Husband recently dx with ideopathic Epilepsy at 40

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Ms Katherine
New Member


Date Joined Jun 2006
Total Posts : 3
   Posted 6/6/2006 10:46 AM (GMT -7)   
HI everyone,
 
My 40 year old husband was just diagnosed with ideopathic epilepsy after having experienced 2 gran mal seizures in 9 weeks.  Both events have occured just as he was falling asleep.  After the first seizure, we had blood work, a CT scan, an MRI, an EEG, EKG, 24 hr EEG, holter moniter. We were also being followed by the local neurologist as well as a specialist at the Yale Epilepsy clinic.  All of the test came back negative.  We were given a clean bill of health (but informed of the increased chance of subsiquent seizures ).  Then, nine weeks to the day of the first (same day of the week and same time at night) he had a second.
 
He was given a loading dose of dilantin in the ER (he launched himself out of bed and split open his head) and was prescribed dilantin 300mg/day - but that didn't agree with him (he reported feeling drunk all of the time).  He's just been titered off of the Dilantin and onto Depakote ER 1000mg/day.  So far he seems to not have any side effects from the Depakote.
 
Neither of us has an known Epilepsy in our families and we are feeling very blindsided by this and scared.  It feels as though the MDs have given it a lable of 'ideopathic' and they are good with that - but no one is telling us much of anything. 
 
We'd love to hear from anyone with some validation and support.
 
Thanks - Ms Katherine

Ms Katherine
New Member


Date Joined Jun 2006
Total Posts : 3
   Posted 6/10/2006 11:19 AM (GMT -7)   
Hi Mandi -
 
Thanks for your reply. I'm glad that we've found this forum - if for nothing else, to have a place to vent where there are others "who know". 
 
The transition to Depakote ER seems to be very sussessful (ie: no side effects) - we go the end of next week for a level.  The frustrating piece of this is no knowing if this single med will keep him seizure free or if he'll get breakthrough sz.  The unknown is difficult and we are trying to not focus our energies there.  We have chosen to focus on what our lessons are that are embedded in this newest chapter for us.  This has been a re-bonding experience.   Lots of tears with equally as many laughs.
 
We have two small children ( 7 and 3 ).  Our daughter (7) has been good about this and seems to understand what we are telling her.  Our son - well .... he's 3 ..... and as one would expect from a 3 year old boy - he thinks it's kinda funny that sometimes daddy falls out of bed.  We are very fortunate as Jeff is a physical therapist working as a regional therapy manager for a nursing home company.  Should he ever seize at work - he'll be surrounded by nurses. 
 
I've also mentioned to my husband your suggestion of a daily log/journal/diary - and he's not started it yet - but thinking it's a really good idea
 
 
Thanks again for your 'cyber - ear '
 
MsK
 
 
 
 
 
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