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its true. the cataplexy is the worst. my head aches so...

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Guest
Guest

its true. the cataplexy is the worst. my head aches so after an epidoed and i feel ......stupid.......no body understands.......i also do not sleep for more than about an hour at a time........i know these are what i am suffering from.....and so does my neuroglist, however he cannot diagonse me until i finish his score of tests......i thought i was going to be relieved to find i did not have epliepsy......however the cataplexy , the day time cant stay freaking awake........its going to cost me everything in my life........my boss is still being understanding......but how much more can he turn a blind eye unto.....my doctor told me he has never seen anyone suffer from 4 of the 5 possible sleep disorders so intensely.........i am suffering daily about 4 epidoses of cataplexy a day.........i fall asleep all the time.......yet at night i cant sleep it through........everything works the opposite on me........if it wakes a normal person up.......it knocks me right out. it seems like an inconvencience........but more it seems like......i just am so depressed.......i have a 15 year old son.........and my husband passed last year.........i am surfing and surfing i am willing to participate in a study anything to find a cure to this ......especially the cataplexy. and to think my son and i thought it so odd when it started .....laughing and falling down looking like a real fool.....

[i:e0d240288a]This message was automatically imported from the original Patient Experience[/i:e0d240288a]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    I THOUGHT I WAS READING MY OWN STORY. TRY AND KEEP YOUR CHIN UP FOR YOUR SONS SAKE . MY 13 YEAR SON HELPS ME A LOT AND MAKES ME SMILE..... NOT LAUGH JUST SMILE. IM OFF WORK FOR A MONTH AND IN THIS MONTH IM GOING TO DO MY BEST TO FIND OUT WHAT ELSE CAN WE DO TO GET A BEETER LIFE THAN THE ONE WE HAVE GOT NOW.:Dsmilesad:o:shock::?8):lol::roll::wink::cheers::headhurts::ill::ok::magic::yikes:

    [i:2c1e234a9b]This message was automatically imported from the original Patient Experience[/i:2c1e234a9b]

  • Guest
    Guest

    Posted

    I ALSO LIKE SARAH THOUGHT I WAS READING MY OWN STORY, I WISH I COULD BUILD UP YOUR HOPES FOR THE FUTURE.

    BUT UNFORTUNATELY THESE SYMPTOMS DONT GO AWAY AND DONT GET LESS FREQUENT EITHER AS YOU GET OLDER, YOUR CHILDREN WILL HELP YOU THROUGH THOUGH AS MINE HAVE AND STILL ARE DOING. PLEASE NEVER GIVE UP THOU ON LIFE ..........

    [i:ef44e9a65b]This message was automatically imported from the original Patient Experience[/i:ef44e9a65b]

  • Guest
    Guest

    Posted

    I KNOW HOW IT FEELS, BUT IT CAN GET BETTER. I USED TO SUFFER CATAPLECTIC ATTACKS 30-50 A DAY SOME SPLIT SECOND OR UP TO 1/2 HOUR (I THINK). THE ATTACKS MAKE YOU INCREDIBLY TIRED AND YOU NEED TO SLEEP SO UNTIL YOU GET THE CORRECT MEDICATION FOR THE CATAPLEXY IT WILL GO ON. MY MEDICATION CONTROLS MY ATTACKS AND BOY WHAT A RELEIF WHEN THEY STOPPED. I COULDN'T BELIEVE IT, AFTER BEING UN-DIAGNOSED FOR THREE YEARS. I HAVE TO TAKE A VERY HIGH DOSAGE AND HAVE HAD SIDE EFFECTS LIKE SEVERE SWEATING (HEAD ONLY) BUT I'D RATHER THAT THEN THE ATTACKS.

    YOU ARE LUCKY TO HAVE SOME SUPPORT, I WAS ALONE. DON'T GIVE UP THERE IS LIGHT AT THE END OF THE TUNNELL.

    IF YOU NEED TO TALK MY E-MAIL ADDRESS IS ****

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