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living with it
Tue, 12/07/2004 - 14:43At first i thought that i was crazy, but i came to this site and i almost cried because everything is true. But is it possible to have both absence and complex partial epilepsy? Is it possible to have several types at once?
I just stare, and sometimes i almost drool. but with me, i am sort of aware of everything that goes on. i hear things, but i can't respond, like my whole being does'nt have the energy to respond, so i sort of can't move. but on a few occassions, i started to rock back and forth. I thought that i was crazy because my doctors gave me an EEG, but nothing was abnormal. But they said that it may have been that i just wasn't having a seizure at that time. My head tips most times rolls to my left and my eyes roll up and to the left also. If i'm standing, i do feel weak, but i haven't fell yet. I mostly just stand there until it passes. But the bad ones, fortunatley, have only happened while sitting. But mostly i feel that i will have one soon, usually in the morning, I feel wierd. I can;t concentrate. my thoughts are sometimes confused. I rememeber one time all of a sudden my brain felt like every neruon was turned on and on fire. It was like i was thinking of everything and nothing at the same time. my thoughts were at hyper-drive, and then i had this irresistable urge to take off running as fast as i could. i don't know what that was, but it was before my diagnosis. i am so glad that i found this site, because i have longed to just talk to people who understand what i go through, and it is also very reassuring that i am not crazy.
Comments
RE: living with it
Submitted by Karolwf on Fri, 2004-11-19 - 02:23
azzkas= you and I could be twins-- I had seen mental health "experts" for years and they were of no help at all-- God bless them -- they really tried but they did not understand -- you have to have been there to understand it-- Sometimes I just want to take off running and fly through the air and jump up and down and scream at the top of my lungs for no reason at all-- except to get rid of the energy inside-- unfortunatley my body does not have the energy to do it-- I too feel weak -- when I am having a bad seizure I am really frightened because people think I am having a breakdown and ship me off to mental health. I do not feel safe when I am having a seizure. I feel like everyone is out to get me and I am afraid of hurting myself. And God forbid if you let anyone know that you are afraid of hurting yourself ( not by your own hands but because you do not know where you are) or that you are frightened because then in comes the little men in the white coats. AND they make things worse!!! thank you for letting me know I am not the only one
Karol
azzkas= you and I could be twins-- I had seen mental health "experts" for years and they were of no help at all-- God bless them -- they really tried but they did not understand -- you have to have been there to understand it-- Sometimes I just want to take off running and fly through the air and jump up and down and scream at the top of my lungs for no reason at all-- except to get rid of the energy inside-- unfortunatley my body does not have the energy to do it-- I too feel weak -- when I am having a bad seizure I am really frightened because people think I am having a breakdown and ship me off to mental health. I do not feel safe when I am having a seizure. I feel like everyone is out to get me and I am afraid of hurting myself. And God forbid if you let anyone know that you are afraid of hurting yourself ( not by your own hands but because you do not know where you are) or that you are frightened because then in comes the little men in the white coats. AND they make things worse!!! thank you for letting me know I am not the only one
Karol
RE: RE: living with it
Submitted by wendymartinez on Sun, 2004-11-28 - 11:43
Hi Karol,
I read your posting describing how your feel when your about to have a seizure, like you have all this energy and want to run and jump up and down screeming. I have a little boy who just turned 4 years and was diagnosed with Epilepsy about 2 months ago. Having seizures (the staring kind) for about 3 months. He has always had what I consider a normal energy level for a 3-4 year old nothing I would consider Hyperactive. When diagnosed with Epilepsy the Neuro put him on Lamictal and at 15mg 2 X daily, he stopped having seizures (about 1 1/2 months now). Once started, I notice him extreemly Hyper at times, kind of like you describe how you feel, only at 4 he can actually do what you are describing and I feel like he is sometimes. I just wonder if there is a connection (????) Its so hard because he can't tell me anything about how he is feeling. I asked the Neuro about this and he said this med should actually mellow him out. I don't know, It helps to hear from an adult who is having similar symptoms. When he acts this way, he doesn't actually have a seizure as he has been seizure free for about 1 1/2 months and he was having 5-7 noticable seizures daily, so I can deal with a little more energy and leave the seizures behind, but I wonder if he feels like he's going crazy when he is running around like this?
If you or anyone else has any input, it would be most appreciated.
Wendy
Hi Karol,
I read your posting describing how your feel when your about to have a seizure, like you have all this energy and want to run and jump up and down screeming. I have a little boy who just turned 4 years and was diagnosed with Epilepsy about 2 months ago. Having seizures (the staring kind) for about 3 months. He has always had what I consider a normal energy level for a 3-4 year old nothing I would consider Hyperactive. When diagnosed with Epilepsy the Neuro put him on Lamictal and at 15mg 2 X daily, he stopped having seizures (about 1 1/2 months now). Once started, I notice him extreemly Hyper at times, kind of like you describe how you feel, only at 4 he can actually do what you are describing and I feel like he is sometimes. I just wonder if there is a connection (????) Its so hard because he can't tell me anything about how he is feeling. I asked the Neuro about this and he said this med should actually mellow him out. I don't know, It helps to hear from an adult who is having similar symptoms. When he acts this way, he doesn't actually have a seizure as he has been seizure free for about 1 1/2 months and he was having 5-7 noticable seizures daily, so I can deal with a little more energy and leave the seizures behind, but I wonder if he feels like he's going crazy when he is running around like this?
If you or anyone else has any input, it would be most appreciated.
Wendy
RE: RE: living with it
Submitted by msb123 on Sun, 2004-11-21 - 07:07
Karol, you stated the case clearly and concise! I am also sensitive to stress, flashing lights...and the weather. If we are having a storm with a lot of lightening, I am almost assured of having a seizure. I have just realized that the triggers for seizures and migraines are almost the same (I wonder if there has been a study.) I am so thankful for this site-and learning that others are experiencing the same symptoms I have.
msb123
Karol, you stated the case clearly and concise! I am also sensitive to stress, flashing lights...and the weather. If we are having a storm with a lot of lightening, I am almost assured of having a seizure. I have just realized that the triggers for seizures and migraines are almost the same (I wonder if there has been a study.) I am so thankful for this site-and learning that others are experiencing the same symptoms I have.
msb123