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Feeling strange

Wed, 02/09/2005 - 21:03
I was shocked yesterday when I read about someone's personal experience with auras on epilepsy.com. What was so shocking is that I experinced the EXACT SAME THING! When I was a teen, I distinctly remember having deja vu experiences constantly. I was absolutely convinced that these deja vu's were me remembering dreams from years before, I remember telling someone about it even. I thought that I was dreaming these exact moments- thoughts and circumstances.These were actually simple partial seizures...I didn't know that!! I thought that everything began when I was 20 and waiting tables. Wrong! Now, I know that I was having seizures at least 5 years prior. Thinking about that just kind of freaks me out! Maybe I was having complex partials then too, and no one ever told me.I just feel a little weird now...Heather

Comments

RE: RE: Feeling strange

Submitted by mommy2kyra on Sat, 2005-01-29 - 21:17

Hi April,

As I'm sure you'll find out, not everyone is a good candidate for surgery. I have absolutely NO experience with it, but I wanted to respond and throw in my two cents :)

It may be a tempting idea to you, to get surgery and hope that the seizures will stop, but there's ALWAYS a down side with any treatment. The temporal lobe is involved in very complex behaviors, feelings, speech, and memory. For that reason alone, things would have to be really bad in order for me to consider surgery. But...that's me. I know what you mean about the memory thing, mine is shot! Unfortunately, memory is affected by our seizures. The more seizures you have, the more impaired you'll be (typically). And it's not a temporary thing either. That's the bummer. Being heavily medicated will also affect your memory (as well as other things, such as reaction time). You should mention your memory diffculties to your doc to see if there are less intense changes that can be made to improve your quality of life. JMI

I can relate to feeling crummy about having such a poor memory though, I have 2-year-old and 4-month-old daughters and I hate to think of how my disorder may affect them as they grow up. I will just have to do the best I can and hope that they someday understand. I wish you the best of luck, take care!

Heather

 

Hi April,

As I'm sure you'll find out, not everyone is a good candidate for surgery. I have absolutely NO experience with it, but I wanted to respond and throw in my two cents :)

It may be a tempting idea to you, to get surgery and hope that the seizures will stop, but there's ALWAYS a down side with any treatment. The temporal lobe is involved in very complex behaviors, feelings, speech, and memory. For that reason alone, things would have to be really bad in order for me to consider surgery. But...that's me. I know what you mean about the memory thing, mine is shot! Unfortunately, memory is affected by our seizures. The more seizures you have, the more impaired you'll be (typically). And it's not a temporary thing either. That's the bummer. Being heavily medicated will also affect your memory (as well as other things, such as reaction time). You should mention your memory diffculties to your doc to see if there are less intense changes that can be made to improve your quality of life. JMI

I can relate to feeling crummy about having such a poor memory though, I have 2-year-old and 4-month-old daughters and I hate to think of how my disorder may affect them as they grow up. I will just have to do the best I can and hope that they someday understand. I wish you the best of luck, take care!

Heather

 

RE: RE: Feeling strange

Submitted by WendyS on Sun, 2005-01-30 - 15:31
April, I'm going to Strong Memorial for predetermination of temporal lobe surgery. I first have to have a MRI and Video EEG. The last one I had was to unconclusive. Like you my memory is getting worse and I have lists of everything , I have to check my work twice ect... I take Trileptol, Keppra & Zonegran which has been the best combination but not perfect. I've always had aura's but not steadily. The De Ja vu I experience is basically like everyone elses who has responded with the exception that after I have my set of seizures a couple of days later is when I notice the De ja vu, not before my seizures. My aura's are like a warming sensation from stomach to my head is how I know my seizures are going to happen and it can be within seconds for a few minutes. Forgive me for going on but with everyone who has reponded to this it's been incredible! Once the doctors determine from my test results that I am operable then I have to go through more pre -operation tests. ex. WADA there were one or two more if necessary.Please keep me up to date on your results I would be most interested because it sounds like we have simular cases. Wendy S

RE: RE: RE: Feeling strange

Submitted by aprilmay on Thu, 2005-02-03 - 21:30

Wendy,

I just returned from my 1st visit at the Cleveland Clinic and they told me that based on my previous med records and age and health that I would be an excellent candidate for pre-testing for a Temporal Lobectomy.  So I just need to look over some more info.  I also was asked to consider participating in a study called ERSET.  You can read more about it on the Cleveland Clinic website.  The study is to determine whether or not to consider temp. lobectomy sooner or to try extensive drug therapy for up to 2 years.  Good info so pass it on.  Thanks Have a Good day, GOD Bless

April

Wendy,

I just returned from my 1st visit at the Cleveland Clinic and they told me that based on my previous med records and age and health that I would be an excellent candidate for pre-testing for a Temporal Lobectomy.  So I just need to look over some more info.  I also was asked to consider participating in a study called ERSET.  You can read more about it on the Cleveland Clinic website.  The study is to determine whether or not to consider temp. lobectomy sooner or to try extensive drug therapy for up to 2 years.  Good info so pass it on.  Thanks Have a Good day, GOD Bless

April

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