Hello there
i have a same sensation as your daughter, but it is only when I am in a seizure. I can sometimes hear and feel my body doing weird things, sometimes I dont even have to move and I feel like I am twisting and turning. Like when you have a wet cloth and you ring it out thats how my body feels when I close my eyes at night. My head feels huge like I will fall over from lack of balance and my body feels so small.I am not used to it but I supose that I am to a certain degree. Atleast now when it happens I try not to panic so I know what your daughter means there.

I don't have bad seizures anymore, but when I did my auras were white flickering lights on the right side. They would then turn into a bright spinning ball of different colored flashing lights, and it would procede from there.

Hi
i have had those auras sleepyjen. I never know what a true aura is. But when I was in a seizure a few times I see like lightening effects.

Hello!

I suffer from "grand mall" type of seizures, so I don't quite remember the 'content' of the seizures.
I sometimes often have feelings like the aura which mostly just dissapaers after a while, sometimes little, sometimes stronger feelings.

My aura:
when they are strong I feel like a dizzy feeling and something similar to 'pins and needles' in my head. When they are light I sometimes may feel as if i'm going to lose ballance, but I rarely do.
Sometimes I barely feel the feeling, sometimes stronger, and then the strongest when I become scared of another attack!

Thank you everyone for your replies I love hearing your stories. It makes me feel not so alone and that my daughter is not the only one. She has been on 8 different meds in 3 years and her seizures are uncontrolles still to this day. As of now she is on lamictal which we are weaning her off of, and trileptal which every time is increased causes her to have more seizures. She has missed 40 days of school this last year and I am considering home school this coming up year. But not sure if I can handle it due to the fact that I also have a 1 year old and a 2 year old and they are definatly rambuctious so I am not sure that I can handle it. She has been made fun of at school which I know other children dont understand but it still hurts her and me. Dont get me wrong the school is great, all the teachers went to special classes to learn what to do, and they have held assemblys to try to teach other children, I dont know what is best what do you guys think? She has 2 abnormalities one in the left temperal lobe and the other one is in the parietal lobe. They are not sure which one they are coming from or both. We are doing another mri soon and more 3 day telemetry eeg and pet scan and neurophicologist is also duing test. Thank you for listening I feel better already!

mikki

Dear mikki.
Well I hope all goes well. What are the percentages of tj getting better if she has surgery? Because to me now it sounds like it would be better if she did have the surgery.
Do you have a husband or are you going through this all alone?

Hi!


Considering your daughter and school! I don't quite know how old she is but I have a good idea that will help your daughter and relationship with others.


What you have to do is prepare a lecture or talk. Have diagrams, ask doctors for help, and prepare a talk that would basically scare the listeners, and in the end everyone will consider your daughter a 'hero'! The best would be if your daughter has the talk in front of everyone (all the kids in school). It might seem a little fictionous but believe me!


Have you considered other things besides medication to help the seizures. I found out a couple of things which had dramatic results! Send me a mail if you're interested!


Roberto
slovenia

Mrsmikki25,
hi my heart goes out to your daughter, it is hard to deal with this for everyone involved. Does she see a epilepsy specialist?????

I to have brain abnormalities, a small one on the left and a huge on on the right. Has she ever gone in the hospital for video monitering????

Have you ever taken her to the cleveland clinic????? I highly reccomend looking in to going there, the doc I saw there was awesome. I would still see him if it wasn't so far from home.
jill

My auras were triggered by something in my immediate environment. I would feel as if I could predict the future. A strange flowery smell would hit me. I would feel as if I had a previous dream about the things going on around me. So if someone started talking to me, I thought I had a dream the night before about it, and I knew what they were going to say. I would get queesy and sick to my stomach, dazed, and stare off in the distance. If I would try to do something weird to change the situation to brake up the aura, like dance like a chicken, my brain would already have compensated for it, and incorporated that into the dreamlike trance. After 1-2 min, I would come out of it feeling euphoric, post orgasmic, and tired. I was probably 14 when these started and had them once per 6 months. As I got older they increased as my brain created a biofeedback loop and learned to like them. I got to the point in high school where I was having up to several hundred a day. The doctors tell me now they were mini-brain seizures, but my body was still able to function normally during all this. Eventually, I tipped over the edge from too many of these and had a grand mal and scar tissue formed on the temporal lobe in the memory area, hence the dreamlike aura.

I will first see a flickering ball of light in my left eye and the room would spin backwards, then everything splits in half and separates(the worst part) I get dejavu and hear chanting. Sometimes not all of these things occur. This usually takes 20 minutes or so, so I go to the hospital as my seizures are always status. I havent had a seizure in three years, but am often anxious since I have had kids because of the severity.

My auras come on with a certain sound it will bring it on. A tv show that was on before and brings back memorys to me. They all bring the aura on and than after that the seizure begins. I take a ativan and the seizure will never come on at all it is a great drug to stop it.

Hi. I'm 14 going on 15 and my mother suffers from epilepsy and depression. Honestly, I didn't know till I was like, 10, when she had an episode in the car on the way home from my aunt's wedding.
She and my dad and I were talking about it and my dad was talking when it started. She grew very still and her eyes kind of clouded over. I was so focused on dad that I didnt' notice until my brother started tapping her shoulder and she wouldn't respond. It lasted about a minute and she later described the effects to me...Like a couple of months ago. But she said that when she had the episode, it was like a mist surronded her and she couldn't move. She tried to tell my dad what was going on, when he noticed, but couldn't speak. When it was over her speech was slightly slurred for a minute or two.
I guess i'm just trying to get a better understanding of it. If anyone could explain it better to me, I would be grateful. I need to know what to look for on the outside, other than what I described. (she kind of zones out when she's in deep thought) plus she doesn't talk about stuff like that very often.
Thanks for your help!

Renee

Before my epilepsy was controlled I knew I was going to have a seizure because my right leg got a far away feeling in it. I just knew. They are very hard to describe though. My doctor said I was very lucky and one of the few that had them!
Amy

hello mikki I have had epilepsy from 1973 though now and may have them for life but unforchently I have never had any auras at all - I just black out and either stair off into space or fall over and hit the ground... Some times very hard!

I have a grand mal seizures on the average of about once every 6 or 7 days. The auras I get usually are stronger at the time of a seizure. I can only recall one time having a seizure with no aura warning. Unfortunitly I have that aura feeling 40% of the days of my life and the aura feeling usually last all day long. Stronger at times than others. I have nearly reached the point that I would rather clear up the auras than seizures. My auras are kind of like a mild to strong hot flash. Sometimes breaking out in sweat. Life can really suck at times. Any suggestions about aiding me with these auras?

I am new to this forum group. After reading this thread, I can explain what happened to me when I was young.

I was from a remote countryside of a poor country. At that time, there were no doctors. I was 'sick' with various scary images (3d) growing enomously. I was too young to explain the events. It lasts hours, might be days. I also have had fever as much as my mom could tell. Lucky, it does not impact my school (my academic work). Until 6 years ago, I have had a generalized grand mal seizure and tried several different kinds of medicines. Depakote works. No more auras. But I had another seizure this year. I am still so a worried about my epilepsy. (i got panic attack last year).

I am new to this forum group. After reading this thread, I can explain what happened to me when I was young.

I was from a remote countryside of a poor country. At that time, there were no doctors. I was 'sick' with various scary images (3d) growing enomously. I was too young to explain the events. It lasts hours, might be days. I also have had fever as much as my mom could tell. Lucky, it does not impact my school (my academic work). Until 6 years ago, I have had a generalized grand mal seizure and tried several different kinds of medicines. Depakote works. No more auras. But I had another seizure this year. I am still so a worried about my epilepsy. (i got panic attack last year).

It's very, very difficult to explain my auras, but just hearing this coming from your daughter allows me to relate to her so much, because I feel like we've experienced the same type of thing. Nevertheless, it's difficult for me to describe the nature of my auras now, and i'm 19 years old.

It's not the regular type of dizzy we associate with a headache -- with me, it was as if I was the one sitting still, with my head feeling perfectly okay, but the room around me spinning.

It's just a very odd feeling. (by the way... I had petite mal.) oh, and I also experienced some dejavu.

Is like
when your in the car passenger seat and your going down the road a road that you dont know or that you do know. When you know theres a hill with a dip close your eyes as you are the passenger and when you get a little to fast over it you jump a little and your stomach feels like it goes through your throat, or that take off on a rollercoaster but you gotta have your eyes closed if you dont have epilepsy thats how you will get the feeling of my aura. Mine come all different ways though. I think it changes with each different tablet that the drs put me on. I used to think I was psycic hahaha. I know I am not. But it would feel so real. Dejavu another one and the latest discusting one I hate is the smell of burning hair like a hairdressers, but late at night if I am reall tired my body feel like I am twisting an turning and all feels like I am going to be sick like I am sinking into my bed. Or like I am floating like I hate it. Then I panic thinking that a seizure will follow then my heart begins to race then I cry and get my self all worked up over nothing. Lucky I have such a beautiful partner. To help me through.