New (scared) Girl In Town Posted: 06-09-04 20:39pm
Hello everyone......I'm new to this forum,
and thought it might be a good place to
get some answers or just talk! I just started
having gran mals on a regular basis
(regular for me...Aka once a month), and
just today I saw a neurologist. He
diagnosed me with a generalized seizure
disorder, and is waiting for me to have an
eeg before he prescribes anything. But
this didn't start happening until I was
22. I will be 24 next friday and i'm so
scared of everything that might happen.
I thought it was due to my hypoglycemia,
but he said I would have more symptoms
before hand. These just sort of sneak up
on me. This last one happened this past
saturday while I was shopping for yarn.
I was looking, & the next thing I know
emt's are surrounding me asking me what
day of the week it is. I cracked my head
on the floor pretty hard, so i'm still
recovering from that.
I read about everyone talking about
auras, but what exactly are they? I
mean, I know they are tell tale signs, but
what are they, & how can I hone in on
them more? I'm just terrified of all
that could possibly happen. This was
only my 4th seizure ever, and there was a
year & a half between my 1st &
2nd....Now I can't drive & I have to
rely on my husband to take me everywhere.
It wouldn't be bad if we lived close to
family, but we just moved 3 months ago
& that's when this all started
happening. I'm sorry if i'm not making
sense, but there's just so much going
through my head. I'm afraid of the
medication once i'm prescribed something,
and i'm scared of what can happen if I
don't take it. No one in my family knows
what i'm going through, since I seem to be
the only one with this problem. If
anyone has any sort of reassurance or any
suggestions that might help make this
easier for me to cope with...I would
really appreciate it.
Thanks for listening!
|
Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
I Know Exactly What You Mean! Posted: 06-10-04 07:20am
Hi,
sorry to hear of all your troubles. I
can completely relate. When I was 7 I
was diagnosed with petit mal. But then
when I was 19 I had my first tonic seizure
(the first stage of a grand mal). It
came as a huge shock. I was in
university at the time. I never really
thought much of it. However, it didn't
go away. That first one happened in the
fall. That spring I was involved with a
big festival where I went several days
with poor meals and lack of sleep which
induced 2 seizures. This was when we
knew something wasn't right and it wasn't
going to go away. I'm 28 now (i'll be 29
in august) and for me seizures seem to
come every 18 months or so. It's always
due to lack of sleep, stress and the like.
This can make it a little scarey
sometimes bacause sometimes lack of sleep
and stress are apart of life. 2 years
ago I had a baby and at first everything
was great, but then I got really sick,
needed emergency surgery and that induced
a couple. Then months later a seizure
happened again due to post partum
depression..Which I learned I had after
the fact.
What I find so frustrating is that i'll be
doing great, independant, driving and
living a "normal" life, then bam....All of
a sudden it feels like the life I knew
disappeared in a matter of seconds. I
teach gr 2/3 part time and was pleased
that I could take my daughter to her
babysitter, drive to school, pick her up
and run errands if I needed to. Now, my
husband has to take her, I have to get
drives to work with other teachers and
make arrangements for someone to pick up
my daughter at the end of the day. I am
lucky that my parents do live across town.
I can't imagine what it must be like for
you. Many times I feel like a complete
burden to my husband and family and feel I
owe apologies quite frequently for being
"a bother". Of course no one else sees
it this way...But for me (and probably
you) it's hard not to feel that way. I
really find it frustrating that I can't
take my daughter places. I had her
enrolled in a music for toddlers class but
now I can't take her because i've not been
able to drive for the last 3 months (my
last seizure was in march) I go to see my
neurologist next friday and am hoping that
he says I only have to wait 6 months
before I can drive rather than a year.
I'm trying in my head to find the words
that express my frustration but there
aren't any. Do you feel the same way?
As for advise, all I can do is tell you
how I cope. I take 1 day at a time and
try to find positives to focus on
(although some days they feel pretty
scarse). I walk a lot more now that the
weather is nice. The hardest part has
been coming to terms will all of this and
accepting it. Although i've been dealing
with this for 10 years, it has only been
recently that i've been able to talk about
it. That is the other thing you should
do, is try to be open about your feelings
and talk about them. No doubt it's hard
and others cannot completley understand no
matter how much they want to. I wish I
could tell you one thing that would make
it all better for you, but I can't. Just
try to tell yourself that you are a
valuable person and what doesn't kill us
only makes us stronger, as the saying
goes.
Good luck and keep in touch.
I hope i've been of some support to you,
kathy
|
Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
I Know Exactly What You Mean! Posted: 06-10-04 07:20am
Hi,
sorry to hear of all your troubles. I
can completely relate. When I was 7 I
was diagnosed with petit mal. But then
when I was 19 I had my first tonic seizure
(the first stage of a grand mal). It
came as a huge shock. I was in
university at the time. I never really
thought much of it. However, it didn't
go away. That first one happened in the
fall. That spring I was involved with a
big festival where I went several days
with poor meals and lack of sleep which
induced 2 seizures. This was when we
knew something wasn't right and it wasn't
going to go away. I'm 28 now (i'll be 29
in august) and for me seizures seem to
come every 18 months or so. It's always
due to lack of sleep, stress and the like.
This can make it a little scarey
sometimes bacause sometimes lack of sleep
and stress are apart of life. 2 years
ago I had a baby and at first everything
was great, but then I got really sick,
needed emergency surgery and that induced
a couple. Then months later a seizure
happened again due to post partum
depression..Which I learned I had after
the fact.
What I find so frustrating is that i'll be
doing great, independant, driving and
living a "normal" life, then bam....All of
a sudden it feels like the life I knew
disappeared in a matter of seconds. I
teach gr 2/3 part time and was pleased
that I could take my daughter to her
babysitter, drive to school, pick her up
and run errands if I needed to. Now, my
husband has to take her, I have to get
drives to work with other teachers and
make arrangements for someone to pick up
my daughter at the end of the day. I am
lucky that my parents do live across town.
I can't imagine what it must be like for
you. Many times I feel like a complete
burden to my husband and family and feel I
owe apologies quite frequently for being
"a bother". Of course no one else sees
it this way...But for me (and probably
you) it's hard not to feel that way. I
really find it frustrating that I can't
take my daughter places. I had her
enrolled in a music for toddlers class but
now I can't take her because i've not been
able to drive for the last 3 months (my
last seizure was in march) I go to see my
neurologist next friday and am hoping that
he says I only have to wait 6 months
before I can drive rather than a year.
I'm trying in my head to find the words
that express my frustration but there
aren't any. Do you feel the same way?
As for advise, all I can do is tell you
how I cope. I take 1 day at a time and
try to find positives to focus on
(although some days they feel pretty
scarse). I walk a lot more now that the
weather is nice. The hardest part has
been coming to terms will all of this and
accepting it. Although i've been dealing
with this for 10 years, it has only been
recently that i've been able to talk about
it. That is the other thing you should
do, is try to be open about your feelings
and talk about them. No doubt it's hard
and others cannot completley understand no
matter how much they want to. I wish I
could tell you one thing that would make
it all better for you, but I can't. Just
try to tell yourself that you are a
valuable person and what doesn't kill us
only makes us stronger, as the saying
goes.
Good luck and keep in touch.
I hope i've been of some support to you,
kathy
|
jueleah
New User, Becoming EHEALTHy
Joined: 09 Jun 2004 Posts: 3 Location: maryland
Thanks For the Reply, Kathy! :) Posted: 06-10-04 08:34am
I know exactly what you mean! Everything
you said just sort of summed up what i've
been feeling. I'm constantly apologizing
to my husband (who is the only person I
know and can rely on where we live), but
i'm lucky that he's so supportive. I'm
so sorry to hear that you aren't able to
take your daughter out. That, too, is
one of my big fears. We're planning on
having kids in a few years, but i'm so
afraid of all the restrictions, and all
the complications that could possibly
occur. Last night, right after I went to
bed, I just cried. I woke my husband up
because I was sobbing so hard, but
everything just became so overwhelming.
He reassured me and said he wouldn't let
anything happen to me, but at the same
time i'm laying there thinking..."you
don't know that, because you don't know
what's going to happen or what i'm going
through". And now with driving
restrictions, I feel like a rat in a cage.
Do they really restrict you from driving
for a year?? But if you only have them
every 18 months or so, that doesn't make
any sense? I hope your neuro allows you
to drive sooner! I've been unable to
drive for only 5 days now & i'm going
crazy. My neuro only restricted me for
90 days, but still, it's like eternity.
It's not that I ever really went anywhere,
but now I don't even have the option.
It's almost like i'm in this impenetrable
bubble....No matter what I do, I can't get
out, and nobody can get in. I eat right
(mainly because of my hypoglycemia so I
don't have much of an option there) I
sleep....Well....All the time now, but it
seems like the minute I slip up just once,
this happens. I've tried to pinpoint the
cause, but it's impossible, isn't it? I
keep thinking it's some medication I took
years ago, or the time I rode a roller
coaster and had a good time, I just don't
know anymore. I try to stay busy, but I
get so anxious and bored. I knit, and I
draw/paint, but I feel like i'm just being
lazy if I do that all day. Does that
make sense? I'm just venting now, so i'm
sorry! But this forum is so awesome,
just because it gives people the
opportunity to connect with others going
through the same thing. And even though
I just joined, I know it's going to help
and fill in that space where others around
me are helpless (as far as understanding).
Just knowing there are people here who
care enough to respond is good enough for
me. so thank you,
kathy! I do wish you the best, and I
hope you are able to enjoy some time out
with your daughter soon!!
Thanks again,
jueleah
|
Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Me Again Posted: 06-10-04 12:24pm
Hi again,
i live in nova scotia and generally the
rule here is 1 year of being seizure free
before driving again. Also, my neuro has
been in touch with the dept. Of motor
vehicles as in order to drive again I need
approval. It really sucks. I'm so
afraid that sometime it's going to come
back saying no I can't drive!! At least
right now I have some hope. When I was
talking with my doctor's assistant she
told me that when I saw them at this
appointment it would be determined if I
had to wait the full year or just 6 months
(which I here is sometimes an option, but
as of yet, hasn't been for me). One
thing that really frustrates me is that it
was just on oct. 31 last year that I got
to drive again after not being able to for
a year. Then, as I said before, I had a
seizure in march and so all of a sudden
couldn't drive again!
In my case it can't be determined what
caused the petit mal in the first place or
what caused it to develop into something
worse. Personally, I think that
something was put in a drink of mine one
night when I was at a small party, because
I wasn't there when the drink was prepared
for me and it was the next day that the
first seizure happened. But i'll never
know.
I'm glad to hear that you and your husband
want to have kids. It's the most
wonderful thing in the world as far as i'm
concerned! I too was really nervous
about the whole thing, as I didn't know
how my body would respond to all the
changes. But i'm pleased to say that I
have never felt as healthy as what I did
when I was pregnant. If at some time you
want to chat about that, let me know...I'd
love to!
Take care,
kathy
|
raf
New User, Becoming EHEALTHy
Joined: 10 Jun 2004 Posts: 4 Location: Torrance, Ca.
Jueleh Posted: 06-11-04 15:04pm
Hi jueleh, I live I california and have
been having gran mal seizures on and off
(mostly off since lamictal) for 23 years.
Like you mine didn't start until my 20's
(26), one night I woke up in the er and
same as you they are asking me what is
your name (i couldn't answer for about 15
min.) I didn't know where I lived and I
barely recognized my wife. When I saw a
neurologist I had eeg's, cat scans, mri's
believe me, the works. They could find no
abnormalities. I was put on dilantin and
my drivers liscence was revoked for one
year. About a year and a half later I had
another one, this time my Dr. Increased
my dosage and included phenobarbatal. I
didn't like that at all . Any way, to get
to the point I went around and around with
this situation until I changed dr's. This
Dr. Prescribed lamictal and I have been
seizure free for years. Reguarding
"auras" I can only describe mine as color
perception changes, one felt like a
strange memory I couldn't quite grasp, or
a slightly nauseated feeling. These
feelings didn't always result in a seizure
but there was no mistake that they weren't
normal. Now for the bright side (yes
there is one) hey were alive! We still
can live a good life, if you look at
what's going on in the world we've got it
pretty good in comparison. After years of
being scared and unsure I just learned to
look at the good things and live one day
at a time. Don't be afraid to lean on
those around you, those that really care
for you (and you will find out who they
are) are more than willing to provide
support. hang in there and
never give up, life is wonderful! I hope
that I didn't babble too much but I tried
to put my experience in a nutshell
(impossible). If you have any questions
or just want to yak I will check this site
dailey. This is the first time I have
ever communicated with anyone else with
the same disorder and it feels good. I
just joined 6/10, I wish I would have done
this years ago but hey, I just look
forward.
Raf good
luck
|
Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Re: New (scared) Girl In Town Posted: 06-12-04 14:10pm
jueleah
wrote:
i read about everyone
talking about auras, but what exactly are
they? I mean, I know they are tell
tale signs, but what are they, & how
can I hone in on them more? I'm just
terrified of all that could possibly
happen. This was only my 4th seizure
ever, and there was a year & a half
between my 1st & 2nd....Now I can't
drive & I have to rely on my husband
to take me everywhere. It wouldn't
be bad if we lived close to family, but we
just moved 3 months ago & that's when
this all started
happening.
as I understand it, auras are actually
simple-partial seizures that precede a
complex-partial or secondary generalized
seizure-- and not everybody gets them.
A secondary generalized seizure is simply
a generalized (tonic-clonic/grand mal)
seizure that is preceded by a
simple-partial and/or complex partial
seizure. That is, it doesn't begin as
a generalized seizure but rather it
progress from a partial seizure to a
generalized seizure. Not everyone
with complex-partial seizures has auras
and not everyone with tonic-clonic
seizures has auras either. I believe
the latter are then referred to as primary
generalized seizures. What I usually
experience during an aura is what is known
as an "epigastric rising." I get a funny
feeling in my abdomen (my tummy) and it
rises to my face. Sometimes the feeling
also goes down as well-- all the way to my
feet. It feels like a roller coaster
ride. (that funny feeling you get in
your stomach). I get butterflies in my
stomach. Sometimes, I get scared, but my
meds are pretty good at controlling the
fear and that part of it is pretty mild
anymore. Sometimes there is no fear at
all-- just weird physical feelings.
This can make a big difference on how safe
it might be in the future for you to drive
because an aura can give a person a long
warning period. Just the same, even
with my auras, I don't drive. It's
just not, in my opinion, worth the risk.
Perhaps when i've really got them well
under control-- and for a long period of
time (probably even longer than is
required by law), I will reconsider, but
at this time, I would rather not take that
chance with my life or with others'.
I know the feeling of being a burden on
others. (it stinks). I also live
far away from family and have to depend on
people to take me places I "ought to be
able to go on my own." (and i'm divorced
with children). Very frustrating.
I ride my bike a quite a bit but again, I
have a warning period. A good friend
of mine has complex-partial seizures only.
(no aura). He has to be much
more careful than I do. He doesn't
ride a bike because the risks for him are
too great.
|
raf
New User, Becoming EHEALTHy
Joined: 10 Jun 2004 Posts: 4 Location: Torrance, Ca.
Alice In Wonderland Posted: 06-13-04 01:27am
Well Dr. Please go into more detail
|
raf
New User, Becoming EHEALTHy
Joined: 10 Jun 2004 Posts: 4 Location: Torrance, Ca.
Alice In Wonderland Posted: 06-13-04 01:31am
Don't act like something that your not
|
Mimbles
New User, Becoming EHEALTHy
Joined: 13 Jun 2004 Posts: 4
Posted: 06-14-04 15:17pm
Hi jueleah,
i've been having grand mals since I was
14, so I was never able to get my licence
at all - my boyfriend let me try driving
his car on a deserted road last year
though, and it felt like a whole new
world; I was so thrilled! I know exactly
how you feel. When I first started
having seizures, I thought there was
something wrong with me and that my life
was over. I was always forgetting to
take my meds, and my parents were
convinced that I could control the
seizures if I would just remain calm, so I
was made to feel rather freakish. I have
the same guilty feeling when I go out with
my friends and I never have to be the
designated driver, or when my family makes
arrangements to pick me up instead of
having me take the bus over to visit them,
but what I realized is that the people you
care about and who care about you probably
feel glad that they can come to your aid,
and enjoy the opportunity to help, as
opposed to considering you a burden. I
find leaving out the appologies and really
thanking them from the bottom of my heart
makes the situation a lot less awkward.
As for auras, I don't think i've ever had
any; I used to twitch a lot before a
seizure, and my arm would go numb, but I
just took that as the onset before I
blacked out. Now I only have seizures in
my sleep, but i'm still waiting on the
licence thing. The best advice I have
for you is to think positively; instead of
saying "i hope I don't have a seizure" say
"i hope I continue to do well". Even if
you do have seizures, embracing the
learning experience instead of hating the
discomfort or embarrassment will help you
out. (i know it might sound hokey, but
it does help) like someone else's
response said, take it one day at a time,
and never forget that you aren't alone
|
jueleah
New User, Becoming EHEALTHy
Joined: 09 Jun 2004 Posts: 3 Location: maryland
Thank You All.... Posted: 06-14-04 16:05pm
I haven't responded to the last few posts
on here, because i've just been reading
everything & taking it all in. You
are all so encouraging, and
positive.....It really helps. :d so
thank you!! I'm always having the "poor
me's"....But then I read what everyone
else is going through, and I realize that
a) i'm not alone & b) a lot of people
are much worse off than I am.....Although
it doesn't help that I tend to be a very
empathetic person, so I pretty much feel
what everyone else is feeling.
and I know i'll probably never know
exactly why this happened to me, but it
obviously happened for a reason. But, I
go in for an eeg tomorrow.....It'll be my
first......So i'm a little nervous, a
little anxious....& very hopeful.
Not too hopeful, because so far all of my
tests have been normal...But ya never
know.
I just started
having gran mals on a regular basis
(regular for me...Aka once a month), and
just today I saw a neurologist. He
diagnosed me with a generalized seizure
disorder, and is waiting for me to have an
eeg before he prescribes anything. But
this didn't start happening until I was
22. I will be 24 next friday and i'm so
scared of everything that might happen.
I thought it was due to my hypoglycemia,
but he said I would have more symptoms
before hand. These just sort of sneak up
on me. This last one happened this past
saturday while I was shopping for yarn.
I was looking, & the next thing I know
emt's are surrounding me asking me what
day of the week it is. I cracked my head
on the floor pretty hard, so i'm still
recovering from that.
. Any way, to get
to the point I went around and around with
this situation until I changed dr's. This
Dr. Prescribed lamictal and I have been
seizure free for years. Reguarding
"auras" I can only describe mine as color
perception changes, one felt like a
strange memory I couldn't quite grasp, or
a slightly nauseated feeling. These
feelings didn't always result in a seizure
but there was no mistake that they weren't
normal. Now for the bright side (yes
there is one) hey were alive! We still
can live a good life, if you look at
what's going on in the world we've got it
pretty good in comparison. After years of
being scared and unsure I just learned to
look at the good things and live one day
at a time. Don't be afraid to lean on
those around you, those that really care
for you (and you will find out who they
are) are more than willing to provide
support. 
