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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: RE: living with it
Submitted by ashkazz on Mon, 2004-11-15 - 21:37
Wow. I am sort of new. I do not know whether i need to change my meds, because i don't understand that what i am having are breakthrough seizures (though small). I just thought that they were lapses in concentration, but they are happening more frequently, even during a volleyball game (i play regularly, but once i just stopped and stared, but, interestingly, no one noticed or missed my presence in the game. Whew!) All of mine came back normal, so then i started to become paranoid that the doctors thought i was crazy or faking and kept me on the meds just to quiet me (i know, stupid, but what can i say, i was scared and young). I was diagnosed two years ago. i just found this site a few days ago. i was so relieved! Especially when i saw that others had the SAME symptoms! then, someone described the feeling that "consciousness was like a very small tunnel that was hard to hold on to" sometimes And i was like "YES!". it described what i could not. I just turned 18, and i am in college. me, my mom, and my dr decided not to take me off the meds in my first year, in case of a disaster. i am glad. But, i think maybe my seizures either arise from my lack of sleep (i do not sleep well. If i sleep, i sleep better in the day than at night.).
My seizures i think kind of snuck in on me. i remember having problems concentrating for a while before my diagnosis. I remember spacing out while doing my homework. I think that maybe these were small seizures, before the big ones. i am conscious during the episodes, and i can hear, but i have trouble responding. but so far i can tell that one will happen, because i just feel "off". Nothing hurts or is irritated, just my whole being feels altered in some way. It's weird.
I take Carbamezepine, generic for Tegretol, at i thing one pill and a half twice a day. TOday i had to get regulated all over again, becasue my meds had to be sent, and they were expensive, so i didn't have them for some time (i klnow, scary). i am up to 1 and a half once and then one pill, bbut today i couldn't handle the one and a half; i was bobbing, and my balance for my head felt WAY off. i felt as though my head wasn't balanced and was really heavy. i was stumbling a little. I think my recitation teacher (who's young) thought that i was high (lol). i hope she does not, though. i feel as though my doc doesn't listen to me, but i can't be picky with govt insurance. what should i do?
Ashley
Wow. I am sort of new. I do not know whether i need to change my meds, because i don't understand that what i am having are breakthrough seizures (though small). I just thought that they were lapses in concentration, but they are happening more frequently, even during a volleyball game (i play regularly, but once i just stopped and stared, but, interestingly, no one noticed or missed my presence in the game. Whew!) All of mine came back normal, so then i started to become paranoid that the doctors thought i was crazy or faking and kept me on the meds just to quiet me (i know, stupid, but what can i say, i was scared and young). I was diagnosed two years ago. i just found this site a few days ago. i was so relieved! Especially when i saw that others had the SAME symptoms! then, someone described the feeling that "consciousness was like a very small tunnel that was hard to hold on to" sometimes And i was like "YES!". it described what i could not. I just turned 18, and i am in college. me, my mom, and my dr decided not to take me off the meds in my first year, in case of a disaster. i am glad. But, i think maybe my seizures either arise from my lack of sleep (i do not sleep well. If i sleep, i sleep better in the day than at night.).
My seizures i think kind of snuck in on me. i remember having problems concentrating for a while before my diagnosis. I remember spacing out while doing my homework. I think that maybe these were small seizures, before the big ones. i am conscious during the episodes, and i can hear, but i have trouble responding. but so far i can tell that one will happen, because i just feel "off". Nothing hurts or is irritated, just my whole being feels altered in some way. It's weird.
I take Carbamezepine, generic for Tegretol, at i thing one pill and a half twice a day. TOday i had to get regulated all over again, becasue my meds had to be sent, and they were expensive, so i didn't have them for some time (i klnow, scary). i am up to 1 and a half once and then one pill, bbut today i couldn't handle the one and a half; i was bobbing, and my balance for my head felt WAY off. i felt as though my head wasn't balanced and was really heavy. i was stumbling a little. I think my recitation teacher (who's young) thought that i was high (lol). i hope she does not, though. i feel as though my doc doesn't listen to me, but i can't be picky with govt insurance. what should i do?
Ashley
RE: RE: RE: living with it
Submitted by LeeMc on Tue, 2004-11-16 - 13:26
Howdy all,
You folks still in school - are you attending colleges or universities that have med schools - or are there any close? You should be able to get treatment from these facilities if you are a student (and you don't have to be a med student) or get a referral to a university hospital or clinic from your primary care doc.
You are playing with fire - I know - I have been there. It sucks to have this problem and to try to live a college lifestyle and to study, write papers, do research, have any kind of social life and all that at the same time.....but you need to! It may mean switching some class schedules so you can sleep when you seem to be able to sleep best and study when you can't. Maybe your profs will tape their lectures for you or go over your stuff at a different time of day - they don't want you to flunk out and if they know there is a reason for you having a problem they will work to help you....try telling them.
DON'T miss your meds! If you can't get them locally then make sure you get them on the way to you BEFORE you get low on what you have. You lose ground everytime that you have to get regulated again - and how will you ever find one that really works for you if you don't take it regularly and religiously?
Okay - lecture over. You have options there that aren't available to a lot of people. Take advantage of them and make sure your fellow students know about them too.....that is what teaching hospitals are for! Dental colleges too and even some of the law colleges......
Later..............................Lee
Howdy all,
You folks still in school - are you attending colleges or universities that have med schools - or are there any close? You should be able to get treatment from these facilities if you are a student (and you don't have to be a med student) or get a referral to a university hospital or clinic from your primary care doc.
You are playing with fire - I know - I have been there. It sucks to have this problem and to try to live a college lifestyle and to study, write papers, do research, have any kind of social life and all that at the same time.....but you need to! It may mean switching some class schedules so you can sleep when you seem to be able to sleep best and study when you can't. Maybe your profs will tape their lectures for you or go over your stuff at a different time of day - they don't want you to flunk out and if they know there is a reason for you having a problem they will work to help you....try telling them.
DON'T miss your meds! If you can't get them locally then make sure you get them on the way to you BEFORE you get low on what you have. You lose ground everytime that you have to get regulated again - and how will you ever find one that really works for you if you don't take it regularly and religiously?
Okay - lecture over. You have options there that aren't available to a lot of people. Take advantage of them and make sure your fellow students know about them too.....that is what teaching hospitals are for! Dental colleges too and even some of the law colleges......
Later..............................Lee
RE: RE: living with it
Submitted by beautimouslove on Mon, 2004-11-15 - 16:40
i am not ash...
but thanks for writing, it helped me a lot. and maybe i an in that 1% also. everyone on this site has been great. i would really believe that i was crazy if it was not for this site.
i have been 2 days free of seizure...!!! i hate living this way... not knowing when the next will come...a lot of FEAR 24/7.
i am not ash...
but thanks for writing, it helped me a lot. and maybe i an in that 1% also. everyone on this site has been great. i would really believe that i was crazy if it was not for this site.
i have been 2 days free of seizure...!!! i hate living this way... not knowing when the next will come...a lot of FEAR 24/7.