homemom360
Stalwart
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my name is angela and i have had seizures since 1990, and was diagnosed with epilepsy the end of 1996. my first experience with a full on grand-mal seizures is one i don't remember. i was just short of twenty at the time and had just moved 1500 miles from home to be on my own. i had most things figured out for the first time in my life. i had moved away from the toxic environment that was my parents and, i was going to school part time for my architecture degree, and was working full time at two jobs.
i was living with my boyfriend at the time, and he was the one who called 911 after i had the third seizure in twenty mins. i went to bed and the next thing i knew i woke up to this handsome gentleman leaning over me asking questions. he was as you probably guests, a paramedic. i was taken to the hospital and had tests run on me, mri, ct, x-rays, all to rule out head trauma, then i was given the name of a neuro and an appointment date for two days later.
the next morning was fun. i woke up at home looking and feeling like i had been beaten by a stick. i had bruises on my arms, legs and trunk. i was in a fog, i could not collect my thoughts very well and to put a topper on it all my boyfriend was nice enough to tell me that he had called his family while i was in the er and he was going home. i had a real winner there. i went to my doctors appt. two days later still in a fog. the dr i saw was a real winner too. the first thing out of his mouth, after he had sat in the same room with me for ten minutes saying nothing and had looked over all my test was very blunt, he was nice enough to tell me, "i'm not going to waist either one of our time trying to tell you what is wrong with you, because i feel your too dumb to understand it anyway." at that i got up and left the office, very pissed.
i went over a month before i had another seizure, this time at work. it's something i unfortunatly can't seem to forget. i was ringing up orders for customers one minute and the next thing i know i'm laying on my back on the floor looking up at my fellow employees who are all looking at me in a mix of horror and fright, as are the customers. i was so embarrassed that i almost did not return to work. at least i kept control of my bodily functions. they sent me back to the er and the first thing i told the drs when they mentioned a neuro was that it better be someone other that the one i had already seen.
after this visit to the er i went straight up to see the new neuro instead of having to wait, because they wanted something done asap. this dr was alot nicer and told me that he was pretty sure that what was wrong was that i had adult onset epilepsy. he showed me the mri and the ct that had been done and stated that most likely it was being caused by a small portion of my brain in the rear of the left side that was not where it was suppose to be. it had just grown wrong when i was developing. so it was congenital not hereditary.
i asked him why it was just now rearing it's ugly head and he explained that it had to do with a combination of hormones and other chemicals in my brain that were changing with puberty. he asked if i had had anything like this happen before this when i was younger. i told him from shortly after i started high school i had episodes where i was experiencing a "numbing" sensation in my hands and face, i had a problem with fading off in a conversation and seeming "lost" to the person i was talking to, just to "come out of it" as suddenly as i had faded out and finish the conversation like i had not left. he informed me that what was happening was a partial or peti-mal seizure and that included the numbing and the staring that i was doing. he also told me that now it had escalated and i was now having full on or grand-mal seizures. he was surprised that this had not been detected when i was younger, but i informed him that i also had no tests done bacause i did not what to deal with all the drs and the bull shit.
he ordered an eeg and that came back as he expected, to show abnormalities consistent with epilepsy. he prescribed dilatine and i was on that for six months before being taken off because it was eating my liver which i hear is common with that drug. he switched me to tegretol and that is the drug that i am still on, though the dosage has gone from 400mg to 1000mg without 100% control but i was not into the drug hopping program.
the thing that gets me is that the actual seizures are the least of my problems, till recently they only happened in my sleep short of the one i had at work. it's the things that the seizures did to me that i have spent ten+ yrs trying to recover from. with the first three grand-mals that i had, with my oh so attentive boyfriend, i also had a combined amount of almost ten minute of h2o deprivation. in fact i guess when the paramedics got there they did cpr because i was not breathing, and they had been told by the boyfriend that i had stopped breathing during the second seizure also for nearly five min. this one small thing did a very bad thing to my brain. it all but destroyed my short term memory. as well as making concentrating and communicating under stress very difficult.(this one i have yet to get a handle on) everything i knew before this happened was fine. i had no memory loss. it was just nearly impossible to take in and retain new information.
i also had a problem remember things like shopping lists and places that i needed to go. shit, half the time in my own home i would leave one room to get something in another room just to forget what that thing was when i got there. granted that happens to everyone every once in a while, this happened to me though nearly every time. i would have to, in my head or out loud repeat what it was that i was after. i did not go anywhere in public with out a notepad and a pen. i made lists for all shopping. the thing that really sucks is this condition stopped my schooling. i could not remember any of it. at the moment i was learning it i understood it and all, but by the next day the info was gone. that dream was over, and the self that i spent yrs building was gone, i was lost and had no way of knowing how to find myself again.
the depression started to creep in, and i knew i had to do something before i was past the point of no return. now you might think that i went back to the doctor so that i could go to some type of therapy for my brain, but no, i did it on my own. in high school i had gotten my cna license and had started on an apprenticeship for physical therapy so i had a good idea of what i had to do to get better, and most of it had to do with repeating everything and being consistent in routine at both home and work. it took five good yrs before i saw consistent and sustained results but now at least i can go to the store for a hand full of things with out a list and i can remember 95% of the time what i wanted when i enter a room for something.
i have learned that my partials work sort of like a stress meter and as long as i keep the heavy stress to a minimum then i'm good for less than one a week. i have yet though to be able to help myself with the communication difficulties that i have they to seem stress connected, and out of my control. i was lucky enough to find two jobs that were very accommodating to the supervision i felt i needed and they did their best to keep me away from possibly harmful situations. it was far from the 100,000+ career i had planned for myself though.
i met my husband this year of ten years the middle of 1998 so he doesn't know me any way other than the way i am now. he has no way of understanding my frustration and aggravation with what i had and what i have lost. he does his best though to be a comfort and to love me just as much as he can. i continued to see the dr till 2001 when i had our daughter and she was born 100% healthy and has excelled in school, so i know that my problems are not being visited on her. i got tired of the same thing all the time from the dr and just stopped going. i went in every year to my general dr and had my pills refilled but other than that i did nothing in that area.
we did the whole ss dis. thing for over five yrs. as the yrs have pasted i have had more and more problems with the inconvenient connection between my communication skills and stress. as long as i'm relaxed and not really concentrating on it i can talk all day, but if i try to recall something such as a word or something i saw or did earlier in the day and i think too hard on it, it'd just gone. the same thing happens when i'm being questioned. i think too hard and i have a problem recalling things as simple as my own birthday. i have stopped driving further than just a few blocks because the traffic is too stressful and makes it hard for me to do more than one thing at a time.
the worst thing is that since i tried coming back from maternity leave i have had the hardest time finding a job. no one wants to hire me. they don't want the liability. the few jobs i have had have been part time and two of them the only reason i got them was because we lived on the property. the others lasted only until the first time i had a seizure and had to call in sick for to or three days. i try my best to help my husband to support us but there is little i can do if no one will hire me. i even tried getting some training to do something else, but it's hard to train for something when you can't remember the training you had the day before. if i could find some place to one on one training it might be possible but i have yet to find something like that.
the me of today is not the me i thought i would be 12 yrs ago. i have become the same me that i was when i was growing up. i have no self, only a title. i grew up being so and sos daughter or so and sos sister. i wanted to be me and have something that was just mine, but instead now im so and sos wife or so and sos mom. doing for other has always been something that i was good at,and liked because i liked the feeling of helping someone that needed it and just the feeling of being needed. helping myself though has never been a high priority and i am having such a problem trying to make myself priority.
the last two yrs my seizures have escalated and this last month i finally broke down and went back to see a neuro again. the thing that has scared me back to the dr is that the seizures have started coming when i am awake again. i also have things that seem to consistently trigger my partial seizures. one of them being when i first get in the shower and let the water run over me, every time no matter the time of day i shower it happens and the thing that scares me is that about 1/4 of the time that partial will roll into a full on and i don't like that, to say the least i don't look forward to showering.
i had the scariest experience about 24 mnths ago and it has happened about three times since then. i was sitting like i am now at my husbands computer and doing something unimportant when i had a partial come on i felt the numbing in my face and it ran down into my right hand then something different happened. the muscles in my face started to pull up like they will when you smile only i wasn't smiling, then i suddenly went stiff in the sitting position and slid out of the chair i was in. i was still aware of what was going on but i suddenly could not talk or move when i wanted. this seem to last forever it was like it was all in slow motion. then i felt like i was watching everything from someone else's point of view. i saw my husband come over and check on me and i saw my daughter watching me. as the seizure fully took hold i lost consciousness, and my husband told me later that as usual wiht the night seizures my eyes rolled back in my head and i shook for about a minute or longer then went limp and started taking short shallow breaths, followed by one long relaxing breath and then a sleep like state. the next time i was aware of what was happening i was still laying on the floor blood coming from the cuts in my tongue. i spent the next two days trying to figure out if that had really happened or not. i knew it had because my husband and daughter told me it did but it just did not seem real. this same thing has happened twice since then, each time the seizure lasting longer and longer.
family is now constantly on me about meds even though i was fully medicated each time it happened. i have stopped going to town by myself because of this, especially since the last time this happened, a little over a month ago, i lost control of bodily functions, which is again something that has not happened before. i went back to the neuro just after the last seizure, and expressed to him that the fact that they seem to either be escalating in severity, or my condition is deteriorating or both, scares me to death and i want to see if there is something that can be done. i also told him that since the partials started turning into full on seizures i have noticed one strange thing. if i can catch the partial when it first starts then i can about 75% of the time keep it from turning into of full seizure. i rub my hands together and get up and "walk it off" sometimes rubbing my face sometimes not. i look for the muscle in my face to flex, that is the thing that tells me it's not a normal partial, when this happens in the shower i sit down that way if i can't fight it off i don't hurt myself, and luckily i have not had a full on in the shower, at least not yet. when i told my doctor about the fact that i could fight them off sometimes, and that i am becoming more and more aware of when they are coming, he said he wanted to do a test that i have not done before.
he said he wants to have me come stay at the hospital over night at least and take me of the meds so as to induce a seizure so that he can get it on tape and on the eeg monitor as to exactly what it is and so he can know better then, what to do about it. my husband does not like the idea but i'm a willing patient as long as he thinks it will help. this dr seems to be ok. better than some i have seen, he actually talks with me and actually has me lead the discussion rather than talking to me and telling me what he thinks i should do. so that's my story. it's probably nothing that lots of other have not been through. until recently though i felt very much alone. i found an epilepsy support group through webmd and one of those members gave me this link. i have done a lot of reading and have found myself over and over again saying to myself, been there, or done that. it is a nice feeling to not feel alone anymore, to know that there might be just one person out there to say, "i know how you feel.", or "i've been there too." i look forward to talking to you all and hope that you all may talk back. thanks ahead of time for a place to feel welcome....:hello::hello::hello:
i was living with my boyfriend at the time, and he was the one who called 911 after i had the third seizure in twenty mins. i went to bed and the next thing i knew i woke up to this handsome gentleman leaning over me asking questions. he was as you probably guests, a paramedic. i was taken to the hospital and had tests run on me, mri, ct, x-rays, all to rule out head trauma, then i was given the name of a neuro and an appointment date for two days later.
the next morning was fun. i woke up at home looking and feeling like i had been beaten by a stick. i had bruises on my arms, legs and trunk. i was in a fog, i could not collect my thoughts very well and to put a topper on it all my boyfriend was nice enough to tell me that he had called his family while i was in the er and he was going home. i had a real winner there. i went to my doctors appt. two days later still in a fog. the dr i saw was a real winner too. the first thing out of his mouth, after he had sat in the same room with me for ten minutes saying nothing and had looked over all my test was very blunt, he was nice enough to tell me, "i'm not going to waist either one of our time trying to tell you what is wrong with you, because i feel your too dumb to understand it anyway." at that i got up and left the office, very pissed.
i went over a month before i had another seizure, this time at work. it's something i unfortunatly can't seem to forget. i was ringing up orders for customers one minute and the next thing i know i'm laying on my back on the floor looking up at my fellow employees who are all looking at me in a mix of horror and fright, as are the customers. i was so embarrassed that i almost did not return to work. at least i kept control of my bodily functions. they sent me back to the er and the first thing i told the drs when they mentioned a neuro was that it better be someone other that the one i had already seen.
after this visit to the er i went straight up to see the new neuro instead of having to wait, because they wanted something done asap. this dr was alot nicer and told me that he was pretty sure that what was wrong was that i had adult onset epilepsy. he showed me the mri and the ct that had been done and stated that most likely it was being caused by a small portion of my brain in the rear of the left side that was not where it was suppose to be. it had just grown wrong when i was developing. so it was congenital not hereditary.
i asked him why it was just now rearing it's ugly head and he explained that it had to do with a combination of hormones and other chemicals in my brain that were changing with puberty. he asked if i had had anything like this happen before this when i was younger. i told him from shortly after i started high school i had episodes where i was experiencing a "numbing" sensation in my hands and face, i had a problem with fading off in a conversation and seeming "lost" to the person i was talking to, just to "come out of it" as suddenly as i had faded out and finish the conversation like i had not left. he informed me that what was happening was a partial or peti-mal seizure and that included the numbing and the staring that i was doing. he also told me that now it had escalated and i was now having full on or grand-mal seizures. he was surprised that this had not been detected when i was younger, but i informed him that i also had no tests done bacause i did not what to deal with all the drs and the bull shit.
he ordered an eeg and that came back as he expected, to show abnormalities consistent with epilepsy. he prescribed dilatine and i was on that for six months before being taken off because it was eating my liver which i hear is common with that drug. he switched me to tegretol and that is the drug that i am still on, though the dosage has gone from 400mg to 1000mg without 100% control but i was not into the drug hopping program.
the thing that gets me is that the actual seizures are the least of my problems, till recently they only happened in my sleep short of the one i had at work. it's the things that the seizures did to me that i have spent ten+ yrs trying to recover from. with the first three grand-mals that i had, with my oh so attentive boyfriend, i also had a combined amount of almost ten minute of h2o deprivation. in fact i guess when the paramedics got there they did cpr because i was not breathing, and they had been told by the boyfriend that i had stopped breathing during the second seizure also for nearly five min. this one small thing did a very bad thing to my brain. it all but destroyed my short term memory. as well as making concentrating and communicating under stress very difficult.(this one i have yet to get a handle on) everything i knew before this happened was fine. i had no memory loss. it was just nearly impossible to take in and retain new information.
i also had a problem remember things like shopping lists and places that i needed to go. shit, half the time in my own home i would leave one room to get something in another room just to forget what that thing was when i got there. granted that happens to everyone every once in a while, this happened to me though nearly every time. i would have to, in my head or out loud repeat what it was that i was after. i did not go anywhere in public with out a notepad and a pen. i made lists for all shopping. the thing that really sucks is this condition stopped my schooling. i could not remember any of it. at the moment i was learning it i understood it and all, but by the next day the info was gone. that dream was over, and the self that i spent yrs building was gone, i was lost and had no way of knowing how to find myself again.
the depression started to creep in, and i knew i had to do something before i was past the point of no return. now you might think that i went back to the doctor so that i could go to some type of therapy for my brain, but no, i did it on my own. in high school i had gotten my cna license and had started on an apprenticeship for physical therapy so i had a good idea of what i had to do to get better, and most of it had to do with repeating everything and being consistent in routine at both home and work. it took five good yrs before i saw consistent and sustained results but now at least i can go to the store for a hand full of things with out a list and i can remember 95% of the time what i wanted when i enter a room for something.
i have learned that my partials work sort of like a stress meter and as long as i keep the heavy stress to a minimum then i'm good for less than one a week. i have yet though to be able to help myself with the communication difficulties that i have they to seem stress connected, and out of my control. i was lucky enough to find two jobs that were very accommodating to the supervision i felt i needed and they did their best to keep me away from possibly harmful situations. it was far from the 100,000+ career i had planned for myself though.
i met my husband this year of ten years the middle of 1998 so he doesn't know me any way other than the way i am now. he has no way of understanding my frustration and aggravation with what i had and what i have lost. he does his best though to be a comfort and to love me just as much as he can. i continued to see the dr till 2001 when i had our daughter and she was born 100% healthy and has excelled in school, so i know that my problems are not being visited on her. i got tired of the same thing all the time from the dr and just stopped going. i went in every year to my general dr and had my pills refilled but other than that i did nothing in that area.
we did the whole ss dis. thing for over five yrs. as the yrs have pasted i have had more and more problems with the inconvenient connection between my communication skills and stress. as long as i'm relaxed and not really concentrating on it i can talk all day, but if i try to recall something such as a word or something i saw or did earlier in the day and i think too hard on it, it'd just gone. the same thing happens when i'm being questioned. i think too hard and i have a problem recalling things as simple as my own birthday. i have stopped driving further than just a few blocks because the traffic is too stressful and makes it hard for me to do more than one thing at a time.
the worst thing is that since i tried coming back from maternity leave i have had the hardest time finding a job. no one wants to hire me. they don't want the liability. the few jobs i have had have been part time and two of them the only reason i got them was because we lived on the property. the others lasted only until the first time i had a seizure and had to call in sick for to or three days. i try my best to help my husband to support us but there is little i can do if no one will hire me. i even tried getting some training to do something else, but it's hard to train for something when you can't remember the training you had the day before. if i could find some place to one on one training it might be possible but i have yet to find something like that.
the me of today is not the me i thought i would be 12 yrs ago. i have become the same me that i was when i was growing up. i have no self, only a title. i grew up being so and sos daughter or so and sos sister. i wanted to be me and have something that was just mine, but instead now im so and sos wife or so and sos mom. doing for other has always been something that i was good at,and liked because i liked the feeling of helping someone that needed it and just the feeling of being needed. helping myself though has never been a high priority and i am having such a problem trying to make myself priority.
the last two yrs my seizures have escalated and this last month i finally broke down and went back to see a neuro again. the thing that has scared me back to the dr is that the seizures have started coming when i am awake again. i also have things that seem to consistently trigger my partial seizures. one of them being when i first get in the shower and let the water run over me, every time no matter the time of day i shower it happens and the thing that scares me is that about 1/4 of the time that partial will roll into a full on and i don't like that, to say the least i don't look forward to showering.
i had the scariest experience about 24 mnths ago and it has happened about three times since then. i was sitting like i am now at my husbands computer and doing something unimportant when i had a partial come on i felt the numbing in my face and it ran down into my right hand then something different happened. the muscles in my face started to pull up like they will when you smile only i wasn't smiling, then i suddenly went stiff in the sitting position and slid out of the chair i was in. i was still aware of what was going on but i suddenly could not talk or move when i wanted. this seem to last forever it was like it was all in slow motion. then i felt like i was watching everything from someone else's point of view. i saw my husband come over and check on me and i saw my daughter watching me. as the seizure fully took hold i lost consciousness, and my husband told me later that as usual wiht the night seizures my eyes rolled back in my head and i shook for about a minute or longer then went limp and started taking short shallow breaths, followed by one long relaxing breath and then a sleep like state. the next time i was aware of what was happening i was still laying on the floor blood coming from the cuts in my tongue. i spent the next two days trying to figure out if that had really happened or not. i knew it had because my husband and daughter told me it did but it just did not seem real. this same thing has happened twice since then, each time the seizure lasting longer and longer.
family is now constantly on me about meds even though i was fully medicated each time it happened. i have stopped going to town by myself because of this, especially since the last time this happened, a little over a month ago, i lost control of bodily functions, which is again something that has not happened before. i went back to the neuro just after the last seizure, and expressed to him that the fact that they seem to either be escalating in severity, or my condition is deteriorating or both, scares me to death and i want to see if there is something that can be done. i also told him that since the partials started turning into full on seizures i have noticed one strange thing. if i can catch the partial when it first starts then i can about 75% of the time keep it from turning into of full seizure. i rub my hands together and get up and "walk it off" sometimes rubbing my face sometimes not. i look for the muscle in my face to flex, that is the thing that tells me it's not a normal partial, when this happens in the shower i sit down that way if i can't fight it off i don't hurt myself, and luckily i have not had a full on in the shower, at least not yet. when i told my doctor about the fact that i could fight them off sometimes, and that i am becoming more and more aware of when they are coming, he said he wanted to do a test that i have not done before.
he said he wants to have me come stay at the hospital over night at least and take me of the meds so as to induce a seizure so that he can get it on tape and on the eeg monitor as to exactly what it is and so he can know better then, what to do about it. my husband does not like the idea but i'm a willing patient as long as he thinks it will help. this dr seems to be ok. better than some i have seen, he actually talks with me and actually has me lead the discussion rather than talking to me and telling me what he thinks i should do. so that's my story. it's probably nothing that lots of other have not been through. until recently though i felt very much alone. i found an epilepsy support group through webmd and one of those members gave me this link. i have done a lot of reading and have found myself over and over again saying to myself, been there, or done that. it is a nice feeling to not feel alone anymore, to know that there might be just one person out there to say, "i know how you feel.", or "i've been there too." i look forward to talking to you all and hope that you all may talk back. thanks ahead of time for a place to feel welcome....:hello::hello::hello:
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