Joined: 18 Jun 2004 Posts: 10 Location: Dayton, Oh
Auras - What Are Yours Like? Posted: 06-20-04 22:21pm
Hi my daughter is almost 8 years old and
has epilepsy. She has a hard time
describing her auras to me and this is
what I have gotton from her...
She says that she can hear what is going
on around her, but she can not move or
speak. She calls them dizzy spells but as
she has gotton older she now says that she
is not dizzy just feels funny but not able
to tall me what funny means. Does this
sound familiar to anyone? I would love to
hear what your auras are like even if not
like my daughters.
Thanks
mikki
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Posted: 06-21-04 00:52am
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.
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SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Posted: 06-22-04 01:55am
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.
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Sleepy Jen And Mikki And Tj Posted: 06-22-04 08:05am
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.
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roberto
New User, Becoming EHEALTHy
Joined: 22 Jun 2004 Posts: 6 Location: Slovenia
Aura Posted: 06-22-04 13:51pm
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!
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mrsmikki25
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 10 Location: Dayton, Oh
Thanks Everyone Posted: 06-22-04 23:12pm
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
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hello Mikki Posted: 06-23-04 01:09am
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?
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roberto
New User, Becoming EHEALTHy
Joined: 22 Jun 2004 Posts: 6 Location: Slovenia
Speak Up! Posted: 06-23-04 13:16pm
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!
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-26-04 07:19am
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. If you want I
can give you his name just email me...
Sss48021@
yahoo.Com
jill
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scooter
New User, Becoming EHEALTHy
Joined: 24 Jul 2004 Posts: 3 Location: st. louis
Auras Posted: 07-25-04 00:15am
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.
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Tigerlilyz
New User, Becoming EHEALTHy
Joined: 27 Jul 2004 Posts: 8
My Auras Posted: 07-27-04 10:21am
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.
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limeridge
New User, Becoming EHEALTHy
Joined: 08 Jul 2004 Posts: 10 Location: canada
Posted: 08-11-04 17:53pm
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.
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sailorgirl08
New User, Becoming EHEALTHy
Joined: 19 Aug 2004 Posts: 14 Location: USA
Mom With Epilepsy Posted: 08-20-04 05:59am
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
forensicexplorer@comcast.Net
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nmcowgirl79
New User, Becoming EHEALTHy
Joined: 02 Sep 2004 Posts: 1 Location: New Mexico
Used to Have Them Posted: 09-02-04 14:35pm
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
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JKPorter
New User, Becoming EHEALTHy
Joined: 14 Oct 2004 Posts: 6 Location: Honolulu
Re: Auras - What Are Yours Like? Posted: 10-16-04 12:03pm
mrsmikki25
wrote:
hi my daughter is almost 8
years old and has epilepsy. She has a
hard time describing her auras to me and
this is what I have gotton from her...
She says that she can hear what is going
on around her, but she can not move or
speak. She calls them dizzy spells but
as she has gotton older she now says that
she is not dizzy just feels funny but not
able to tall me what funny means. Does
this sound familiar to anyone? I would
love to hear what your auras are like even
if not like my daughters.
Thanks
mikki
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!
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Ed Wheeldon
New User, Becoming EHEALTHy
Joined: 20 Oct 2005 Posts: 1 Location: Home
Auras Posted: 10-20-05 11:49am
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?
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dinowk
New User, Becoming EHEALTHy
Joined: 21 Oct 2005 Posts: 14 Location: NYC
Thanks: 3
Thanked:0
Now I Understand What I Had In My Past Posted: 10-21-05 16:43pm
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).
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dinowk
New User, Becoming EHEALTHy
Joined: 21 Oct 2005 Posts: 14 Location: NYC
Thanks: 3
Thanked:0
Now I Understand What I Had In My Past Posted: 10-21-05 16:45pm
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).
|
Cirquel
New User, Becoming EHEALTHy
Joined: 21 Oct 2005 Posts: 5 Location: Canada
Re: Auras - What Are Yours Like? Posted: 10-22-05 11:35am
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.
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
My Aura Posted: 10-23-05 06:21am
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.
mikki