BIG news for uncontrolled epilepsy !!!

Posted , 2 users are following.

There is a new found condition that seams to point out that some people who have epilepsy that is NOT controlled by AEDs (anti epileptic drugs) might be having the fits due to an undiagnosed autoimmune problem..Im an epileptic mum of 3 and have had no control all my life.ive had the epilepsy since I was 7yrsold. I have penti-mal fits...grandmal fits and im very photo sensitive..I have the petimal ones every day sometimes hundreds per day and I have suspected lupus too. But my point to this posting is that if the epiepsy drugs arnt working it could mean that if they detect GAD antibodies in your blood(its a simple blood test) that you could respond to a treatment called IVIG...which is an immune suppresent..

Basicaly the epilepsy is caused by the pressance of these anti bodies and if the correct this it stops the epilepsy..A trial was done on people who didnt respond to the AEDs and 67% ended up totally seizure free the rest had a big reduction in the fits and only 5 people didnt respond.

If you type in google or go on to the epilepsy research web page and type in AUTOIMMUNE EPILEPSY it will blow your mind..I have just been tested for it and will find out the results the end of this month as it takes 3 weeks for the results..

Iso hope I come back possitive because ironically the immune suppresent would help my lupus too.

IF you fit this catagorey where the AEDs dont work ask your consultant about GAD it could be the biggest turning point of your life .......

Good luck and let me know how you go xxxx

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4 Replies

  • Posted

    well thankyou , i will google now but will the doc. agree . im 85 in july and also have polymyalgia , but all medication i tried for the epilep.gave me so many side affects that i havent taken any now for 2 years , mine is the aura type , i have never blacked out and i think going on the meds made it worse , so i will willingly take a look now lol thanks ,
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  • Posted

    well im afraid im not smart enough ,i googled , but so much came up i couldnt understand it lol, like i got to look at ,myasthenia gravis ??????????and acetycholine reactor , and just dont know what to tell my doc. lol
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  • Posted

    Hi all unfortunately I wasn't positive and now we're going a totally diff direction .. I have to make a discussion on the 3rd march to weather or not I will consider DBS.. The answer is yes I will try anything .. I've done the VNS which didn't work I've done placebo trials I've done 13 diff anti epileptic drugs and even hypnotherapy so bring it on I say ... Hopefully the next posting will be a good one.. I know it's not an instant fix but any reduction would be a help.. I'm in the uk and it's very very new surgery but I'm more than happy to be a guinea pig and I hope it helps more of us in the future... Keep well all and I will post back at some point in the future xxx
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  • Posted

    best of luck ,i havent got a clue on what DBS is or VNS or placebo so what ever you do i hope it goes well for you ,
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