Hello, I'm new to this site...my son is now 36yrs and has had episodes of unconsciousness lasting up to 24hrs perhaps post seizure

my son has Epilepsy because of his Tuberous Sclerosis, he had seizures since 9months old. He has had many and varied AEDs but his Epilepsy is very hard to manage. Recently he has had very long episodes of unconsciousness, up to 24hrs. The medical team at the Hospital ran tests that were clear but they were unable to rouse him, he was having Neuro Obs and was Bradychardic throughout. When he woke, he tried to stand on the bed - he is unable to stand.

Really hoping someone has some answers, thanks

5 Replies

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  • Pip73 - I'm really sorry but my epilepsy is not caused by the same problems as your son's but the only thing I can add to the discussion is that, before I was fortunate enough to be prescribed an AED which worked for me, I use dot have long periods of unconsciousness after the worst of my seizures. I was never unconscious for 24 hours but several times it was 8 to 10 hours. when I came round, I would have no idea where I was or what had happened and I would also be unable to make any sense with my speech and would have had great difficulty in trying to stand up.

    I wish I could contribute more to your question but stick with us - not only may someone come up with some relevant comments but you will also find good support here in our "club"!!

    .

  • Thank you so much for taking the time to reply, I'm pleased that you're seizures are more controlled now but also it is very reassuring for me to know that unconsciousness for long periods can occur after a seizure. I have not been able to find anything written on the subject.

    Thanks again and I am happy to be a part of this 'club'

  • I HAVE HAD EPILEPSY SINCE THE AGE OF 10YRS OLD, AND AM NOW 63. FOR THE FIRST 10-15 YRS IT WAS QUITE BAD, THEN OVER THE YEARS TAILED OFF. i TAKE PHENYTOIN AND LAMOTROGINE AND THEY SUIT ME VERY WELL. IT CAN TAKE SOME TIME TO FIND THE RIGHT MEDICATION FOR YOU. HAVE BEEN SEIZURE FREE FOR 15YRS AND WISH YOU ALL TH BEST. MY FATHER HAD IT,AS MY 38YR OLD SON DOES, AND ALSO MY BROTHER'S DAUGHTER. mY SON HAD A PART OF HIS BRAIN REMOVED IN BIG lONDON HOSPITAL 3 YRS AGO AND HAS BEEN SEIZURE FREE EVER SINCE. SO GOOD LUCK TO YOU AND WILL KEEP AN EYE OUT FOR YOU ON THIS SITE

  • I hope someone can give you and your son the support and advice that will be helpful......it is not the same as the epilepsy that my daughter has or myself. Would the V.N.S treatment work ??? It is a mgnetic device placed in the chest like a pacemaker and can help in stopping the electrical disturbances that cause a seizure. Keep strong !!

  • Thankyou both for your replies, much appreciated. Evangilene, I don't think he would be considered for VNS because of his health and condition but it was something for me to research.

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