me oxazepam for anxiety but I can't take them as you can't drive with that particular drug ran out the ward crying my eyes out and now feel guilty because of it I hate this bloody disease I hate the stress I hate myself right now.!!!!!! M.x.

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    Oh christ Mary this is all you need now more pressure...i know Alan's in a bad situation with this lot going on but it could make you ill as well and it's a shame your daughter gave in when she could have spoken to you personally one to one about your eating etc.

    I won't mince my words but when you go to see him expect the inquisition on what your doing and if your eating and what Alan does'nt realize those words he had with you can stress his brain even more and especially worrying.

    Your in the same boat as i was over 2yrs ago my hubby went in for a gallbladder to be removed and was in a week, i was waking early walking the staff for an hour setting out at 11 needing to get two buses there and spent from 2 till 4 visiting rushing back home feeding the dog and running him again to be out at 5-30 to get to the hosptial for 7-8pm then getting back home late then taking the dog over the canal at 9-30pm at night then got in grabbing abit of food then bed and when your doing all this...like i did you don't think of number one just the person you love and i'm really surprised Alan as looked at it in this way either, although he loves you loads.

    Mary can i say something you need to step back and evaluate what's going on and the best way which works for you and like you said the hospital can phone you if Alan takes ill, if your visiting twice daily, do it once for a few times to get rest and tell Alan this and if he moans then state what he argued with you over.

    You need rest mate and this lot with worry is adding alot of pressure...oh i wish i was by you instead of miles away to give you solid support and help.

    My heart goes out to you mate...as i do know your in a terible position.

    All my love Terry xxxx
    Last edited by Peridot20_Gem; 06-26-2011 at 03:29 PM.

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    Hi Terry

    First of all my daughter is only 9yrs old she doesn't know any better and Alan shouldn't be using her for information im fine really yes its a lot to cope with afternoon visiting is 3-4pm by the time I get home I only have less than 2hrs before I need to leave again for nightime visiting and im snacking not really eating but thats because I don't feel like eating and I know thats down to stress etc I really got upset because he said some horrible things to me like if im not looking after myself then that shows I dont really care about him because he's worrying about me.Honestly im fine im exhausted yes but ive been through this routine so many times now when he 1st had his accident he was in hospital 7 weeks and he's been in and out of hospital god knows how many times over the past 5 years ive done this all before.We'll be fine its just so stressfull at the moment and trust me if i didnt have you to sound off to id be lost and you're definately giving me solid support. Love M.x.

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    i wish my shoulder was big enough to reach across the ocean.

    i am thinking of you both.

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