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Want to find out what my usual seizures are

Sun, 05/06/2012 - 23:24
So here's the deal. I've been told I have complex partial, simple partial, and generally been ignored when I try to debate the specifics (generalized are undebatable, right?) I've had sleep dep eeg, video eeg (with no result - gettin another one scheduled next week) MRI's and I can't get two neurologists to give me the same diagnosis, aside from brain damage. Before the cocktail I'm currently on, I was having up to 30 daily bouts with a 2-3 second roller coaster each - that's the best, most accurate term I can come up with. I would feel like I was spinning backwards really fast, lose awareness as to what I was saying or was going to say, and lose all concept of where, who, or what I was. Then I'd be back and trying to remember what I was doing. The reason I'm asking is that this usually took place over 2 or 3 seconds, which doesn't sound like much, but it was seriously 20 or 30 times per day. It messes a sales job up pretty badly. Every definition of those symptoms leads me to complex, but I've had several say-random-things-and-walk-around-but-can't-really-control-yourself-thinking-maybe-you-stroked-out-and-might-be-like-this-forever-but-you-finally-accept-it-and-are-okay-with-being-trapped-inside-you're-brain-and-then-you-come-out-of-it-and-everybody's-looking-at-you-like-you're-a-freak. So I know it's a different seizure than that. I just wanna know if anyone has had or knows what the short ones actually are. Please let me know if so, TY.

Comments

Re: Want to find out what my usual seizures are

Submitted by wmgmather on Mon, 2012-05-07 - 14:30

I've had seizures my whole life.  The generalized seizure was known as grand mal, is when you fall to the ground and might start shaking.  I now have complex partial seizures.  I black out, mostly at home, but sometimes in public.  I do things without realizing it until I come out of the seizure.  I've had the full test(s) to see if I could have brain surgery to help my seizures.  I found out that the seizures were occuring on both sides of my brain and it affected my right temporal lobe.  When I had them in public, without my daughter with me, people would be scared.  Also when in public, I would stare into space and do nothing.  All that I can remember is what I was doing before the seizure came on.  The ems was called unless my daughter told them not to call them.  I had surgery to have a VNS also known as vagus nerve stimulator put in to help.  It is starting to help better but I'm on 3 different meds.  I have about 2 or 3 seizures a month.  Trying to get to the point where I don't have any.  My mom told me about a web site, paws.com, that trains dogs for people with epilepsy.  Just like with the deaf, the dog can tell when someone is having a seizure and stays with them.  There is no cost to get the dog.

Maybe the neurologist that heads up the dept. should be running the tests.  You might get better results that way.  When I had my tests done, the dept. head was in charge and told me the results instead of 2 doctors.  Or have just your doctor run the tests and let you know.

I've had seizures my whole life.  The generalized seizure was known as grand mal, is when you fall to the ground and might start shaking.  I now have complex partial seizures.  I black out, mostly at home, but sometimes in public.  I do things without realizing it until I come out of the seizure.  I've had the full test(s) to see if I could have brain surgery to help my seizures.  I found out that the seizures were occuring on both sides of my brain and it affected my right temporal lobe.  When I had them in public, without my daughter with me, people would be scared.  Also when in public, I would stare into space and do nothing.  All that I can remember is what I was doing before the seizure came on.  The ems was called unless my daughter told them not to call them.  I had surgery to have a VNS also known as vagus nerve stimulator put in to help.  It is starting to help better but I'm on 3 different meds.  I have about 2 or 3 seizures a month.  Trying to get to the point where I don't have any.  My mom told me about a web site, paws.com, that trains dogs for people with epilepsy.  Just like with the deaf, the dog can tell when someone is having a seizure and stays with them.  There is no cost to get the dog.

Maybe the neurologist that heads up the dept. should be running the tests.  You might get better results that way.  When I had my tests done, the dept. head was in charge and told me the results instead of 2 doctors.  Or have just your doctor run the tests and let you know.

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