aura's how do you know if you have one or not?
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Ann T.
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Hello, Scott
My aura is extreme crankiness(I yell at my mom, which is unusual)brought on by extreme tiredness that's more mental than physical tiredness. Another signal is that I become extremely anxious. The thing about auras is that they are unique. Hope this helps.
My aura is extreme crankiness(I yell at my mom, which is unusual)brought on by extreme tiredness that's more mental than physical tiredness. Another signal is that I become extremely anxious. The thing about auras is that they are unique. Hope this helps.
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Not everyone has warning auras with epilepsy, but for those who do they can take all different forms, like smells and visual imagery. I don't get an aura, but friends have told me that my face appears emotionless -- as If I'm tired and disinterested all of a sudden. There are epilepsy dogs that are trained to sense when someone is about to have a seizure -- it's not clear what the dogs are picking up on, but they seem to notice something that the person can't sense on their own. Even if your daughter doesn't have a specific aura, you may be able to find out when she is more vulnerable -- ask her to keep a journal, and maybe you'll notice a pattern -- certain foods, stresses, times of the month, when she's more likely to seize. Studies show that in some cases there is already a change happening in the brain 48 hours before a seizure, so it can be good to pay attention to what is happening a day or two before the seizure occurs.
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Hi Scott,
I have complex partial seizures that sometimes manifest to tonic/clonic and they usually begin with auras. The auras start with this overwhelming feeling of something terrible is going to happen and I get an "urge" to run. My world starts going in "s-l-o-w" motion, like in the movies, noises get louder, and people say I have this far away, spaced-out, look on my face. Then the seizure happens and I don't remember anything during the seizure or shortly after the seizure.
I have complex partial seizures that sometimes manifest to tonic/clonic and they usually begin with auras. The auras start with this overwhelming feeling of something terrible is going to happen and I get an "urge" to run. My world starts going in "s-l-o-w" motion, like in the movies, noises get louder, and people say I have this far away, spaced-out, look on my face. Then the seizure happens and I don't remember anything during the seizure or shortly after the seizure.
Nakamova thanks for the input. We know when she's going to have one now, she gets a day and confussed look on her face and stops talking in mid stream and you ask you to conftinue and she cant. we then just walk her to bed and let her sleep. that's basically her only sign that she's goign to have one and by then she's already in it. Im not up on all the verbage but i know she has tonic/clonic, gran mal, peite mal, and focal seizures. she's 16 yro and weights maybe 121lbs, (althectic Varsity soccer player) so even with all the different types of seizures, shes does good with the VNS and lamictal/Keppera which she's on a high dosage, from my understading she's on the highest.
Not sure about MSG, but the previous ones she has had we went to a asian rest. and she had one each time. i took notice and asked the mngr after the second one if they use msg and she said yes. so needless to say she wont eat there anymore or have MSG. again not sure if it's a trigger or not but safe than sorry in my book.
we tried traking her time of the month but she was almost 13yro before she got it. she was digangosed with E right after her 11th bday (actually the first one we saw was on Xmas morning). but they were never the same month to month.
we asked her to keep a daily journal but she wont. right now she see a couselor every two weeks. it seems to help especially since it's just btwn the two of them. thanks again.
scott
Not sure about MSG, but the previous ones she has had we went to a asian rest. and she had one each time. i took notice and asked the mngr after the second one if they use msg and she said yes. so needless to say she wont eat there anymore or have MSG. again not sure if it's a trigger or not but safe than sorry in my book.
we tried traking her time of the month but she was almost 13yro before she got it. she was digangosed with E right after her 11th bday (actually the first one we saw was on Xmas morning). but they were never the same month to month.
we asked her to keep a daily journal but she wont. right now she see a couselor every two weeks. it seems to help especially since it's just btwn the two of them. thanks again.
scott
Mrs.My2009
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Auras
Everyone experiences auras differently. My auras always starts with "I'm there, but not there" type of experience. It's like I'm out of my element. My heart accelerates 'coz my body knows that a seizure is about to present itself. There are other moments when everything suddenly seems so "far away" from me, but it's not. Then, next thing I know I'm on the floor. Memory problems always hits me after getting out of it. I hate waking up from a seizure. It's such a pain. The headaches and trying to remember...well..you know what I mean.
Everyone experiences auras differently. My auras always starts with "I'm there, but not there" type of experience. It's like I'm out of my element. My heart accelerates 'coz my body knows that a seizure is about to present itself. There are other moments when everything suddenly seems so "far away" from me, but it's not. Then, next thing I know I'm on the floor. Memory problems always hits me after getting out of it. I hate waking up from a seizure. It's such a pain. The headaches and trying to remember...well..you know what I mean.
Hi Mrs. My2009
Not to sure what you mean since it's my daughter that has E and not me, but yes, i do know she comes out of the seizure with a real bad headace. Luckly out of all the gran mals she has had she has only fallen down once (w/o injury) the rest have been whle we have been around her and we where able to lay her down on the ground before she was fully in one. in the past two yrs thogh she hasnt had a gran mal since we had the VNS installed. thats the only upside to her E since she was 11yro.
scott
Not to sure what you mean since it's my daughter that has E and not me, but yes, i do know she comes out of the seizure with a real bad headace. Luckly out of all the gran mals she has had she has only fallen down once (w/o injury) the rest have been whle we have been around her and we where able to lay her down on the ground before she was fully in one. in the past two yrs thogh she hasnt had a gran mal since we had the VNS installed. thats the only upside to her E since she was 11yro.
scott
skillefer
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Well, I never used to have auras, but now I am....(pregnancy...gotta love it. ) I can tell I'm having an aura because mine involves feeling...disconnected...just kinda floaty and out there...like when you're really tired. My hubby and aide can tell because I tend to forget what I'm saying and they say my eyes have a harder time focusing.
Mrs.My2009
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Just try to imagine what it's like waking up and not knowing where you are and wondering what you are doing on the floor. Confusion......that feeling is what always hits me after a seizure episode. I have complex partial seizures which sometimes can become secondary generalized. If you were to ask me at that moment what day it was..I wouldn't be able to tell you.
I've had seizure episodes in the past that happened to me at work. Imagine seeing someone have a seizure at work in front of your eyes..and imagine what it's like when it happens in front of a classroom full of little kids. That's what I had to go through. At the moment I'm not working.
I understand quite well what your child is going through and my heart goes out to her.
From the experiences that I have had with how I was treated as an ep patient..please be loving and supportive of your child. Always tell her that you love her even if she goes off on you because Ep is starting to feel like it's "ruling" over her life. I never had any of that from my family. What I got was "people have worse problems than you". A family member said that to me when I was having depression over ep. Depression and Ep goes hand in hand.
I'm married now and have all the support that I need and I am so much happier than I used to be.
I've had seizure episodes in the past that happened to me at work. Imagine seeing someone have a seizure at work in front of your eyes..and imagine what it's like when it happens in front of a classroom full of little kids. That's what I had to go through. At the moment I'm not working.
I understand quite well what your child is going through and my heart goes out to her.
From the experiences that I have had with how I was treated as an ep patient..please be loving and supportive of your child. Always tell her that you love her even if she goes off on you because Ep is starting to feel like it's "ruling" over her life. I never had any of that from my family. What I got was "people have worse problems than you". A family member said that to me when I was having depression over ep. Depression and Ep goes hand in hand.
I'm married now and have all the support that I need and I am so much happier than I used to be.
we tell her we love her every night b4 bed time, which by the way is 9pm now thats hard for a 16yro. luckly she hasn't had one at school. we get the waring signs, stare into space, dazzed and confussed look then we just simple put her back in bed and check on every 15mins the first hour and 30 there after till she awakes. another major concern for us is she is going into 12 grade next yr and college right after. with short term memory her SAT scores are in the bucket. she wants to be a school techer like her mother but it's not realatistic at the moment (current GPA is like 1.9 maybe) straight A in 8th grade and dwn from there. life goes on though. just wish she woudl take more of an active role in this and take an intrest in it maybe then she would understand what she has and how serious it is.
skillefer
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Life does indeed go on. I also have grandmals. And, at one point I also had petit mals. I was on Depakote and Phenobarb. Now, I'm s special ed. teacher in a public school. Yes, I still have seizures. And yes, I have them in front of my class. But, I make sure that the kids know what it is ahead of time. I give my epilepsy speech at the beginning of each semester. Your daughter is lucky, in that she has auras...up till I got pregnant, I never did. they'd just hit and the next thing I knew, I was looking up and trying to remember where I was...If the seizures are creating that much havoc with your daughters memory, you might want to ask the school for a 504 plan. It's one step less then an IEP...basically, a letter would go out to all of her teachers asking for specific accomodations to help her be more successful...like copies of the teachers notes...extra time on assignments as needed, etc... At her age, I wasn't exactly being a great advocate for myself either...and my parents took the approach of "there are people worse off then you...you have epilepsy, but don't use it as an excuse. We know you're bright. Now use it..." I learned to write myself lots of notes...post it notes are my best friend...I scored fairly well on my SAT's...and then went on to the University. (I didn't do so hot there as an underclassman...but that was due to me wanting to party and trying to fit in...not the E.) I got my bachelor's and then my master's ( I did much better on that...). Now, I'm a teacher. So don't let her give up her dream. It's possible. Just because she has E doesn't mean that she has to give up her dream.
Your daughter is lucky, in that she has auras...up till I got pregnant, I never did. they'd just hit and the next thing I knew, I was looking up and trying to remember where I was...If the seizures are creating that much havoc with your daughters memory, you might want to ask the school for a 504 plan. It's one step less then an IEP...basically, a letter would go out to all of her teachers asking for specific accomodations to help her be more successful...like copies of the teachers notes...extra time on assignments as needed, etc... At her age, I wasn't exactly being a great advocate for myself either...and my parents took the approach of "there are people worse off then you...you have epilepsy, but don't use it as an excuse. We know you're bright. Now use it..." I learned to write myself lots of notes...post it notes are my best friend...I scored fairly well on my SAT's...and then went on to the University. (I didn't do so hot there as an underclassman...but that was due to me wanting to party and trying to fit in...not the E.) I got my bachelor's and then my master's ( I did much better on that...). Now, I'm a teacher. So don't let her give up her dream. It's possible. Just because she has E doesn't mean that she has to give up her dream.Mrs.My2009
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I know that people have worse problems, but the way it was said to me was what got to me. The person that said this to me has a perfectly normal life and never had Ep so it was a struggle for me day in and day out when it hits. What I hated was the comments that I get when I get out of a seizure episode. I get sarcastic remarks like "you never remember" when I ask what happened.
I was very suicical last year due to an ep drug that I was taking. I needed all the support that I could get. Aside from that I had a bad child hood experience that I wanted to forget, but it came back to me when I was in deep depression. The same said family member that told me that "people have worse problem than you" was the same said person that abused me when I was a child. It's tough.
I know that I still need "healing" in this life time, but I am doing better now than I was before. It's a day to day process. I distanced myself from this "person". I had a lot on my plate and I had no support whatsoever. What do you do when you feel "alone" in your battle?
I did go to an Ep Support Group, but my family "gotta love em" frowned down upon that. I mean where else can you go if you don't get any support from home, right?
I was very suicical last year due to an ep drug that I was taking. I needed all the support that I could get. Aside from that I had a bad child hood experience that I wanted to forget, but it came back to me when I was in deep depression. The same said family member that told me that "people have worse problem than you" was the same said person that abused me when I was a child. It's tough.
I know that I still need "healing" in this life time, but I am doing better now than I was before. It's a day to day process. I distanced myself from this "person". I had a lot on my plate and I had no support whatsoever. What do you do when you feel "alone" in your battle?
I did go to an Ep Support Group, but my family "gotta love em" frowned down upon that. I mean where else can you go if you don't get any support from home, right?
skillefer, Im sorry if i mis typed but she doesnt have auras, not unless her aura is that she's in a dazzed aan confused look. My wife is a spl Ed teach herself for that last 16yrs. long time to be in spl ed teaching. but she has a 504 plan and the spl ed lady that helps is wonderful. doinn some research for college next yr we need to have some accomadations added back into it like note taking. thats not there now and i can see that being a big one for at least the first yr of college. she is bright especially in science. she has taken several 1st awards in science fairs and walked away with saving bonds. we'll keep pushing her towords her dream she just needs to make sure she understands we cant do the college thing for her she needs to step up to the plate and work for it also. which in time im hoping it happens.
scott
scott
mrs.My2009
sorry to hear that. I wish we had a Ep Support Group around here. I've called the Ep founddation, i've asked my daughter's neuro doc, nothing. Especially at age 16 thats a tough age. thats one reason why we started having her talk with a couselor. we just started so im hoping by the end of summer things might look different for her. dont get wrong she has friends but thats like hot and cold it comes and goes. most of her frnds dotn know about her Ep excpet her real close friends which is ok i guess not evryone needs to know.
scott
sorry to hear that. I wish we had a Ep Support Group around here. I've called the Ep founddation, i've asked my daughter's neuro doc, nothing. Especially at age 16 thats a tough age. thats one reason why we started having her talk with a couselor. we just started so im hoping by the end of summer things might look different for her. dont get wrong she has friends but thats like hot and cold it comes and goes. most of her frnds dotn know about her Ep excpet her real close friends which is ok i guess not evryone needs to know.
scott
skillefer
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Hi Mrs. My! I hope you didn't take anything I wrote in a negative way...I was just reporting what my parents told me...literaly word for word. And yes, HOW people say things can hurt worse then what they say. My familly didn't really talk at all about my E. At least not with me...so in college, I started up an epilepsy support group at the university I was at. (I ran into other people with E...and I was a health aide in my dorm...so I helped to start the group. )
What to do when I feel alone....for me, when I feel like I'm either under attack or alone in a battle, that's when my grit my teeth and dig in my heels...that's when I take charge of me and my life. I decided long ago that nobody could live in my skin as well as I have. Oh, they might make different decisions, but nobody who comments on my life has ever lived my life...so on me, I'm an expert. I have a PhD on me... the only one in the whole wide world. I know my feelings, decisions, reasoning, strengths, flaws, etc... So I make my decisions and live with the consequences. If you live your life trying to please everyone else, you'll never really live. At least not as YOU. But that's just me... If you asked my hubby, he'd tell you I'm hard headed.
What to do when I feel alone....for me, when I feel like I'm either under attack or alone in a battle, that's when my grit my teeth and dig in my heels...that's when I take charge of me and my life. I decided long ago that nobody could live in my skin as well as I have. Oh, they might make different decisions, but nobody who comments on my life has ever lived my life...so on me, I'm an expert.
I have a PhD on me... the only one in the whole wide world. I know my feelings, decisions, reasoning, strengths, flaws, etc... So I make my decisions and live with the consequences. If you live your life trying to please everyone else, you'll never really live. At least not as YOU. But that's just me... If you asked my hubby, he'd tell you I'm hard headed.
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skillefer
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Hi mahan! Maybe your daughter would be better off attending a junior college for her general requirements. They tend to be smaller, with smaller classes...she would have a better chance of actually getting individualized attention from the teacher, and it might help her ease into the college life. Definitely get the 504 plan updated...and make sure that it gets to ALL her teachers. It's easy for 504 kids to fall through the cracks. Make sure that how good the DSS center is an important determiner in the college decision, and then go and actually visit them and the school. Make sure that your daughter gets to shadow a student in a couple classes so she can see how it's different from high school. Check out the health center there, and make sure that she has a copy of her med. records to take to college with her. She's 16..you're the one worrying about her medical condition...why should she worry about it? (That was my logic in high school...)
As for college, she should start wearing a medic alert or other medical jewelry, tell the health aide on her floor (dorms) or in the house (sorority) or her roomies (apartment). It's a matter of it being easier to tell someone up front then trying to explain and get them to calm down after the fact. In fact, there's a good thread on college and epilepsy here...you might want to check it out.
As for college, she should start wearing a medic alert or other medical jewelry, tell the health aide on her floor (dorms) or in the house (sorority) or her roomies (apartment). It's a matter of it being easier to tell someone up front then trying to explain and get them to calm down after the fact. In fact, there's a good thread on college and epilepsy here...you might want to check it out.
Melpier
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I've had seizures since age 3 and every time Iwent to the neurologist the asked if I had any kind of warning before my seizure. I do I get a feeling. They then say "can you discribe it". Nope it's just a feeling and in 27 yrs I haven't figured out how to discribe it. I didn't even know it had a name until around 10yrs ago.
Crystal11
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Each person's auras are unique as well as each seizure. Auras usually happen with complex partial seizures. It's basically a simple partial seizure that changes into complex partial and then some people can even have than develope into a GM/grand-mal type seizure, just depends. If you have an aura by itself and nothing else, then its technically a simple partial seizure. But a neurologist would be able to explain this in much more detail. I just know the basics.. I hope it helps some.
I have complex partial seizures and sometimes only have just the aura part- so in my journal i write "aura-no CPs" and that is it.
Auras are technically simple partial seizure without movement while simple partial seizure have some sort of movment or other symptom.. I hope this is not confusing.
Everyone take care and be safe.
Crystal and her guide, Umbro
I have complex partial seizures and sometimes only have just the aura part- so in my journal i write "aura-no CPs" and that is it.
Auras are technically simple partial seizure without movement while simple partial seizure have some sort of movment or other symptom.. I hope this is not confusing.
Everyone take care and be safe.
Crystal and her guide, Umbro
Mrs.My2009
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Reply to skillefer
You know, skillefer, I like the way you think.
I should think that way, but there are those times that I care too much of people's feelings that I completely forget my own. Don't worry you didn't offend me at all. I went through a lot in life and I have hubby as my rock as well as a friend to help me along the way. I met my friend through an Ep Support Group which my family frowned upon saying "haven't I already learned enough from there". It's good to talk to people who understands what I was going through 'coz I couldn't really get that "support" from them. No one understood what I was going through.
I did feel at times as well that I was so "closed-in" because of this. Like..."don't take the bus..you might get a seizure on there" or if it's not that... "don't cook by yourself". I wanted my independence so I took the bus in college and work. Granted I got a seizure on the bus and stopped the entire bus because of it. I was lucky that the driver knew me. He was calm and took care of the situation. I was able to walk off the bus to my destination with no problem after a while. This was all years ago now.
I am cooking now on my own and hubby was all for it. He knows how much I want some independence. My biggest challenge to come is driving a car. I still have fears with that one. My doctor adviced me not to drive and I never did. Now that I've been seizure free for over a month..the thought of driving is hitting me, but I'm still afraid.
Anyway, to clear something up...I meant to say that I was suicidal in 2007 when I was on an AED called Topomax. It wasn't last year (I wrote that wrong)...although the depression did linger. I was taking depression med with AED at the same time. What helped me a lot with the depression was meeting my husband. Like I said he is my rock.
You know, skillefer, I like the way you think.
I should think that way, but there are those times that I care too much of people's feelings that I completely forget my own. Don't worry you didn't offend me at all. I went through a lot in life and I have hubby as my rock as well as a friend to help me along the way. I met my friend through an Ep Support Group which my family frowned upon saying "haven't I already learned enough from there". It's good to talk to people who understands what I was going through 'coz I couldn't really get that "support" from them. No one understood what I was going through.I did feel at times as well that I was so "closed-in" because of this. Like..."don't take the bus..you might get a seizure on there" or if it's not that... "don't cook by yourself". I wanted my independence so I took the bus in college and work. Granted I got a seizure on the bus and stopped the entire bus because of it. I was lucky that the driver knew me. He was calm and took care of the situation. I was able to walk off the bus to my destination with no problem after a while. This was all years ago now.
I am cooking now on my own and hubby was all for it. He knows how much I want some independence. My biggest challenge to come is driving a car. I still have fears with that one. My doctor adviced me not to drive and I never did. Now that I've been seizure free for over a month..the thought of driving is hitting me, but I'm still afraid.
Anyway, to clear something up...I meant to say that I was suicidal in 2007 when I was on an AED called Topomax. It wasn't last year (I wrote that wrong)...although the depression did linger. I was taking depression med with AED at the same time. What helped me a lot with the depression was meeting my husband. Like I said he is my rock.