Joined: 08 Nov 2003 Posts: 2 Location: Corpus Christi, Texas
Newly Diagnosed And Very Depressed Posted: 11-08-03 16:05pm
Hello, I am 32 years old and had my first
episode this year late july. Since then
this month I have had two more. I do not
remember anything afterwards and I am
told that I just fall to the ground eyes
fluttering and limbs shaking and just look
into space with my eyes open. The first
time it happened it was at a store and I
fell and gave my self a black eye the
second I was at home with only my kids at
home. It scared my 4 year old because I
was bleeding from my mouth and she thought
I had died. It was horrible. The third
time, which was tonight, luckily my
husband was here. After each episode I
am confused and have a really bad headache
and the next day my mucsles are really
sore. This has been horrible because I
am scared to go anywhere w/o my husband or
friends for fear I will have a episode and
leave my kids alone. So I just end up
staying home. My dr put me on lamictal
just last week. Does anyone else have
bad headaches afterwards? They are so
bad I end up going to the er for a shot
usually? If anyone has any tips on how
they live with this I would love to hear
them. I am so stressed and deppressed
and want my old life back. Thnks for
listening to me moan and complain.
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Dobby07
New User, Becoming EHEALTHy
Joined: 06 Oct 2003 Posts: 10 Location: Ohio
Posted: 11-11-03 08:59am
I understand your situation. Even though
for me it was a ear of going back to
school, home just became that safe haven,
so I can understand. Basically the way I
got over it was to wait for the meds to
kick in, and in the meantime, I just made
sure that there was always someone nearby
that would know what to do in the
situation if it arose. For ayour child
being so young, maybe calling a neighbor,
or close by aunt or uncle or grandparent
is the correct approach. Just some
ideas. As for getting back out on your
own, I know its scary, and I know it may
sound strange coming from a 17 year old,
but you just have to get back out there.
The dumb part of that is, you shouldn't be
driving! Not until cleared by a doctor.
Any who. If it makes you feel safer go
to places where people now you, on a
personal level, that way if you need help
they will help you. Also, my parents
want me to get these medical tags that
just say that I have seizures, but i'm not
that outgoing. Hopefully this helps.
If you have any other concerns, write
back. I'll be here sometime soon.
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dondicee
New User, Becoming EHEALTHy
Joined: 14 Nov 2003 Posts: 4
Posted: 11-14-03 19:42pm
I understand what you're going through.
My daughter was about the same age when
she witnessed a seizure of mine. I fell
out of the bed and was hitting the wall
and it frightened her something aweful.
She is now 16 and still feels the need to
speak of it from time to time, so we do.
I let her talk and I comfort her as best I
can. And then I go somewhere quiet and
cry for my little girl who lived through
something very painful that has been
forever erased from my memory. If it
ever truly registered.
Keep your chin up. It's all we can do.
Let's support one another and try to find
answers and share them.
I'm glad I found this place.
Dondi
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phil dennison
Experienced User , Rather EHEALTHy
Joined: 14 Nov 2003 Posts: 71 Location: illinois
Posted: 11-14-03 20:49pm
I was also 32.Same promblem .3 years later
I had brain surgey. It's been a year and
I am epilepsy free. Medication did
nothing!
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jamal
Experienced User , Rather EHEALTHy
Joined: 05 Nov 2003 Posts: 60 Location: oroville,Ca
I'm Right Here Baby Posted: 11-16-03 18:02pm
My children were older 12 & 14 when it
hit me I was almost 39. My life has
changed so much. The worse part is not
driving, but you get use to it after 3
years. I do have those days when I just
want to get out and go, but I have a
wonderful support group. My youngest now
is 18 he is my chauffer once in awhile.
He has been really good about driving me
around, but I try not to ask him unless I
really need him. He is still home with
me, he says he is regis. For college in
jan. So we will see. Or he will just
have to keep paying that rent. Rent or go
to school then I won't charge him. Thats
all I can do for my son. He has been with
me for the last 4 and half years. I left
his father 6 years ago this march. I went
thru a terrible divorce for the first 5
years of dealing with being a epy.
Can't tell you about your med. Have'nt
tried that yet. Go to other topic about
brain surgery under jamal. And read about
my life just be glad you found this and
you have all these people you can talk to.
I went to a carrer day for the ymca and
talked to some kids that were mostly 15
& 16. I was a former salon owner.
When the boys sat down I thought what am I
going to say to them. Well when I told
them I sold the shop after 4 years and
went to work managing a retail clothing
store for 7 years, then I took some time
off. One boy said why did you take the
time off? I told him because I shake and
bake.(you do alot of jerking michael tells
me then we sleep my cousin bree thats 26
always asks me if ive been shaking and
baking latley) of course he looked at me
like I was a nut which I am. I then told
him I had epy. He told me he did to. So
I started to ask him questions about his
meds, hes on 5 different ones hes tired,
slurring speech. Kids make fun of him. I
asked him were is his braclet. Does'nt
wear one. I told him he needs one in case
he has one so people will no what to do.
He does'nt tell his friends he has this.
So I asked his buddies you guys just found
out today about this. They told me yes.
Well then I went into when he comes out of
his next one you guys have to mess with
him like my boyfriend does with me. This
is the way my michael deals with this and
I think for my son too. Jamie did'nt you
feel me hitting in the head with the
ruler? Check to see if you have any wilts
on your head. Good thing we don't have a
bathtub you would have never know blah
blah. I think you have michaels sense of
humor. The boys were cracking up by the
time the groups had to change. Another
group came more boys. This time a red
head I notice and i'm the biggest flirt, I
said to him, man are you cute. Told my
story again. Changed it a bit and told
them I had to take a medical leave for 2
years. They said you look fine to me. I
told them I was a epy. The redhead robert
said so is my mom. I zoned in on him
asked a bunch of questions. Lives with
mom & her boyfriend, his sisters live
with dad. I gave him my# so mom could
call me. At the end of the 2 hr deal .
The senior girl that ask me to do this, I
know her personally thanked us and told
the kids that some of them would probably
get something out of this today or maybe
later in life. Well I know I got the
first group. Then when we asked our
question about our business robert raised
his hand of course I picked him. He was
right. He came up to me after and gave me
his mothers #. Later that night I called
and it rang and rang. 30 min. Later the
phone rang it was robert mothers. She
told me she was in the driveway when he
rode his bike up screaming mom mom I met
this women with seizures you have to call
her. We talked for 30 mins. So I think I
touched to kids that day. You just have
to keep going. It seems like everywhere I
go i'm a magnet to people with this. Its
kinda of weird. I get real emotional when
I met people that has epy or knows
someone. I was crying after robert was
walking away from me. I know he will be
a strong person like my son jarod just
like your kids. So you hand in there
baby. Join a bunco group. Write me jamie
oroville ca.
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Visonti
New User, Becoming EHEALTHy
Joined: 05 Jan 2004 Posts: 3 Location: Florida
Epy Thoughts Posted: 01-05-04 16:11pm
I'm 26 and last year I finally recieved a
formal diagnosis of complicated migraine.
My "complications" are seizures and tis
(transient stroke symptoms). I'd
suspected the stroke issue for about 4
years with only some intermittent
emergency room visits (usually delayed as
much as possible by locking myself in the
bathroom or pretending to go to sleep when
different or more bizarre aura than usual
hits). The only reason I bothered to get
diagnosed at all is that it finally got to
the point where I couldn't hide it,
control it or play it off anymore.
I was slightly premature so the chronic
bronchitis didn't phase anyone. When I
told my parents that my knees were forcing
back they assumed that like every other 5
year old I wanted to stay home and play
with my little brother so I stopped
mentioning it... For six years until I
was almost crippled. It was around then
the lucid dreaming started (made me a
great writer! Lewis carroll had
complicated migraines and agatha christie
had seizures!)
i was a little annoyed when I developed
tinnitus and vertigo that just never went
away when I was seven. (i took comfort in
the fact beethoven was deaf when he
created some of his best work.) I wrote
and taught myself to dance so I wouldn't
get hurt when I fell. I watched and
played football, baseball, the olympics
anything to learn how to keep from getting
hurt. My brother and I played secret
agent so I could learn how to get around
with total sensory deprivation.
When I was eight the abscence seizures
started... My teacher thought I was bored
and gave me more work. I loved her! She
turned me into a math whiz.
In middle school the myoclonic seizures
started and I would swear in all my
coolness that it was cold and and it was a
passing chill.. Later on I had a car
accident and could pass of the worsening
seizure as muscle spasms. I always felt
that what god didn't give me in health he
gave me in brains so I could compensate.
In high school I gave myself asthma by
refusing to tell my parents I was sick for
over a month a virus the flu, head cold, a
chest wall infection and bronchitis, kept
me in near constant fever... I remeber
people telling me they'd found me and
brought me to the infirmary at school...
I barely recall the 10th grade. My lungs
gave out and like now how much oxygen I
get and how many seizures I have seem to
be linked. My parents needless to say
had a fit. Bronchitis, apnea and asthma
are no parents idea of a field day
apparently I however had
things to do, meetings to attend, a
volunteer job, , clubs to run and went to
school 45 minutes away. I was not
concerned and continued to do all this
from bed.
The following year I went away on foreign
exchange. My parents still didn't know I
had seizures. Not through my running a
club for abused kids for 15 years, my
various church activities, fundraising and
charitable programs. Not during the time
I did the books for their business or when
I designed clothes or during the marathon
baking and reading. You can lead a life
that's normal even if it's a little scary.
Everyday you adjust. Everyday you grow
stronger. When your children grow up
they'll look up to you. Not because
you're sick, but because you were mom no
matter what.
Recently my 15 year old brother asked me
why I volunteer. And I told him not
because i'm a good person or because I
have the energy. I'm a horrible person.
Very self centered. But when I see
someone lying alone in a hospital bed with
no one there to talk to them I remember
how lonely it is. I get scared that no
one will visit me or that people won't
talk to me because the won't think I
understand. And it's horrible. When
I see a child that's abandoned I think my
parents didn't have to take a burden like
me home. I go to creches and I play and
read to the kids because I hated being
surrounded by adults who talked over me
like I wasn't there.
And when I see a child that's sick
surrounded by depressed adults I tell them
to cheer up. It's not as bad for them as
it is for you. They'll adjust but what
really kills them is to reassure you that
it's going to be ok and they can tell
whether or not you believe it... It's the
same when you're sick too. I told him I
do what I do because it has to be done and
you never know if it'll be done in time or
at all if you wait for someone else to do
it...
Having epilepsy can be a pain ( I only
drove for 2 years) but it doesn't make
have to you less. It gives you a chance
to be more.
I however had
things to do, meetings to attend, a
volunteer job, , clubs to run and went to
school 45 minutes away. I was not
concerned and continued to do all this
from bed.
