Joined: 13 Dec 2003 Posts: 200 Location: Australia
What Do Your Seizures Look Like.? Posted: 05-28-04 12:42pm
Helloeveryone
i was just wondering if you would like to
share with me what your seizures look
like. And how you feel before hand and if
you do anything strange like repeat your
speach or hit your self in a certain part
of the body or what you say. How you
feel. What you think when you are having
a seizure. I would like to know because I
am really confused right now.
For me I dont know when I am going to have
a seizure they are unpredicted, I feel
fear prehaps 3 nights a week. When I have
a grand mal I think I am calling out for
help like its a scarey roller coaster ride
that you just have to wait till it stops
till you can get off. Thats what I tell
myself to stop me from panicing so bad.
Because after all there is nothing that we
can do during. I am sometimes aware of
what is going on, I see flaching lights
that to me look like lightening, usually
greyish blue/red/orange colours. I feel
like my head is letting off steam like on
of those old stove kettles. But ppl
areound me tell me that I am squieling. I
really burn up when I have a seizure.
After my neck hurts sometimes. I can feel
palputations there, but they soon subside.
My blood preasure elevates and my heart
rate pounds so fast, my pupils dialate so
large that no blue colour is visable in my
eyes this lasts for up to 2 hrs after. I
dont realise that I am shaking
uncontrolably convulsing, with my body
going up and down, I am told my back
arches sometimes I feel I want to snapp in
half. I stiffen my leggs out streched and
my arms clench inwards. , I believe that
I am aware but I am told that I am
unresponsive. I phase in and out of
consiousness.I roll from one grand mal to
the next. I find that my breathing after
wards is strange, it takes me a few days
to feel normal again. I am usually
coherant about 10 minutes later but very
drowsy I feel like a dead weight when I
try to get up. I usually fall because my
legs are so wobbly still. I am so thirsty
after.And I can sleep for hours because I
have absolutly no energy.
Sorry its so long. I would just like to
know how you feel and what happens to you.
Thankyou sami
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SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
My Seizures Now And Then Posted: 05-31-04 18:25pm
Hi sami,
your seizures sound really scary. I
guess all seizures are.
Mine aren't so bad anymore for a number of
reasons: (1) I take 3 meds. (2) I had
surgery 5 years ago. (3) the hardest
part: i'm learning how to limit myself.
What I mean is... Instead of taking 5
classes at school (i'm a biomedical
engineering student) plus working
part-time and doing research, I take 4
classes and nothing else. I always feel
like people are going to think i'm just
lazy, but i've learned the hard way that I
just can't handle that much. If I stress
out too much or don't get enough sleep I
pay the price.
Lately I just have simple partials
triggered by light. I am extremely
photosensitive--my seizures start in my
left occipital lobe (so it's all visual
stuff). I'm most sensitive to bright
sunlight (especially if it's flickering
through trees or a fence), flourescent
lighting like in a grocery store, any type
of flashing lights that are colorful or
spinning, or even just a very colorful
environment.
What happens is I see flickering white or
multi-colored lights on the right side.
On a bad day they can bother me on and off
all day long. Sometimes though, they can
be so subtle that I think i'm imagining
it. They're extremely distracting--it's
more difficult to read and hold thoughts,
but I just try my best to ignore them.
Since my surgery it's only gone further
than that about 4 times.
In the past: the white flickering would
quicky turn into a multi-colored spinning
ball of flashing lights that would drift
all the way to the right. It's hard to
describe. (i made a drawing for my
doctor though and the team used it during
my pre-surgical evaluation.) the ball
would stay for a few minutes, my eyes
would pull all the way to the right and I
couldn't pull them straight no matter how
hard I tried. I would lose all
vision--all I could see was that ball of
lights. When I spoke, I couldn't find
any words. I didn't know my name or what
a shoe was. I thought I was making
sense, but people told me I was just
saying jibberish. I felt dizzy,
confused, and disconnected. It helped if
someone held my hand. After the ball
'turned off', my vision would start to
come back from the left. I remained
confused for about an hour after, and then
I would get a pounding migraine. There
was one time I had a grand mal that
started the exact same way.
Sorry this is so long. I've never
written this all out before!
Best wishes,
jen
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hello Posted: 05-31-04 18:56pm
Hello jen.
I hope you are well, this
ball of light that you describe. Now I
get a feeling similar. The only way that
I can describe it is, sometimes when I
write or when I am just doing nothing my
eyes wander off to the left like they roll
there. Then it feels like I am cross
eyed.
I cant stop it at all. It feels like my
eyes are shaking from side to side kinda.
Then they roll back and flutter.
Thats when I see the lightening effect
thats what I call it anyway. Its like a
storm in my head. I cant speak at this
time either. After I feel so strange. My
head aches on one side. And this might
happen alot throught the day. I feel like
this most when I havent had much sleep.
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SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Hi Again. Posted: 05-31-04 19:21pm
That seems a little like mine but not
exactly. My eyelids don't flutter, and
mine starts with the lights. But I
definitely relate to the sleep thing!!!
Sleep is the #1 factor for me, stress is
#2, and eating is probably #3.
I met a girl (many years ago) at an
epilepsy group meeting that had seizures
very similar to yours. Well, I think so.
I don't know how hers felt, but she had
a few while we were talking. She would
stop talking mid-sentence, her eyes would
roll back, and her eyelids would flutter.
In a few seconds she would be fine and
continue the conversation. I don't know
if she got headaches. She was diagnosed
with absence seizures (i think that's the
same as petit mal).
Jen
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hello Everyone And Thankyou For Your Posts Here. Posted: 05-31-04 21:00pm
Yes the stress factor or the anger and
mood swings.
I get so hyperactive for no reason I often
wonder if I have bipolar disorder
i never know when I am stressed only the
doctor does when my blood preasure is
up.My moods change when I get angry at the
slightest thing but I have been like that
my entire life. And I have been told that
it isnt uncommon for women to have mood
related problems with their epilepsy. I
think that everyone would have a mood
problem to a certain extent. I know that
if I am so angry and raising my voice
yelling and screaming with my partner.
She will begin to laugh at me and I will
be like why are you laughing at me and she
will be like because you arent making any
sense at all. All your words are mixed up
like some other language and I dont have a
clue. My mother tells me I need to settle
down lol before I blow my head off.
The tired factor
if I stay up all night the next day I
feel funny in my head,like I am going mad
like I want to rip my hair out like I want
to climb the walls like my eyes are outta
my head and this is when I have weird
vision and feel the sickest. I usually
get nausiated aswell and then my sleep
pattern goes outta control.
Eat healthy wholesome food
if I eat meat and veg and the right stuff
I put on weight with my meds
if I eat like kfc and burgerking/hungry
jacks I go longer without a fit?? And I
dont put on weight.
How weird is that.
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Petit Mal Posted: 06-01-04 02:59am
Hi,
when I was 7 I was diagnosed with petit
mal. My eyes rapidly flutter, but only
for a second or 2. Very rarely does it
interupt me at all. I carry on with
conversations, walking, singing, playing
piano, teaching (i'm a teacher) etc. It's
only if i'm on the phone late at night
that I sometimes lose my train of thought,
but I expect that's somewhat usuall for
people in general. The fluttering doesn't
interfere with my vision at all really
because it's so brief. My doctor had
concerns around this and driving, but i've
told him that a sneeze is more of a
distraction than a little eye flutter.
My doctor has wanted to eliminate these
flutterings completely. But I don't
think that's ever going to happen. I've
noticed over the years that some people
who don't have epilepsy sometimes have
rapid blinking. 2 of my family members do
as do a few others I know. So, this
isn't a huge concern to me.
However, as i've said in other posts, when
I was 19 tonic seizures started. A
grand-mal seizure is a tonic-clonic. For
me i've only had the tonic stage, lasting
30 -45 seconds. I can feel it coming on
hours ahead of time, being really foggy,
unable to have coherant conversations,
being really tired, cold and lots of eye
flutters that do inhibit my vision some.
When the seizure happens, I go unconcious.
A recall a few times that I felt it
start and tried to stop it but of course
couldn't. My head goes to the right, and
my body completely stiffens. I don't
convulse or lose controll of my bladder or
bowels, thankfully. I have bitten my
cheek before because I clamp my jaw down
so tight and I have had fingernail marks
in my hands because I squeeze them so
tight. I gasp for breath and I am always
aware when i'm coming out of it because it
feels like I can't breathe. My heart
pounds so fast! It's only a few minutes
though until my breathing is fine, if
that. After it's all done, despite being
so short, i'm exhausted and all I can do
is sleep! This type of seizure happens
for me once every 18 months or so, and
usually comes in 2's. Last time there
was only 1 though!! I think it was
because I slept right away afterwards and
didn't do anything else. Other times
after recovering from a seizure I wouold
get up a few hours later, try to talk on
the phone, watch tv or whatever, and that
would always send me into another because
I hadn't allowed myself time to rest.
Wow! Sorry, I didn't realize how long
this was!
Just a little more....
Triggers for me are lack of sleep, stress
and food as well. So. Like others have
said, if I try to keep these things in
check and not have too much going on
(which drives me crazy, because I don't
like having to slow down!!) things
usually work out.
Kathy
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SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Mood Problems Posted: 06-02-04 17:31pm
I have a lot of problems with depression
that began about 7 years ago (around the
same time my seizures really started to
interfere with my life). At that time I
couldn't go to school or work for more
than a few weeks at a time. My doctor
told me that under those circumstances it
would be almost strange if I wasn't
depressed. I went for therapy though
(which helped a little) and tried an
antidepressant (which didn't help).
After my surgery things were better and I
was happy, but now and then i'd go into
brief periods of depression. And now
again the last couple months have been
very rough for me. I tried to do more
than I could handle at school, had to drop
classes, and became very very depressed.
I'm very anxious all the time too. (of
course it's hard not to be when you live
in nyc and every night on the news they
talk about another way the terrorists are
planning to kill us this summer!!!)
anyway, i'll probably start getting help
for that soon. My brother has bipolar
disorder so there may be a genetic
connection there, but I don't think i'm
bipolar because i've never to my knowledge
been manic. But then again, i've been on
depakote and lamictal for years and they
are both used to treat bipolar. Could I
have had bipolar disorder all along but
it's just under control? I'm so confused
about my mood problems lately. They are
completely controlling my life.
Kathy, I don't like having to slow down
either!! It's so frustrating! Every so
often I push it and this is what happens!
Be well,
jen
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Posted: 06-02-04 19:54pm
I know exactly what you are saying about
pushing it.
My grand mother suffered from bipolar
disorder and she was in and out of mental
institutions, to my knowledge also her 2
sisters are also bipolar and one of them
has epilepsy also. And her brother.
So I guess it runs in my family but it can
skip generations. I dont know if I am
bipolar.
I went to the doctors again today and the
report from my neuro came back. The neuro
says I am an anxious young woman, and that
I am some what an odd puzzle to put
together.
My doctors are still saying that I am
temporal lobe epileptic.
All my life I can remember me being tense
and worried.
But thats all from the abuse my mother
gave to me as a young child.
Mental abuse.
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aspAddict
New User, Becoming EHEALTHy
Joined: 05 Jun 2004 Posts: 6 Location: IL
Posted: 06-05-04 22:17pm
Ok, so I know this isnt what you mean, but
my seizures end up looking like this:
this happened a few days ago while I was
at work, standing at the server rack - had
a grand mal seizure and took a dive into
some old computers lying next to the
rack...Luckily I missed hitting them
square on, but still managed to scratch
myself up a bit...All because I didnt
sleep well the night before. Needless to
say, I have been sleeping a lot since
then...Just kind of waiting for the
"surreallness" to wear off.
By the way, has anyone else experienced
enhanced senses after a seizure? Ever
since this last one, I swear my sense of
smell is a lot more sensitive...I can
smell the oil on my neighbor's car now
when im on the back porch...Its kinda
freaky to be honest...
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Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
I Posted the Link to This On Another Thread, But...... Posted: 06-12-04 12:27pm
denver—not only is depression common among
individuals with epilepsy, but bipolar
disorder also is present in approximately
10% of these patients, new research shows.
Clinicians caring for people with
epilepsy should therefore fully assess
psychiatric functioning before developing
a long-term treatment plan, according to
investigators.
A glaxosmithkline-funded mail-in survey of
americans indicated that 9.8% of
individuals with epilepsy have been
diagnosed with bipolar disorder. These
results were presented at the 2002 annual
meeting of the american academy of
neurology.
"we did a retrospective study in 1993 that
found something similar," commented ronald
lesser, md, professor of neurology and
neurosurgery, johns hopkins hospital,
baltimore. "there have been other studies
that haven’t found that, but there may be
an increased prevalence of affective
disorders in patients with epilepsy."
primary investigator david blum, md, a
physician in clinical development at
glaxosmithkline, and two of his colleagues
mailed a survey to 127,000 u.S.
Households. The survey included
demographic questions, medical diagnosis
items and the manic-depression
questionnaire (mdq). The investigators
received completed surveys from a total of
180,997 individuals. This included 2,282
individuals who indicated that they had
been diagnosed with either epilepsy or a
"seizure disorder." the respondents were
very similar to those providing the 2000
u.S. Census data with regard to age,
gender, location and household size.
These census data were used as a
control.
Individuals with epilepsy were similar
demographically to those without epilepsy,
with whites being by far the most common
race among respondents. However, the
number of individuals with epilepsy under
the age of 18 was significantly larger
than that of their counterparts in the
general population. Moreover, people with
epilepsy, asthma or diabetes were
significantly more likely to have annual
incomes under $20,000 and significantly
less likely to have incomes over $85,000
than the general population. Those with
both depression and epilepsy fared the
worst at both ends of the income
spectrum.
Overall, 29% of respondents with epilepsy
reported having a diagnosis of depression,
compared to 17% of respondents with
diabetes, 16% of those with asthma and 7%
of respondents without any of these
disorders (p <0.00001 vs. Individuals
with epilepsy). Furthermore, 9.8% of
individuals with epilepsy had a diagnosis
of bipolar disorder, compared to just 2.7%
of individuals with asthma, 2.6% of
individuals with diabetes and 1.2% of
those without these illnesses (p
<0.00001 vs. Individuals with
epilepsy).
The prevalence of bipolar disorder among
the survey respondents was measured with
the mdq. The results revealed that people
with epilepsy scored significantly higher
on all 12 items of the mdq than did survey
respondents with asthma or diabetes, and
also higher than the general american
population. Moreover, while respondents
with depression scored higher on the mdq
than those with epilepsy, people who had
both of these conditions had higher mdq
scores than any other group. In total,
8.1% of respondents with epilepsy reached
the mdq diagnostic threshold for bipolar
disorder.
"it is well known that depressive symptoms
are common in people with epilepsy, but
there had been no previous surveys of how
common bipolar disorder is in this
population," said Dr. Blum. "we found
that manic/hypomanic symptomatology is
more common in people with epilepsy than
in any other group studied except those
with a formal diagnosis of affective
disorder."
dr. Blum and his colleagues are currently
conducting a follow-up survey in order to
expand on the current findings, including
more precisely determining the prevalence
of affective disorders and their impact on
people with epilepsy.
—rosemary frei, msc
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impalass
New User, Becoming EHEALTHy
Joined: 23 Jun 2004 Posts: 2 Location: Texas
My Own Rollercoaster Posted: 06-23-04 23:26pm
Hi! It is like my own rollercoaster. It
tells me ahead of time when it will start.
Sometimes as early as 8 hrs. The signs
are lighthead, like if you are on a
elevator at the time it stops. I get
tremors all mornings and have this strange
feeling that something is about to happen.
Sometimes I tried to move my point of
vision and I can't. I feel like something
is moving inside my head. I close my eyes
and see lights and my eyes try to follow
them and I can't control them, I try to
stop my arms and I can't, I try to control
my breathing and I can't because my chest
don't let me. It is like someone hit me
in my stomach and I cant breathe and them
when I awake I fell dizzy and tired. I
sleep most of the rest of the day. When I
finally awake my body aches. I fell pain
in my chest, arms, all over my body. I
get about 3 to 5 a month. Thats all what
I remember from my last 7 years in this
rollercoaster. I tend to forget things
more easy now. I have to change clothes
and take a long shower because I lose
bowel control and my body is all bruised
up. At the begining I felt so ashame of
myself. Like if I was dirty and hide from
everybody. I even try to kill myself but
i'm ok now. I tried
everything...Dylantin, carbatrol, etc. My
episodes are still uncontrolled but I
learn to cope with it. I know someday
they will discover the cure....I know they
will.........Soon!!!!