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scott lansley
New Member

Date Joined Mar 2008
Total Posts : 1
   Posted 3/28/2008 8:48 PM (GMT -7)   
I'm not sure where else to turn.  My fiance is in her early 20's and was diagnosed with epilepsy at 15 months old.  We have been together for seven years now, and during the first six years, she had only two seizures.  However during the following year she had 6 seizures, and within the last 2 months, she has had almost 20.  They are currently happening every other day if not every day.  She has been on a variety of medications, and has been taking them at the right time every day, but she is getting worse. 
I've always known about SUDEP, and the signs/symptoms of it.  Many of these are currently relating to her: Young age group (20-30 years), right side seizures, increased rate of seizures, multiple medications, shortness of breath afterwards.  She has seen various specialists, and is currently scheduled for VNS surgery in two weeks. 
I guess the reason I'm writing, is because I'm afraid that the possibility of SUDEP is becoming more and more evident.  I just need someone to tell me the truth and tell me either that I'm reading too much into this or if I should honestly be concerned with this right now.
I love her so much, but it's hard to talk to her about these things, especially recently with everything happening.  She is getting depressed because of the medical/financial situation, and currently is sleeping off the seizures about 14 hours a day.  I've had to resign from my job so that I can watch over her these last few weeks/next few weeks, and I'm starting to get off the subject now.
If someone could please just give me any feedback on this, it would help.  I don't want to lose her.  Thank you.

Veteran Member

Date Joined Jan 2006
Total Posts : 2408
   Posted 3/29/2008 2:55 AM (GMT -7)   

Hi there Scott and Welcome to HealingWell,

Please bear in mind that I am not a health professional and that any advice here is no substitute for proper medical advice.

SUDEP (Sudden Unexplained Death in EPilepsy) is very rare and is not something I would be getting too worried about right now. As can happen very often, people have seizures when they are first diagnosed and then it seems to go away (kind of like remission) with the exception of the odd seizure. After a while in remission, it can come back to bite you and it can be hard to control when this first happens (Depending on how bad it is). If your fiance is going for VNS surgery next fortnight, I would definately say hang on and see how that affects things. There are quite a few people on here who have had VNS.

The bottom line for me is that SUDEP is a slight possibility but I think you are reading too much into it at this stage.

Please keep talking to us. There is no such thing as a stupid question.


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