Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Opinions anyone?
Tue, 05/03/2005 - 09:01Hi folks. I just found this forum from epilepsy.com and thought I would get a few opinions.
I experience the aura "deja vu" symptoms that many folks describe here. It usually begins as a strange sensation of "things closing in" followed by a strong feeling that I have experienced exactly what is happening during the aura before. I feel like I know exactly what people are going to do or say. It really freaks me out. I seem to be able to carry on a conversation but I don't remember, after the aura, what I was doing when it came on. It is like some kind of short term memory loss.
I am 45 years old and have had these episodes since I was about 20. I have them about 2 or 3 times a month. Twice that I am aware of, I passed out. But no one ever mentioned any jerking or anything.
I had a scan and an MRI done about 10 years ago but the results came back "no abnormalities." I was told that these things happen to some people for no apparent reason.
My most recent episodes concern me. I usually feel sweaty and tired after the episode passes (about a minute or so). But the last couple of months, the episode seemed to take a long time to fully pass (an hour or so until I felt normal again) and I experienced a sensation of, for lack of a better word, dread. I just feel like I could die at any minute (during the post-aura time).
I don't know if any of this makes any sense but I am wondering, should I go get another scan or MRI? Much of what I've read here says that the doctors are pretty ignorant about these things and have no idea what causes them or what to do for them. Am I better off just living with it?
Thanks. Opinions welcomed.
Comments
RE: Opinions anyone?
Submitted by flashbakx on Thu, 2005-04-21 - 07:09
Hey mate,
Firstly I just want to say I have had those auras you described since I was 16. Strangely enough I love the feeling of them , but what goes up must come down and feel really drained for up to 2 days after them. I had complex partial seizures caused from a tumor in my right temporal lobe. I have had the surgery now and seizure free for over 10 years except the aura.
Definately get another MRI. The first one I had said nothing was wrong . I persisted and got another one in another state where they found the tumour. So to answer your question , get it done.
Hey mate,
Firstly I just want to say I have had those auras you described since I was 16. Strangely enough I love the feeling of them , but what goes up must come down and feel really drained for up to 2 days after them. I had complex partial seizures caused from a tumor in my right temporal lobe. I have had the surgery now and seizure free for over 10 years except the aura.
Definately get another MRI. The first one I had said nothing was wrong . I persisted and got another one in another state where they found the tumour. So to answer your question , get it done.
RE: Opinions anyone?
Submitted by hewie on Thu, 2005-04-21 - 07:19
HI... I have already been diagnosed with nightime seizures last year but am now experiencing very similar symptoms during the day. These types of symptoms are associated with complex partial seizures. As JoAnn said sometimes it just takes awhile to determine exactly what is going on for sure.
For sure, let your physician know your concerns but if you get blown off - then you most certainly have the right to a 2nd opinion! (but if you are new to treatment and diagnosis or just suspected at this time as said it may take awhile- everyone if different and it can be very difficult to determine what is going on for sure just as with many other illnesses)
HI... I have already been diagnosed with nightime seizures last year but am now experiencing very similar symptoms during the day. These types of symptoms are associated with complex partial seizures. As JoAnn said sometimes it just takes awhile to determine exactly what is going on for sure.
For sure, let your physician know your concerns but if you get blown off - then you most certainly have the right to a 2nd opinion! (but if you are new to treatment and diagnosis or just suspected at this time as said it may take awhile- everyone if different and it can be very difficult to determine what is going on for sure just as with many other illnesses)
RE: Opinions anyone?
Submitted by 38benny on Wed, 2005-04-20 - 22:42
Opinions are what you want? You found the right place - this site is full of them - mostly good... sorry its late...
I get the same thing that you are talking about with the visions etc... and the MRI's and all never picked them up - they just found that I had dead scar tissue from my menningitis that was causing the seizures but the auras - that they told me I was lucky to have - as my warning signal before the seizure itself... la de da...
They may not know for sure just yet whats causing yours to occur but I would really try to get a second opinion if possible... sometimes its not possible depending on where you live - when I was first diagnosed we only had one neurologist in the area the next one was out of state - when I got married and moved out of state they seemed to be all over... ( I know off the main topic - BUT thats me...) if possible get another opinion.
And hey who says some doctors aren't ignorant - One guy told me that I shouldn't have surgery for the VNS because I was -lets see how did he put it - oh yeah - too depressed and too overweight but the weight part was funny <not ha ha but...> he said I was anorexic and overweight - huh? Come again? Trust me I'VE NEVER HAD A PROBLEM WITH FOOD... - With him I DEFINITLY got a second opinion... He wasn't ignorant <that means not having knowledge> HE WAS STUPID.
Don't just "live with it" try to find answers. Otherwise it'll drive you crazy...
JoAnne
Opinions are what you want? You found the right place - this site is full of them - mostly good... sorry its late...
I get the same thing that you are talking about with the visions etc... and the MRI's and all never picked them up - they just found that I had dead scar tissue from my menningitis that was causing the seizures but the auras - that they told me I was lucky to have - as my warning signal before the seizure itself... la de da...
They may not know for sure just yet whats causing yours to occur but I would really try to get a second opinion if possible... sometimes its not possible depending on where you live - when I was first diagnosed we only had one neurologist in the area the next one was out of state - when I got married and moved out of state they seemed to be all over... ( I know off the main topic - BUT thats me...) if possible get another opinion.
And hey who says some doctors aren't ignorant - One guy told me that I shouldn't have surgery for the VNS because I was -lets see how did he put it - oh yeah - too depressed and too overweight but the weight part was funny <not ha ha but...> he said I was anorexic and overweight - huh? Come again? Trust me I'VE NEVER HAD A PROBLEM WITH FOOD... - With him I DEFINITLY got a second opinion... He wasn't ignorant <that means not having knowledge> HE WAS STUPID.
Don't just "live with it" try to find answers. Otherwise it'll drive you crazy...
JoAnne