Joined: 15 May 2004 Posts: 1 Location: pittsburgh,pa,usa
Can Seizures Kill You ? Posted: 05-15-04 22:34pm
I have nocturnal seizures less than 10
times a year. I switched to zonegran 2
years ago. I am now suffering hair loss
and severe weight loss. When I asked my
dr about trying a med free approach his
responce was "i wouldn't advise that
seizues can kill you!!"
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
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Posted: 05-16-04 08:53am
How much zonegran are you on???? It is
known to have a appetite suppressant side
effect to it..... When I was on it and
topamax togethere I lost so much weight I
look like ghostly.
Alot of the meds will cause you to have a
hair loss problem, taking vitiamins and
folic acid helps.
As for what your doc said about seizures
and no meds.... There is a thing
called.....
Sudden unexplained death in epilepsy
(sudep)?
Sudep is a rare condition in which young
or middle-aged people with epilepsy die
without a clear cause. It accounts for
less than 2% of deaths among people with
epilepsy. The risk is about 1 in 3,000
per year for all people with epilepsy,
though it can be as high as 1 in 300 for
those who have frequent, uncontrollable
seizures and take high doses of seizure
medicines. Sudep is extremely rare in
children.
I hope this anwers your questions.....
There is a wonderful web site full of info
at....
Epilepsy.Com
i have learned alot from there.
Jill
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
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Posted: 05-16-04 09:17am
Cmac,
sorry when I cut and pasted on the last
post it all didn't show up so here it is
again....
Sudden unexplained death in epilepsy
(sudep)?
Sudep is a rare condition in which young
or middle-aged people with epilepsy die
without a clear cause. It accounts for
less than 2% of deaths among people with
epilepsy. The risk is about 1 in 3,000
per year for all people with epilepsy,
though it can be as high as 1 in 300 for
those who have frequent, uncontrollable
seizures and take high doses of seizure
medicines. Sudep is extremely rare in
children.
The person is often found dead in bed and
doesn't appear to have had a convulsive
seizure. (about a third of them do show
evidence of a seizure close to the time of
death.) they are often found lying face
down.
No one is sure about the cause of death in
sudep. Some researchers think that a
seizure causes an irregular heart rhythm.
More recent studies have suggested that
the person may suffocate from impaired
breathing, fluid in the lungs, and being
face down on the bedding.
A person's chances of dying from sudep are
reduced if they take all medicines
regularly and as prescribed.
A few common-sense safety precautions
may minimize the chances of sudep:
take all seizure medicines regularly, as
prescribed.
Avoid heavy alcohol use and recreational
drugs.
Get regular sleep and avoid fatigue.
Becuase sudep is extremely rare in
children, no special precautions during
sleep are needed for them.
Jill
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Second Opinion Posted: 05-19-04 01:25am
Hi,
no doubt there are risks with any medical
condition and medication, however, for
your Dr. To come right out and say
seizures can kill you is a bit extreme in
my opinion. Is this your regular family
dr or a specialist who said this to you?
My dr has never even suggested this as a
possibility. I would suggest that you
look into getting a second opinion. It
sounds to me like your dr isn't interested
in trying anything new with you. He/she
may have their reasons, but again getting
another dr's opinion is always wise when
it comes to serious situations. Good
luck!
Kathy
My wife died 12/16/03, pathologist ruled
that she died from a seizure disorder.
She was 47, we had been married for 20
years, have three children.
Kathyalison, my post is on these boards,
entitled "death by seizure disorder" I
suggest you educate yourself before you
dispense your opinions.
Each year hundreds of people die from
seizures, am finding that many doctors
don't like to upset their patients and
tell them what a high risk for an early
death that epilepsy provides.
Please educate yourself, watch what
medicines you take, anything that lowers
your threshold or is even remotely
proconvulsant avoid, don't let yourself
get too tired, refrain from any sort of
addictive behavior, consequences of
coming down off something or trying to
wean yourself from something brings
seizures. Only medicines you should take
are those that doctor gives you, even
then check it out yourself, many doctors
and shrinks are willing to play the odds
that your system will tolerate stuff that
indeed can kill.
I wish that I had been more proactive, I
thought like ms. Allison prior to 12/16
and as a consequence of thinking like her
my wife is dead and my kids have lost
their mother, had I only educated myself
I might have said something and she might
be alive.
I feel for you, I understand how tough it
is to face reality, you cannot treat your
disease like you treat your sore throat,
the consequences of you screwing up can
kill you.
Kathyalison, You're a Bonehead, Epilepsy Kills !!!! Posted: 05-19-04 08:12am
I know, I lost my wife on 12/16/03, she
died from a seizure disorder, for you to
say that epilepsy and seizures don't kill
is nonsense, tell that to my three
children, I thought like you before she
died, never thought that at age 47 she
would die from a seizure, witnessed her
in convulsions many times, thought it was
funny, did not realize how deadly serious
they were, felt much like you, this will
never kill her, had I not been as stupid
as you she might still be alive.
Don't let another epileptic die by passing
out stupid advice like you dispensed, you
have made me so mad i'm fuming.
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Responding to Your Comments Posted: 05-23-04 09:05am
Bethesdabob,
it's been 2 days since I read your posting
regarding my thoughts. When I first read
your response I was shocked at how vicious
you were towards me and was hurt. So for
the last 2 days i've been mulling over in
my head and re-reading what you wrote and
what I wrote.
Despite being very hurt by your name
calling I want to offer my sincerest
regrets on your wife's passing. The date
of her death stands out to be because I
lost a baby on that very same day. I
can't imagine how horrific that must have
been for you and your family and I am
certain that you must ache for her
everyday. Please understand I meant no
harm in what I wrote. I am aware that
people have died from having seizures. A
famous canadian emilee dionne was one.
So by no means was I suggesting that this
doesn't happen, I was only trying to
suggest that if a person is uncomfortable
with one doctor's opinion then they should
get another.
When I post on this site my only intention
is to try to be encouraging to others. I
apologize for upsetting you and again
after having re-read the postings, do
understand what you're saying. Please
also understand though, that although I
know you are very angry, I was hurt by
what felt like slander towards me.
I hope you and your family find peace with
what has been a terrible tragedy in your
lives.
Kathyalison
I appreciate your kind remarks, sorry to
have come down on you like a ton of
bricks, as a parent I think that the only
thing worse than losing your spouse would
be to lose your child, am very sorry for
your loss, hope that you and your family
have found the strength----
there exists within me a great sorrow and
a large amount of pain, I feel very lost
without my wife, I witnessed her having
many seizures -- never believed however,
that something like epilepsy killed, much
less my wife.
I saw your response and felt that perhaps
you were downplaying the seriousness of
the poster's concerns, and felt it was
necessary to let people know of my
experience, if only one person takes
cognizance of the possible implications of
theirs or their loved one's disease, and
by becoming more proactive saves themself
or that person they love, then
the world benefits.
I apologize for allowing my personal
feelings to rise, it was not courteous to
address you in the manner that I did. I
should have taken a deep breath before I
wrote what I did and offended you, I
understand from reading your reply back to
me the point that you were trying to make,
my point is just that epilepsy kills,
and families suffer.
I appreciate your kind remarks, sorry to
have come down on you like a ton of
bricks, as a parent I think that the only
thing worse than losing your spouse would
be to lose your child, am very sorry for
your loss, hope that you and your family
have found the strength----
there exists within me a great sorrow and
a large amount of pain, I feel very lost
without my wife, I witnessed her having
many seizures -- never believed however,
that something like epilepsy killed, much
less my wife.
I saw your response and felt that perhaps
you were downplaying the seriousness of
the poster's concerns, and felt it was
necessary to let people know of my
experience, if only one person takes
cognizance of the possible implications of
theirs or their loved one's disease, and
by becoming more proactive saves themself
or that person they love, then
the world benefits.
I apologize for allowing my personal
feelings to rise, it was not courteous to
address you in the manner that I did. I
should have taken a deep breath before I
wrote what I did and offended you, I
understand from reading your reply back to
me the point that you were trying to make,
my point is just that epilepsy kills,
and families suffer.
I appreciate your kind remarks, sorry to
have come down on you like a ton of
bricks, as a parent I think that the only
thing worse than losing your spouse would
be to lose your child, am very sorry for
your loss, hope that you and your family
have found the strength----
there exists within me a great sorrow and
a large amount of pain, I feel very lost
without my wife, I witnessed her having
many seizures -- never believed however,
that something like epilepsy killed, much
less my wife.
I saw your response and felt that perhaps
you were downplaying the seriousness of
the poster's concerns, and felt it was
necessary to let people know of my
experience, if only one person takes
cognizance of the possible implications of
theirs or their loved one's disease, and
by becoming more proactive saves themself
or that person they love, then
the world benefits.
I apologize for allowing my personal
feelings to rise, it was not courteous to
address you in the manner that I did. I
should have taken a deep breath before I
wrote what I did and offended you, I
understand from reading your reply back to
me the point that you were trying to make,
my point is just that epilepsy kills,
and families suffer.
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Bethesdabob, Thanks For Your Response Posted: 05-25-04 02:45am
Hi,
even after I responded to you, I continued
to think about how difficult things must
be for and and how difficult it must have
been to think that I was downplaying
something very serious. Again, I do
apologize. I have to admitt when I
originally responded to this post I had
only read the first one, and only skimmed
the other responses. Had I carefully
read them I probably would have written
something very different. I guess I only
read the words and not the whole meaning
of the post. You were right in saying
that I should educate myself more about
this part of epilepsy. I have been
fortunate to not have experienced such
tragedy but you have made me more aware of
this and I thank you for that. After
responding to your comments on this post,
I went back and found your original post
and got an even clearer idea of where you
were coming from and what you experienced
and I have great respect for you. What
you have gone through and have said has
impacted me by making me realize things
that I otherwise wouldn't have and for
that I thank you as well.
I am so so sorry for your loss and I hope
you find the strength you need. If ever
you need an ear to vent, please contact me
and i'll be more than happy to read what
you have to say. I mean that
sincerely.
Bless you and your family,
kathy
Now I feel like a real heel for leveling
the big guns and broadsiding you like I
did, you are not anything like the person
I thought you would be, I see you're a
sweetie after all.
Now I feel like a real heel for leveling
the big guns and broadsiding you like I
did, you are not anything like the person
I thought you would be, I see you're a
sweetie after all.
Sorry for your loss.
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Thanks Bethesdabob! Posted: 05-27-04 02:36am
Thanks for the compliment! It was really
touching. I'm glad we've got this sorted
out and again apologize for upsetting you.
Remember, if you ever need as ear, i'm
here!
I give my best to you and your family,
kathy
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SharesHugs
New User, Becoming EHEALTHy
Joined: 04 Jan 2006 Posts: 1 Location: Michigan
Epilepsy And Death.. Posted: 01-04-06 02:30am
From my readings, I never read that a
person could die because of a seizure.
But a person could die because the
conditions that the person has the seizure
under. Example: if a person has a
seizure while they are alone taking a
bath.
I suggest, as I have read, to take
precautions on doing things like:
being in a bath tub
being in a swimming pool
being up on a ladder.
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
Posted: 01-04-06 12:48pm
Some other precautions are either choosing
not to use a pillow or using one that can
be breathed through.
Most often, a person who dies from sudep
or sudden unexplained or unexpected death
due to epilepsy, dies alone. Often they
are subtherapeutic on their medications
(never skip doses!! Take them as dr
directs),
some deaths are due to an accident either
in car, falls, swimming etc...
Latests statistics are that between 25,000
and 50,000 individuals with epilepsy die
of some related cause each year. There
are 2.7 million americans treated for
epilepsy now.....
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pinklet190
New User, Becoming EHEALTHy
Joined: 27 Jan 2006 Posts: 2
Idk Wat Im Doing! Posted: 01-27-06 18:11pm
(i dont think I did this right)hi.I have
epilepsy, and I know very little about it.
I keep looking things up online, and im
having a hard time finding exactly what I
want to know. Basically, I was wondering
if seizures can kill you, and I also was
wondering, does anybody know of an
epilepsy support group for teens, or
anybody for that matter, anywhere near
western new york, in the
springville-buffalo area? Sometimes I
have total breakdowns, and I dont like to
tell anybody, because I absolutly hate to
burdin the people I love. Im really
hoping this will help, ive been reading
some of the posts and such, and the
majority of the people seem to be very
nice, and I just hope somebody will help
me, that would be wonderful, and if you
cant, thats ok too. I guess thats it!
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pinklet190
New User, Becoming EHEALTHy
Joined: 27 Jan 2006 Posts: 2
Re-wording of the Pervious Posted: 01-27-06 18:19pm
I think I worded that wrong. I have had a
grand mal seizure, and I have the smaller
seizures almost daily, (the eye flutters,
body jolts, and such), and I was just
wondering, if seizures will kill you. My
mom told me this morning that she doesnt
like to leave me alone, because she doesnt
want me to have a seizure and die, and I
knew they could kill you, but then she
said that I would die any ways, and that
she really doesnt know why its helpful to
call and see if im alright. Will seizures
kill me? I would like a percentage, or a
website, or something, if anybody has one,
that would be just great! Again, thanks
to anybody who could possibly help me, and
this website, I think will help me alot in
my life, because im not dealing with
epilepsy to well.So, will they kill me,
not can they, and thats all. Thanks:)
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
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Posted: 02-06-06 13:48pm
There is no clear answer to that. No one
can usually predict for certain.
Percentage of those dying of epilepsy is
fairly small, but it does happen. Best to
use what precautions you can to try and
stay safer.
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ctracyw
New User, Becoming EHEALTHy
Joined: 14 Feb 2006 Posts: 2
Posted: 02-14-06 21:51pm
My first seizure lasted for about 45
minutes and I had to be intibated for 26
hours before I started breathing on my
own. Had I not already been in the
hospital, I surely would have died.
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