I am new and could use advice

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New Member

Date Joined Feb 2006
Total Posts : 9
   Posted 2/24/2006 8:27 PM (GMT -7)   


I just found this board.
I was looking for some kind of board
for those with epilepsy.
I have had epilepsy for many years now.
I have had 5 brain surgeries and the
VNS implant. It has been almost four years
since my last surgery and now all of a
sudden I am having these weird feelings.
When I went to the neurologist they said
they could be Aura's. Which is something
before a seizure. Well, in all my years of
having seizures I never had aura's and
these scare me. I don't think I am
having a seizure afterwards but it is so
hard. Will this be something I have
to live with the rest of my life?
I can say for the first time I am scared.
I was never scared with my brain
surgeries but now I am. I don't know
what to think or do about it all.
It is so hard. My life for the past month
has been terrible and I have not been
able to live a regular life because
of these feelings. Is that normal?
Confused and scared!

Thanks for listening!

Veteran Member

Date Joined Sep 2004
Total Posts : 775
   Posted 2/24/2006 10:25 PM (GMT -7)   
Hello and welcome to healingwell!
Maybe you can talk to your neuro and see if you can have some testing done to see what exactly is going on. Maybe you just need a med adjustment or something. It sounds like you have been through enough already. Take care, Tracy :)

coffee 'n cigs
Regular Member

Date Joined Jan 2006
Total Posts : 69
   Posted 2/24/2006 10:39 PM (GMT -7)   
So sorry, luv2pray. How would you describe these "weird feelings"? I am 56 years old and have had grand mal seizures since the age of 14. I go into a "zone" sometimes (like today). It doesn't always end in a seizure, but I have never had a seizure, when I wasn't in that "zone". I don't know how to describe it, except to say that I feel as though the bottom has dropped out of my mind and am dizzy and time is not coordinated smoothly (kind of like an old film). I don't know if this would be called an "aura" or not. It can last several hours before the seizure comes.
I know nothing about the VNS implant. Could there be a problem with that?
Best wishes to you,

New Member

Date Joined Feb 2006
Total Posts : 9
   Posted 2/25/2006 7:27 AM (GMT -7)   
Hello C&C,

What you explained about how you feel is almost exactly how I
I feel. And it last hours. Before they did a medication increase
I had the drop of the stomach and dizzy and my eyes hurt.
Now, I just feel very weird and my eyes hurt and I get some sick
to my stomach sometimes and then worn out.
My neuro. is calling this feeling a Aura. But I never had them
before so I don't know what they are like.
For the past 15 years I have had Complex Partial
Petite Mal epilepsy. But was having about 50 a day.
It was hard but I got used to them. They became a
regular part of my life. Now that I have not had them
for almost 4 years I am having these weird feelings.
As for the VNS implant, it is not that. That was
actually turned off before my last surgery. However,
I think I am going to have them turn it back on. See if that does
anything with these feelings.
Thanks for listening. It means a lot to me. I am so glad I found this board.
Thanks again!


coffee 'n cigs
Regular Member

Date Joined Jan 2006
Total Posts : 69
   Posted 2/25/2006 8:28 AM (GMT -7)   
I have the nausea, too, luv2pray. The majority of the time, this "zone" does not produce a seizure,  but there is no way of knowing in advance where it is going, so it is scary. I am guessing this is some kind of seizure activity that hasn't organized itself into a proper seizure. Best wishes to you. This is uncomfortable to live with.
I had my last grand mal on December 5, 2005. It was after that that I found this board. I, then, read for a month before joining. I am so grateful it is here.
Again, best wishes with this,

Post Edited (coffee 'n cigs) : 2/25/2006 8:32:46 AM (GMT-7)

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