Seizures But Not Epilepsy Posted: 05-17-05 10:10am
I'm sure that doesn't make sense. But
it's true. My hubby is not an epileptic,
but has seizures. He has a brain
deformity called cavernous hermangiomas.
Blood vessels in his brain were not formed
correctly, and they have small holes in
them similar to a slit in a straw. These
vessels leak, putting pressure on his
brain. He has had three brain surgeries,
one a 8 yrs old, one at 18, and another at
19. One was for avm's and the last two
were for teh cavernous hermangiomas. He
was seizure free, without meds, for 12
years from 19-31. Then suddenly last year
he began having grand mal seizures. All
his seizures are grand mal, and all last
3-5 minutes.
He was taking dliantin, but his body
adjusted to the dose too quickly, and he
was constantly having to go to the dr for
it to be upped. For the last six months
he has been taking topamax, and it has
done well. Now, just three days ago, he
had a grand mal seizure. The dr has
combined topamax and dilantin for him.
I fear that there will be no more time of
being seizure free for him. I think
seizures will be a reality we will have to
live with. But praise god, atleast he's
alive. I'd like to hear from anyone with
suggestions on how to live with seizures.
I'd also love to hear from anyone who has
this disorder, but since it is evident in
less than 1% of the population, thats a
long shot!
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medicwife
New User, Becoming EHEALTHy
Joined: 17 May 2005 Posts: 17 Location: Illinois
Posted: 05-17-05 11:04am
Update: we are now on topamax and
trileptal. Any ideas?
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
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Posted: 05-24-05 20:55pm
How is he doing on topamax and and
trileptal? These meds can be pretty good
for some people. (although for some they
call it dopamax because they feel very
zoned out on it....Weightloss is common
too)
is he doing better on them?
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medicwife
New User, Becoming EHEALTHy
Joined: 17 May 2005 Posts: 17 Location: Illinois
Posted: 05-24-05 21:47pm
He claims not to feel zoned out......But
he's always a little zoned anyway. :d
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chrisp22
New User, Becoming EHEALTHy
Joined: 20 Oct 2005 Posts: 3 Location: england
Avm & Epilepsy Posted: 10-20-05 07:44am
Hi everyone I am new to the site, but
pleased that I found it. I have been
reading the postings and found them a
great help, I was diagnosed with a
cavernous hemangeoma in may 2000, I was
then told that I had partial complex
epilepsy, I have had quite a few problems
since but still coping. I will be keeping
up with the site --my best wishes to you
all, chris :)
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dinowk
New User, Becoming EHEALTHy
Joined: 21 Oct 2005 Posts: 14 Location: NYC
Thanks: 3
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He Had Repeated Seizures, Then He Is Having Epilepsy Posted: 10-21-05 16:02pm
The medication might have controlled the
frequency of his seizures (epilepsy). If
you discontinue his medication, you can
tell whether he is having epilepsy or not.
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Queen of Complications
New User, Becoming EHEALTHy
Joined: 24 Oct 2005 Posts: 13
In Re to Avm Surgery Posted: 10-24-05 22:53pm
I started out having petite mal seizures
as a pre teen, then turned into grand mal
seizures by mid teens... I had the avm
surgery january of 1986... They told me
to take tegretol for a year & i'd be
fine... I still have grand mal seizures
to this very day... I'm currently on
lamictal & find it has less, if not
very little, side effects... I was also
on tegretol, of course, dilantin,
phenobarbital & a few others thought
the names have slipped my mind it's been
so many years & so many combinations
of drugs... My point is, maybe we can
help one another? I find it a rarity to
meet anyone else who has had the avm or
the surgery...
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zacqui
New User, Becoming EHEALTHy
Joined: 26 Oct 2005 Posts: 2 Location: new zealand
Re: Avm & Epilepsy Posted: 10-26-05 02:53am
Hi i'm new to this website...About 10
years ago I was diagnosed with avm.
Doctor said it was too big to be operated
and i've since had an embolization to help
controlled the situation. I had my first
fit, which was how the avm was diagnosed,
ever since i've been seizure free until
this year, 10 years later and all of a
sudden i've had 3 grand mal in 6 months.
Previously been stable on tegretol and now
dr increased my dose of tegretol. Would
like hear from anyone with the same
problems.
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La Paisa
New User, Becoming EHEALTHy
Joined: 25 Nov 2005 Posts: 7 Location: Fort Lauderdale, FL
I Suffer From Seizures And Just Got Pregnant Posted: 11-26-05 14:21pm
I take trileptal, anyone else?
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beingyoume
New User, Becoming EHEALTHy
Joined: 13 Dec 2005 Posts: 9 Location: ohio
Posted: 12-13-05 10:29am
I have been having seizures for around 5
years,started getting them from a
stroke,then got todds paralysis from
consectutive seizures.I am newto even
talking about this,i am taking 3000 mill
of keppra , 600 mill ofdilatin, the only
problem is they keep raising my dilatin
because my levels stay low and still
getting seizures ,i dont say much to
friends and family, frustrating not
driving working,and have so many medicine
changes, I get blood taken every week. My
doctor follows up constantly, what im
asking is ,how do you cope with this, im
not complaing just frustrated ,thank you
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pjrajotte
New User, Becoming EHEALTHy
Joined: 28 Feb 2006 Posts: 2 Location: NY
Posted: 02-28-06 09:56am
Male 34 yrs old and had my 1st seizure
last yr and my 2nd one last week. Dont
have epilepsy but they cant tell me why I
had these seizures. I have been taking
dilantin since the 1st one and have been
switch to trileptal after the second
seizure. I want answers and nobody can
really give me any, its extremely
frustrating!!!!
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shelbe
New User, Becoming EHEALTHy
Joined: 22 Jul 2005 Posts: 39 Location: UK
Thanks: 1
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Hey Posted: 02-28-06 16:33pm
I have been suffering siezures for 6 years
now.They started after I had my
daughter.It was a complicated
birth,emergancy c'section.She was 1 month
premature and she was distressed,which we
later discovered was because I had
pneumonia.Once my daughter was born I
started having siezures,1 every minuite
for 24 hours.Then I went into a coma for
just under a week.I was put on a whole
coctail of med's,consisting of
eppilim,phenytoin&lamictal.I have came
off the eppilim and have now started
taking keppra.My consultant is also trying
to get me off the phenytoin as it is a
dangerous drug.This is proving to be
difficult,but I want to give it another
go.
My point is,i have never bieng diagnosed
with anything.I am treated as an epileptic
but I am not.What I have been told is that
a certain percent of epileptics never get
diagnosed as the part of the brain that is
affected is so small it won't show any
different on the scan's.As frustrating as
this is,i can't do anything.If nothing
shows on all these scans i'v had then what
can be done? :!:
